Painful Journey to a Diagnosis

My journey to the diagnosis was very long.  10 years to be exact.  


It began with a 2 year check up and the doctor telling me his speech was slower than usual.  We were skeptical and dismissed it believing that he would catch up with time. But agreed to some tests just to make sure.  They said he needed speech therapy.  So he began his speech therapy at 2 at a small school twice a week.

When he turned three, in order to keep him in speech therapy, he went to the special education class in the public school.  He was still shy, unable to engage with other kids his age.  He preferred his trains, toys, and books.  He preferred to be with adults rather than other children.  We dismissed it again because he was the only child in our family and he stayed with adults all the time.  My parents took him to the playground so he could  be around other children his age, but he would only follow older children or just prefer to play alone.  We thought he was shy.


When he turned five, he began kindergarten in a regular class.  He was taken out an hour a day for speech.  I was happy he was in a regular class. I still waited.  The IEP meetings were a joke in my case.  They were unable to tell me what they were going to do.  I was clueless too.  They wanted him in Special Ed because he had a learning disability but couldn't really tell my why. 

One day I made a visit to his kindergarten class.  The desks formed small circles, but I found him sitting in a stand alone desk that you would find in the library. She said he wasn't paying attention.  Maybe I overreacted, but I pulled him out the next day. I found out later that he was put into that corner almost everyday. 


After searching for a private school, I placed him in a small private school and found that they didn't know what to do with him either. They said should be tested for either ADD or ADHD, but they couldn't help him. After two weeks, I had to pull him out again and finally found a Montessori school with very small group of kids with individualized attention.  Fortunately, the school was fairly new and next to a school for special needs children including autistic kids.  He sat through variety of tests and found that he had an exceptionally high IQ, but he didn't have ADD or ADHD.  He had similar traits, but that was ruled out.  But his ability was very much appreciated in a small school.   


As he finished 2nd grade in that school, he was reading at a high school level, but his social awareness was no where to be found.  He was happy socializing with adults or by himself.  They just described him as a walking encyclopedia.  I thought he was able to join the regular school.  But I was wrong.  

His intellectual brilliance fell flat when he began elementary school. He couldn't communicate with other children because he did not know or cared about anything a 3rd grader would.  When he finally tried to join in, he just didn't know how.  I found him by himself after school and began getting calls from the teacher regarding teasing.  


I thought he would eventually grow out of it, including my parents. Maybe he was shy or it was his personality. My sister thought otherwise.  To be honest, I knew that there was something wrong, but did not like the stigma that came from having psychiatric testing.  It was my sister that finally convinced to put my prejudice aside and put my son's needs first.


When I got the diagnosis, I was full of mixed emotions. It was sad that he had something.  I knew it wasn't the end of the world, but the fact that he had to face challenges that others did not saddened me.  


Will wasn't weird.  There was nothing wrong with his personality.  He wasn't shy.  He was different.  There was finally a name to what he had.  

He began therapy at 3rd grade.  I read as much as I could.  But our journey was just beginning because it was going to be a learning experience for him and for the rest of the family.