My Family's Journey With Autism - Part 5

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So at this point, my son had just turned 5, he had the diagnosis of Pervasive Developmental Disorder, leaning towards Asperger's for about a year.  At this point, we were doing heavy speech and occupational therapy, with a focus on sensory integration.  Not only was he getting these services at school, which he was now getting through the school system, we were also using our insurance and getting therapy outside of school.  At this point, we also hired a therapist that played games and worked with him one on one with handwriting.  We found that putting him in a smaller setting and teaching him he thrived. I also hired a student who was studying occupational therapy and had her spend an a couple hours  a week doing sensory activities from the book The Out Of Sync Child Has Fun with him. 

This is also when we started many of the holistic type treatments.  He had a variety of tests run and was put on several types of vitamin and herbal supplements to help aid in digestion and regulate his neurotransmitters. 

Within a few months we saw his conversation skills really start to blossom.  Instead of only conversation prompted by me or when he wanted or needed something, he started having spontaneous conversations with us.  Instead of eating in silence at the dinner table he started joining in the conversation too.    For the first time, he was able to do worksheet type work unattended and stay focused on it.  He started to pretend play, for the first time and desire friends to come over.  He also stayed engaged when we did family activities like board games.  This was really exciting for us.

At this point, many of the therapists we were working with were often surprised by his current diagnosis.  He had a funny and silly personality and was very social and clearly enjoyed being around others.   He was easy to work with and eager to please.  I am not saying kids with Asperger's don't have these personality traits, but the other kids with this diagnosis  that I have been around, are much more set in their ways and ideas, and almost robotic or monotone in their speech and language skills.  His speech therapist we were working with, suggested a diagnosis of Semantic Pragmatic Language Disorder may be a more accurate fit for him and I agreed, however with this diagnosis, our insurance would not pay for therapy anymore.  

Now, this was around the same time we had to decide what we were going to do about school the next year.  He was to start kindergarten in the fall.  So, once a child turns 5, they graduate out of the early intervention program and move into what is called an IEP, an individual education program.  Not just any child can get this, you have to fit in a "label".  No one told me this at the time, so I want to make sure I pass this info along.

Once your child has a "label"  placed on them, they will continue to have it their entire public school education.  So, this means if your child has an autism label at age 5, it will carry with them until they graduate high school.  Also, regardless of the label, if your child starts public school in  special education, though they may not need services every year, they are always considered a special education student. 

I, being the cooperative parent I am, without force, handed my diagnosis from Dr. Autism  to the special education team and unknowingly gave my child the "label" of "Educational Autism," the rest of his public school life.   I will always regret that.  I should have had them prove it to me, by their testing or simply refused to sign the papers until we were certain what our plan was for him.

Around this same time, my husband was offered a new job with his company (where we currently live now) and we decided to move.  (Hopefully this would be the last time!!) So, we moved yet again.  While I knew he was cognitively ready for kindergarten, he was immature for his age and very antsy, he was still tiny too.  I just thought a full day at school was too much for him.

I was also, unsure of what I wanted to say about him to others at this point about his diagnosis.   He was the type of kid, that you probably would not have guessed had an Autism label on him at all, I hated others to judge him, without getting to know him first.  However, I knew I could not just put him in a private school and not tell them anything.  He was still impulsive and I worried he could leave the playground at recess or wonder off, if not carefully watched.   So, after much research we decided to put him in 1/2 day kindergarten at a private school and in the afternoon, he went to a preschool program sponsored by the public school and was able to continue speech and occupational therapy through the school system.

He loved math and could already read, so the 1/2 day program would fulfill those needs and  he was just getting into pretend play with other kids and I wanted him to experience this in a preschool setting, so the afternoon program was a great option.   This bought us a year, to figure out what we were going to do about his grade placement.  If, after the end of the year we wanted to we could put him in 1st grade or he could do a full day of kindergarten in public school.  This next year, would prove to be his most impressive yet!

I'll tell you about it in part 6 (this will be the last one)

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