Jackets

Sam has decided that he doesn't want to wear jackets or sweatshirts that can function as jackets. As soon as he sees one coming at him he flips out. If I put it on him, he flips out more - screaming, kicking, throwing things, crying - and won't stop until it is gone. He reacts in a similar fashion to new shoes. He also gets out of sorts changing from pants to shorts or short to pants as the seasons change. But, the pants/shorts and shoes issue usually passes quicklywhen he realizes he isn't getting his way. The jacket thing don't seem to be going away. Interestingly, he doesn't mind long sleeve shirts. It is fun.

Little things are so much more complicated

When you have a child with special needs, little things are so much more complicated. You can't just go to watch the high school football game or take a trip to the park without seriously scouting the layout first. You can't just get a babysitter and take a night out (assuming there is any money to go out or get a babysitter). My husband and I went into a panic tonight because he has to leave very early Friday morning for a seminar. It is my husband's job to get Sam up and put him on the bus in the morning. What to do??? If he were typical we could send him to a neighbor or something like that. You just never know what he will get into in a new house. My fear is he could potentially spend and hour jumping on and off their lovely coffee table. Once he is addicted to a behavior, he can't stop himself. Luckily, there is a girl in his class who lives nearby. She is much higher functioning but her mom "gets" the disorder. I am still worried that Sam will give her hell for the 45 minutes he will be there but we are up against a wall here. I can't take the day off because this is the first week of school.

Back to School

In 2 days, Sam goes back to school. I am very pleased with how the home ABA and Parent Training went this summer and I will fight to repeat this schedule next August. Sam will have a new teacher this year and I know nothing about her. I am preparing to write her a lengthy note (I know, I know) because I have a couple of concerns about Sam's transition back to school.

1 - When Sam left school he was on a 40 minute potty training schedule (meaning every 40 minutes a timer went off and he was taken to the toilet). At home now he is fully potty trained and if I try to make him go when he doesn't need to, he gets frustrated. He takes himself every 2-3 hours. I want to make sure they will respect the progress he has made and not fall back on data that is left over from July. The program is SOOOO data driven - for everything- and it frustrates Sam sometimes.

2 - Sam has made a lot of progress verbally. Prompted, he can say "I want ________". He is tought to understand but he is using more words. After carefully reviewing his last progress report I noticed that ALL Sam's expressive programs are for PECS. There are no programs that work on his speech. His speech therapy does a little but it is really only his private speech therapy that make him work to produce sounds. I want to request that they push him to speak a little more and back off on PECS a little. I don't want to get rid of PECS since he may never be fully verbal but I would like to push the verbals kills since he is trying so hard.

Maya will go see the babysitter this week. I wonder if she will remember? The last time she was there she couldn't quite walk and now she runs.

I will be heading back to work next week. It is always a mix of emotions for me when I go back. I am lucky that I like what I do but I miss being home with my baby. I always thought I would be home until my kids started school but finances haven't allowed that possibility.

Our Current Treatment Plan

I are trying a variety of approaches with Sam. Autism treatment has become a real money maker and so I try to approach each option with healthy skepticism.

Sam attends an ABA based pre-school for autistic children. Every child has a well-trained aide and the aides rotate evey 2 weeks. It is a public school program and I know we are lucky to have such a program in our area. During the school year he attends from 9 - 2:45. In July he attends the ESY program at his school from 9-1. It is a little too "campish" for me but the staff are all his regular teachers/aides and he enjoys it. Last year Sam had nothing in August and it was terrible. This year I fought for August services and we have 20 hours of ABA at home and 16 hours of parent training. It works out that Sam has 2 hours of contact with a therapist almost every day this month and it is working otu really well.

I also take Sam for private speech therapy once a week with a woman who does PROMPT. SHe is wonderful and get great things out of him.

We are also tyring biomedical therapies. Dietary interventions proved useless for Sam. He never really had digestive issues so it didn't surprise me that his gut didsn't seem to be a major factor in his autistic behaviors. My personal opinion is that gf/cf and other diet programs are worth a try for anyone with digestive problems but those gut issues are not just an autism thing.

Our biomedical plan also includes various vitamins and supplements. Sam takes a vitamin/mineral supplement made by Kirkman Labs. I didn't like their super nu thera vitamins but their kids multivitamin/mineral capsules have been good. Sam also takes the following in addition to that:
-extra vitamin D (his bloodwork showed he was deficient)
-probiotics
-prebiotics
-digestive enzymes (not sure this is doing anything but it doesn't hurt)
-DHA/fish oil

I saw the greatest improvement when I added the vitamin D and then again when we added the EPO.

Later this week, Sam will get his first B12 shot. Cross your fingers!

All of these supplements were recommended by a qualified doctor.
-Evening Primrose Oil

It Is Not all About Autism

While planning for, working with and advocating for Sam occupies a lot of my time, there is another child in this house for whom I am responsible. Our amazing daughter Maya is 14 months old and she is racing past milestones. She loves to play with toys, feed and kiss her "babies", carry "purses" around the house, dress up, and play outside. While Sam attends ESY this July, I get to spend one on one time with Maya - something I haven't been able to do since last July. This is the final week of Sam's ESY program and although he will receive some ABA in August, it will not be as intensive as regular school. I am relishing each day this week and trying to maximize my quality time with my girl!

Things I Hate to Hear

I check Autism message/support social network sites occansionally and I often read comments like "everything happens for a reason"and "this is what was meant to be". That kind of stuff really gets under my skin. Usually it is framed in some sort of religious context although not always. It troubles me that people can believe God just decided to start striking our kids with this devastating disorder. I DO believe in a very powerful life force that I call God but I believe what happens to us is largely due to our own actions and those of our society. I don't understand how some people can say things like "everything happens for a reason" or "this was meant to be" and still maintain that they have free will.

I know that sometimes these comments are just meant to encourage people to find the good in a situation. The belief that everything happens for a reason might lead one to search for that reason and glean something meaningful and positive. That is a good way to live but I still can't jive with some great wizard in the sky pointing his wand and saying "Autism for you!"

My son was not meant to be like this. It could be genetics, spontaneous mutation, pollution, shots, water filled with prescription drugs, or some other toxic chemical but I believe WE did this. WE, meaning my husband and I, possibly passing on some genetics defect, or WE, meaning society, poisoning our children. It is probably a WE that includes both of those things and maybe something more. Call on God for strength or comfort or peace but as the creator of Autism? No, that is all us.

Autism was not "meant to be". It just is.

Potty

We have something going on here that I really wasn't sure would ever happen - Sam is using the toilet! He has a week and a half off from school (he went back this past Monday). The school has repeatedly told me not to try potty training at home until he was on a 2 hour schedule at school. I respected their wishes until this break. I felt that putting him in diapers the whole time would be a waste. It took about 2 days for him to "get" that what he did at school was the same thing as what we were going for on the home toilet. Then he stayed dry the rest of the week. He won't request the bathroom but as long as I take him on a regular basis, he pees like a champ. Poop is a whole other story. I have known some typical children who took 6 months or more to poop in the toilet so I imagine I am in for months of undie washing. I happened to catch him squatting this afternoon though and I grabbed him and ran him to the bathroom. We had a success and he got a lollipop right away. I don't imagine that any light bulbs went off in his head but hopefully I will "catch" him as often as I can! SO, is he potty trained? No, but he is at least on the way.