Austism Awareness Month and the 1 in 88.

Thursday, April 12, 2012

I wasn't sure whether to post this or not...still not sure. emoticon April is autism awareness month. It is something that my family is particularly sensitive to because our oldest grandson is autistic. DH and I did not realize it for a long time. His mother first started noticing "issues" when he was about 18 months old. Incredibly young to be identified as autistic. We didn't see it for quite a while after that. At two, he was talking up a storm (as far as we could see). He had a big vocabulary, knew all his numbers, shapes, colors and the letters of the alphabet. He was using 2 - 4 word sentences. Incredibly, within a matter of months he lost all of it.

Maybe "lost" isn't the right word, but if he still knew it, he was no longer able to connect with what he knew or if he could make the connection, he couldn't articulate it. By the time he was 3, he no longer seemed capable of independent speech and was able only to repeat what he heard. (Echolalia).

He could not stand loud noises, no longer knew how to give a hug, and wasn't particularly comfortable with getting them. He could still say his parents and grandparents names (or at least the names he had given them) but that was about it. If you said, "Say...." he could repeat it faithfully word for word, but could not say it independently. By the time he was two he was already getting speech therapy, occupational therapy, play therapy...if there was a therapy to get, my son was getting it for him. Fortunately my son has been blessed with good insurance and a good job.

He will be 8 this year. He has been in the school system getting special education classes and therapy through school since he was about 4 or 5, and we think it did help, but this year, the school system finally let him down. He entered first grade and simpy could not handle the sensory overload that went with a room full of 26 other first graders. My son finally made the decision to move him to a private school in his town that specializes in children with special disabilities, particularly autism. He believes it has helped tremendously in the last three months.

Recently, we thought maybe there had been a break through. My son took him to a new neurologist who ran a sleep EEG and thought she had identified the brainwave pattern they found in his EEG as LKS. LKS is pretty horrific in its own right, but unlike autism, LKS does actually have an identifiable physical cause and a medical treatment that can be successful. So the plan was to admit him to the hospital for 3 days and blast him with IV steroids. We were told that he would go home talking like every other 7 year old. We were all on cloud nine! DH and I promptly went out and celebrated that night and I managed to gain 5 pounds overnight! emoticon

We had two really great weeks when we were keeping all fingers and toes crossed and hoping for the miracle. During the time he was receiving treatment, we were constantly online or on the phone tracking progress and praying. Unfortunately, the treatment failed completely. E demonstrated no changes at all that corresponded to what the doctors had expected and the final determination was that he did not have LKS afterall. I gained another 5 pounds THAT night! emoticon

That same week, the CDC came out with its new numbers indicating that 1 in 88 children are diagnosed with some version of autism spectrum disorder. Worse, boys are 5 times as likely as girls to have it, with 1 in 54 little boys being affected. With those kind of numbers, it seems likely that most of us probably know of someone who has autism. And of course, just recently there was the finding that there may be an "association" between obesity and autism. An association is not nearly the same as a "link" but still it is troubling.

My son's answer to the disappointment of the failure of E's treatment and the newly released statistics was to create a nonprofit and begin trying to raise money to help kids with autism receive treatment. The new school E is going to seems to be helping and it appears that there are more schools like it springing up, but it is expensive, and not many parents have the same resources my son has. He is hoping to help set up a scholar ship fund for those kids in his city. More importantly, he is hoping to help spread the awareness of what autism is, and what a looming problem it presents for everyone.

I've been more reading than ever on line, looking at other peoples blogs, research sites, news articles, etc. I came to SP, thinking there might be a support team for people who are living with family members who are autistic. I was really surprised, because although there seem to be teams for almost everything else, there is no team for that. Well....I take that back. There appears to be a team that was formed by someone for Georgia, but cannot find any posts or entries by team members. I also checked out blogs to see if someone else had posted anything, that I could make a comment on, especially since this is Autism Awareness month. So far, the only things I have been able to find are the articles posted on SPs health pages.

So I decided to post this.

E is our first born grandson, and we are so very proud of him. He has a fabulous sense of humor and loves to make up his own jokes, most of which manage to be pretty funny. Of course, if you laugh, you can expect to hear them many many times! emoticon He hates the meltdowns, and works hard to manage his own stress levels…if the adults around him cooperate! He is reading well. His behavioral, social, and verbal skills are gradually improving. Recently our son reported that after a session playing the guitar, he asked E, “That was bad wasn’t it.” And E replied, “Yes that was bad, but it WAS a very hard song.”

He has learned how to give hugs again, sort of! emoticon When we go to visit he ALWAYS comes running out with a great big smile on his face and he looks so happy to see us! But then he stops just out of reach, turns and runs back the way he has come. We would desperately love the great big hug at the end of that run, but we know that if we go inside, he will be hidden somewhere, waiting to be found and tickled, and THEN we get our hugs.

I know this blog is long, and if you have made it to this point, thank you for bearing with me. I could not let the month go by without posting something about it. If you find you are interested in learning more about my son's efforts to spread awareness, or if you would like to post your own experiences on his sites, feel free to contact me and let me know. He would be thrilled to have guest contributors!

Thank you for your patience.
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Member Comments About This Blog Post
    What a coincidence. The produce stand that I frequent is run by a woman and her sister-in-law. Today I saw the SIL (she usually doesn't work on Thursdays) and asked about her family. Her youngest daughter is autistic, but is progressing pretty well. The mother was telling me about her daughter's wonderful special education instructor and great progress that has been made. Unfortunately, she will be graduating (our school district has a K-4, 5-8 school set up) at the end of the year and will have to establish a relationship with a new special ed teacher. I'm confident that this young girl will become a productive member of society. It can be so frustrating for the family and for the child, but we are learning more about autism every week and while there may not be a cure in our lifetime, there certainly are therapies that make life livable for the child and family.
    Hugs to you for writing about your experience. Keep providing the love and patience that E needs.
    2166 days ago
    2167 days ago
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