Carter's Journey through Autism

Fake ABA Update

2012-02-09T21:41:00.009-05:00

We've been working with what I call "Fake ABA" therapist since November. I call it "fake" only to differentiate it from the ABA where they actually work directly with Carter. We meet with a therapist once every 2 weeks for 6 months to review recommendations of treatment that Brad and I administer. The "Real ABA" is done by therapist who work directly with Carter.

Some of her recommendations appear to be helping. We have posted rules for Carter on the use of the computer and TV. If he slaps his head, bangs his head or screams he is no longer allowed to use whatever he was using that caused the behaviour. We also have "House Rules" which is for the whole family. I've listed that no head banging, no face slapping and no screaming is allowed in the house. All this has helped us to set expected limits for Carter and I think he is getting use to it. It hasn't "cured" the behaviours but it certainly makes it easier when he knows what is expected of him.

The therapist did provide us with a sheet with different facial expressions that Carter was to learn. After a couple of days Carter got quite upset by the faces. I'm not sure why but it isn't all bad news. It's helped open up the conversation with him about how he is feeling. I ask him why he's angry and it seems to make him stop and think. He isn't able to tell us most of the time why he's mad but it's a start.

The "Fake ABA" ends after 6 months but we can get back on the waiting list if we want. It really is time intensive because we have to meet so often and then when the treatment recommendations are ready it feels like a flood of ideas/work. The problem with having such a short period of time is that it feels like a big rush to get the treatment ideas tried. I hope things get easier and Carter improves with the ideas.

Sensory OT Appt

2012-02-06T19:30:00.005-05:00

We've been going to the Sensory Occupational Therapist again. We've had three sessions so far and will have at least one more.

I had given the school a weighted lap pillow that really helps Carter to focus and reduces his behaviours. The school seems at a loss at how to get Carter to allow them to use it. At school he moves the pillow off of him and doesn't seem to like it. When I've used it or when we use it in Sensory Occupational therapy he seems to really do well with it. The therapist and I have been trying to brainstorm to figure out how to help the school but nothing seems to work so far. The therapist lent me their weighted pillow that is a shape of a crescent instead of a rectangle like mine. The teacher report today that Carter didn't like it. Not being able to go into the school it's hard to know how to fix this.

The appointments generally go very well. Carter likes the activities like when she wraps him in a very large bean bag. She has him pull on a large rope that brings the swing up high enough so he can swing on it. She does matching activities and reading with him. Overall this is probably the funnest appointment that Carter gets to go on. This session didn't go very well. Carter had a lot of problems doing what he was asked especially when having to sit at the table. I'm not sure how many sessions that are left but I know it isn't much. We had to wait about 2 years to get the therapy but the total number of sessions is only 12 I believe. I guess it isn't surprising considering it is government funded. They only have one location in 2 towns over so it's a bit of a trek.

I need to work with Carter more regarding the calming exercises she has given us. I know they help but I find it difficult to remember to actually do them.

Gut Flora issues

2012-02-03T18:49:00.007-05:00

Despite the fact that we have been trying to heal Carter's gut the past almost 4 years we still haven't been successful. His stool test showed he doesn't have enough good bacteria and has some very bad bacteria in his system. The first step of biomedical treatment is healing the gut and so far we haven't gotten very far.

I was told about camel milk by Dana Laake (author of GFCF cookbook) and didn't think much of it. My first thought was that I've never seen it for sale around where we live. I actually never went looking for it because I'm always wary of bringing milk into Carter's diet because he is already getting goat milk yogurt every day. I plan to do some research and see if it might help Carter.

I really want to try making sauerkraut but I'm not sure if he'll go for the sour taste. I love it myself but that's no indicator that he'll like it. Fermented foods are great for healing the gut so I really need to at least try it.

I need to introduce more foods to Carter's diet. He is getting more interested in other foods so I think he's ready for something new. I have been giving him some green peppers which he really seems to like. I want him to have a more balanced diet and have a better chance of healing his gut.

Outgrowing Autism

2012-01-29T19:56:00.006-05:00

I recently read in the news about the possibility of outgrowing autism. My first thought was that this is probably the most ridiculous thing I've ever heard. The ideas become more wild and crazy and yet everyone is supposed to believe it.

I imagine the reason why this idea is being floated around in the media is to explain kids who recover from autism. It can't possibly be that biomedical treatment or therapy works? It can't be all the effort parents go through to get the help their child needs? The best explanation is that autism isn't really all that bad and it's something they can outgrow.

With the changes to the DSM by removing Asperger's and PDD-NOS the numbers of newly diagnosed children will plummet. Those that are left will just outgrown the condition so that means the government no longer has to provide services to help treat them... right? All that money can go to conditions that need cures ... right?

It seems that misinformation is the only information that is out there for autism now. The saddest thing is that the ones that pay for it the most are the children who have it and the families trying to cope with it. We already get ignored by most people imagine when everyone believes autism can be outgrown just like biting nails!

Dentist Visit

2012-01-26T20:19:00.008-05:00

Carter had his much long overdue dentist visit yesterday. We hadn't brought him to the dentist for awhile because we were looking for a holistic dentist. Brad found one but the wait before we could get in was months. Brad had already been to see this dentist and really liked him.

Carter did fairly well. He seems to be easier to coax through situations he doesn't like. The dental hygienist was very knowledgeable about autism and how Carter might react to what she was doing. Carter loved the sunglasses she had him wear. At one point he laid back with his hands behind his head. He was losing his "grip" towards the end of the appointment but he got through it pretty well. When it was time for the dentist to see him he didn't want to get into the chair. I had him lay on top of my lap and he really liked that. He wanted the sunglasses again because of the bright light. The dentist was impressed by his good teeth. He said a lot of children with autism show up with a mouth full of cavities. It's good to know that Carter isn't one of those kids. When it was my turn in the dentist chair Carter wanted me to wear sunglasses too. I thought that was really cute!

The dentist is studying to be a Naturopathic Doctor so it was interesting to talk with him about my kids and biomedical treatment. He seems very concerned about what is happening with kids and how their medical management is often not adequate. I found the staff very kind and understanding so it made the appointment that much easier. I hope that Carter will eventually get used to these visits and not have a problem with them. Carter no longer has a problem with hair cuts now that he's had so many. I'm hoping the same thing will happen with dentist appointments.

Respite Care

2012-01-23T20:32:00.009-05:00

The only funding we have been able to qualify for is respite care. Originally we used it for summer camp. I was always very frustrated that this was the only funding we got. Not that other types of funding wouldn't be welcome but I am glad we have at least this much.

It wasn't something I was familiar with before Carter's diagnosis. Most agencies or charities provide respite funding but nothing for therapy. I have often thought that if we got therapy funding we wouldn't need respite funding. I appreciate any funding we can get. I am grateful but wished it was different at the same time.

The funding has allowed Brad and I to go out alone and get a well needed break. Autism can be the most difficult thing to manage and coping with all that is included isn't always easy. As a couple you could get lost in the drama and issues relating to caring for a kid like Carter. We love him dearly along with our other kids. It is so important to take time for yourselves. I think couples often lose out on special and necessary time for themselves. It may feel like you couldn't possibly have someone else watch your child with autism. It really has to happen for your own sanity. It isn't being selfish at all. I look forward to being able to sit with Brad and think of us. We all deserve a mental health break.

ABA Orientation Session

2012-01-19T22:31:00.007-05:00

Last night we attended the gov't ABA orientation session. This session reviewed the gov't program and what to expect at all stages of the wait and treatment process. As no surprise to me the session was held a couple of cities away. Anything to do with treatment or Doctors is never where we live. I've never figured out why that is.

It was difficult at times to suppress my anger at what I was hearing. I didn't even appreciate the lighthearted joking that was going on by the staff. All I could think was that this was a joke. They start out by telling us that the wait for gov't ABA is at least 4 years and then say that there isn't enough research to prove ABA is effective over the age of 6. Most kids don't get picked up for service by age 6 so they are basically telling us this therapy we have been desperately waiting for might not help much. They said that parents fought hard to change the age limit of the program which was 6 and is now 18 years old. If parents didn't fight then no one would ever get therapy. What was the point of that? These stupid parents want therapy even though there's no proof that it will help there 7+ year old child? These people want ABA for their kids immediately on diagnosis but they don't get that. What are parents supposed to do?

Next they tell us that when a spot opens up we may have to drive very far every day to bring our child to therapy. The spots open up in a particular location and then you have to decide if you can get them there for the next year or two. As no surprise there isn't a location in our city so once again we'll have a long way to travel if we can get Carter to therapy.

They talked a lot about how ABA might not be the right therapy for your kids. Did they talk about what your alternatives might be if they decide after 4 years of waiting that ABA isn't right for your kid? No. That's the major therapy that is supposed to help kids with autism and now they are telling us it might not work for your kid. What kind of information is that? I've never heard that ABA isn't the right therapy for kids with autism. The reason why they say that is that they have something called a 'benchmark'. The kid has to perform at a certain level to continue getting gov't funded ABA. If they don't progress fast enough they get discharged from therapy. If they progress too fast they get discharged from service. There is a middle spot where you want your kid to exist so that they get the most therapy out of these people.

They don't tell you that the 20 hours a week that they provide is not even close to the amount of hours that is "evidence based". Kids need at least 30 hours a week and it's better if it's closer to 40 hours. They talked a lot about "evidenced based" therapy. They don't practice it so why pretend? "Evidenced based" therapy for ABA is that they start therapy between the ages of 2 and 4. That isn't happening.

I could go on and on about the garbage that they spewed all night. The fact is that no parent dare say anything negative about the current program because they don't want their child to suffer for it. They encouraged us to write the government about the wait list. They said that in the past few years that the funding has increased 100%. I wrote the government and their response was to pat themselves on the back for what they have done. If you replace the word autism with cancer. If you had to wait 4 years for cancer treatment and you told the government that wasn't acceptable and their response was what a great job they are already doing. What would you think? ..... Exactly!!!

He understands

2012-01-16T21:28:00.014-05:00

When we met with Carter's teacher a couple of months ago he told us that Carter's reading level was above his grade. His comprehension was supposed to be below grade level. It meant that he could read well but he didn't understand what he was reading. At the time it didn't register what they were trying to tell us but soon afterwards I realized what they were saying. I didn't agree with them at all!!!

I thought to myself how could they determine his comprehension when Carter usually doesn't answer questions he is asked. That's the biggest way you would figure out his comprehension. Obviously some of the more subtle signs they were missing.

I have read with Carter every night before he goes to bed for at least 6 months now. He laughs at what is read, smiles, points and is very interactive with the story. Last night when the line read "Shout". He shouted the word "shout". If he didn't understand what the word meant then he wouldn't have shouted. Just because he can't answer questions regarding a story doesn't mean he doesn't understand it.

I have often read that professionals try to administer IQ tests on non verbal children with autism and then label them mentally deficient. Why would a logical thinking person administer a verbal test to a person who isn't verbal? Why would you assume that if they don't answer your questions they don't know the answer? How many times do you ask a person a question and when they don't answer you assume they must be mentally incapable? Just because a person has autism doesn't mean they don't have the answers in their brain.

Carter knows and understands what he is reading. Tonight he looked at the front of one of his books. It said "This book belongs to:" and had a blank line below. He read the line and then said "me, m e". At first I didn't quite get what he was saying and then I realized. He read the line "This book belongs to:" and he knew that this book belonged to him. "This book belongs to me". I got him a pencil and he wrote the word "ME" on the line beneathe the words. I thought he was really clever and I knew without a doubt that he understands what he reads. He understands a lot more than he is given credit for.

Tonight I'm proud of my little boy. He is such a smart little boy and I hope one day that everyone will acknowledge it.

Acetaminophen & Autism

2012-01-11T22:52:00.013-05:00

I just finished hearing a talk by William Shaw PhD regarding acetaminophen and autism.

He said that acetaminophen is bad for the body when used at the same time as administering a vaccine. It lowers glutathione and does other damage so that the body can't detoxify the toxins in vaccines. Some genetic predispositions can make the combination of acetaminophen and vaccines a bad combination. He doesn't suggest this is the cause of all autisms but in some cases.

I had heard too late for Carter that acetaminophen should not be used because it prevents the body from detoxifying properly. This is really critical when a child gets a vaccine. If the body can't get rid of these toxins then it can have a bad impact on the body such as asthma or autism.

I missed the first hour because I got messed up on the timezone. It was about why Cuba has such a low rate of autism. The practice there is not to administer acetaminophen before a vaccine or at first sign of fever. They usually wait 3 or 4 days or a very high fever before administering anything to treat it. The body needs a fever because it is an immune response. It isn't something we want to quench but let it run its course. It's a normal reaction of the body.

The really disturbing thing I heard was that the person who runs Autism Research Institute (ARI), Jane Johnson, is married to one of the owners of Johnson & Johnson. They are manufactors of acetaminophen such as Tempra. Which is what I always used for my kids. She caused Dr. Andrew Wakefield to leave 'Thoughtful House'. Also, I heard from another source that she has gotten rid of most of the MDs from the ARI organization. I find this really worrisome. Can't we rely on anyone?

Update on Secretin

2012-01-10T23:28:00.002-05:00

Carter got his third infusion of secretin yesterday. It went well and there were no issues. Carter seemed a little tired on the way home but he has been sick for the past few days so there's no way to say it was related to the secretin.

Today was his first day back to school. I wasn't sure how he'd do because he's been off of school for 2 1/2 weeks. I know he enjoys school and the structure it gives him. With him being sick I wasn't sure if it was a good idea. He had an exceptional hard day and even when he was at daycare afterwards.

I'm not sure if his behaviour is due to being sick or the secretin. He has been saying his stomach hurts occasionally since he started the secretin. That wasn't something he ever said before we started the secretin. Carter still looks very sick so I'm not sure why his behaviour is so difficult today.

Now it's a waiting game as to whether or not the secretin is helping. I hope we can tell definitively whether or not to continue with the treatment. We'll get the results from the stool test in a couple of weeks so hopefully that will help. I'm really hoping secretin will make a difference but only time will tell.

It's about time

2012-01-08T16:51:00.002-05:00

I quickly read an article that stated Dr. Wakefield is suing Brian Deer and BMJ's Fiona Godlee. I thought to myself that it was about time but then realized that even though this is necessary one never knows where it will end up.

I have gotten used to the fact that the truth about matters doesn't always matter. A lie to some is what they want to believe. The term 'the hungry lie' really is an apt description of what goes on in the mainstream media. Take a popular lie and feed it so much that in the end no one has any clue what the truth is. People assume if it's in the news then it's true but so often it isn't. I'm not about conspiracy theories but there are a lot of bad people running parts of organizations and governments that most people don't know about.

I just hope that the court case will finally bring out the truth but I'm not so sure it will. Some truths are too big and people don't want to know them.

Financial Impact

2012-01-04T07:39:00.007-05:00

One side of autism I haven't really focused on is the financial impact it has. I probably have mentioned from time to time not being able to afford things such as ABA. The financial impact of having a child with autism is devastating.

Despite the fact that we paid for 2 years of ABA we never could afford it. We borrowed most of the money to cover the cost. ABA is so expensive but is so important for kids like Carter. We knew going in that it would be difficult if not impossible to pay off what we owe due to the therapy. It's like buying 3 to 4 very nice brand new cars. The cost is hard to comprehend for most people because they don't realize what is involved with ABA. It is very time intensive and requires a lot of preparation and it is one on one therapy which is expensive no matter what discipline you deal with.

We paid for speech therapy for many years and despite having some coverage it really doesn't go very far. The coverage typically lasts only 1 1/2 months so you can see how expensive it is. Speech therapy is so critical because it helps kids like Carter get the skills they require to communicate. Imagine not being able to tell people what you want, what is wrong and how you feel? It's a frustration that not a lot of people understand.

Treating Carter biomedically has been very expensive as well. It has given Carter so many improvements but a lot of it isn't covered by any medical plan. So many don't understand that autism for a lot of kids is a medical diagnosis which requires treatment. Carter is no exception to that idea. He has a lot of underlying conditions that need to be treated. He has genetic susceptibilities that need to be investigated and supported by treatment.

After all this being said the biggest impact is trying to manage financially after paying for all these things. Having 3 kids, a mortgage, failing cars and everything else has made it tough. I haven't got a raise in 4 years and a lot of the people I work with haven't got a raise either. I'm earning less than I did 4 years ago because I haven't even gotten a cost of living increase. Gas prices have skyrocketed and this has a big impact on us as well. We have to drive Carter to his appointments which really adds up.

Looking back I don't regret the financial choices we made for Carter. He needed and deserved all the help we gave him. We aren't a unique family so this is being replayed all over the place. It's a sad fact of autism which isn't likely to change soon. Governments continue to hide their heads in the sand and aren't supporting kids with autism with the therapies that they need. It truly is a travesty.

Time marches on

2011-12-31T09:07:00.003-05:00

It's hard to imagine sometimes how much time has past. As this year comes to an end I can't help but to look back and wonder how it went by so fast.

Carter was diagnosed at age 2 and he'll be turning 7 next year. Wow! I can't wrap my mind around how much time has past. He was almost 3 years old when he was diagnosed so it will be 4 years come April 1st, 2012.

I'm not sure where I expected we'd be at this point. I certainly expected he'd be picked up for the government funded ABA by now. I never thought about him attending school and how that would change his world.

I've personally changed so much these past 3 1/2 years. It's been a difficult journey that can't be summarized in just a few lines. I never thought I lived a typical life but I certainly had dreams of what my family life would look like. We'd be taking trips to Disney World and enjoying all that life can offer. My dreams have changed and seem so much more simple. I took for granted that life would have a certain direction. I knew there would be ups and downs but I never imagined it like this.

Carter has come so far since we found out he had autism. He is a delightful little boy who has a smile that warms the heart. My dreams for him are big but I know he can reach them. I love you little guy!

Goals for 2012

2011-12-26T11:15:00.000-05:00

I checked my goals for Carter for 2011 and I see that we’ve accomplished part of our goals.

The first goal for 2011 was to help Carter increase his words and the length of his sentences. We have been working hard with getting him to use the word “I” when asking for things and he almost uses it all the time now. He often would say “Do you want ...”when he really was asking for himself. Carter loves to read so we started to read with him every night. He picks the book and then we share the reading with him. He always does a great job and I find as time as gone on he is more focused at the reading. When we first started he used to get distracted very easily. Now when he speaks he sometimes says things like “Open the door, said Mommy”. Which we all laugh at but it shows that reading is helping him with the words he finds to use each day. He has started to mumble when reading so we need to work on that. He stopped Speech Therapy when ABA ended on September 2nd, 2011. We couldn’t afford to continue Speech therapy and hope to start it up in 2012. I think this goal was an ongoing goal but we’ve seen definite improvements.

The second goal for 2011 was to get Carter involved with more “typical” activities. I believe we have improved with giving him these opportunities. We have brought him to 2 parties which he really enjoyed. He was able to manage all the activities at the party and have a good time. He didn’t tantrum or show frustrations with what was going on. The have brought him to more stores but not too much and he has gone to an indoor playground at least a couple of times so we’re getting there. The biggest thing we did this year with him was bring him back to Disney World and brought him to Fort Myers Beach. When we brought him to Disney World in September 2008 it was a very difficult experience. He couldn’t handle the rides and all the sensory overload. We never lasted to lunch with him in the parks. I was very apprehensive about bringing him again even though he has improved so much since the last trip. Carter did a great job! One of us always took him back to our resort by mid afternoon so that he wasn’t pushed to his limit. I think he could have lasted longer but we didn’t want to leave the park when he was upset and leave it with bad memories. Carter loved going on the rides and meeting the characters. He ate the food we brought him and even was able to eat some of the food in the restaurant. Our last day was Magic Kingdom and it was his best day. He went on a lot of rides and really enjoyed himself. I thought by the fourth day he would be finding it all very difficult but he didn’t. It was a joy to see him enjoying himself and that we as a family could actually enjoy a family vacation together. Our time at the beach was really fun for Carter. He loved the pool and especially the Gulf of Mexico. He enjoyed being in the Gulf and loved the sand. Even though we were gone for quite a few days on our trip he did very well. Carter did have some difficulties while we drove but I think he did an amazing job anyway! I still think we can work harder with getting him out in the community but I think going to Disney World showed us he really has improved a lot over the past 3 years.

My first goal for 2012 for Carter is to no longer head bang and face slap. This is a really big goal because it has been something he has been struggling with for the past 3 years. It hasn’t been something he has done all the time so I’m not sure why he stops or when he begins to do it. We are working with the Fake ABA people and the Sensory Occupational Therapist on this and hopefully they can provide us with some help. Also, the blood test we plan to perform regarding the ‘Cerebral Folate Deficiency’ could help us with this. One of the symptoms of this condition can be head banging and face slapping so it would be great if we could see if this could help as well. We should have the real ABA starting around September 2012 so if all else fails the 20 hours of ABA he should be getting may help with this. I’m afraid to put this as a goal but it really is important for Carter to find a better way to deal with his frustrations.

My second goal is to provide Carter is to get more out of school in an academic way. I hope that he can achieve improvement in reading, writing and math. The teacher says he is a perfectionist so I’m hoping that shows he has the desire and drive to learn and do things right. His current IEP does include a lot of life skills training so I’m hoping he’ll be able to manage more of those on his own and focus more on academic learning. Carter is so smart and I know if he is able to focus and has the desire to improve that he’ll learn a lot at school. I believe he is in an environment at school that will allow him to excel in whatever he is capable of.

I think 2012 will be a big year for Carter. He’ll have a lot of challenges and new things to discover. I hope we can help him achieve the best of himself in the coming new year.

Escalating Behavioiur

2011-12-23T21:32:00.005-05:00

Carter has been having it rough at times during the past few weeks. I wasn't sure why or what had changed. He was screaming more, head banging and face slapping more. It was hard to see and hear because I wasn't sure what we needed to do to help him.

We are working with the fake ABA people so that they could help us. Unfortunately it is a very slow process. We tracked his behaviour for 4 weeks and provided the details to the therapist. She is now developing a program for us to implement to help Carter with this behaviour. We won't be seeing her until January 4th. At this point it means more delay and no answers. She didn't suggest much of anything that might help us to help Carter.

I did bring him to see the Sensory Occupational therapist and she had some good suggestions. I realized after speaking with her that Carter's behaviours may be related to processing sensory type things. He typically gets the most upset when he is watching TV or playing a computer game. I think the activity overloads his sensory system and then he acts out to self calm. The therapist suggested we do some of the calming activities thorough out the day so that his sensory system is more relaxed thorough out the day. We still have to start doing that with him. She suggested rolling a ball up and down his body for 10 rolls. I was hoping to buy the same type of ball that she had. It looks like a ball that has been squeezed in the middle. Using the therapy ball he was using in ABA might be an option as well.

I also took Carter off the B12 spray he was on. He started it about the time the behaviour got worse. It has stevia in it which isn't SCD compliant. I wasn't sure if he was reacting to the stevia or perhaps having too much B12. I have seen a good improvement in his behaviour since I took him off of it. I had tried removing it a couple of weeks ago but I didn't see an improvement. It's so hard with these types of things to really know what helps and what doesn't.

My hope is that we will figure this out soon and he'll be managing his frustrations better.

Next ARI Conference

2011-12-18T14:31:00.003-05:00

I was really excited to be able to register for the next ARI Conference (formerly DAN! Conference). This year it is in New Jersey from April 26 to 29, 2012. It is something I look forward to each year.

They don't have the list of talks or speakers yet but I know that they will be great. I respect the fact that they always speak to the audience with the knowledge that we are informed and understand complex subjects. I don't always get everything they say but I still come away from it with learning a lot of new things.

What I really enjoy is being around others who feel the same way I do about autism. It's a feeling of understanding and support. It is unlike any feeling that I experience in my day to day life. I'm not saying that everyone that attends believes the same things but its a sense of having an unspoken bond. We're part of a club that no one wants to be a part of.

Going to the conference also allows us to have a break from it all. We are also attending the ARI dinner which is always very enjoyable. Brad loves to volunteer and enjoys being of help to those that attend. We are planning a couple of days in NYC after so it will be a nice break.

Impossible Cure conclusion

2011-12-16T22:45:00.010-05:00

I found the last 5 chapters of the book 'Impossible Cure' by Amy Lansky PhD very interesting. I was surprised how logical the ideas behind Homeopathy are. I never knew much about it but now with my exposure to biomedical treatments I am much more open to alternative treatments.

I enjoyed the explanation of what some remedies do. I never would have imagined a small fraction of a product could heal a persons medical problems. It did surprise me when it was stated that despite over 200 years of Homeopathy they still aren't able to explain how the remedies work. They have done research but they still don't have these answers.

I wasn't surprised that the medical community is so against this form of medical treatment. If it interferes with Pharmaceutical companies making money then there will be efforts to destroy it. In Canada it is more accepted and much more easily practiced.

My favourite chapter was the accounts of cures for different conditions. The ones listed were obviously less frequently happening to people. It did open my mind to the possibilities of this medical treatment. I was hoping it would feature more stories about autism but it didn't.

I hope that Homeopathy has a future of more widespread acceptance. I believe it has real potential for so many conditions.

Never Surrender

2011-12-14T22:25:00.004-05:00

When a friend told me that her DAN! Dr. (same one as mine) told her that there was no biomedical treatment left for her son I thought to myself. I’ll know when that day comes and I won’t have to be told because I’d already know. I was very confident because I could tell I devote much more time to research, reading and attending conferences compared to her. I could tell the writing on the wall well before should would. She was being led through her son’s biomedical treatment compared to me who was in some cases leading his treatment. She lacked the urgency I feel regarding treatment. She gave an air of being content with her son and not striving for more than he was. I don’t believe she was settling but she certainly seemed more laid back regarding what she could do for him. Her son couldn’t handle IV so that left out a lot of treatment. I felt confident that with Carter’s ability to deal with IV’s we had much more open to us as far as treatment options. We wouldn’t be limited by what treatments weren’t done through IV. Also, IV is the best way some treatments are provided so this would give Carter an edge on possible healing.

With all the above being said I still was not prepared to hear the words I heard today. After discussing many things DAN! Dr said that he felt there wasn’t much left to treat Carter Biomedically anymore. I didn’t response to his comment because it seemed to hang in the air and it became almost a surreal moment. I couldn’t digest what the words meant in any form. It was a feeling of defeat that I wasn’t willing to comprehend. I couldn’t accept the end of this chapter by such a short sentence. It deserved a longer drawn out discussion with thoughtful comments and long pauses. Opening text books and researching answers and asking the questions we haven’t asked yet. It needed a meeting of many minds to come to this conclusion. It deserved a bitter battle with strong words and heartfelt pleas of reasonable ideas. It needed to include a flourish of thoughts and wonderful ideas. All I know is that those words still seem to be hanging in the air where they were spoken with nowhere to go. I haven’t quite decided if I’ll take the words into my mind and let them take hold of my soul. I’m not sure if those words mean anything to me now or will ever mean anything. I will not accept defeat and I will not let go. I know that this isn’t all there is for Carter. I have faith and confidence that Carter will conquer this thing called autism.

Socially impaired

2011-12-11T17:49:00.002-05:00

I went to a jewellery party yesterday and I found myself surrounding by Mom's of typical kids. It's hard to explain how I felt out of place even though a lot of these woman have children just like me.

Conversation is so hard because I'm so used to talking about autism. I had to turn off my "autism brain" and converse with people regarding things that seemed unimportant. I've lost the ability to just chit chat and not think about autism. No one asked how we were doing or Carter. It was like the elephant in the room. Everyone sees it but no one want to talk about it. I realize it isn't exactly the most encouraging topic but I thought they'd ask about how Carter was doing. There were no questions, comments or anything regarding Carter. I was tempted to blurt out that it isn't easy having a child with autism. I was told I should go out more and all I thought was "Really?!?". It's hard to contain my brain from exploding. People just don't get it and don't seem to want to either. I know I need to go out and do social things but on the other hand I need it to actually be helpful. I don't want to be dragged down a spiral of thoughts regarding how alone I still feel because no one seems to care. I'm not sure I'd do much better if the shoe was on the other foot but unfortunately it isn't. It's us and it's not going to change.

I need to find some kind of happy thought to make it all better and just let it all go. It just isn't worth it.

Update on Gov't ABA Therapy

2011-12-07T22:24:00.007-05:00

I spoke with the government funded ABA contact today. I speak to them every 3 months to see what Carter's wait list number is. I was quite excited to hear that his number is now 11. Originally it was 107 when it all started. Anyone would assume that 11 is good but actually it means almost nothing.

I have kept a list of the wait list numbers they've given me over the years and even notes regarding some of the conversations we've had. Every few months I get a new contact so even what I'm told changes. It's been a very frustrating process from the beginning. Originally they said it's typically a 3 year wait which would have meant he'd start therapy April 2011. Today she said the wait is now between 4 and 4 1/2 years. That means since Carter got diagnosed the wait list has increased by 1 1/2 years a 50% increase. It's gotten to the point it's ridiculous.

So the new date she said is that most likely he'd start therapy is September 2012. That would mean a total wait of 4 years 1/2 years. Imagine if we hadn't paid for 2 years of private ABA? We'd have years of struggling with so many issues that Carter is now able to do. More years of not being potty trained, not communicating, not responding to requests, not eating good food and the list goes on.

I'm just too stunned by this new date to really know how to digest it. It seems impossible to believe that we live in one of the most affluent countries in the world and yet critical therapy for children with autism is worse that substandard. The cost of the therapy doesn't compare to the cost of supporting people with autism for their whole life. The longer the person has to wait for therapy the least effective it is. He'll be 7 years old by then time he starts. Everyone knows that the years between 2 and 5 are the best time for any kind of proper development.

Ugh!!!

Impossible Cure

2011-12-03T13:01:00.002-05:00

I am half way through the book 'Impossible Cure The Promise of Homeopathy' by Amy L. Lansky, PhD. Brad has already read the entire book and he felt quite strongly that I should read it. I do have some knowledge of Homeopathy but not about the origins of the field or how particular remedies are picked.

The background of the author is one of autism, a cure for her son and how she found herself in this field of medical treatment. I have never felt comfortable with the word "cure" when it comes to autism because it's hard to know what the child would have been like if autism was never in their life.

I find the theory behind Homeopathy quite interesting. It seems to make sense that God would create things on the earth that would heal us. Due to the diluted properties of the remedies it seems like a less invasive and safer way to treat the body. Most traditional medicines have side effects that may not be immediate but are in some cases long lasting. So many are on multiple medications that have never been tested all together in one body. We are somehow not supposed to worry about that and trust that everything will end up fine. All that will happen is that we'd need another medication to fix the problems the first few created.

Amy Lansky never got a formal diagnosis for her son but I have no doubt by her description that he had autism. It really is too bad that she didn't get him diagnosed because then her story would hold more weight with those that don't believe her son was "cured". I am looking forward to learning more about how her son was helped but she has mentioned some remedies that really helped him. The unfortunate thing with Homeopathy is that there is no way you can teach yourself enough to pick the right remedy for your condition. It is much more complicated then supplementing Vitamin D when your blood test shows you have low Vitamin D in your body.

I think that if you have an open mind when it comes to different medical treatments you may be surprised that what you've been taught your whole life isn't necessarily the best or only way to heal the body.

The Vaccine Debate

2011-11-29T23:11:00.011-05:00

There probably isn't a more hotly debated topic then the Vaccine Debate. Before Carter was diagnosed I had only heard a little but I did hear one thing. That vaccines may cause autism but it was proven that the link is not there and vaccines are safe. It consoled me to know it was all a lie and I should go ahead and vaccinate.

I was very faithful when it came to getting my kids vaccinated as per the schedule of the time. The schedule changed over the years to include more vaccines. I didn't think much of it and it wasn't until Carter was diagnosed that I did more research.

I didn't realize I wasn't able to give "informed consent" to the vaccines being administered to my kids. It wasn't even a term I ever heard of before and still don't hear in Canada. We aren't required to be "informed" and to sign a document that we know the risks involved with vaccines. We aren't told of the possible side effects other than redness and possible fever. I didn't know that there are a lot more side effects that we aren't told about. I wonder now how we can track the health of our child if we don't know what to look for and what may have caused it.

I didn't realize the "research" that they so often refer to is a joke. It has only tested one component of one vaccine and one preservative. They haven't done testing on comparing a fully vaccinated child and what possible health outcomes come from it such as asthma, diabeties and other conditions. I also found out that there are no tests being regularly run on people to see if a particular vaccine is safe. I found out that the second MMR booster is only required 5% of the time and a test can be run to prevent the second booster from being administered. The only reason why that blood test isn't done is to save money. They view all vaccines being safe so if you get some your body doesn't need it doesn't matter.

I also found out that a vaccine shouldn't be administered to a child if they are sick or recently been sick. I was never asked that so how come that's okay?

What I want is to have a test or set of test developed and used on a regular basis to check in a person is "fit" to have that particular vaccine. Immuno-compromised people should not have vaccines. Is that readily known as well?

I believe the reason why the vaccine/autism debate won't go away is because those that can do something about making vaccines safe don't want to look into the concerns that people have. They think if they make us feel bad enough that we'll vaccinate even when it could put our own child at great risk. I agree vaccines have their place and "herd immunity" is important but who will be there when your child is vaccine injured? What medical professional can see the signs that vaccines are harming a particular child/person and stop anymore damage from being done? NO ONE!!! We're in this alone so until more proper research (not done by big-Pharma or government) is done this debate will continue.

Really?!?

2011-11-25T21:24:00.005-05:00

I was talking with my sister-in-law today and she has a son with autism. Something hit me while we were talking. I often have conversations with my Mom regarding how clueless people are when it comes to showing compassion or empathy or any emotion at all regarding Carter's autism. She often tells me that other people have no idea what you are going through and can't even begin to put themselves in your shoes.

On some level I get that but where does that leave the one dealing with autism? It leaves them alone and we're expected to understand that they don't get it. I don't expect people to know what it's like but what I do expect is to show some sign of acknowledgement that it's tough and wish us the best. What I typically get is someone either trying to water down what I am doing for Carter or not even bothering to pretend to care how he's doing. Where's the empathy?

You know what makes me the maddest? The people who have some clue how hard autism might be and don't use that understanding when they deal with me. I have enough stress in my life and I don't need any knuckleheads compounding the situation.

So where does this leave me .... just repeating the same word ... "Really?!?".

Secretin round 2

2011-11-22T23:17:00.002-05:00

Carter has his second secretin treatment yesterday. I have to say I was feeling a bit anxious about the whole thing. We had to make sure we stored it properly too keep it cold while we traveled to the Doctor's office. I wasn't sure if my Doctor's lab guy would know how to mix it. I wasn't sure how Carter would react.

The lab guy had the instructions from the other Doctor but didn't know how quickly to push the secretin into the IV. I really hope that whatever he ended up guessing was right. It went well and it appeared that it was administered correctly.

I watched Carter for the rest of the evening and I didn't see one positive sign that might tell us if the secretin is helping. He didn't act hyper or sleepy and didn't have any problems sleeping that night. It makes me wonder if the symptoms we saw with the first infusion were just a coincidence. The other two options is that it wasn't mixed and administered correctly or the secretin did not survive the transport process. It's really hard to know what it might be. Dr. O'Hara did indicate that some patients don't show any signs until the third treatment. I guess we'll have to see how it goes in 6 weeks and hope for the best.

It's a little disappointing we didn't see something more concrete. All I get to do is wonder for the next 6 weeks. I hope that we can be sure whether or not to continue with the treatments. I wouldn't want to stop short of a possible good result.

One more thing

2011-11-20T07:50:00.006-05:00

I have been thinking about one thing that the special education resource teacher said during our parent teacher meeting regarding Carter. I had told her that we had three new therapist in our home the day before and Carter hugged them all. Her reaction wasn't at all what I thought it would be.

The reaction I've always received when I tell people Carter hugs people he doesn't know is they think it's cute. I explained that he doesn't do it all the time but seems to do it when he senses the person is a caring person or they are family. She thought it was bad because you aren't supposed to hug someone who isn't family. I had never thought about it that way. I am usually good at spotting habits Carter has and trying to figure out if we should stop them before he gets much older. For example one time he went up to someone we knew and was playing with their tie. I tried to stop him because if he continued with this habit it wouldn't be cute when he's 16. The person didn't mind but they probably would have if he was much older. I just never saw hugging as a bad thing. In our culture it just isn't something people generally do. It is true it is something he shouldn't do to non family members. I don't disagree with what the teacher said but at the same time it feels wrong somehow to stop this habit. A lot of children with autism don't show affection and I always saw the hugging as a positive. He really doesn't do it all that often to people that aren't family but it is a valid thing to teach him. There are things that people that aren't family would not feel comfortable with and hugging is on that list.

I'll have to make an effort to teach and prevent him from hugging people he shouldn't. I'm not sure why this seems wrong somehow.

Parent Teacher Meeting

2011-11-17T21:51:00.006-05:00

Having two older kids in school you'd think that Parent Teacher meetings would be old hat for us but it's a whole new world when you are dealing with a child with special needs like autism.

We had received his progress report the day before and was a little confused by it. It doesn't look like our other kids reports. We didn't know what his progress was being compared against. Other kids? an alternative government requirement for grade one? What? The comments were pretty self explanatory but a little surprising. The teacher stated Carter only knows his numbers up to 5. 5??!? That isn't even close to being true. I guess I could dissect all that was said but mostly it was positive. Carter only started full days a couple of weeks ago so that would certainly impact what he can achieve. It turns out the progress report is compared against his Individual Education Plan (IEP). This document was developed by school staff with input from a lot of different people including us.

I did ask about Carter's graduation from school and if being in a classroom like this one would produce any kind of diploma or certificate at the end. I had read something that stated he wouldn't graduate from high school if he was still in this type of program. They said he'd have to switch to a mainstream class if we wanted him to have a chance to graduate.

The meeting underlined to me that Carter has so far to go but he is really smart and I know if we give him the tools he needs then he will graduate from high school. I'm not sure what the future holds for Carter but I know that the class he is in now is good for him and gives him the support he needs.

Fake ABA

2011-11-15T22:05:00.008-05:00

I have two terms now that I use in my daily autism world ... "Fake ABA" and "Real ABA".

The "Fake ABA" I refer to is the new government program where a consultant works with the parents only to resolve issues their child with autism has.

The "Real ABA" I refer to is the old government program which is a typical ABA setting where a therapist works with the actual child with autism.

I don't use the term "Fake ABA" necessarily to be derogatory. It is intensive in the sense that there is a lot of time spent with the parents and the consultant. We have only started the process which so far has included two information sessions. We were left with "homework". We are to track Carter's head banging, face slapping and yelling. I hope that the tracking comes up with some good ideas to figure out how we can give Carter a replacement for those reactions. The only thing that I'm mystified by is why is it that the consultant never meets or observes the child. It seems odd that someone with ABA skills would never want to meet the child they are helping. An impartial observer would see things perhaps a parent might not. I'm not saying this "Fake ABA" model won't work but it just leaves me to wonder why the child with autism isn't directly involved.

The "Real ABA" is still something we are waiting for. We actually have our very first appointment tomorrow that involves Carter being observed by the consultant or therapist along with questions for me. I'm not sure what this will lead to in the short term but eventually Carter is supposed to get picked up for government funded ABA. So far he's been waiting since April 2008 which means 3 1/2 years since he got on the list. I hope that we'll get some insight as to when he might get picked up. It seems like every step in this process seems to lead to nowhere so far. It's more than frustrating but I guess not very surprising when dealing with a government agency. We spend more time meeting than actually helping Carter.

At this point I'm just accepting what we are getting and hoping it will help. I know it's best not to have preconceived ideas and let it prevent us from getting the help Carter needs. I'm hoping ... and hoping ... and hoping!!

BMJ & Brian Deer & Fiona Godlee

2011-11-10T20:39:00.007-05:00

It's been quite a few months since I've written anything regarding the British Medical Journal (BMJ) or Brian Deer. It's been a regular dosing of lies the past few months regarding the case study Dr. Wakefield did quite a few years ago. It is getting to the point that it's beyond ridiculous. The amount of time being spend on a small case study and not focusing on real issues that face ones with autism and their families is criminal.

For the past few months Brian Deer & BMJ focused their time on Dr. Wakefield saying he alone was involved with fraud regarding the study results and details. The 12 other Doctors involved with the case study have been immune to any issues up until now.

The Editor of BMJ is Fiona Godlee and she has supported Brian Deer from the beginning. Claiming that his work is peer reviewed and therefore not all lies as it really is. Now she is pointing the finger at the other Doctors involved with the case study. She wants everyone investigated by a parliamentary investigation into her new allegations against the other Doctors. Really? There's nothing like beating something to death. Dr. Wakefield's medical license has already been removed and the lies of "fraud" have been all through the media. Why does this case study need further discrediting? It's already dead as far as a lot of people are concerned. Can't we spend the energy on finding treatments for autism?

I have been reading a series of articles at ageofautism.com where the truth behind the case study has been thoroughly and honestly investigated. It's appalling how many lies Brian Deer has said. One can only assume he is being supported by powerful people who don't care how he does it but just makes this autism vaccine debate go away. What they don't realize is that it won't go away until they start doing real and proper research that isn't funded by a pharmaceutical company or some agency that has a conflict of interest.

Enough already!!!

Biofilm Protocol Update

2011-11-09T21:24:00.005-05:00

For the past 6 months we've been doing a version of the Biofilm Protocol for Carter. There are so many different versions so it's hard to know which one is "right". Every so often I try to google Dr. Usman to see what update she has regarding her protocol but never find anything helpful.

We are continuing with the Inferfase Plus and Charcoal but we've dropped the medication part of the Protocol. I asked our DAN! Doctor how we know whether to continue and that it has actually done some good. He didn't seem to know how we could tell for sure. I know that it is often difficult to pinpoint one thing as being the result of a treatment. He did suggest running an Organic Acids Test so that's what we did. I FedEx'ed Carter's "sample" on Monday and should get the results in 3 weeks.

One thing that I did get from my recent googling of Dr. Usman and the Biofilm Protocol was that fiber acts like a brush for your gut lining. It made me think back to our appointment with Dr. O'Hara. She asked us how much fiber Carter gets in his diet. I'm really bad at knowing which foods have what in them. I know fiber is in fruit which Carter gets. Dr. O'Hara suggested adding acai juice because it's a powerful antioxidant and has fiber in it. I found some at the Health food store which we have been giving to Carter for the past month. It has a mixture of a lot of fruits and is high in other things like b12, vitamins, minerals, fatty acids and amino acids. Unfortunately foods that are typically high in fiber are gluten type foods so that isn't something we could do. Now I know why Dr. O'Hara asked about fiber. Having connected the dots for that made me realize there are more things I can do to help with the Biofilm Protocol by using diet. I was already aware there are foods that are prebiotics that are helpful with the Protocol as well but fiber was new to me.

It never ceases to amaze me that diet is such a big key to the health of children or older ones with autism. We do hear in general that a balanced diet is good but most parents don't realize that certain foods can hold the key to better health and happiness for their children.

My personal opinion is that a Comprehensive Stool Analysis can be helpful in determining if the Biofilm Protocol is working. It would show you the good and bad bacteria in the gut and if there are any possible parasites or other bugs in the gut. I did mention it in our latest DAN! appointment but he felt that it didn't need to be run at this time. After the next secretin I would really like to run the Stool test so we can see if it's helping his gut and digestion.

Leaf Party

2011-11-06T21:34:00.001-05:00

We brought Carter and the other kids to the annual Leaf Party that a friend of ours throws. Our friend's children have long since grown but they still throw this party every year. The have a large backyard with a water feature, chopped wood, shed and fire pit. All the fall leaves are blown into a pile and the kids jump in, cover themselves with leaves and throw leaves at each other. It's a very simple idea but the kids seem to have a great time.

Carter was very tolerant of the flying leaves and all the commotion. He would follow the lead of the other kids and pick up a bunch of leaves and throw them at someone. He would kick the leaves and bury himself with leaves. He also enjoyed running around the backyard and investigating the different things that were there. He liked to throw the sticks on the fire and watch them burn. Carter only showed interest in the other kids when it was related to the leaves. It was great to see that he picked up on what everyone else was doing and enjoyed himself.

I'm glad Carter had a chance to enjoy himself and be around other kids. He asked about playing in the leaves today. Carter is growing up so fast and I hope that he has more opportunities to be more social with other kids his age.

Full time at school

2011-11-01T22:31:00.002-04:00

Today was Carter's first full day of school. He took the bus to school and he took it home as well. We have been working up to this day for awhile now and it's great that he's finally at school full time.

He seems to have really improved during his time at school. He is able to do work independently which the school staff didn't think he could do just because he was so used to ABA therapy. The staff seem to like him and I even saw some students saying 'Hi!' to Carter in the hallway. I was fully expecting a lot more difficulties during his transition but once he got used to the idea of school he seemed to deal with it all better.

I reviewed his Individual Education Plan (IEP) today and I found it very thorough. It included a lot of important things that Carter needs to learn. I'm glad that they reviewed all the reports I gave them and included the input from our ABA people. I wish we had the money to have our ABA people to review it but we don't. I will see how things go and see if it's required.

I just remembered our ABA people said we should meet with the school every month. I think we've done that so far. Parent Teacher interviews are in a couple of weeks so we'll see how Carter is doing. I'm not sure how he is doing academically so hopefully I'll get some insight to that during that appointment.

It's a great feeling to have Carter in school full time. He is growing so fast and is doing a great job at school!

HBOT

2011-10-28T22:48:00.004-04:00

When we met with Dr. O'Hara she suggested that we try HBOT again for Carter. She mentioned that she felt Carter must have some brain inflammation because of the head banging and face slapping. We explained we had tried it before but didn't see any results that would encourage us to try again.

It is true that despite over 2 years of ABA and all the interventions we've tried that we've never been able to get rid of his head banging. I thought that the ABA would help him learn new skills and not do that. I'm not sure what to think as to the cause of it. It could be frustration and not knowing how to fix the situation he's in. He could have stomach pain and this is how he's dealing with it. He is telling us more frequently that his stomach hurts so maybe the head banging is how he's coping with it. It really is hard to know exactly what to do about it.

I just can't imagine we could spend that kind of money especially with the results we got before. I just hate these kinds of things because when a Doctor like Dr. O'Hara suggests something it really has some weight. I guess there is no way for me to know what the future holds. I just hope that Carter will stop banging his head and slapping his face. It's very distressing to watch and also it must be hard on him as well.

The Big Lie

2011-10-24T21:24:00.002-04:00

I read so often in the news that autism hasn't reached epidemic portions it's just better diagnosis. That parents seek out diagnosis so that they can get services they wouldn't otherwise get. Also, some even charge parents with wanting attention because their child is now labeled with a life long condition.

Let me tell you what happened when my child was diagnosed. We didn't get any special attention or support from people who found out. No one baked us a casserole or sent us a card or called us on the phone. We were left in the garbage bin labeled 'too bad so sad' and left abandoned. This is not exactly getting 'attention'. I didn't seek out autism ... it came looking for me.

I know that if autism was very common while I was growing up that I would have noticed kids that were head banging, tip toe walking, face slapping, non verbal, and diaper wearing teenagers. I know I didn't see any of these types of kids in elementary school. Once I entered High School I didn't encounter kids with these types of issues. I'm sure the special needs class had some but not to the extent that we have today.

You can't get services for a child if they don't need it. You can't go to a speech therapist and say I want therapy for my child if the child doesn't need it. You can't qualify for government funded ABA by just saying you want your child to have it. We aren't a bunch of parents with nothing better to do than to go to countless appointment and pay $1,000's of dollars to pay for therapy our kid really doesn't need. We aren't out there trying to make our kids geniuses. We just want our kids to be able to live independent lives. Is that so much to ask?

It is a real slap in the face when the 'Big Lie' is put out there in the media. It tells those around us that we don't need help because we've always had children with autism around us. It's like telling everyone that families with children with autism aren't in need of support. Oh well ... he was born that way so we should just accept it and forget it. It's too bad that those with affected children don't have that luxury. If we just accept it and forget it then we're letting our children down and securing them an uncertain future filled with scary prospects.

School Update

2011-10-20T20:55:00.002-04:00

Carter has been progressively doing well at school. He started out by going for an hour and now he's up to 4 1/2 hours and takes the bus to school. Next week he'll add a little over an hour to his day. Starting November 1st he'll be full time and taking the bus home as well.

The school was fortunate enough to get approval for a special team that helps classes with children diagnosed with autism. It is only for one month and they have been there all month. These added professional come in to help give guidance to the teachers in the classroom. They help with solutions regarding challenging behaviours and other things that come up in the classroom. Because this team was there I believe this helped the school have the confidence that Carter could increase his day as quickly as it has. It seems like this added boost has really helped Carter transition to a longer day at school. I knew he could handle a longer day but the staff wasn't so sure. This special group gave the school the added help so that they could help Carter get to a full day of school.

Carter does still have problems with transitions but he is starting to do independent work and working in small groups. He loves school and also loves taking the bus. I'm glad that his experience at school is positive and the staff are responsive to his needs. Overall things are going well and I'm very relieved.

Cake and eat it too...

2011-10-17T21:07:00.005-04:00

I was reading ageofautism.com and it had a short article about the ARI Conference in Las Vegas, NV. They interviewed one of the people arranging the conference and the person said that genes and the environment have a hand in the current autism epidemic. A comment on the post started to make me think a lot about how the autism community is divided.

The comment basically said that believing it's both genes and the environment was like having your cake and eating it too. She/he said 'really, both?' or something to that effect and my first thought was that when you haven't done enough research you can believe what the big news outlets say. What isn't often reported is that even some main stream researchers are now saying that both genes and the environment must be involved. So much more research is needed and because so much money is thrown at gene research related to autism it is slowing down progress to help treat or prevent autism.

When Carter was first diagnosed with autism I had a friend introduce me to her friend that had a daughter with autism. In those early days I really did appreciate the contact with this person. I only ended up talking to her on the phone 2 or 3 times. She didn't like Jenny McCarthy and said the GFCF diet didn't help her child. She also said that Jenny McCarthy's son still had autism and hadn't recovered. I never took what she said with much stock and kept going with changing Carter's diet and seeing a DAN! Doctor. I did like Jenny McCarthy and I did my own research and knew that biomedical treatment along with traditional therapies was going to help Carter.

I have a theory when it comes to some people. They may have tried one thing regarding helping their child like diet or supplements and it didn't work. It could have been because they didn't wait long enough or had let other problem foods into their child's diet. It isn't like taking a magic pill and it all goes away overnight. It's a long process and there are so many different biomedical treatments out there. For some if they think we're all crazies then that gives themselves permission to do nothing else. It would be popular to believe what the mainstream media states and what their traditionally trained Doctors tell them. My feeling is that having an open mind and doing a lot of research is the only way to decide who the crazies are. I have no problem being called a crazy person because I know Carter is improving every day with the biomedical treatment he is getting. How else would he have a grade 3 reading level without even stepping foot into a school!?!

Make your own flu shot

2011-10-15T18:54:00.007-04:00

I saw this funny video made by a Canadian on how to make your own flu shot. I thought it was very funny but also reported the truth about the vaccine. It contains toxins that are harmful. Also, that we are just supposed to trust the government that it's safe despite the fact most flu shots have mercury in them. Click on my blog title to see the video.

When we were recently traveling through the US recently it was amazing how many billboards, signs and stores had ads for getting the flu vaccine. It isn't like that in Canada because the vaccine is provided free in most cases from a Doctor. Not once did any of the ads list the ingredients or any possible side effects. I was more surprised to see it pushed a lot in Florida simply because as a person from Canada we can't imagine flu is a going concern in Florida. There are a lot of older ones in Florida and that may be the reason why it is pushed so much there. All I thought was that it puts a lot of pressure on people to get the vaccine because everywhere you go they want you to have it.

It was one vaccine that I never received as a child and never had as an adult. I'm thankful it wasn't something I was raised to believe was needed. My kids have never had a flu shot. My old Doctor who was a follower of the Pharma party line never once asked about getting the flu shot. This fact always surprised me after I learned more about the ingredients.

It's okay ... no mercury for me today.

Secretin & Lyme testing

2011-10-10T14:25:00.000-04:00

Our appointment with Dr. Nancy O'Hara went very well. She was exactly as she is when speaking at the ARI Conferences. Very down to earth, easy to talk to and very open to whatever we had to say.

She had reviewed all the information and copies of tests that I had sent her. She provided her recommendations on supplements, treatments and even dietary additions. I was really pleased at how thorough she was. I was worried that because our main goal of the appointment was to get a treatment of secretin that maybe the appointment was just a formality.

I had noticed that she asked questions regarding Lyme on her questionnaire. I assumed that meant that she must be open to testing and treatment. Our own Doctor had no interest in testing or treating Lyme so I was excited to see if Dr. O'Hara would be open to testing Carter. I didn't know but there is a lot of Lyme in Connecticut because at least the part we went to was all forest. She said that a lot of her kids with autism have Lyme as well. I told her I didn't know for sure if Carter had Lyme but he had a lot of symptoms in common and lived right beside a forest with deer. I said his symptoms could very well be related solely to autism but I wanted to check if Lyme was a component of his issues. She was more than willing to test for Lyme. Her colleague is the one that actually reads the tests because they aren't necessarily straight forward to understand.

We did the blood draw for the Lyme test and the IV Secretin at the same time. She actually includes cysteine with the secretin which isn't something that was told to us by the other doctor who provided information about secretin. She did the blood draw and treatment herself because she had put us as the last appointment of the day and no one was left in the office. She was very good and fast about both the blood draw and secretin treatment. We waited around a bit to make sure he didn't have an allergic reaction which he didn't. She says she has never seen an allergic reaction to secretin. I hadn't realized she was also well versed in treating secretin. Her previous role as the Medical Doctor of the Physician training of the Defeat Autism Now! Doctors obviously means she has knowledge of a lot of areas of treatment for those with autism. We were there for 1 1/2 hours and then left.

I was really excited by all that we discussed and that we finally had Carter's first treatment of secretin. She said he could be lethargic and have diarrhea. He did get dozy in the car so it might be a good sign. When we got into our hotel room he said 'my stomach hurts'. He's been better able to vocalize when his stomach is hurting him. I think his gut issues haven't been resolved as far as I was hoping after more than 3 years of biomedical intervention. Dr. O'Hara said the third treatment of secretin is typically when we can tell if it's something that may or may not help. She said because Carter is now her patient she is able to send secretin to us back home and provide the details required to administer it.

I'm really pleased by all that transpired and that two big things on my 'hope list' are finally coming true.

Off to find Secretin

2011-10-06T21:09:00.004-04:00

Anyone who reads my blog knows I've been working on getting Carter treated with Secretin. It hasn't successfully happened yet even after 9 months of trying. During our trip to Florida I got some good news.

Through my Doctor I was able to get in contact with Dr. Nancy O'Hara. She is a DAN! Doctor in Connecticut who has many years experience treating autism and is a guest speaking at many Conferences. I've heard her speak and she seems very knowledgeable and kind. She agreed to provide Carter with the Secretin treatment. Due to US law Carter has to become a patient of hers so she can do the treatment. This means we have to do a one hour appointment and then he'll get the secretin.

While we were away I managed to arrange an appointment for this coming Saturday at 6 pm. I had to send in some paperwork so that the Doctor would be familiar with Carter's health situation. The first package of paperwork I sent didn't get there soon enough so I had to FedEx it again when we got back from Florida.

I'm hoping that this appointment will go well and we'll be able to determine whether or not this treatment will help Carter. I am really not looking forward to another 8 to 10 hour drive but I feel we've exhausted a lot of our options here and we need to get this going. This time it will just be me, Brad and Carter so hopefully it will make things a little easier. My hope is that we'll get the missing information we need so that we can continue this treatment at home and not in the US.

Trip back from Florida

2011-10-04T22:03:00.004-04:00

The trip home from Ft. Myers Beach wasn’t as good as on the way down. Carter was finding it difficult to transition from activities he liked to going back to the van.

There were two incidents where he scream and slapped his head for a long time. It’s not something I’ve seen him do for a long time. He sounded almost frantic which was the most concerning. We ended up stopping once and having him walk around. It wasn’t long before he wanted back into the van which I was surprised by. I think the long hours in the car were too much for him. We stopped often but I guess it wasn’t enough for him. I counted down before leaving an area he liked like reading the products in the store but it increasingly wasn’t working.

The hotel stays went fine because for one thing he really seemed to enjoy sleeping in the beds. He’d get under the covers and pull them up to his chin and have the most satisfied look on his face. I think he was excited by that part. He did well when we went and ate dinner at Bob Evans. He wanted to go into the “house”. This time he took a long time to eat but did finish everything on his plate.

I think the trip overall was a lot more successful then I was expecting. I thought Disney World wasn’t going to go very well but he did surprisingly well. I think that when we take the kids again in 2 or 3 years he could last the whole day in the parks. We didn’t push it this time and I think that worked best. I'm really pleased how it all worked out.

Ft. Myers Beach

2011-10-01T21:21:00.003-04:00

Our second part of our vacation was to spend 3 days at Ft. Myers Beach at the Pink Shell Resort. When I was growing up my parents brought me to the Pink Shell every year. It became a very special place for me so I wanted to share it with my kids.

Carter really enjoyed going into the Gulf of Mexico and playing with the sand. It was so nice to see him being excited about being here. He'd sit in the Gulf and let the waves push him back and forth. When the wave was bigger than he expected he didn't get upset when he got water in his face. His smile was easy to read and I knew he loved it. He would see the sand and want to make 'towers'. He loved picking up sand or shells and throwing it into the Gulf. He'd ask to go to the beach which I thought was great because he didn't just say swimming or water. He knew the difference between swimming in the pool and going out to the beach.

Carter loved swimming in the different pools that the resort had. I think his favourite pool was the splash pool. It had these posts that would shoot out a fan of water and a child could fit under the water without getting wet. Of course you'd have to get wet to get under the fan of water. He loved the coconut tree that would fill the coconut with water and then dump it all out. It was so nice to see that he enjoyed swimming so much.

We brought Carter to play mini golf at Jungle Golf. This was another special place for me because as a child my parents always brought us to play here. The theme of the mini golf is Tarzan so each hole has a part of the story on a post. There are wild animals featured all over the golfing areas. There are waterfalls and other features that make it look really nice. Carter really enjoyed playing mini golf but he didn't understand about moving from one hole to the next. I let him stay at one hole for awhile and then I was trying to teach him about going to the next number or hole. He was okay for awhile and then he was jumping backwards and forwards in the holes he wanted to do. It wouldn't have mattered so much if we didn't have another group coming up behind us. I ended up having to take Carter back to the van. It was one of the trying to carry a child who doesn't want to be held situations. It was the low point of the trip but overall it wasn't as bad as I've been through before.

It was so nice to see Carter appreciate the beach, the water and all the fun. I wasn't sure what to expect from him and what he would enjoy. I was very pleased that our trip to Ft. Myers Beach went well. I have a very special place in my heart for this place.

Last two days at Disney World

2011-09-28T21:18:00.003-04:00

We had two sit down meals planned for the third day at Disney World. We were at Epcot and had the Princess breakfast in Norway. Carter did fairly well and ate some grapes and strawberries. We had fed him before we left because we find there isn't much to feed him at restaurants due to his allergies. The restaurant had a Princess Procession which included a lot of noise so it was time to bring Carter out of the restaurant. Despite that he did well at the table and ate what we gave him. The weather has been quite hot and I'd have to say melting is the best way to describe the heat. It's nice and sunny but the sweat just drips off of you. I know it's a gross mental picture but I needed to include this detail. Carter was a real trooper and didn't seem to mind the heat. We brought him on the Nemo and Friends ride which he really seemed to enjoy. He was worried in spots because you could tell he didn't understand exactly what was going on. I knew he loved the movie so he might like the ride. We also brought him on the Journey into Imagination and he did okay with that ride as well. I try to warn him when spots come up that he might not like. This ride included a large blast of air and then the scene in front of you dramatically changes into a loud show with Figment. He handled it well which was really great. We went through the Character Spot so we could meet Mickey, Minnie, Goofy, Pluto and Donald Duck. Carter loved meeting all the characters and hugged them all. We used our guest with disabilities card so we could skip the 35 minute wait. We couldn't have done it otherwise. We did drive him around in the stroller through the World Showcase and he liked that. The day went well with him and we enjoyed our time at Epcot. We left in time to get back to our resort so that I could go to the main office to pick up a package and get take out dinner.

The last day at Disney World we went to Magic Kingdom. This park went the best of all the parks. We had breakfast at Crystal Palace so that Carter could meet all the characters. Carter loves meeting the characters and hugs them. He jumps up and down and laughs when he sees them. It's so nice to see that he enjoys meeting the characters. I was surprised by how many rides Carter enjoyed and actually asked to ride on. We took him on Winnie the Pooh which he loved. They have a little house in the front with things inside. He really enjoyed it and didn't want to leave. He went on the Peoplemover and enjoyed looking out over Tomorrowland. Brad took him on the Indy Speedway and Carter drove. He did lose interest as soon as he couldn't control the car. I took him on the Buzz Lightyear ride which he enjoyed even though he didn't shoot too many targets. Brad took him on the Haunted Mansion and Carter enjoyed that ride as well. Despite the fact this was the last day of 4 long days Carter did well. I had brought his weighted pillow to help him with the sensory overload but I never ended up using it in the parks. Carter asked to go on Dumbo and he loved going high up. It was a great day for him which made it an even better day for all of us. Brad brought him back to the resort early so Carter could have dinner.

I was really surprised how well Carter did at Disney World. All I could remember was the last time we went and how horrible it went. Carter has come a long way and it's really nice that we can have a family trip even to Disney World. I imagine he'll do even better the next time we bring the kids to Disney World. Yahoo!

First two days at Disney World

2011-09-26T22:06:00.004-04:00

Our first day in the parks at Disney World was at Animal Kingdom. I had to go pick up the park tickets at Animal Kingdom so that Brad & Merrick could take a tour. After picking up the tickets Carter, Delaney and I went back to the resort to go swimming. Carter didn't want to leave Animal Kingdom but all I had to say was that we were going swimming and he wanted to leave right away. We swam at the main pool at our resort and Carter loved it. He spent most of his time in the kiddie pool but enjoyed the main pool as well. He saw a bucket in the sand and said he wanted to make a 'tower'. I was impressed that he knew that a bucket and sand could make a sand castle. His first attempt didn't work and he got upset but the second went well and he was pleased. We had lunch at Animal Kingdom and was there until the park closed at 5 pm. Carter did very well despite the heat. It even rained and it still was okay with him. I brought him into a play area in Dinoland which he really enjoyed. They had a rock mass with water falling which the kids could walk under. Carter ended up laying under the water and got completely soaked. He was wet for the rest of the day but he didn't seem to mind. We went back to the room for dinner and had a good night.

Our second day we went to Hollywood Studios. It was another hot day but it went well. Carter went on his first ride of the vacation which was 'Toy Story Mania'. He enjoyed trying to shoot the targets and didn't mind when the car made him hit his head when it moved suddenly. I was very surprised that he didn't mind his head getting hurt. He seemed to know what he was supposed to do in the ride as well. Carter was very well behaved all day and didn't have any problems with the heat. He was very patient while we looked for a banana for him. He enjoyed going around in the stroller. Even when it rained he didn't seem to mind that either. When his elbow got scraped up he asked for 'welcome home' and 'a sticker'. He calls our resort 'welcome home' because the doormat says that. 'A sticker' was his name for a bandage. He's such a smart little boy. On our way to our car it started to pour rain and we were getting drenched. Once we got to the van Carter was not upset by all the rain.

It's been a surprising first two days. We were able to get the Guest Assistance Card for Carter. It allows us to go through the Fast Pass entrance without a Fast Pass. It allows us to get to the ride faster. It's nice that they offer that. On 'Toy Story Mania' Carter did very well waiting in line and loved wearing his 3D glasses.

It's been a nice two days at Disney World. We have two more days to go before we leave for Ft. Myers Beach.

Drive to Disney World

2011-09-24T18:21:00.005-04:00

I have to say that the drive to Disney World was the part of the trip I worried about a lot. I had visions of crying, head banging and more happening during the drive. I expected to be ready to run from the car at any moment. It was pleasantly not like that at all.

Carter did have times where he banged his head but it never lasted long. I think the first day was the hardest. We had to get to our hotel room so I could cook Carter's meat. I knew it would take hours to get it all done. I also had to make his apple sauce so I wanted to get to the room as soon as possible. We ended up leaving over an hour later than I had planned so we got to the hotel late.

The hotel was the nicest hotel room I've ever stayed in. It had two rooms, three TVs, a living room, two bathrooms, kitchen table and a full kitchen. It was exactly what we needed. I was able to have the two youngest sleeping in bed without them being disturbed by my cooking and running the dishwasher. Merrick did have to endure the noise I was making in the kitchen because he was sleeping on the pull out couch. I ended up staying up until past midnight but it felt good that I was able to get Carter's meals cooked. We had time on the way down to do some grocery shopping and I was even able to find some gluten free sausages.

I was pleasantly surprised how well it all worked out.

On our way

2011-09-22T06:46:00.008-04:00

It's the morning we leave for our family trip to Disney World and Ft. Myers Beach. I have anxiously waiting for this day for many months. I have both longed for it and dreaded it at the same time. Longed for it because our family hasn't gone on a vacation together for three years. Dreaded it because I know it won't be easy.

I decided that the best way to get the most out of the trip is not to worry about the possible problems Carter might have. We'll do our best to avoid them but they aren't totally unavoidable. He'll get frustrated with things and do things we wish he wouldn't. It's part of our normal life and I don't want to hide from the world just because this is our normal. Carter deserves the chance to go on a family vacation just like any other child. I do admit that for the first few months after his diagnosis it wasn't easy taking him out. Staying home really did seem like the best thing. Over time Carter has improved and I've become more brave.

Last night Carter was getting upset by some videos he was watching on Youtube. He is able to google whatever video he wants to watch and knows how to switch the video when it's listed on the right hand part of the screen. His favourite thing to watch is THX video. THX is part of a lot of movie credits of movies he watches so he likes to watch it on Youtube. Last night it was getting him really upset. It was actually quite disturbing because the noise and head banging reaction seemed more extreme than he usually reacts. I'm not sure if it's the change of school or no ABA anymore but there has been a change recently. This situation started to make some panic set in for me and this trip to Florida. I just had to push it out of my mind. We are going and I can't worry about maybes at this point.

We're off to the happiest place on earth ...

Just getting started

2011-09-17T13:30:00.004-04:00

I asked Carter's school to come up with a schedule where he'd move from his current one hour a day to a full day. I sent an email to his teacher and the special education resource teacher. Instead of getting a response from either of those people I got a call from the Principal. I couldn't see why the Principal would get involved with this. I guess whatever I said sent off alarm bells and the staff didn't want to deal with this. A lot of different ideas as to why the Principal was asked to get involved went through my head. I didn't imagine any good reason except to intimidate me to do what they want.

Carter is in a special class with one teacher two teachers aides. There are 9 students including Carter. Each student has a different set of needs which I know are a challenge. The thing is that the government funds this class per student so that means the more kids they have the more money they get. The cap of number of students is 10. Overall you'd think that this set up includes people who can manage whatever your special needs child needs.

They suggested (and I wanted) a gradual transition into school. What they thought was a transition plan and my were actually not the same. At first they said we'd play it by ear and then after the first couple of days I heard nothing. Carter seemed to be doing better so I suggested we create a schedule to increase his hours. I told the school that I can't manage the current schedule due to my work obligations. I also said he'll be starting up government ABA in the next few months and I want him ramped up in school before then.

When I spoke to the Principal she just suggested a meeting of everyone involved and used words such as 'best for Carter' and 'keep Carter out of danger'. I wasn't expecting to basically be presented with no solution for a long period of time. She knows we are going away and this won't be dealt with until we return from our trip. What I disliked the most is the wording she used in our short conversation. When I thought back to the things she said I got the impression she was trying to target my motherly feelings and make this out to be that if I got what I wanted then I'd be a bad mother because that isn't what's best for Carter. I have dealt with school staff for many years and they are in many cases paid bullies. I told them I couldn't continue with this one hour a day schedule and they didn't even suggest increasing his hours by half an hour. We have three more school days before we leave and I know what's going to happen when we return. They'll say because we've been away that he'll have to stay at one hour.

I'm not going to be made to feel guilty because I can't transition Carter into school on what they think is best for Carter. I have to keep my job and that fact isn't going to change because they want it to. It costs me extra for every day Carter is not in school full time. I have additional day care expenses. For every week he isn't in school full time I'm losing $50 a week in day care costs. After paying for two years of ABA therapy each dollar that goes out the door that doesn't have to is like another nail in our coffin. What's best for Carter isn't something we can give him anymore. What's best for Carter is the structure of school and not spending countless hours on the computer, watching TV and any other non structured activity.

There's one thing I know for sure... they won't know what hit them if they try to tell me I'm a bad mother because I don't bend to their will!!!

Preparing for our trip

2011-09-13T22:21:00.009-04:00

As the days get closer to our trip to Disney World and Ft. Myers Beach I find myself trying to squash the feelings of apprehension that I'm feeling. I want so much for us all to go on a family vacation but at the same time it seems like such a monumental task.

I need to remember so many little things that would make the trip easier. For example, if I remember the empty tape dispenser then it will be easier for me to make the supplements in the syringes. I use it as a stand to allow me to empty capsules into the syringe. Another item is the corn holder that I use to puncture and squeeze the liquid out of the liquid capsules. That's just two of very many things that will make things easier.

I hope that all our plans for places to cook meals works for Carter's dietary needs. I really want to avoid any infractions on his diet and allergies. It's so hard to avoid ingredients when you aren't the cook. Carter is now eating any meat or vegetable I put in front of him so this will make our trip a lot easier. I have reduced his apple sauce to breakfast and lunch and not at dinner. Not having it at dinner will make the trip easier as well. Eventually I plan to only have the apple sauce at breakfast. I've been wanting to keep it around because I fill it with diced vegetables, spices and seeds.

Most of all I hope that everyone in the family has a great time. I'm not sure what's in store for Carter. I really hope he enjoys Disney World but I realize it is a sensory overload to say the least. We will be bringing his weighted lap pillow (Will I remember it?!?!) to help during the rides and hopefully it will help calm him enough to enjoy them. He didn't do so well last time we went to Disney World but that was three years ago. At the very least we have the resort pool which I'm sure he'll enjoy. Our two youngest kids have never seen the ocean in person so this will be a first for them when we go to Ft. Myers Beach. We have rented a really nice place on the beach so hopefully it will be fun for everyone.

All I have to do is relax and not let the possible Carter problems on the trip get the best of me!

School Adventures

2011-09-10T08:23:00.003-04:00

Well ... we got through the first week of school. I have to admit I thought Carter would have done better than he did. My expectations weren't high but I didn't realize the challenges he would face in his new environment.

The first two days of school all we did was come for a short 25 minute visit after all the students were gone for the day. It gave Carter a chance to meet his teacher and one of the educational assistants. He walked around the room, saw his desk and read some books. He was upset when we left but it was much improved over our visit in June.

For the two following days he came for one hour. The school was concerned about how he'd do with the other students in the room and all the activity. ABA is a great therapy but it's one-on-one in your own space. There isn't a room full of other children with varying needs. Carter found the noise too much. He kept saying it was too noisy. He had problems transition from the door to his desk. There is a bookcase close to his desk so he is drawn to it. They are finding it hard to take him away from that area. You'd think that's a teacher's dream but in this case it causes problems with him doing what he is expected of. They gave him one-on-one support during that hour but he still needed to leave the room to get a break. They did get to teach him some things but overall I believe it was difficult for them.

The hard thing to know is what is the best transition schedule for him. We can't do one hour forever and somehow he has to get used to the activity in the room. I'm not sure what the answers are but I'm hoping he'll get used to it all and start to flourish in this new teaching environment.

And so it begins ...

2011-09-05T19:15:00.005-04:00

Carter will be starting school this week. It's been something I've dreaded and recently tried to appreciate. It is a big change for Carter and I'm not sure how he'll handle it. He is much more adaptive to change but he still isn't great at change.

We'll be starting him with two days of a late afternoon visit when all the other students are gone. Next, he'll go to school for an hour in the morning where he'll get one on one support. They wanted to mimic what he is used to at ABA before they moved him into the typical school day he would experience. I appreciate that they are trying to make this as easy on him as possible. They seem to care about making this a successful transition for him. I met with his teacher, the SERT and the Principal last week to iron out the transition details.

I hope Carter does well and enjoys school. He certainly loves to learn and I'm hoping that they'll be able to tap into that. His teacher is a man and all his ABA Therapists have been women so hopefully that won't be a problem for him. I'm hoping for the best!

THE call

2011-09-02T19:21:00.008-04:00

I was quite surprised to get a call from Kinark the very last day Carter was finishing up with private ABA. They called to let me know that Carter would be starting the 'Readiness Stage' in the fall. His current wait list number is 16 and was 117 when he first got on the list in April 2008.

The 'Readiness Stage' is the ramp up period before actually getting government funded ABA. It involves them assessing him at school and at home. Also, providing support for any larger issues that we are experiencing with him. Assessments are done to provide the information they need to create the ABA programs they will work on with him. I was told before that once this stage starts that ABA therapy will start anywhere between 6 and 12 months. That isn't a great timeline but at least this stage is starting. We've been waiting since April 2008 for this so it's exciting to be one step closer to government funded therapy.

We are also going to be picked up with the first group of the new government program for ABA. This is a different program than Kinark though both are government funded. It's 4 to 6 hours a week and does provide support for any larger issues as well. This program was started to help a broader group of children that the current Kinark therapy doesn't cover. Thankfully Carter qualifies for this ABA as well. It is definitely a low hour ABA which basically means it isn't very helpful but at least its something. ABA works when it's 20 to 40 hours a week and anything under 10 hours isn't very effective for kids with Carter's level of autism. I'm willing to use whatever help they can provide us.

This news ensures us a very busy next couple of years but it will be worth it. This therapy is critical to Carter's success in life.

Over the horizon

2011-08-31T19:30:00.011-04:00

I've decided with the end of Carter's ABA therapy just in view I need to be positive about it. After 2 years of therapy Carter has progressed so much. It's hard to imagine where he'd be if we hadn't put him into private ABA. It's been such a big part of our lives that it's hard to imagine life without it.

It was always very comforting to me that he was getting ABA because I knew how badly he needed it and how much he was benefiting from it. It was nice to get daily feedback on how his therapy was going and the stories of success were always encouraging. It was nice when his ABLLS assessment showed the improvements that we witnessed at home.

Carter will probably get picked up in the spring for the government funded ABA. I'm hoping he gets at least 2 years of therapy but it really isn't something we can count on. There are so many factors involved when a child gets discharged from government ABA. I'm not going to worry about that but I'll be thankful that ABA isn't over forever and whatever happens it is in Carter's future. It will be a juggling act to be doing grade one and 20 hours (hopefully!!!) of ABA a week but it will be worth the effort.

We'll continue with speech therapy with our ABA company and hopefully that will help keep him familiar with everyone so that coming back for the government funded ABA won't be a big transition again. I'm hoping for the best but I know that without the constant support of ABA therapy Carter will find things difficult and I'm sure he'll miss everyone at therapy so much. He absolutely loves it there but hopefully school will be a place where he enjoys himself as well.

The countdown ...

2011-08-29T17:51:00.003-04:00

Things are starting to happen in regards to Carter starting school next month. His class teacher came to observe him at ABA today. In a couple of days his Educational Assistants will come to ABA to observe him. I'm glad that our ABA people told me that the school typically sends out the teacher to observe a student like Carter. I'm not sure if the school would have told me that. It will help the teacher to know what to expect of Carter and make his transition easier. I'll be going to the school on Thursday to discuss a transition plan. We probably won't have Carter go to school every day for the full day right from the beginning. This is a big change for Carter and we want to make sure we set him up for success. He may not deal with the change very well so we have to do what we can to make it easier for him. When I dropped him off for ABA this morning one of the therapist asked me if I was excited about school starting for him. All I could say was "I wouldn't use the word 'excited'". At this point I'm trying to push all my anxiousness out of my mind when it comes to Carter starting school. It's going to happen whether or not I'm ready for it or Carter is ready for it for that matter.

Latest appointment

2011-08-25T21:13:00.004-04:00

We had our follow up with our DAN! Doctor this week. We reviewed Carter's Hair Toxin Elements Test. The tin was rather high so that ended up being good news because he's getting it out of his body. His zinc, magnesium and calcium weren't very good. Carter is on enough zinc so it's hard to know what is going on. He probably needs a repeat of the Red Blood Cell Elements test to confirm what exactly is going on. I didn't suggest it at the time but probably should have. Carter was at this appointment so it's very easy for me to miss a lot of things I would have normally brought up. There weren't any changes in supplements because we're waiting on the secretin. It feels like we've been in a holding pattern for months just waiting for this secretin. I sure hope it all works out and it really does help Carter.

Carter was getting quite hyper while we were waiting at the Doctor's office. I'm not sure what was wrong but he kept throwing himself on the table in the waiting room. He'd run around the room and make noise. When we got into the room with the Doctor he was still very busy and kept jumping. One good thing was that he read for the Doctor. It's nice to be able to show off Carter's skills. It's normally hard to "make" him do something so we can show others how much he has progressed. I was glad that we could leave but felt ultimately that I didn't get to mentioned what I needed to with the Doctor. Oh well, it isn't the first time.

The winding road

2011-08-23T21:50:00.001-04:00

Traveling the road to secretin seems to be a long and winding road. I first started to work on secretin in January.

I had first encountered reading about it in Dr. Kenneth Bock's book about the new childhood epidemics which autism is one of them. Secretin had got a lot of hype a few years back and had some research done but it didn't go very far. It got a bad reputation because it didn't help everyone who tried it for their child with autism. Like many other potential biomedical treatments it isn't a 100% success rate.

I have been maintaining an account on autism360.org which helps track supplements, therapies and symptoms of autism. It also provides a cluster of effective treatments for children with your child's symptoms compared to other children in their database. IV Secretin ranked pretty high in Carter's cluster so I wanted to try it.

I first approached a Nutritionist that I have been working with. I hoped she would have some recent information about secretin and autism. A lot of what I found on the Internet was 10 years old. She was able to direct me to a DAN! Doctor in the US that uses it quite frequently. I was able to get my DAN! Doctor to speak to him and learn about it. My DAN! Doctor agreed and we set about "sourcing" the secretin so Carter could try it.

It's been since February of this year we have been trying to get secretin. The first Pharmacy took two or three months and did basically nothing. I would follow up every few days and nothing happened. I got the prescription transferred to another Pharmacy and they seemed to have a better idea on how to get it. They ordered the secretin but it turned out to be on back order. It's been on back order since late June. Now we're trying something new and hopefully it will all pan out.

After all this waiting I'm really hoping that something will come of it. I really think that this is a good possible treatment for Carter. All I can do is wait and push the right people and hope for the best.

A trip to the store

2011-08-21T13:57:00.002-04:00

One of the goals I had this year was to take Carter out more. Take him out to places everyone else goes to in their day to day life. Places like the grocery store, mall and anywhere else. When I wrote those words and made it a goal I wasn't sure if I'd be able to fulfill it. I knew it was something we should have been doing for a long time but due to past experiences it was hard to imagine that it would go well. In years past when I made goals I achieved them without even remembering that I had made that particular goal. This goal was something I knew I needed to achieve but didn't think I'd even attempt it.

We have been taking Carter out more to different stores and he's been doing fairly well. We've brought him to the grocery store, Wal-Mart and even the mall. I make sure the trips aren't too long so that we both come home achieving something and not waiting until his behaviour gets out of hand. I think the success Carter has in going out is not just for him. I need that confidence that if circumstances come up that I can still get things done and not worry he'll have a meltdown or something worse.

I brought him to the mall with our older son just to go to one store. I basically knew what we were getting so I hoped we'd be in and out very quickly. We did end up in the store about 20 minutes. I did have to follow Carter around while Merrick picked out the clothes he wanted. Carter did fairly well but did want to leave the store at one point. After we were done in the store I let Carter decide what he wanted to do next. He wanted to walk around one of the stores a bit and that's what we did. I warned him that we had to leave soon and I think that helped him transition to the car. He was having a bit of problems at the end and I had to carry him to the car. Despite that he's big and 6 years old I'm still able to carry him a fair distance. We got back to the car and came home. Success!

I'm really glad that Carter is getting out and learning in the community. He needs to learn what is expected of him in different situations. This is all good practice for our trip to Disney World. It's only 35 days away and that will be a real test of getting out. I wish that whatever he experiences at Disney World will make him happy and he'll remember how happy that place is. It's a very special place for me and I want to share it with him and all my kids. It really is "the happiest place in the world"!

The days ahead ...

2011-08-17T19:04:00.009-04:00

It's hard to imagine all 3 of my kids will be in school in a short time. So many parents look forward to the time when all their kids are in school. It provides a more structured and predictable schedule. A lot of parents dream about it and can't wait for it.

I'm slowly getting used to the idea that Carter will be in school. ABA has been such a big part of Carter's daily life that it's going to be a big change for all of us. There is so much in store for Carter at school and I'm not sure how he'll react to it.

One issue for him is large crowds. It unsettles him and makes him quite anxious at times. I'm not sure if he'll be okay with it all. It might be just what he needs but how long will it take for him to be able to handle it?

I'm not sure how hard it will be to keep him away from other people's food. In an ABA setting it's a lot easier to keep food away from other kids. Carter's class won't have more than 10 students but there are only so many people to monitor them eating their lunch.

The school bus is certainly a new thing for him. Carter has been on a bus before when we went to Disney World but I think that's about it. He's never been on a school bus before. I hope they do end up having a bus monitor so that he'll get the help he needs on the bus.

My biggest wish is that they see Carter's potential and actually teach him something. It's hard to know what perspective they will have and if they will have a chance to see how Carter can learn. He has such a big thirst for learning that they can really take advantage of it if only they notice it.

So many unknowns at this point but most of all I'll have to trust that they can take care of Carter well. I will certainly monitor the whole thing but learning to trust will be an uphill battle.

Saving me

2011-08-14T12:45:00.014-04:00

I brought Carter for his monthly IV Glutathione infusion. He is getting stronger and harder to hold for the placement of the needle. Once the needle is inserted he is fine and even starts to nod off. He is completely relaxed after that point. The whole process doesn't take too long. We've been doing these IV's for probably a year so he's used to it. We retested his glutathione levels last December and found his levels are just adequate. His body can't retain the glutathione, he doesn't get infused enough to build up too much. It's unfortunate that these infusions are necessary. Our Doctor wants us to do it twice a month but we can't afford it right now. Maybe in the future we can increase it to two.

During this recent infusion Carter said the most intriguing thing. He said to me "Mommy, thanks for saving me". I really don't know where that came from. We hadn't said anything and he said it out of the blue. Those words were words I wanted to hear but I'm not sure what it may mean.

Also, after the lab guy took out the needle Carter said to him "Thank you Mr. Friend". I was very surprised that he spontaneously said thank you and then said Mr. Friend. It was an appropriate term to use since he doesn't know his name.

I'm hoping the FIR Infrared Sauna we just installed will help detox his body and get him healthier.

Body Ecology Diet book conclusion

2011-08-08T20:43:00.025-04:00

I finished reading Donna Gates' 'Body Ecology Diet' book on the weekend. I found some more ideas that I think will work for Carter.

She suggested drinking organic, raw, unfiltered apple cider vinegar that contains the "mother" of the vinegar. It's usual to suggest vinegar when trying to heal the gut and get rid of yeast overgrowth. Vinegar is usually a no-no but she says that in this situation it's great for the gut and makes the gut more alkaline. It also contains pectins and enzymes that help healing as well. I've already started to give some to Carter. I remember my Dad used to (and probably still does) drink this stuff. It's pretty strong and potent and I can only give Carter 1/2 tsp or a bit more. I put a bit in his very watered down juice and I mix it with water and his supplements during dinner. I'm not sure if I've seen any changes but I know his bowel movements are looking better. I can't say it's due to this because we just finished some medication that might have helped with that.

I liked Donna's idea of making soups and putting ocean vegetables in the soup. I don't think I've seen more than kale in a store so it might be a challenge to find ocean vegetables. She relies heavily on ocean vegetables in her diet. A lot of them I have never heard of such as agar, arame, dulse, hijiki, kombu, nori, sea palm and wakame. Some are good for soups such as kombu and others aren't like wakame. I am going to try making soups and find some kombu. I have some other recipe books that have great ideas for soup. One idea that was repeated in this book that I've read before was not to be closed minded about what to have for breakfast. Having soup or more of a "dinner" meal is okay. A good breakfast in whatever form is better than nothing.

I'd have to say one very negative thing about Donna's book is the following quote:

With a systemic infection like candida and lowered immunity, babies are being foolishly vaccinated by parents playing the game of Russian roulette, hoping their child is not the one who succumbs to autism.

What!?!?!??

First of all, most parents don't even know what candida is or that their child may have lowered immunity. When have you been to a Doctor that asks you questions about candida and what sickness your child may have had before a vaccine? Mine never talked about it and didn't even believe in it when I told him about candida.

Second, I believe vaccines play a part in a lot of cases of autism but the facts are that there is no proof that vaccines cause autism. No study has supported it but only suggested more study is necessary. What are parents told regarding autism and vaccines ... there is no link. The love the parents have for their child and not wanting them to get a preventable disease makes parents want to believe in all the garbage their told.

Third, no person with a pulse would knowing play Russian Roulette and hope their child doesn't get autism. That is probably the stupidest thing I've ever heard. Where does she come off saying something so ignorant?

Fourth, vaccine injury comes in many forms and it isn't just autism. A short list of possible adverse reactions: ADHD, allergies, asthma, death, and the list goes on.

It's too bad that she feels she should target poor parents that were only trying to do what is best for their child. The medical community is lying to us and parents get the blame. Why is that? I just don't get it.

Despite her stupid comment I still plan to take advantage of the things I've learned. So far Carter's been on coconut kefir for the past month and I plan to continue. As I previously mentioned he is on some apple cider vinegar. My next goal is to introduce soups that have ocean vegetables in them. If I can find them. I think we can learn from almost anyone and I have learned a lot from 'The Body Ecology Diet' book.

Should I be excited?

2011-08-05T19:45:00.025-04:00

A few months ago in the news there was mention of a large sum of money the government was going to provide to support families with children with autism. What little I read about it made me almost uninterested in what this might mean for Carter and our family. I figured it was another failed attempt to provide very little support for a crisis situation in our province. What one person considers "support" another person wouldn't.

I was a little surprised that the money has actually gone towards a program to provide "ABA-based Services and Support". This is exactly what the notice said:

- Help children with Autism develop skills in the area of: Behaviour management/emotional regulation, communication, social/interpersonal,and daily skills
- Provide education to parents on how to apply ABA strategies so they can help their children maintain or generalize these skills
- Involve an assessment of the child's strengths and needs
- Involve between 2 and 6 months of service depending on the child's identified needs
- Be delivered through individual or group sessions as appropriate;
- Typically be conducted between 2 and 4 hours a week.

This description sounds like Kinark's "Readiness Phase" that those on their wait list get right before the actual real therapy starts.

The good news is that it's for children up to the age of 17. Also, that it's not just a diagnosis of autism but including PDD-NOS and Asperger's. This is different from the Kinark IBI/ABA Therapy that Carter is current waiting for. Kinark's IBI/ABA is restricted to those who are moderate to severely affected by autism and not PDD-NOS or Asperger's. Kinark typically provides IBI/ABA for 20 hours a week and the length of how long this therapy is provided varies from child to child.

Not to sound ungrateful but 2 to 4 hours a week is nowhere near enough to help children with autism. They require intensive one on one therapy. Even the 20 hours that Kinark provides is very far from what should be provide. 30 to 40 hours per week of ABA is the most effective for children and at a very young age like 2 years old and for many years.

The way I see it the system that supports children with autism is hemorrhaging and the government thinks a small bandage is the way to deal with it. The one good thing I can say about this new program is that it certainly helps those that are currently completely missed from getting any ABA. I just hope that this new program doesn't take funds away from the program that actually provides more intensive ABA.

I called and left a message so that Carter can get on the wait list. He has to get approved first before he gets a chance of this therapy. I'm not sure but I have a feeling there will be a tidal wave of calls regarding this program. Maybe there is a reason why the program will serve children up to the age of 17!

A new chapter

2011-08-02T21:28:00.005-04:00

There are some days where I have to push everything out of my mind when it comes to Carter. There are so many changes in store for him that I can't even bare to think about it. He's been in ABA Therapy for the past 2 years and in 4 1/2 weeks it will be over. This therapy has been his life for a very long time and suddenly it will be gone. He'll end ABA and then start school for the very first time. We'll be sending him off on a school bus all by himself. He'll go through his whole day by himself. He'll come back on the bus without us. It's all too much to stomach as this point. I'm so afraid for his safety and how he'll manage this new chapter in his life. One thing I know is that change is the last thing a child with autism thrives on. It's such an integral part of life and yet it usually is a struggle.

Our ABA people gave us a social story book about taking the bus. I plan to start reviewing it with him so he knows what to expect. I need to bring him to his school so he can have another look at it and get used to it. The attention and support that Carter gets now won't be matched at school. I'm not sure how he'll do. I'm so immobilized by all that comes with him starting school that I have to push it out of my mind. It's really too much for me to deal with. I have to digest all of this quick and be a strong support for Carter. I just have to...

Wandering ...

2011-07-30T12:38:00.008-04:00

I often worry about Carter wandering away from wherever he is. He is getting older and much more adventurous. I know he is developing an understanding of danger which is a critical piece to him staying safe. As a parent you believe you are the only one who can properly and safely look after your own children. You have your own way of doing things and you can control things with the knowledge you have about your child. There will always be times when you can't foresee a 'loop hole' in your security measures so that's why I really want to get a GPS for Carter.

We've done some research over the past few months and found different products that are available. None of it comes cheap so we haven't been able to afford it. At this point I'm not sure if we can wait until we can afford it. Carter is starting school in the fall and we are taking a family trip to Florida; Disney World and Ft. Myers Beach. I'm afraid of what both those events will open up as far as possible wandering on Carter's part. He is very smart and reads a lot so he is willing to do things that he wasn't before.

I hope we can find a product that works and that he's willing to wear. What I like about some of the products is that the child and parent can communicate through the device. There have been far too many children with autism wander and die because their parents didn't know where they were until it was too late.

Body Ecology Diet book

2011-07-26T22:49:00.000-04:00

I’m reading the Body Ecology Diet (BED) book by Donna Gates now and I’m a bit frustrated with details that seem to contradict what I’ve been told.

I was told to give Carter Kombucha but Donna Gates’ says that it contains bad yeast strains. Also, the coconut kefir should not be taken at the same time as proteins such as meat. I’m not saying that her reasons are wrong but I just don’t like all the rules when it comes to introducing and using the suggestions she has. I knew it would be a learning curve and it would become second nature at some point but it all seems overly complicated.

She does feature her own products quite a bit which I guess makes sense considering she created the diet. She does offer solutions that don’t involve her product but then she always cautions against using other products because of one reason or another. It makes it all so frustrating. The products aren't available in my area so I'd have to order them on-line and the only company I found over charges. I have used the Cocobiotic product and liked it for Carter. I did use the Body Ecology Diet Kefir starter which was helpful.

Over the years after introducing so many other diets like GFCF, allergy avoidance, SCD, GAPS, Nutritionist suggestions and now BED I have already done some of the things she is suggesting. She heavily relies on adjusting what you are doing based on how the person on the diet feels when introducing something new. I would not have that information from Carter so it makes it really difficult to judge what to stop or adjust or do next. It is very much geared towards adults.

I find with most books about diets it’s always written from the point of view that this works for everyone and they have figured out why so many people aren’t healthy. One interesting idea she mentioned was cleaning out the colon with something like an enema. I know it isn’t a very nice process and especially doing it to a child that doesn’t know what is going on. It could really traumatize them but if you believe what she says there is a lot of stool that is in the intestines that is stuck and should be cleared out. Though she is gearing her comments towards adults.

I'm half way through the book so hopefully it will seem clearer and easier to follow by the time I'm done reading it.

In the Media

2011-07-22T07:34:00.006-04:00

Please click on the entry blog title for an article written regarding Murdoch (News of the World owner), Dr. Wakefield, vaccines and autism.

Quote from article:

"Here’s the part of the story we didn’t get. Brian Deer is the reporter who through the Sunday Times of London, managed by James Murdoch, was hired to destroy Wakefield. James Murdoch is on the board of the company that makes the MMR vaccine. Deer was both the journalist writing on Wakefield and the person to bring a case of“fitness to practice medicine” to the British General Medical Council, resulting in Wakefield losing his license. Parents whose children were examined by Wakefield were denied the right to testify on his behalf."

Finally ... it's finally being addressed outside of the autism community.

An update

2011-07-21T21:26:00.002-04:00

The latest appointment with our DAN! Doctor went well.

We reviewed the Organic Acids Test that was just run on Carter. We hadn't done one this test for a year so I was interested to see the results. His clostridia levels were high which explains the behaviour we've been noticing lately. Due to the fact that clostridia is a neurotoxin it causes behavioural changes. Carter has been very weepy at times, easily upset and unhappy at other times. I wasn't sure if it was that he was getting older or that it was related to some underlying medical situation. Clostridia is bad bacteria so it's impact on the gut is not good.

We were hoping this test would answer the question as to why Carter's bowel movements have been green for the past couple of months. The Doctor felt it could be due to the chlorophyll he's on. I had done some research and knew green vegetables could cause the green bowel movements. I didn't think the chlorophyll could be it because he's been on it so long but the Doctor said he may not need it anymore. After I got home from the appointment I did some research bad bacteria and chlorophyll can cause bowel movements to turn green. The Doctor said to go off the chlorophyll to see if it clears up the issue. We got a prescription to clear up the clostridia.

We got a prescription for an anti-viral due to being on the Biofilm Protocol. I mentioned that I felt it was a good likely hood that a viral issue may have been caused due to the Protocol. He said he had heard of using an anti-viral during the Protocol so he gave me a prescription.

We had run a Hair Elements test a few months ago and it had said this lithium levels were basically non-existent so we've had him on Lithium for the past 6 months. Carter's prescription had just run out so I figured that was it but due to Carter's current unstable behaviour the Doctor wanted him to continue with the Lithium but this time Lithium Orotate. Lithium Orotate is a much better version of lithium because it's better absorbed. It's actually illegal in Canada but can be compounded by a Canadian Pharmacy legally. I'm not sure why there is that distinction but if it's a better form then all the better. We will be repeating the Hair Elements test to see how things are going.

It was a good appointment and I'm looking forward to seeing the results from the hair test.

Murdoch & Autism

2011-07-19T21:46:00.006-04:00

The Rupert Murdoch scandal in the UK has far reaching effects throughout the media in the world. Not being from the UK and not aware of how they do business I was not even aware of who Murdoch was.

The first problem that came to light was the allegations of phone hacking. The reporters would phone hack into people in the news such as Prince William, Hugh Grant and even murder victims. One case of a murder victim was quite upsetting. ‘The News of the World’ reporter (Murdoch’s newspaper) hacked into the young girl’s voice mail and deleted voice mail messages. The police and therefore her family thought she was still alive due to this phone activity. She was later found dead and had been well before the voice mail messages were deleted.

It turns out that Brian Deer used to work for ‘The Sunday Times’ newspaper; old name of ‘News of the World’ paper. This paper is managed by Rupert Murdoch's son, James. It has sent some writers of ‘The Age of Autism’ on-line newspaper into an almost giddy state. The word ‘giddy’ could be an exaggeration but this could very well uncover some of the illegal activity that Brian Deer has been a part of. He had gained access to some confidential medical information for the Lancet 12. This illegal activity has been ignored by those that would prosecute this type of activity. It turns out that Murdoch had far reaching impact on the Prime Minister and many other political decisions. GlaxoSmithKline appointed Rupert's son James to their board in 2009. Within a couple of weeks of that appointment at least 5 articles against Andrew Wakefield appeared in one of Murdoch’s newspapers ‘The Sunday Times’ by Brian Deer.

Ultimately it’s hard to know where all of this will lead because even the people running the UK are probably involved with the illegal activity by this newspaper. During the current UK Prime Minister’s term Murdoch’s executives have visited him 26 times. The news reports that for the last 30 years if you wanted to be elected you need to have Murdoch on your side. Murdoch’s newspapers have been “making the news” that they want reported. It sounds to me like for the right price his newspapers will do whatever it takes to provide whatever story that they want written regardless of the facts.

I’m not sure if this revelation of these business practices will somehow correct the past lies about autism, vaccines and Andrew Wakefield but hopefully it will provide one thing to the public … the understanding that just because you read it in a newspaper doesn’t mean it’s the truth. That goes for any newspaper in any country. Murdoch owns Fox News in the US and other media establishments so it’s hard to say how far reaching these illegal activities have been allowed to run.

Picnic

2011-07-16T19:11:00.007-04:00

We brought Carter to a picnic at a local park. The park had large picnic areas and a rather large play area with rocking toys to ride, 2 play structures, 2 swing sets, 1 good sized train and 1 good sized caboose.

I was glad to bring him to the park and play among the other children because he doesn't get a lot of time with children we don't know. He did fairly well except he didn't always stay away from the bottom of stairs and threw sand on the slides. At one point he threw sand in Delaney's face but I knew it wasn't because he was trying to be bad. It was so hot so it was hard to deal with the heat and having to run around trying to keep track of him.

The worst part was going back to the picnic with a group of people we didn't really know. My Mom's friends invited us so I thought we really should go. It was only me, Delaney and Carter. Brad & Merrick are still in Ft. Lauderdale after finishing their cruise. Carter was getting in the way of people trying to get drinks. He tried to sit in people's lawn chairs even when they were still sitting or laying in them. He tried to grab other people's drinks. To top it all off when I tried to get him away from something he shouldn't be doing he went over to the wooden picnic table and hit his head on the seat. Yup, that was my signal to leave and go home.

I wish going to something like this wasn't such an ordeal. I barely had a chance to eat anything and then I had to leave. I don't really care that I didn't have much to eat. I just wish that going out to things like this was actually enjoyable rather than horrifying.

National Epidemic

2011-07-14T20:17:00.008-04:00

When you hear the words 'National Epidemic' what do you think of? When you add that words with 'The American Academy of Pediatrics' (AAP) what would you imagine?

It recently was reported that the AAP has called accidents related to children getting hurt from trampoline accidents as a 'National Epidemic'. Click the blog title to see what the AAP had to say about trampoline accidents. 2% of all US children have autism and the AAP won't call it a 'National Epidemic'.

This is why the issues related to autism aren't being dealt with. The very organization that is supposed to call out on behalf of children is doing nothing. Until that changes we'll get more of the same.

Same what you ask? Parents worried their child with get autism. They aren't sure if they should vaccinate their child. Should they have children at all if they can "pass on" a susceptibility to the condition. The list of concerns are almost limitless and it looks like the answers to these questions aren't coming any time soon.

For those of us who already have a child affected by autism we don't have to worry about "if". Our biggest worry is when "someone" will get their act together and start seeing the increase in autism for what it is. It's a devastating epidemic of global proportions.

Emotions

2011-07-11T19:35:00.008-04:00

I think emotions are probably the hardest part of autism. Always battling with your own emotions, your child with autism's emotions, your other children, and the list goes on. Some days I'm just exhausted mostly because I'm turning things over in my mind. The subjects seem to be limitless when it comes to worrying about someone like Carter.

To name just a few things I worry about regarding Carter ...

How he'll do when he goes from ABA Therapy to Public School. It's such a huge change for him. I'm not sure how the staff will react to him and what support he'll get. I know he'll need time to adjust but it will be a difficult challenge for him.

I worry about what struggles he'll still have when he approaches his teenage years. The older he gets the less tolerate people will be of his habits. Autism is relatively invisible to someone who isn't aware of the symptoms. Some are very harsh and make matters worse.

I worry about making the right choices for his medical treatment. I know we work with an experienced Doctor but my research is critical for new treatments and tweaking old ones. I don't necessarily believe that the only road to improvement for Carter is through his medical treatment but I know if he isn't feeling well then he won't learn what he needs to.

I wish for the day that I can take things in stride and not worry so much. At this point I'm not there so a day like today is very tiring. I'm pushing myself from sun up to sun down. All I can focus on right now are the quite moments when the kids are in bed and I can relax. Peace and quite ... maybe...

2 months left

2011-07-08T17:46:00.009-04:00

Carter has 2 months left for his ABA Therapy before it's over. It's hard to imagine that 2 years have already past since he started the therapy. I can honestly say it doesn't feel like it has flown by.

It's been a therapy we really believed in and wanted Carter to have. We believed that we couldn't wait for the Government to provide ABA. It is very well documented that children with autism need ABA as soon as they are diagnosed. The sooner they provide the therapy the more effective it is. It's critical to get them young so that they haven't formed habits that might not be changed. The government doesn't provide therapy right away and it's not because they don't believe it works. The do believe it's effective but they choose not to fund the program properly. 3 months ago Carter's wait list number was 27. I reviewed my records of the wait list numbers I have been provided since 2008. I believe he will get picked up around January 2012. That would mean a 3 3/4 year wait for therapy. That fact is more than disgusting, it should be considered a crime.

When the government does finally provide the therapy it will only be 20 hours a week. At a minimum therapy should be 30 and optimally 40 hours a week. Carter will have to sacrifice his education so he could get the needed ABA Therapy. If he was given therapy immediately upon diagnosis there could have been a better chance he wouldn't have to give up school for the therapy. Even though this is all very frustrating there really isn't anything one can do. Writing letters to the appropriate officials is maddening because their replies are filled with them patting themselves on the back for funding the therapy at all.

My wish is that Carter gets the most out of the ABA Therapy while he has it. He enjoys it and does well with the programs that they have him in. If I could have one big wish it would be that he could get his 30 to 40 hours of therapy a week and still get an education.

Crazy House

2011-07-04T19:40:00.005-04:00

Sometimes I feel like I'm living in a crazy house. Everyone seems to be acting like a lunatic and I'm supposed to manage it all. It seems so ridiculous it can't be true.

I find myself wondering how it all got this way. I'm not sure if it's because school is out or the moon is full or I'm being punked. The kids are at each other and can't manage a sentence without it being an insult to the other kid. In the middle of all this is Carter. He is doing his thing which sometimes includes yelling or hitting his head with his hands. I look around and wonder to myself if all of this is normal and I'm supposed to be handling this better.

All I want is quiet and all my kids to be happy, healthy and most of all neurotypical. I sometimes wonder how autism ended up in our family. Did I do one too many bad things when I was growing up? Did I eat the wrong thing when I was pregnant or nursing? Was it all out of my control and it was going to happen no matter what I did?

I just didn't imagine motherhood being like this. I knew my kids would test my patience and do all kinds of crazy things but I never thought autism or ADHD. I'm sure most don't imagine their future family with these kinds of challenges. I try to make sense out of it all and the thing is ... it doesn't make sense. We weren't meant to have families like this so there is so point in trying to figure out why when it's already here.

All I know for sure is that my house is a crazy house and I don't see it changing any time soon!

Developmental Pediatrician Appt

2011-06-29T22:31:00.002-04:00

Carter had his latest appointment with the Developmental Pediatrician. He has one every year and this will be the last one. The program that he's a part of ends at age 6 so if we want another specialist to monitor him we'd have to find someone new.

I had a whole new perspective on this appointment and was much more relaxed about it than usual. I knew this appointment wouldn't be anything significant for Carter so I was just able to report his progress. This was the Doctor who diagnosed Carter so I've always had mixed feelings about her. I know it isn't her fault Carter has autism but she still delivered the news. The way she delivered the news was quite callous. It took me a long time to make that something that didn't matter. Since then I've met a lot of professionals that don't care so she isn't a novelty, unfortunately.

She seemed pleased by Carter's progress which was nice to hear. Carter did have some issues surrounding the toys or items she wouldn't let him have. Every time we see her she has multiple items she doesn't want any child to touch. For someone in her field she doesn't seem to get that. Why not have the items removed when she has appointments with children, especially children with autism? At times she seems a bit clueless so despite her credentials she isn't the sharpest pencil in the box.

I'm glad this chapter of Carter's care is over. It will be nice to make this Doctor a distant memory. It's not that she isn't pleasant but I find the appointments without much purpose. Each time Carter has one less professional to see I feel like we've accomplished something. My part-time job is appointments so it's nice when one goes away.

Carter's first school visit

2011-06-27T20:30:00.008-04:00

Today, Carter and I went to visit the public school he'll be going to in the fall. I thought it would be a quick visit and didn't think much of it. I had asked that he could see the school before the fall so that he would know where he was going. I know that in Kindergarten they usually let the kids visit once before the school year starts so they are familiar with the classroom.

I was surprised that the short visit ended up being hard for Carter. I blame myself partly because I didn't do a whole lot to prepare him for the purpose of the visit. I explained this was where he was going to school and that we were visiting. What I should have included was the fact that we weren't going to stay in any one location for a long time.

The SERT (special education resource teacher) showed Carter the Library and introduced the Librarian. The Librarian came over and said hi to Carter and Carter say hi back. Carter really wanted to go in the Library but we had to move on. This was when he started to be upset. We walked to his classroom and he walked right in. They had a fan going which really bothered Carter. He walked right to the bookcase and picked out a book for the boy that was following us. Carter then found the toys and it was really hard to get him away from them. I literally had to pick him up so that we could go to the computer. For some reason the computer didn't hold any interest to him. We saw the bathroom and she showed him the kitchen. It was difficult to get him to leave but I did. Once we got to the lobby Carter really started to get upset. He kept repeating the same thing over and over again "Goodbye Mr. Reid" who is the librarian he had met at the beginning of the visit. He kept saying "goodbye" and it was just too difficult to hear. I got the feeling he thought he had done something wrong and that was why we were leaving. We were able to leave fairly soon after that.

This whole experience taught me that I really need to prepare Carter better for new situations. I never know when something will be difficult for him to handle. I see so much improvement in Carter that I expect some things to go better than they do. I'll know better for next time.

Coconut/Goat Milk Kefir

2011-06-24T18:44:00.007-04:00

I have wanted to make kefir for quite awhile but didn't have the money to buy the kefir starter. Finally when I did get the starter things didn't go so well.

I bought some coconut water which was partially frozen. I ended up putting it in the freezer because I had to wait until I found the right closable container to ferment the kefir in.

Kefir is quite simple to make. You heat up the coconut water to 92 F and then mix the kefir starter in. Once the starter is dissolved completely you put the coconut water that contains the kefir into a closable container. It ferments for 48 hours or less depending on if you use coconut milk.

My first attempt ended with the kefir turning to a pink colour which is supposed to mean that the coconut is spoiled. I tried again with more previously frozen coconut water and the same result. Finally I decided to try goat milk and it worked fine. I didn't feel very comfortable with the idea of using goat milk because of casein. I figured the goat milk was cooked higher than I do it for the SCD legal yogurt so I figured it would be okay.

I have been giving Carter the goat milk kefir all week. He's been sick with a runny nose and cough the past few days. I haven't noticed any changes in him since starting the kefir. I wasn't expecting to but hoped something would appear.

I've decided from my recent checking on the internet that goat milk is probably a bad choice if I'm trying to avoid dairy/casein. I'll have to buy some coconut milk or try finding some coconut water that isn't frozen first. The starter itself costs $26 for 6 packages and I've already used 3. Each package should make 7 kefir recipes but with my mistakes I haven't been able to do this.

This is the frustrating part of starting something new like kefir. Kefir is a great product to make some good bacteria in the gut but you must make it properly. There is only one store that I know of that sells coconut water/milk and I can't get there for a couple of weeks. I hate that once again the coconut kefir is on hold.

Pictures

2011-06-19T08:52:00.007-04:00

We took Carter to get his pictures taken yesterday. I always feel like I need major reinforcements when attempting an appointment that requires Carter getting his picture taken. Carter is often not cooperative so trying to get that one good picture is difficult. Fortunately the lady we bring him to takes quite a few pictures so it's easier to find a picture that works for us.

This time around I brought the entire family because I needed Brad's help. Carter didn't want to stay on the table to get his picture taken. He often would move and get off the table. We tried different things but he was just a moving target. The background is added later so I had picked a background before the whole process started. After a few failed attempts to get him to comply I came up with the idea to change the background and have him sit on one of the chairs she uses as a prop. This seemed to do the trick and we got the photo we needed. I'm looking forward to seeing the final picture.

I would think by the age of 6 it would be so much easier to get Carter's picture taken but it simply isn't true. As the photographer said he does have a mind of his own. I'm sure he knows why we are there but doesn't want to be a part of it. He did like seeing himself in the camera when she showed him his picture. I'm just hoping that in future years he'll be easier to handle so we can really capture a great picture.

Meals

2011-06-15T16:07:00.012-04:00

My latest goal with Carter is to get him on to a 3 day rotation of different meals.

When we first started the GFCF diet his diet wasn't that great. It was narrowed down to white or pale foods which he imposed on himself. It didn't include anything like vegetables or a great variety of foods. For a good year after we started the diet he was eating GFCF waffles, GFCF cheese, juice, homemade fries and maybe a couple of other things. I knew it wasn't great but at least what he was eating had no gluten or dairy in it which he is sensitive to.

We then started the Specific Carbohydrate Diet (SCD) which was difficult because we had to get rid of a bunch of foods he ate like potatoes, GFCF waffles, GFCF cheese, potato milk and more. I didn't go the proper route when it came to SCD but I replaced each food with something he was allowed. I couldn't always find a proper replacement but we did get him on SCD "legal" foods. The diet seemed to help him to open up what he'd eat along with some supplements to help his zinc/copper/molybdenum levels.

Up until recently each meal was pretty much the same. It made it really easy to plan out what food we needed.

Breakfast - organic apple sauce with chopped up vegetables, chia seeds, hemp seeds, and spices, watered down grape juice, SCD legal goat yogurt and 1/2 sliced banana

Lunch - two pieces of chicken, organic apple sauce with chopped up vegetables, chia seeds, hemp seeds and spices, sliced apple and watered down pear or grape juice and 1/2 sliced banana

Dinner - two pieces of chicken, 2 or 3 pieces of another meat (lamb,sausage,steak,pork) organic apple sauce with chopped up vegetables, chia seeds, hemp seeds and spices, vegetables (carrots,broccoli,cauliflower,yellow beans,zucchini,cucumbers, celery - 3 of these vegetables at every meal) and watered down pear or grape juice

I finally got the courage to start replacing his chicken at dinner with another meat. The first night he was having a major meltdown right before dinner so I was not too optimistic about the results. When he sat down he said "No chicken?". I said no chicken tonight and he was fine. The next night I gave him chicken and yesterday I gave him sausage again and he was fine. I'm sure he was ready a long time ago to have a more varied diet but I was worried about his reaction. He started eating vegetables like celery and zucchini without any issues.

My DAN Doctor told me about a year ago that kids with autism are picky eaters and there isn't anything much we can do about it. Hearing that made me even more determined to help Carter. There are things you can do such as enlist the help of your ABA Therapist which is what we did. New foods were introduced at ABA first and when he was successful with that food then we'd start it at home. Also, as I mentioned before if some levels like zinc, copper and molybdenum are too low then it affects the taste of the foods and therefore your child is a picky eater because food just doesn't taste good. We worked on both fronts and now I believe we can say Carter is no longer a picky eater. It's great that Carter is successful in this area because eating a good and varied diet is important for him and for everyone!

Lost

2011-06-11T17:30:00.009-04:00

Do you ever have a day where you feel lost? Lost in the sea of all the feelings that come with autism? Are we missing something big that could help Carter? Can we afford all that we are doing for him? Can we keep up with his needs as he gets older? Are we doing all we can to help him? Is it all too much and can we keep up?

I hate these types of days because nothing in particular happened but somehow it's a day for panic. It seems like all these feelings are bottled up and are kept for a day without any big worries. Could a day really go by without me feeling slightly crazy over all that I need to do? I feel so much responsibility when it comes to Carter. As parents we all feel responsible for our children but it's different when your child has autism.

There are no "experts" that can guide you and tell you which path to take. There seems to be this burden placed on parents that we are supposed to do what our child with autism needs and never make mistakes. We can't go to anyone and get the full story on our child. Our child remains a mystery despite having raised them their entire lives.

I feel this drive to learn and do all I can for Carter. At times it can feel like a desperate race with no finishing line. Can I keep running when there is no end? It all seems so unimaginable at times. If a day went by without me feeling a little unsettled then I wouldn't believe this is my life. It seems wrong to be in a perpetual state of fright. When will I feel differently?

ISP then and now

2011-06-09T16:53:00.007-04:00

I was comparing Carter's Individualized Service Plan (ISP) from when he started with ABA to the one I got last month. The one from a couple of years ago is 3 pages and the latest one is 9 pages. The length of this document really shows how far Carter has come in the past 3 years.

An ISP is a document that lists all the areas that ABA deals with. It lists what they can do today, what areas need further support and 6 month goals. It is a great document because it lists all that the child can do. As parents we know what our kids can do but ABA puts them in situations that don't typically happen at home.

It was really good to see something concrete that I could see where Carter has improved. The before and after in this case is exactly what you want to see after almost 2 years of ABA. He really has collected a lot of great skills and they will help him when he starts school in September. The only thing is that I don't think it really reflected how well he can read words. Carter loves to read out loud so the school will know quickly that he can read a lot.

At this point I haven't heard from the government funded ABA. The best case scenario he'd be picked up in 6 months and worst case would be the summer of 2012 when he's 7 years old. Imagine if we hadn't put him in ABA at all? He'd be 7 years old before he gets the therapy he desperately needs. How is it that this is acceptable in this time and age?

Swimming Class

2011-06-06T22:58:00.006-04:00

I dreaded this swimming class for weeks now. I had to bring all three kids plus my older son's friend to swimming class. I knew this would be a problem for Carter because he'd want to swim. I was hoping if we didn't say the word 'swim' that he'd not know why we were there. Carter is a lot smarter than I was hoping for.

It was a torturous hour waiting while one child had a class and then the next child. It wasn't that Carter was all that bad but it was hard on both of us. He kept asking to swim and I kept having to tell him he couldn't. The look in his eyes was the worst thing to endure. He wanted to swim so badly and he couldn't. He even took off his shirt and was topless for most of the time we were there.

We went for walks up the hallway, looked out the window and tried playing with the GameBoy. Nothing kept his attention long enough to help the time pass by faster. I finally gave in and let him watch the swimming for a bit. I know that was asking for trouble but I had little else to occupy him with. He seemed to enjoy it but was trying to enter the pool area a few times.

I'm just relieved its over but it made me think that maybe I should look into getting him into lessons. I know they arrange extra support for special needs children so maybe I should look into it. I really do want him to learn to swim. Pools are treated with such toxic garbage so I'm not sure if this is such a great idea.

School Update

2011-06-04T19:56:00.009-04:00

I went to my "home" school to see what their Associated Class was like. They only have Intermediate grades (4 to 8) so it's hard to know exactly how it would look when the primary grades (1 to 3) are included. I was torn when I left.

The teacher seemed really nice and the students were all well behaved. The majority of the class is between ages 12 and 14. This means they'd be moving on to High School shortly. It was hard to image what it would look like with grade 1s and 3s and then these teenagers. They were cooking pancakes when I got there. They teach a lot of life skills along with academics. I was surprised that a school program would deal with life skills such as cooking. I don't think it's bad but I got the feeling the life skills were more of the focus than the academics.

I was shown around the class room and where the primary class would be. I was concerned that they expect one teacher and two educational assistants to work in two adjoining classrooms. It would make it difficult to manage I would imagine but they said there is a similar program in another classroom up north that has the same mix of students. They don't let the kids outside during recess which isn't good. I realize it probably would involve a lot of work but kids need a real break from school activities.

They only decided last week that in the fall primary students would be added to this class. This meant that a lot of things haven't been figured out or decided. It leaves most things as questions and makes it hard to imagine what the program will eventually look like. What happens when the school year is over and things aren't finalized as far as all the details involved with setting up the class? It sounds like this is a good possibility. Also, it was hinted that the whole program (class) could be removed from the school. What?

I talked it over with Brad and it seems pretty clear that the other school is a much better choice for a lot of reasons. I was so pleased when visiting that school for many reasons. They gave me the impression that academics were a big focus and they individualize the programs for each child. It was good to know what is out there for Carter and know that our first choice is the best one.

Trip to Port Elgin

2011-05-29T22:42:00.011-04:00

We decided that I'd drive up with the kids to visit Brad in Port Elgin. He works there during the week and rents a cottage near the water. I didn't think it all through until just a few days before and realized it was a big deal for me to take all the kids by myself for a 3 1/2 hour driving trip. To say the least I was worried.

Carter did very well on the way down. The only time I heard from him was when Delaney was bothering him. When we are driving he never seems to tell us when he has to go to the bathroom. We stopped about 1 1/2 hours into our trip and he was ready to go potty. I had more trouble with the older two kids because they fought quite a bit. We did count horses on the way down but there weren't enough to keep them occupied.

We had a great weekend doing activities around town. We went to the park, the beach, skate park, bowling, mini putting, and the museum. Carter loved the museum especially the exhibit called 'Grossology'. There was a large fake person that you could make burp by pumping a lever. There was a life size 'Operation' body and Carter enjoyed taking the organs out and he didn't worry too much about the beeping sound he'd get when the touched the side of the hole for the organ. The trip to the museum when off without a hitch. It was great to do an activity with the family where Carter enjoyed himself. We brought Carter to the park a couple of times and he loved it. He'd go down the slide, play with the sand, climb up the play gym and swing. There were times when he did talk with the ones at the park. He eyed a Frisbee which he told the man to 'give me' so I was a little embarrassed but at least Carter didn't get upset when I told him he couldn't have it. I do notice that he talks more with people he doesn't know.

What Carter enjoyed the most was going for a walk. I took him out a few times to walk around the block. His favourite thing to do was to look for the WM (Waste Management) dumpster near our cottage. The rest of the time we'd check out the cars and he'd tell me what type of car they were. I also was trying to teach him about looking both ways before crossing the street. I'd never let him go anywhere without me but hopefully if he decides to cross the street before I can stop him he'll look for cars first.

The trip back went much better than the trip down. Carter was so quiet that I had to keep checking he was there. He must have been pretty tired from our time at the park.

Overall I'm really glad that we went to visit Brad in Port Elgin. It gave us the opportunity to do things as a family. All the kids kept busy and I think they enjoyed themselves. It was a great dry run for our trip to Disney World. I realized that I have to be much more organized when we go on that trip. I'll have to make detailed packing lists to make sure we don't forget anything. Maybe our trip to Disney World will surprise us all on how well Carter will do.

Home School

2011-05-26T21:55:00.000-04:00

I got a call today from the School Board Facilitator and it turns out our home school is opening their program up for grades 1 thru 3 for the class Carter qualifies for. This would sound like great news but it is far from what we wanted to hear.

The term "home school" just means the school we are assigned to because of where we live.

I don't like the staff at our home school. The people who should be the most understanding and compassionate are far from that. A good portion of the staff treat the parents like they are children. I've already dealt a lot with the staff that deals with IEPs and IPRCs and find them unhelpful and unsupportive. I was so pleased when I visited the other school. The staff was what you'd expect when dealing with issues related to special needs children. I know it is just a first visit but my gut tells me its a better choice for Carter.

I will be visiting what my home school offers and see what its like. It will be very hard to have an open mind. Just the thought of having to deal with that staff for a third child it just seems unimaginable. I was treated so poorly the last time I went to a meeting with my home school that having to deal with the same group of people for Carter seems doomed to failure.

At this point I'm not sure how to process all of this. I was told I still have the option to send him to the other school. I guess I'll just have to wait and see how the visit with the home school turns out.

Which opinion is for real?

2011-05-22T14:37:00.013-04:00

I've been thinking a bit about something the School Board Facilitator said to me on Monday. When she said that Carter was like a totally different child compared to what she observed the year before. At first I took that to be a positive comment and then my mind went elsewhere.

She had listed what he couldn't do a year ago that he can now. Of course this list was positive and encouraging. If Carter had gone to school last year he would have been placed in a class with much more support. All of this is encouraging to me because someone who really knows what she is talking about can give me a great report on the progress Carter has had in the past year.

I started to think about what my impression of Carter was a year ago and if I saw the same things she did. She didn't paint a very good picture of where Carter was. I know at that time he had greatly improved even though at the time he wasn't potty trained and wasn't very verbal. He had many skills at the time but school readiness wasn't one of them. It made me wonder what they do with a child who isn't ready for school but goes anyway. My "home" school didn't see an issue having him come to school last year and even said he'd do fine in their environment despite never having met him at the time.

All of this makes me start to question everything that is said by any school personnel. Do I just believe what is positive or distrust what they are telling me? One says he is ready for mainstream and the other says no. This is a lesson I've learned regarding autism over and over again. No matter what training a person has they still aren't an expert in your child's autism. They are an expert of their own opinion and that doesn't necessary mean much. That fact really puts a parent of a child with autism at a great disadvantage. In the end there is no one but yourself when it comes to making the right decision for your child. No matter what others try to tell you ... only you know what is best for your child.

School Visit

2011-05-16T21:16:00.012-04:00

Carter starts school in the fall and will be in grade one. He's been in ABA for the past 2 years so we didn't send him to JK and/or SK. We wanted him to experience and learn at school but ABA was so much more important.

I contacted the school board to see what options we had for Carter as far as class placement. Our home school was offering very little hands on support for Carter and we knew he needed more. They offered a class in another school that is only 10 minutes away. I went today for a visit to see what the class, school and staff were like.

The class Carter would be in has 1 teacher, 2 educational assistants and no more than 10 students. The class is connected to a kitchen, bathroom and sensory room. The sensory room currently doesn't have any sensory activities and is being used as a quiet room. Not all the students have autism but I did notice at least one.

One thing they kept saying was that they individualize the school environment for each child. They take each child's needs and provide support around that. They have ways of putting up dividers between the desk if the child needs it. They will put up padding if a child head bangs. They allow some students to sit at a blocked off desk that has chest high dividers around them. They do provide monitored outside time for the kids to enjoy recess outside. The playground doesn't back on to a major street like our home school. They provide picture schedules for the students who are ready for that. Also, they see what the child needs and provides breaks and incentives to get them to learn their work.

I was very impressed with the set up that they have. I was even more impressed with the staff and their attitude towards me. They treated me with respect and were supportive. It almost felt like I was interviewing them for a job. They seemed to want to please and it felt good to have that type of treatment. I definitely don't get this from Carter's home school when I deal with them for my other kids.

I'm very happy that we have a good fit for Carter for school. The class felt like a good place for Carter to be and I'm so pleased about that. I'm still very nervous about him going to school but at least he'll be in an environment with people who care.

Follow up & Plans

2011-05-13T17:43:00.003-04:00

Our appointment with our DAN Doctor went well. He said he noticed an improvement in Carter which is always nice to hear. I would have loved to ask what differences he noticed but I figured that would be a little too much.

The Doctor had asked me to send in my questions the week before so he could be prepared and save time during the appointment. I fretted about this request but figured I'd better take advantage of it and ask for the moon. I some times have a hard time bringing up possible things to test for when it might seem like a long shot. I got everything I asked for so I was more than pleased.

We reviewed a couple of tests and found a couple of amino acids that were too low. There appears to be no mercury load which I wasn't surprised by. That result doesn't go along with how I feel is accurate but what can I do? At this point we are planning to buy a FIR Infrared Sauna so whatever toxins Carter's body contains will hopefully be detoxified naturally through is sweat. We are checking for PANDAS even though admittedly it wouldn't be a very severe case. I noticed a lot of the symptoms are similar to what Carter has so I figured it was worth checking. We are testing for testosterone levels because they can be high in kids with autism. Also, we're checking potassium levels just in case it explains Carter's low muscle tone. The good thing is that we are going to start the official Biofilm Protocol for the next 3 months. Originally we did it only for 3 days last year so I think this is a better option. This was also one of the things I requested in my email.

Overall it was a successful appointment and hopefully things will improve.

My next thing is to check into the Body Ecology Diet. I will buy the book next month when the next release is available. I started with their probiotic drink supplement called CocoBiotic about a week ago. I believe it has really helped Carter. In my research for the Biofilm Protocol I found that foods like kefir, kombucha, coconut water and fermented vegetables are good for resolving biofilm in the gut. CocoBiotic is a naturally fermented drink that contains similar foods to what I just listed. It doesn't replace coconut kefir but it's a great convenient way to help the gut heal. It still is too early to tell but it's worth trying.

Brown Bear, Brown Bear, What Do You See?

2011-05-09T23:26:00.002-04:00

Carter read me a whole book today for the very first time. The title is 'Brown Bear, Brown Bear, What Do You See?' by Bill Martin Jr and Eric Carle.

We were at our DAN Doctor's office waiting in the waiting room and he picked up this book. He sat on my lap and started to read the book. I was so proud that he was reading it like any other child would. I was surprised the receptionist didn't say anything.

After the IV was placed for the glutathione infusion he finished reading the book to me. No applause from the lab guy either. I felt like shaking someone and saying 'Did you just hear what my kid did? He just read a book to me!'.

I am so proud that Carter is doing so well. He hasn't even started school yet and he can read. He has a great thirst for knowledge and has always loved books. Wow! This is such a great accomplishment for Carter. The book may not have been a chapter book but he was able to keep on task, read the words and follow my direction when he didn't see the next sentence. I'm so happy!!!

Last OT Appointment

2011-05-08T21:36:00.005-04:00

Carter had his last occupational therapy appointment this week.

He is getting discharged from the government funded therapy because he'll be 6 years old soon. The idea behind the age discharge is because the Public School system is supposed to take over from there. The facts are is that the wait list is 1 to 2 years and then the child doesn't get much therapy. They may get a block or two of therapy and then get discharged. They don't provide therapy indefinitely even if the child needs it. This is what I've been told so things may in reality be different or they may change by the time it comes around.

Carter's last session went really well. He was much more focused than the last session. He was actually more focused than I've ever seen him before. He'd do one activity for quite awhile. One activity was playing with clothespins. He attached them together and called it rainbow. Carter would put the clothespin on my finger and laugh when I told him it hurt. At one point he said to me "finger hurt" as he extend out the clothespin. Next, he took small plastic animals out of playdough. She had him trace an animal but he didn't do too well. He was continually making continuous circles. He didn't want to finish writing his name which seemed odd because when given the opportunity he usually loves to.

The therapist gave me some sheets with some recommendations on how to help Carter further. She said he has some of the basic skills for holding his pencil properly. She thinks he'll be able to pick up the skill without a lot of therapy.

It's too bad that the therapy is over but at least Carter has gained a lot from it.

In review

2011-05-05T21:50:00.003-04:00

I've been reflecting back on all that I learned at the ARI/DAN Conference. I learned so much and it gave me a lot to consider regarding Carter.

Even though all this information was very important to take in it still leaves me with a feeling of anxiousness. The treatment and therapy options for children with autism are so vast. It's hard to know what will work best for your child. There is no one who can guide you to tell you what will work for sure for your child.

There was talk about finding the subsets of the different types of autism. At this point they believe there are 10 subsets. Determining the subsets would allow a more focused treatment protocol. The treatments good outcome would be more likely because it was designed for your child's subset of autism. I know they are a long way away from determining the subsets but it is encouraging that they are looking at them. It would also include other types of therapy other than ABA.

The difficulty is to determine the best treatment/therapy with limited funds. So much of what is provided for our children is not coverage. The insurance and government are light years behind in providing the financial support families with autism require.

Rather than getting discouraged with what we could do for Carter I want to focus on how well he's doing. His ABA therapists are thrilled with his progress. They have counted 140+ words that he can say. He is doing well with his ABA programs and I can see the change in him. I wish so much happiness for him and better health as well!!!

ARI/DAN Conference - Day 3

2011-05-01T22:32:00.026-04:00

The last day is here and I'm sorry that it's over.

'Treating Autism is a Lifestyle' by Denise Fulton & Kathryn McCready. Are two Mom's of children with autism. Both shared their stories of autism and how their son's have wonderful futures. One is in college and had a taped message for the crowd. He said it was all about hope. She said that we have to have a picture in our minds of a fantasy for our child. To keep that mental picture in our mind to have as a goal. This will help us through the rough times. Both stories were very touching and didn't leave a dry eye in the place.

This time there were 3 different tracks for the General Session. Pre-School, School Years and Adult. We went with the School Years track because Carter is staring school in the fall.

Melissa Olive, Ph.D, BCBA-D spoke about 'Education: School Years'. She is an expert in helping parents help their children get what services they deserve in school. She has an older brother with autism that she helps with education issues such as IEPs. Her brother is now in college. Though this talk was more helpful for those that live in the US it still opened my eyes to what services the school could provide. It shows that you should know what your child has a right to before going to the school to help get services for them. The school will not always provide what your child has a right to.

'Dealing with Diet: School and School-Aged Children' Kelly Barnhill, MBA, CN, CCN was a helpful talk about what to pack for school lunches and snacks. I'm not sure if this applies for Canada but dietary restrictions can be added to your child's IEPs. This might be important to have in writing so that there is no question as to what your child needs. She said that diet most certainly has impact on your child's learning. She explained how important exercise is to your child's health. She listed the recommended amounts of fruit, vegetables and good fats. Its good to go shopping with your child and read labels so that they can be apart of their own diet.

The owner of CARD, Doreen Granpeesheh, PhD, BCBA-D spoke regarding 'School Treatment Strategies: Putting it All Together Across All Environments'. She explained how children with autism might be impacted in school because of their issues with social issues. Getting enough ABA before starting school can make it a lot easier to navigate for your child. Preparing for school before starting can be really helpful. Practicing such things as classroom, play and academic skills can be a great idea.

I moved to the Science Track so I could here Dr. Kenneth Bock speak about 'Autism is Treatable: Perspectives on Recovery'. He explained what is considered 'recovered from autism' by a few other DAN! Doctors. Also, how mainstream doctors don't acknowledge that recovery is possible. Dr. Bock has had 3 children fully recover in his practice. There isn't a consensus as to what recovered means. There is a study currently underway by David Black, PhD regarding 'Symptom Remission in Autism'. He uses the word 'remission' instead of 'recovery. It sounded like the study wasn't over but that they have defined what subjects they are looking for. Dr. Bock then spoke about Ethan as a case history. Ethan was featured in Dr. Bock's video 'Healing Autism'. He showed Ethan's part from that DVD and a follow up interview that happened on Fox News in February 2011. This is one of his recovered children and it was a wonderful story to see. He explained that recovery from autism is possible but is not the expected result for most children. Especially when biomedical treatment is started very late such as in their 20's or later. It was really good to hear his perspective on this topic. Dr. Bock's book was the second book I read after Carter was diagnosed. It was an amazing book that still has a great impact on me.

I'm sorry that the Conference is over. It is always a wonderful, meaningful and educational experience. I am looking forward to using the information and helping Carter and all my kids.

ARI/DAN Conference - Day 2

2011-04-30T22:57:00.020-04:00

Saturday is always a big day at the Conference. So much information and so much to take in.

'Letting the Data Talk' by Dr. Nancy O'Hara. This talk was about the on-line autism biomedical tracking system that was developed by Dr. Sid Baker. Dr. Sid Baker is one of the co-founders of the Autism Research Institute (ARI). He wasn't able to present the talk himself due to a scheduling conflict. She explained how versatile this on-line system is. After entering details about your child's medical history, autism symptoms, therapies and treatments you get many benefits from inputting this information. Not only are you tracking your child's history but your Doctor can enter details and you are able to compare your child to others that are similar (in your cluster) to see what treatments and therapies have worked. The more people who enter information the more statistically significant it becomes. It is anonymous so people don't have to worry that your information is being tracked. It's free and very helpful.

Dr. David Berger 'Treating The Whole Child' was next. He explained how he got into biomedical treatment which was because parents were coming to him asking about how to treat their child with autism. He talked about all the possible educational therapies and how positive reinforcement is a very powerful tool for your child. A Sensory diet was discussed and how helpful it can be to provide a calmer day for your child. Audio Integration Therapy is something he next mentioned. I've seen something about this in 'The Autism File' but wasn't sure how it would help. This therapy uses sound to help with sensory issues. Depending on the method it can be done at home after a professional evaluates your child. He used Vision Therapy on his son due to his sight issues and it helped a lot. He showed us how effective the GFCF diet and supplements are by showing us the ARI rating scale. Amino Acid deficiency can lead to depriving the brain of neurotransmitters, hormones, enzymes, antibodies, immunoglobulins and glutathione. Cleaning toxins from your home is really important. See the following presentation from Dr. Freedenfeld http://autism.com/pro_webcasts.asp. He provided an alternate vaccine schedule to help those that want to vaccinate in time for school but not follow the recommended CDC schedule.

The next talk was very technical given by Robert Naviaux, MD, PhD entitled 'Mitochondrial Factors in Autism'. He explained the difference between primary mitochondrial disease and secondary mitochondrial dysfunction. Those with primary mitochondrial disease usually die before the age of 10. Those with secondary mitochondrial dysfunction are found in high numbers in the autism community. He explained how the determine mitochondrial issues and if there is treatment for it.

Dr. Kenneth Bock's talk was entitled 'Immune System Dysregulation in Autism: What might go wrong, and what we can do about it'. This was an explanation about what is currently known regarding the immune system. It is quite technical and hard to explain and even grasp all the details. The main take away from this was that there is a lot of inflammation in ones with autism. Autoimmune diseases such as PANDAS are found in autism due to immune dysregulation. Neuroinflammation is quite common in autism. Probiotics, diet, curcumin, and low dose naltrexone can help a lot.

'Understanding the Gut and How it Affects the Brain' by Dr. Andrew Levinson. He explained how important having the gut healthy can impact how the brain works. There are more neurotransmitters in the gut then in the brain. Neurotransmitters are things that help the brain/gut communicate with teach other. Those children who develop eczema should not vaccinate because their immune system is already overregulated. If only someone had told me that! TSO is a whipworm from a pig which is a costly treatment that is supposed to do a great job at treating GI issues. Following a Biofilm Protocol can help those with persistent gut issues despite supplement treatment. Investigating underlying causes of things like maldigestion, dysbiosis and immune dysfuction are important. Running tests like stool analysis, testing for primary immune deficiency and food elimination diets can help.

'The Role of the Nervous System in Autism Spectrum Disorder' by Richard E. Frye, MD, Ph.D. He reviewed scans of children with and without autism. Those who had autism showed that the part of the brain dealing with communication aren't working properly. It shows the reason why some with autism can't speak. He explained how some neurotransmitters are directly related to particular issues. For example, dopamine is related to attention, reward and behaviour. Evidence suggests that dopamine blockage improves certain aspects of autism. Norepinephrine is related to arousal, anxiety, stress responses and memory. The abnormalities with this neurotransmitter hasn't been consistent among the autism patients that they tested. Seizures in autism are a lot more prevalent that most know. Some seizures can only be determined by doing a 24 hour EEG.

We were fed during the last talk of the day regarding diet. 'Food as a Primary Intervention for the Treatment of Autism' by Tom Malterre and Alissa Segersten, MS, CN. They explained how important it is to have no gluten in the house when following the GFCF diet. Cross contamination is very easy because of the gluten particles in the air. Cross contamination can happen with bulk bins, toasters, cutting boards, double dipping things like knifes, wooden spoons and in restaurants. They gave us some recipes that were GFCFSF. They stressed the importance of cultured foods, easily digested proteins and nutrient dense superfoods such as chia seeds and hemp seeds. They said that they have clients that have done wonders for their children with autism with having a whole foods diet. Alissa has a blog www.nourishingmeals.com that would really be helpful to understand how they help their own family with diet issues.

We attended the Gala Saturday night. Its an opportunity to speak with other parents about their journey with autism. It's great to be around people who see autism as treatable. This year they organized the tables by topics such as special diets, therapies and puberty. We sat at the special diets table. One lady has three children and one with autism. Her daughter with autism only sleeps 2 to 3 hours per night. We met some TACA people which was really fun. The dinner was great and there was an auction of a few items to benefit ARI. They had Dr. Rimland's son Mark at the dinner and even had some of his art work up for auction. It was an enjoyable evening.

One day left .... it's so sad it's almost over.

ARI/DAN Conference - Day 1

2011-04-29T21:20:00.028-04:00

Today was filled with a lot of great information. It's hard to pick out just a few important points. It is SO great to be back and getting a chance to learn new things and speak with all the vendors. Surfing the Internet for help can't give you what you get at a ARI/DAN Conference.

The first talk was by Dr. Mumper entitled 'Autism: Defined as a Behavioural Disorder, Characterized by Treatable Medical Problems'. The biological aspects of mental health include the fact that mineral status is key in anxiety such as low magnesium. Hormonal status can be caused by a metabolism issue regarding zinc and copper. The emerging model of autism is now a mix between exposures to things like food sensitivities, infections, heavy metals and biologic effects such as gut dysfunction and immune disregulation. In treating common childhood illness it is critical to avoid antibiotics whenever possible and if necessary get a shot instead. When treating your child with autism prioritize what you'd like fixed first and work on that instead of multiple things at once. Always remove what harms and add what heals. For example, remove yeast promoting foods and add probiotics.

Next was 'Diagnosis Matters' by Michael J. Morrier of Emory University School of Medicine. He explained how autism is diagnosed and who can diagnose it. Unlike Canada in the US the school has their own way of identifying children with autism. It's possible to have a medical diagnosis of autism but the school doesn't recognize it. Changes to the DSM (Diagnostic Standards Manual) is going to remove Asperger's and Rett's Syndrome under the umbrella of autism. This change should happen in the next couple of years.

'Assessing Nutritional Status Without Lab Testing' by Vicki Kobliner, MS RD. I thought this was a very interesting talk because it taught us physical symptoms to look for that might mean a vitamin or diet deficiency. Sometimes a child can have a good amount of food but maybe the quality is the issue. For example, clean, non-toxic and nutrient rich foods are important for a well balanced diet. If a person has spooned nails it could mean thyroid, iron or candida issues. If there are many white spots on the nails it could mean a zinc or other mineral deficiency. If a child has a tongue that looks like it has small continents on it it could mean an allergy, yeast or biotin deficiency. Spongy gums could be a Vitamin C, Folate or B12 deficiency. The list goes on and is too numerous to mention.

Dr. Elizabeth Mumper spoke again but on the topic 'Getting Started on Treatment Strategies'. She stressed that taking a good medical and family history can help guide treatments. Preventing gut issues with things like fresh and organic foods and additive free foods can help a lot. Remove bad things like sugar, junk food, dyes, sodas and artificial sweeteners like aspartame are important. A good glutathione level is critical for these kids. Tracking changes after inventions are important because you need to know what works. Adding a few things at one time can prove a big issue for your child and help very little.

'Behavioral Support for the Treatment of Autism' by Doreen Granpeesheh, Ph.D. B.C.B.A-D. She runs the treatment centre CARD and we've heard her speak a few times before. She explained what autism is and how the environment plays a factor in these kids health and learning. She indicated that if a child isn't healthy then they won't benefit much from therapy such as ABA. She showed how the diagnostic criteria for children with autism misses so much such as sensory and medical issues.

'Sensory System' by Steven Edelson, Ph.D. and Patricia Wilbarger, M.S., OTR. I was really glad that they had this talk. It talked about how critical it was to deal with sensory issues after starting with biomedical treatment. Patricia indicated that in some cases by treating the sensory issues then it allows the child to learn at a better pace and lifts what was holding them back. She showed this video regarding a child that many Doctors couldn't help. She suggested this Sensory protocol that was pretty intensive but the Mother was willing to try it. After trying it for 2 days that child had relief from its major symptoms. Within a couple of weeks the child was almost back to normal. It really showed the power of sensory therapy.

The workshop after dinner was 'Promoting Social Skills Development in Younger Children with Autism' by Gail G. McGee, Ph.D. I have to admit I never put enough though into providing social opportunities for Carter. I have to find a way to provide him more opportunities. She explained that inclusion in school is so important because that is how children with autism learn social skills. She showed us some videos of the things they do at Emory University that help kids. It really was surprising how effective it was and that these programs exist. I've never heard about something like that at home.

Tomorrow is another full day and the Conference dinner at night.

ARI/DAN Conference - Thursday Workshop

2011-04-28T20:40:00.023-04:00

We are here in Atlanta attending the semi-annual ARI/DAN Conference. It's so great to be back and I'm looking forward to all the great information.

Tonight I attended the workshop entitled 'Biomedical Treatments for Older Children and Adults' given by Dr. Mary Megson. The talk was about what to do after the early years of biomedical intervention for your child with autism or ADHD.

Some things that are important in early childhood remain important in your teenager or young adult. Controlling oxidative stress, supplements, detoxification, nutrition, sunlight, immune support. When a young person has a setback it could be due to a reappearance of yeast, chronic viral infection, spike in inflammation, antibiotic exposure and metals.

Avoiding antibiotics is still a good idea. If your child needs antibiotics then see if a shot can be used instead of a 10 day oral course.

Natural treatment for behaviours - GABA, l-theanine, Oxytocin nasal spray, B12 nasal spray, and Hyberbarics.

Epsom salts, magnesium, Vitamin D and DHA are great supplements to help your children.

Support in the classroom is critical no matter what stage your young person with autism or ADHD is in. Having a safe place for sensory breaks can help calm them thorough out the day. If attention has gone from good to bad then look at the possible medical reasons behind the change. Yeast could have come back, PANDAS or viral issues could be the issue. It's key not to assume it's something more complicated before checking medical reasons.

Hyperactivity (ADHD) can be helped with avoiding certain foods and additives, add B12, zinc, iron, magnesium, Pycnogenol, omega-3 fatty acids. All these can help with focus.

Stimulants for ADHD should always be started at low doses and go up slowly with the dose. Always be sure to know the possible side effects, when best to take the medication and what long-term effects it may have.

If sensory issues return then check for yeast overgrowth, clostridia, joint compressions, Sensory Integration Therapy, quiet place to decompress, and sensory breaks.

Aggressive behaviours could be due to being bullied, social anxiety, increase of testosterone and possibly used as a teaching moments.

Speech therapy can help with social intent, tone of voice, body language, give and take in conversation. I never knew these things could be helped by speech therapy.

Parents can help their family by befriending the police so they know your child and what diagnosis they have. It can avoid possible legal issues if they know your child has a disability. Also, get a Power of Attorney because once your child is 18 years old you are no longer legally able to make medical and life decisions for your child.

Even genetic versions of autism such as Fragile X can be treated biomedically.

It was a great first talk and I already have things that can help my kids. This is why I feel it is so critical for us to attend these Conferences. I always come away with so much critical information.

Delaney

2011-04-23T09:16:00.008-04:00

I've learned a lot over the past three years since Carter was diagnosed. I found out ways to help him but also my other children.

My daughter Delaney was diagnosed with ADHD about 1 1/2 years ago. We already were treating her biomedically so it was a relief that we had already started the process of helping her. We've seen improvements with her but not as dramatically as with Carter. She struggles with some Asperger's traits as well which makes her situation more complicated than most children with ADHD.

We have been seeing slow and steady improvement with her ability to deal with change, adversity, pressure and communication. She had a pretty bad speech problem which was resolved after 3 years of private speech therapy. It did leave her with some learned reactions to frustrating situations. She often will grunt and make noises instead of communicating. We've been working with her on all fronts. She is particularly having problems with school. She feels the children use her diagnosis against her and target or bully her based on it. They seem to know what her weaknesses are and use them against her. I am not saying she has no responsbility in her actions but if people continually use her 'disabilities' against her then it's an unfair playing field.

I recently met with the school to look into helping her further. I felt blindsided by the information that was presented. I'm in constant daily contact with her teacher and we have both seen improvement in her meltdowns and other issues during school. We recently took her off some foods that she was allergic to and have started some other biomedical treatments. I was in a room with the board psychiatrist, speech pathologist, principal, special education resource teacher and her class teacher. I found the psychiatrist to be arrogant and uninformed. I explained about Neurofeedback which is was unaware of. She went from a novice to an expert in Neurofeedback in about 5 minutes. Her arrogance in how she dealt with everyone was painfully obvious. She obviously felt she was the queen of the castle and the rest of us pheasants were morons. She recommended a ADHD Clinic in a local city which I have come to believe is basically a pill pusher clinic. I'm interested in helping Delaney but with professionals that don't think pills fix everything.

I did come away with some ideas that I can pursue to help Delaney. I refuse to get sucked into the vortex the school has presented. I have an advantage that the school doesn't have. I know Delaney and she has the biggest heart and she knows what is right but struggles with doing it. I know how we are helping her is working and I refuse to go down a path recommended by a psychiatrist who only cares about her opinion rather than the child.

How much longer?

2011-04-20T20:42:00.005-04:00

I spoke with the government funded ABA representative that I get an update from every 3 months. I ask about Carter's wait list number and when he might get picked up for ABA.

I'm not sure why I do this to myself. I expect to hear some type of good news but it never seems to happen. His wait list number is 27. He started at wait list number 107 three years ago. She said her best guess is that he'll be picked up in the spring of 2012. Yes, I said 2012. Is this for real?

The spring of 2012 would mean we've been waiting 4 years for government funded ABA. ABA needs to start immediately after diagnosis and not 4 years later. I'm almost sure that when he got on the list it was a 2 to 3 year wait. I guess it really doesn't matter what they may have said it's what they are saying now that matters.

If I let myself think about the wait for ABA services my blood starts to boil. How can this even be legal that kids aren't getting the therapy the need. Everyone knows that ages 2 thru 6 are the critical years of development. What happens when they get ABA at age 7 or above?

Urghhh!!! It just can't stand what this means for Carter! I'm just glad that we were able to give him 2 years of ABA. I hope the break from ABA in the fall doesn't cause any regression.

Autism Now

2011-04-18T19:39:00.005-04:00

I found this link to a news report by Robert MacNeil. He shares a moving story regarding his grandson with autism. Click on the blog title for the link to the video.

It gives great insight into how autism impacts his grandson and those that love him. It's an important video to watch. It will give you a great picture of what it's like living with a child with autism.

It moved me to tears and gave me strength to know we're not alone.

PBS Newshour from today until April 26th will feature each chapter of the 'Autism Now' series.

One more appointment

2011-04-16T19:02:00.007-04:00

We had another appointment with the Sensory OT. I really enjoy these appointments because Carter loves them so much.

Each activity he does helps give him with the sensory input that his body craves. He loves being squished between two mats. A new thing we did was he went inside an intertube and she covered him with a collapsible ball. He loved the pressure when she pushed down on the ball.

She showed him the picture for crab walk and he knew what to do right away. He really did a great job with the first round of trying it. The second one he wasn't too interested so I decided to do it myself. He ended up climbing on top of me instead. We finally got him to try it again by himself.

Again she put the weighted pillow on his lap and it was like magic. He sat at the table and didn't say a word. He didn't get up and he completed the task she gave him. He had to find the small plastic animals inside the large piece of play dough.

We won't be having another appointment until the end of the summer. It turns out he'll get 2 blocks of 6 sessions before he gets discharged. So far we've had 3 appointments in our first block.

I am trying the new things she has suggested for helping calm Carter. He loves the activities. I hope to incorporate them within his day on a regular basis so he can benefit fully from them.

Wandering

2011-04-11T20:57:00.007-04:00

Wandering is a really big issue facing families of children with autism. There is a constant worry that your child will wander off and something unthinkable will happen. Carter wandered off while at my in-laws when he was 2 years old and almost drowned.

A little 3 year boy in Laval, Quebec went missing over a week ago and he had autism. They have temporarily called off the search for him. He is presumed dead. This story really had a big impact on me. Imagine having your child missing and no one will look for him?

We considered getting a specialized GPS system for Carter but couldn't afford it. Every time I read a story about a child with autism who has wandered or wandering being discussed within the autism community it makes me think about it again. What is best on how to deal with this potential situation? I don't know but I want to feel like I have something in place that will protect Carter.

Energy

2011-04-07T21:59:00.009-04:00

I find myself needing something to make me feel that it will all be alright. There are times I look at Carter and wonder what kind of future will he have. Sometimes he looks so happy, peaceful and even "typical" and other times all I can think is "That's what autism looks like".

I see so much potential in Carter at times. His improvements in the past 3 months have been wonderful. His speech is so much better than it used to be. He is using clearly audible sentences more than ever before. There are times when I ask him questions and he gives real answers. He thought he was going swimming with the older two kids and when I explained he wasn't coming I asked him if he understood. He said "Carter swimming over". I have always understood and believed he did get what we were saying but now he shows us clearly with words.

I put forth so much mental and physical energy trying to get through each day. There are so many things that seem to pile up on top of me. It's hard not to look at the day as a mountain peak to conquer. I have some days where it almost seems manageable despite all that is required of me. Other days I feel a crush of pressure that makes me feel almost manic.

Sometimes I close my eyes I see Carter's face. I feel this wave of love and calmness come over me. All I can see is a wonderful little boy. He is such a courageous little guy who puts up with a lot of things. He has such a strong spirit in him. I never would have imagined such a young boy being so resilient. I believe for some children autism makes them courageous and strong. I believe Carter is one of them.

Zoo Visit

2011-04-04T23:03:00.000-04:00

We went to the Zoo yesterday for a couple of hours as a family. The whole outing went very well. I think we all had a good time and we didn’t need a long amount of time at the zoo to have a good time.

Carter did very well and often would do what he was told when he was doing something he shouldn’t. At times he would get out of the stroller and we could easily get him back in. It wasn’t until almost the end of the morning did he object to anything. They were playing in what Carter called a ‘castle’ which was a large rock formation that you could climb on or through it. He was really enjoying it and didn’t want to leave. Even though he cried and had a problem it didn’t last very long. He liked looking at the animals and getting a ride in the double stroller. I brought an apple which he held for a long time before eating it. Brad and Merrick were pretending to try and take it but he didn’t like it. I think he handled it well.

At the end everyone but me did the carousel. He went with Brad and picked the turtle. The turtle was a stationary animal that had a bench through the middle of the turtle. He enjoyed himself and didn’t have a problem getting off the carousel. When we dropped off the stroller Brad had to go get his deposit back. After Brad was gone a couple of minutes Carter said ‘Where’s my daddy?’. I explained to him where he was and that he’d be back. A few minutes later he asked the same question again. I thought it was a great sentence that he used because he knew he needed to use the word ‘my’.

It was a nice time and it was a good thing to do for Carter. He needs to get out more and get used to these types of situations. We want him to enjoy Disney World and the best thing to do is these short trips to the Zoo. He’ll get used to the idea of what is involved and be better able to comply when the time comes. I think it’s a great way to give him therapy and to expand his mind.

One more year has passed

2011-04-01T23:15:00.021-04:00

I’m not sure how I feel about this day, the 3rd anniversary of Carter’s autism diagnosis. In years past this day seemed to hold some significance to me.

I still remember the appointment with Dr. MacDonald very well. I went into the appointment not knowing why Carter needed to see this type of Doctor. I didn’t understand what a Developmental Pediatrician was. I guess looking back it was fairly obvious that this type of doctor specialized in developmental stages of children. I only went on the appointment because Grandview’s speech therapist recommended it. I brought Carter to this appointment because I wanted to be thorough and thought there was no harm in spending time going on the appointment. Halfway through the appointment I was curious regarding her questions and why she was asking them. I normally wouldn’t speak out but it all seemed so surreal at the time. What was this appointment for? Why was she asking these questions? Like a big dummy I was almost boasting about some of the things Carter was able to do. It wasn’t until days later that I realized that I was boasting about autism traits Carter had. I just thought that he was brilliant and I wasn’t too shy to share it with anyone. I remember telling her that Carter would watch Merrick play a car computer game and Carter would say ‘1,2,3, go’. I remember being asked if he pointed at anything and it made me pause. I realized that he didn’t and wondered how I couldn’t have noticed before. It wasn’t until many days or months later did I realize that he did have that skill but regressed. He had a lot of skills that he lost but at what point I'm not sure. At that point Carter being my third child I had accepted him for the delays and differences that he had. He was such an easy going child compared to my others that I thought he was a blessing. I’m not sure what I asked her when wanting to know what the questions were about but I do remember the answer. “It’s still a bit early in my questions but I believe he has autism”. I remember thinking “autism? what? What does that have to do with Carter?”. It just didn’t make any sense and didn’t compute. I didn’t even really know what autism was so I couldn’t comment either way. I had heard of autism but didn’t know how you determine if a child has autism. The rest of the appointment seemed like a lot of formalities and very much devoid of compassion or even emotion on the part of the Doctor. To deliver news like autism to a mother and not even show feeling is beyond comprehension. She gave me some paperwork and that was it. I left her office with Carter in a stunned state. I next remember coming home and calling Brad during one of his Masters classes and said that the Doctor said Carter had autism. I didn’t think the news could wait until he got home

In those first few days just dealing with the GFCF diet alone was one of the most depressing and frustrating parts about those first few months. Forget about the emotions, struggles, depression, despair, anguish and mourning I was dealing with. I think this year this anniversary is more of noting the day on the calendar. I know the day has great meaning for our family but it doesn’t hold the power it used to. It wasn’t that I dreaded this day each year but it seemed to stir up emotions that were best left alone. I think I’ve moved past those feelings that this day somehow had some power over me. It’s still a sad day and a day I wished didn’t happen. To call this diagnosis a life changing event doesn’t give it the significance that it deserves. I think even calling it ‘universe changing event’ still doesn’t come close.

How did we dealing with or commemorate this day? I took the kids to the open swim night at the Rec. Centre by myself. I think it’s good to build new memories for this day and to finally act and believe like we are a normal family and should do normal family outings. I don’t know if I can ever say we are a normal family. I know it isn’t the normal I dreamed for when I was growing up. It wasn’t the normal I envisioned when Brad & I got married. It wasn’t the normal I expected when I had kids. I think the word normal plays tricks on our minds and makes us believe that what we have isn’t something worth celebrating. Our lives are worth celebrating in whatever form it comes.

Wait Lists

2011-03-29T21:48:00.012-04:00

Carter and I went to the reassessment appointment for his regular OT. He'll be discharged soon because he'll be 6. The school system is supposed to take over the OT. The waiting list for the school OT is typical 1 1/2 years. Once Carter enters government funded ABA (hopefully in December) then he'll have to leave school. They don't allow kids to go to school and get government funded therapy. Yes, the only disability where you have to either get therapy OR go to school. Once he leaves school for ABA then he'll be removed from the school OT wait list (the speech therapy one as well) because they don't keep kids not enrolled in school on the wait list. Once his government ABA is over then he'll return to school and get back on the OT/Speech wait list. Yup, I'll be in a seniors home before he gets the therapy.

The reassessment appointment was a disaster. I don't know what was going on with Carter. When he was getting OT a couple of months ago he was doing great. This time he was unfocused, agitated, upset and hyper. It was so distressing to watch him be that way. This is the only opportunity I get to watch him in therapy. The ABA people seem to think he's doing really well. I think maybe the problem is that we aren't using our "sensory issues hat" and figure out ways to calm him. I still need to ask my Mom to make the weighted pillows. If they are ready I think I'll bring them next time. At least there is a better chance he'll get something out of what little OT his has left. The sensory OT is separate and I don't know how long it will last. I think she told me 8 or 9 years old.

Tomorrow is our next appointment with our autism Doctor. As always I have my list and I hope I get some of the tests run that I want. I guess we'll see.

PICA & Autism

2011-03-25T18:49:00.000-04:00

When I first became familiar with PICA (eating/chewing/mouthing non-food items) I understood that if zinc was low then PICA could be resolved by taking zinc. Now I've learned much more about the possible causes of PICA. PICA may be due to a mineral deficiency, sensory issue or underlying medical problem.

How does one know if PICA in their child is a deficiency is minerals, a sensory issue or just a quirky habit or a combination of these? I am no expert of course but checking mineral status is easy enough if you have access to a Doctor who is willing to look into this. The 'Red Blood Cell Elements' (RBC) test is a great test to run to see how the minerals are found in the tissues of the body. The 'Hair Elements Toxin Test' can show you as well but some of the results could be deceiving. Carter's last Hair test said his zinc was very low despite taking 40 mg of zinc picolinate right before bed. The RBC test showed his zinc was fine. If it's a sensory issue then running a 'Neurotransmitter' test may help indicate supplements that could calm the neurotransmitter that is over/under stimulated. If none of these are it? I guess it's just a habit that a person needs to manage.

For Carter PICA has been an on and off again habit. He started up again and this past February it was much worse than it ever was before. The RBC test showed his zinc was fine but two other minerals were low: selenium and molybdenum. Now I'll find chewed up pieces of paper in front of the TV. He'll take a paper napkin and suck his juice through it. He'll find cardboard boxes or cards and start chewing on the corners. He'll take metal objects and put them in his mouth. In the last few days he has started to suck the locks on doors. My heart sinks whenever Carter picks up some new habit or an old one returns. It feels like 10 steps back when another autistic characteristic returns. There should be some kind of guarantee of these things. If only life was that simple.

Do you want to know what may have caused the PICA to increase? Carter had been on an iron supplement for almost a year. I asked our Autism Doctor to test his iron but the test came back without that result because the blood was "spoiled". The Doctor said he could tell Carter wasn't anemic by the other values he had asked for. I'm not sure why only the ferritin couldn't be provided. He decided we could stop with the supplement. Within days of stopping the iron supplement Carter started eating cardboard more and moved on to paper and mouthing metal objects. I never would have connected it if it wasn't for a post on the ARI list server. The resident "expert" listed the many possible reasons for PICA. I thought I should share them with you because it could help your child and you may find it interesting. Also, have you ever seen that TLC show 'My Strange Addiction"? I always think about the possible medical reasons behind some of the odd habits. Of course, I don't know for sure if Carter's iron is low but he does seem more tired than normal and at times has a pale look to him. He has been falling asleep during the day. Just clues but no proof ... yet!

1. If zinc is low it can take years to build up the proper levels even at 50 mg day.
2. Vitamin B6, or a failure to convert to its active form (P5P), or to a pyrrole problem.
3. Nutrient deficiencies, particularly low levels of zinc, iron, magnesium, molybdenum, chromium and calcium.
4. Lead poisoning, intestinal obstruction or another metabolic abnormality.
5. Medical evaluation should include complete blood count, peripheral smear for eosinophilia, iron, ferritin, and lead levels, electrolytes levels, and liver function.
6. An obstruction series or plain abdominal radiographs may be necessary to distinguish obstructions such as from parasites or bezoars.
7. Many more ideas but looking for an overall imbalance in the body or eating the wrong foods (starchy) might lead you to treatment.

If the above doesn't help them goggle 'Management of Pica: A Medical Engima' and it will give you more details.