His journey is all the whole family's journey so please --be patient!!
Caleb was first diagnosed as Austic-like when he was 2 1/2 years old. I didn't mention that in the first chapter of this saga. It was confusing to have your child diagnosed as autistic-like. It's like having them diagnosed as being boy -like or blonde-like or blind-like. It was 1992 and Autism did not have the momentum or exposure that it does today. The pediatric neurologist that diagnosed Caleb had had very little experience with Autism and therefore was not sure and was also reluctant to stick a label on Caleb (those were his words). For me, it was not helpful.
First of all, I had no idea what autism was. I had watched "Rain Man" but Dustin Hoffman portrayed a grown man. Caleb was only 2 1/2 and didn't behave like the character that was portrayed in the movie.
There was no internet in those days. I couldn't just run and google the word "autism". Fortunately, the early intervention workers that had come to work with Caleb gave me the address of the Autism Society of America. I wrote them and received information back from them. In that information was not only a definition of autism but a booklet that had been compiled of other parents' stories. Those stories are where I found the most information and the most solace.
As I read and delved into this world called autism, I found out one thing-- Caleb was not autistic-like. Caleb had autism. There was no "like" about it. Though Caleb made good eye contact with me, he did not make eye contact with anyone else. He didn't speak. He focused on objects and found great pleasure in twirling and spinning them. He also did not play with toys in a normal manner. His idea of play was lining up his toys in front of himself and doing a strange dance around them. When spoken to, Caleb never made any indication that he heard or understood. And though he never came when his name was called, he did come when his favorite cartoon came on the tv. He also knew how to operate the VCR and would rewind his favorite cartoon over and over and over again.
Caleb's favorite cartoon was Winnie the Pooh and the Blustery Day. And as time progressed he became obsessed with all things Pooh. He collected Poohs, he looked at books about Pooh, and he watched cartoons about Pooh. Caleb lived in the hundred acre woods. As a side note--Caleb is 23 now and he still lives in the hundred acre woods. This is his room.
For the first six months after Hannah was born, I did not have time to think about Caleb's autism and his need to have a formal diagnosis. I was feeling slightly overwhelmed by having three children under the age of 5, two of who were in diapers. Caleb was not even close to being potty trained and frankly at that point in time I didn't even care. I was barely treading water and felt like I was sinking fast. So Caleb's diagnosis would have to wait.
Finally in May of 1993, my husband and I were able to take Caleb San to Francisco to receive a formal diagnosis. My parents watched the other two children as we loaded up the car and began the long drive.
After much research, I had decided that the Langley Porter Psychiatric Institute in San Francisco would be the best place to take Caleb and have him diagnosed. There were many doctors there who were leading experts in the field of Autism at that time. After a long time spent observing him, the doctors came back with a diagnosis and recommendations for our school district. Caleb was in fact moderately autistic and mildly retarded. That was their diagnosis.
I have to tell you, I never agreed with the mildly retarded part. I still don't. How do you separate the two? Without the autism, would Caleb have still been retarded? Over the years, I can tell you--NO. Caleb would prove his intelligence over and over and over again as the years progressed. At that time , though, I resented the added diagnosis of mental retardation and would never address it.
Chapter 3 in this saga will be continued later.....
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