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Autism – A complex neurological disorder that affects 1 in 150 children
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More children will be diagnosed with Autism this year than AIDS, Diabetes, and Cancer combined.
Click here : www.whatkindofworlddoyouwant.com/videos/view/id/408214
The band, Five for Fighting, is generously donating $0.49 to Autism Speaks each time this video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link above to watch the video and pass it along.
As I look at this video I can’t help but think of what Chase could have been like. At his 15 month check up as a baby, I still remember being by myself and the doctor asking me what words he was saying. I said, “Well, he used to say Dadda and Thank You very clearly, but he doesn’t anymore.” To this day, I still remember the look on the doctors face. It wasn’t the “oh, that’s normal” look. It was the “hmm… not so normal” look. He continued to ask other questions like, “does he point to things” - “no”, “does he interact with his brother and sister” - “no”. The next few minutes really ran together and I really didn’t believe what he was suggesting. Right away he said that we need to have Chase evaluated with Early Intervention services of Chester County. Then, the words that ring in my head even today, “When we hear of a child loosing words and not really communicating in other ways, we consider the possibility of Autism.” My thoughts, “no, not Chase, this really can’t be”. So I went into the mode of we’ll do whatever he needs to get through this. What a long road we ended up having that I never dreamed of at that time. I came home and told Steve what the doctor said. He immediately got really upset and then I guess that’s when it really sunk in for me. We both cried. Thinking of how much more challenging the world will be for Chase if he really is Autistic.
He was evaluted be a team of psycologists, teachers, occupational therapist, speech therapist, behavior therapist and physical therapist. I remember them sitting in our living and trying to see what Chase could do. They then told us how delayed he really was. 11 month old level for this, 9 month old level for that, etc, etc. Then they all looked at each other and said that they suggest he get’s evaluated by the CATCH team (Childhood Autism Team Check). A team made up of more professionals and doctors from CHOP (Children’s Hospital of Philadelphia) that test children for Autism. Of course, if we wanted to. Right away we said of course! We wanted Chase to get all the help possible now, so that hopefully as he got older he’d be “better” than today. At that time, there was a waiting list of a year to get an evaluation by CHOP. But by going through the CATCH team, it wouldn’t take nearly as long. I can’t imagine how more Chase would have drifted into Autism had he not gotten his diagnosis right away.
All of his services started within a month and he slowly started making improvements. He started out just sitting and playing by himself 100% of the time. He wouldn’t join in to play with Julian or Casey when they were playing “games” together. He wouldn’t come to us and ask for anything. He loved to stare out the window and watch the cars for 20-25 minute intervals at a time, which is VERY abnormal for a 15-16 month old. I still remember the first “big” improvement he made. He had found a plasitc Easter egg in the toy box and had been trying very hard to open the egg. He had a delay with fine motor skills, so this was especially hard for him. He came over to me and handed me the egg and just gazed into my eyes. He still didn’t have words, but I FINALLY knew what he wanted! He was “asking” me to help him open the egg. (I feel the tears in my eyes now) At that moment, something inside me knew that he wasn’t going to fade into the depths of Autism.
He continued to progress. He’d start to look at Julian and Casey and be interested in what they were doing. He’d “ask” more and more for things. At 18 months, we knew that the boys needed to get into a pre-school program. Especially for Chase, who needed a structured environment where he played with various different activities and was kept focused and alert. Steve decided to take a position at Silver Sound as the general manager. God sure knew why we needed that job. The boys started daycare and it was a rocky road for a while. Chase would bite other kids 6-7 times every week. Most times for no reason. He was also a lot bigger and he’d walk right on top of kids, push them over, etc. There were many days that I’d walk into daycare waiting for them to tell me that they can’t handle him there anymore. Thank goodness we had teachers that understood and were compassionate.
By the time he reached 2 years old, he had come SO far! He talked more and more every day and interacted with kids much better too. The more he could talk, the more his “behaviors” diminished. At 2 years old, the county had a TOT program for 2 year olds with an Autism diagnosis. The class had a ST, PT, OT and specialized teacher. This class helped him SO much right away! By 2 1/2, I could tell the teacher wasn’t really thinking that he needed the class anymore. They only allowed 4 children in the class at a time. So, there were obviously other children waiting to get in. About 3-4 months before he turned 3, they graduated him from the class. There really wasn’t anything more that they could challenge him with in the class. Which was a good thing!
In June of 2007, his doctor at CHOP decided that he no longer fit under the PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), which is on the Autism spectrum. Was he considered not Autistic at all? Well, that’s really left to be determined. When he turned 3, his services went from Early Intervention to the Intermediate Unit of Chester County. They of course, did all their tests and the educational psycologist came to our house and spoke to me of their findings. They found him to be on the border of Autism. They asked me what I thought. I decided to keep him on the spectrum educationally, as I still had some concerns. They thought it was a good idea. He’s also evaluated by a psycologist through his behavior agency, T.W. Ponessa. We recently had an evaluation done and he still has him as “high functioning Autistic”, but mentioned that he may soon move to a diagnosis of something like Asperger’s Disorder. He attends a specialized pre-school at the IU in the mornings and receives all his therapies there. He can stay there until Kindergarten. He sees his CHOP doctor every 6 months and is evaluated by his psycologist every 3 months. His behavior therapist sees him once a month and his case manager every 2-3 months. I feel that we are doing all that is possibly out there for him - and it shows in his continued improvements! And what really helps, is the fact that he was diagnosed as Autistic at an early age and he qualified for Medical Assistance, just with his diagnosis alone. So, everything is covered and we don’t even pay copays! So some ask, do you really think all of this was necessary? What if one day they decide he’s 100% not on the spectrum, were some of the things they put you through over-kill? Absolutely not!! The #1 thing to do when a doctor even suggests the possbility of Autism, is to start getting services as soon as you possibly can. The earlier a child get’s help, the sooner you can start pulling them out of the claws of Autism. We wouldn’t change a thing!
So today… Chase would appear to most as a “normal” three year old, ADORABLE little boy, with maybe a little clumsiness and somewhat hyperactive. But as you look closer, you may notice that he doesn’t spend much time looking you in the eye. You may see him walk on his tip toes and jump in place a lot. You also may see him open and close his hands quickly (this provides sensory input). BUT, you’ll also hear sentences and laughter. And he’ll ask you to read him a book, count in Spanish, repeat some Spanish words, say his ABCs, point out all 26 letters, count to 20, give really big hugs, seek out his simblings to play, invent some games to play with others, talk about all his friends that he played with that day and tell you “I love you!”
I can’t imagine a world where my little boy didn’t speak or didn’t give me hugs. I thank God that he helped Chase so much during these past 2 years.
