Thursday, October 23, 2008

School Time

Thomas started school yesterday. This is the autism preschool that is 2 ½ hours 4 days a week and they have 6 kids, 1 main teacher and 2 aids (trained in autism), and a ST and OT that are in and out of the classroom. Everyone said he did really well. It was so hard putting him on that school bus. The aide and the bus driver were really nice. He seemed a little confused as to what was happening, but he didn’t cry. We was even a little excited this morning for the bus. Everytime I mentioned that the school bus was on its way, he would hug daddy really tight, but he had a huge smile on his face. So sweet. Of course, I have no pictures. Yesterday it was just me and Thomas waiting for the bus and it was raining. Then this morning I brought the camera, but the battery was dead. Hopefully I’ll get one tomorrow. And of course after he left and I was on my way to work, I couldn’t believe I forgot that my cell phone has a decent camera. Oh well.

He’ll also keep getting the school therapists going to the daycare. They are working through the Birth to 3 program, and the preschool is through the 3-5 program. Since he still qualifies for the birth to 3, he’ll continue to get that therapy every other week. It’s so nice that he’s getting so much service now. I went back and was regretting not putting him in the ABA program. I really think he would have done well there, and even thrived there. But I didn’t think it was the best thing for him. I kept second-guessing myself, but now that he’s in this program, I really think it is the best thing for him. And it won’t cost me $400/month. The money was not the most important thing, although it did enter my mind. After all the money problems we had and the bankruptsy and everything, we’ve gotten back on our feet and it is nice to say that we could afford that. But I just didn’t think it was the right thing for them. I can’t even say why, because it was an awesome program that I have already recommended to other people. I just know I’m doing what is best for Thomas and I have to stick with that. And I am very happy with how everything has turned out and what services he is now getting.

We’ve been hearing so many more words, mostly ones that he repeats, but will not use spontaneously. He was starting to say some colors and use them appropriately, but only if we would say them first. For example, we would point at something yellow, and then he would say yellow, and then he’d say yellow again talking about another thing that’s yellow, but after doing the other colors, we’d have to remind him how to say yellow again. I think that he now knows what a lot of these words mean, but he forgets how to physically say them. At least that is my impression of watching him. Anyway, he said several of the colors, and he’s started saying train spontaneously and he pointed at a flower on TV and said flower. That’s one that I know I didn’t teach him, so it was cool to hear.

I don’t think I ever mentioned this. It was about a month or so ago and I’d let Thomas watch TV while I cooked dinner (just about the only time he gets to watch TV), and I forgot to turn it off when we sat down to eat. It wasn’t very loud and I didn’t even notice it was on. We were just sitting there eating and suddenly Thomas gets this look on his face, like he was up to something, then he starts shaking his arms and saying “wiggle, wiggle, wiggle”. Then he’d stop and say “meeeee…..wiggle, wiggle, wiggle.” It was so cute watching him wiggle. By the time I figured out it was the TV, the song was over. But a couple nights later, I forgot the TV again, and he did it again. It was absolutely hilarious. Now I just try to get him to do it every now and then. It’s a song they do at daycare every now and then. It’s great. They do a lot of taped group songs, like the bear hunt. Everybody remember that one? We used to do it in elementary school. Thomas does most of the motions and everything too. He really enjoys those things. It’s so nice to see. I love seeing him participate in the activities with the other kids, and the music really is something he likes.

It’s so nice to see the progress that Thomas has made since February when he first started therapy. He has grown so much and has made tremendous progress. It’s amazing to see the difference. Getting ready to start the preschool program they did a new evaluation. The first since January. It was really hard to read that report. I know that he’s made so much progress and he’s doing so well, but to hear that my son is in the bottom 1% of his peers in his combined receptive and expressive language according to the standardized test…it hurts! I just need to stay positive and focus on the progress and the good things. That’s hard sometimes. But he is the most wonderful kid ever and he has a very bright future. I’ll make sure of it.

Wednesday, October 22, 2008

Did you know...

More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.

Scary, huh?

Now lets consider research funding:

Affects 1 in 25,000
Funding: $310 million

Muscular Dystrophy:
Affects 1 in 20,000
Funding: $175 million

Pediatric AIDS:
Affects 1 in 8,000
Funding: $394 million

Juvenile Diabetes:
Affects 1 in 500
Funding: $130 million

Affects 1 in 150
Funding: $42 million


Thursday, October 16, 2008

Update and a couple weird new words

I’ve really been slacking lately. I keep meaning to update but….. The autism walk was really fun. There were a lot of people there. I was able to let Thomas run around for a little bit without having to worry about losing him. I think Thomas had a good time. When it was time for the actual walk, we mostly walked with Thomas on our shoulders because he was tired from running around beforehand. All in all, it was a good time.

We are finally gearing up to start Thomas in the autism preschool. Our final meeting with everyone is Monday, so we’ll get details then. I’m really nervous. He’s going to have a great time and I’ve heard nothing but good things about the program. But still, he’s only two and he’ll be riding the school bus and will be at the Elementary school and it’s just a little scary for me. I still have not looked at the school myself. Sam really liked it, but I think I need to get over there one of these days to actually see how everything works. I wonder if they would let me go with him on his first day. I might be more of a distraction than a help.

We’re hearing a lot more words from Thomas although very often we aren’t sure of what the words are. He sometimes even talks in short sentences, where he is obviously saying something specific, but we can’t figure out what those words might be. It has become a lot more obvious that he has motor planning problems in his speech. My layman’s diagnosis is apraxia. A lot of kids with autism have apraxia, but I’m not sure it would be considered a secondary diagnosis. I don’t really know how that works. You can see that he’s working really hard sometimes to figure out how to make his mouth say a word we are working on. He’ll often just be able to say a small part of the word. Or, he’ll be moving his mouth just right, but doesn’t put the sound with it. It takes a lot of concentration sometimes. We also saw in one of the videos of our Play Project session that if he was very still, the word (“down” in that case) would be very clear. The more motion in the rest of the body, the harder it was for him to say the word. Kind of weird. I think we are only up to 10 or so words in current use (because he often loses or stops using words and/or skills as he learns new ones), but I think he is having a bit of a language explosion. I think he understands so much more and I really do think he is saying a lot that we just don’t understand yet. I think as we work more on how the different sounds are made it will help tremendously. In last night’s session, we had three new words. Very weird collection of words: Glasses, Delicious and X-ray. Delicious is a hard word to be starting with, but it was getting pretty clear by the end of the night! The cutest thing ever. We have a set of flashcards with the letters of the alphabet and X-ray was the picture for “X”, and he just started saying it over and over. If you think about it, X-ray really a fun word to say. Just ask Thomas!

Friday, September 19, 2008

Walk Now For Autism

We are doing the autism walk tomorrow through Autism Speaks. I didn't have the time or energy to form my own team and do fundraising, but I am walking with my brother Joe, who is also autistic. Joe is now 28 and he was diagnosed when he was in 5th grade. My dad will be walking and a coworker of my dad may be coming with his son who is also autistic. It's a small world. One thing I wanted to do with my blog is to have information about autism and the various treatments and summaries of the extensive research that I have done in the past 9 months or so. I just don't have much time or energy nowdays. But in honor of the autism walk we are doing tomorrow, here are some autism facts that you may not be aware of:

Autism is a neurobiological brain disorder

1 in 150 children are currently diagnosed with autism spectrum disorder

Autism is 4 times more common in boys, but tends to be more severe in girls

Autism impairs a person’s ability to communicate and relate to others

Autism is associated with rigid routines and repetitive behaviors

Many people think of “Rain Man” when they think of autism. In reality there is a whole
spectrum of autism and symptoms can range from very mild to quite severe.

A high percentage of kids with autism have gastrointestinal issues that may be affected by
diet and/or food allergies and sensitivities.

There is some evidence that autism is related to immune/autoimmune diseases

A tidbit about Minnesota and the autism rates: We have a large population of Somali in Minnesota. The rates of autism in the Minnesota Somali population are much higher than the general population. They tend to be much more severe cases. And these children are ones who were born here, not in Somalia. They do not know why. But in my opinion, this could very well be a good clue to the huge increase in rates of autism. I hope that they can figure it out soon.

Most research today indicates that the level of mercury that used to be in vaccines has not led to the increased rates of autism, though many still believe that vaccines have something to do with it. (My belief is that, in most cases (as there are always exceptions to the rules), vaccines had nothing to do with it. It just happens that the timing of the vaccines coincides with the timing of autism symptoms. Even some kids later diagnosed with autism, that were never immunized, showed a regression at that age. I do not think that the vaccines cause it. However, I would also like to see more research on a large scale, double-blind studies to examine other aspects of the onset and increase in rates of autism and how they might otherwise relate to vaccines. If nothing else, to rule out the possibility that there is a connection. As a microbiologist, I understand how horrible the diseases were that we now immunize for and honestly even if there was a clear connection with vaccines and autism, I would still immunize. But I do think that there needs to be more research.