A Journey Through Autism – Part V

Our journey continued as my son got ready to make the transition to the school system at age three from Early Intervention. I must say after hearing a number of horror stories, I was extremely nervous about having the IEP meeting for the first time. The school’s special education coordinator requested that my son’s speech pathologist be present at the meeting. What a surprise to have the school ask her what exactly she felt my son needed and then everything was implemented. It was a very smooth transition.

The next hurdle was that my son was still using sign language as his way of communicating and the school speech pathology was “rusty” in her usage of it. The school’s speech pathologist was very good about coming to the house near the end of my son’s Early Intervention time and sitting in on the sessions to “learn about him”.

The hardest part of the transition was moving on away from “Jude”, the Early Intervention speech pathologist. She had become my son’s life line. She had brought him out of his shell. He was out of the closet where had sat rocking. He was communicating, and we even had eye contact more times than not. My son was devastated to know that Jude wouldn’t be coming any more.

Starting with the school was a tough schedule for my son. Not only did they put him in a small preschool three days away, but he also has speech therapy twice a week and occupational therapy twice a week, overlapping so he was out of the house four days a week. It was a very regimented schedule. In the time frame, the family was in turmoil, which my son spent a lot of time shut down due the family dynamics. His father and I were going through a divorce, the house was for sale and we were getting ready to move in with my parents.

The summer before kindergarten started we finally settled in to a new house and settled into a routine that my son responded to. In June at kindergarten orientation, the occupational therapist had to take my son out of the room in order to do sensory therapy so he could function. He missed the whole orientation. By the time, school started in September, he was settled and functioning very well.

At the end of his kindergarten year, my son was placed on a “consult only” list for speech pathology. Occupational therapy was still seeing him at school once a week for sensory therapy. He was flourishing in school and loved it.

We were meeting yearly at that point to introduce his new teacher to his IEP. However, at the end of first grade I was told he no longer qualified for an IEP due to the fact that he was not academically delayed. After testing in the prior spring, he had tested with math at a fourth grade level as the highest level in academics and never tested less than at least six months older than he was. That meeting was the hardest one for me to sit in. The tears flowed as fear gripped me. What would happen to him? They decided to put him on a 504 plan, which still kept him with a list of cues for his teachers as to his diagnosis.

Years flew by it seemed as my son grew more and more skilled in coping with his autism. He would come to me and ask for sensory therapy, but as time went by it was fewer and fewer between times that he needed it. Usually more around holidays or vacations.

The hardest meeting I had to sit in was the year my son was in sixth grade. The tears flowed uncontrollably as I was told he no longer qualified for the 504 plan. He had progressed to the point that he handled things very well in stride. There are times he still shuts down a bit at home, but he can hold it together at school. This was what we had dreamed and strived for. The hard work paid off, but what a let down. After all the years of being an advocate for my son – and seeing my son work so hard to learn sign language and then speaking – the feeling of relief was overwhelming.

This child at age two couldn’t stand to be in a gymnasium without headphones, a vibrating teether and a weighed vest. At age 12, he know wants to be a NBA player and loves basketball to the point that he will shoot hoops all winter outside. It’s amazing to me that this child, who used to sit in a closet and rock, not make eye contact at all and have violent tendencies when he was frustrated, is now an honor student, an amazing athlete and is the most loving child I have ever seen. Every day when he hugs me and tells me he loves me, my heart swells. For a child that never would hug, every hug is meaningful and never taken for granted.

If I have learned anything from this journey it is you can’t take anything for granted. Every small step is a major victory.

Autism is an unknown disorder. Every child is different, which makes diagnosing the children harder.  One child may have more difficulty in speech while another speaks, but has more trouble with sensory and social issues. The children on this spectrum range with IQs from 10 to genius level.

It’s a spectrum that people need more education on. But in all that you hear in movies and talk shows where they show the worse case scenario – there are huge success stories out there like my son who had Early Intervention early in his left (13 months) and now you would never know unless you knew him when he was younger. Yes, he still has moments where he is overwhelmed and overloaded and needs help to come back to our world, but they are becoming fewer and farther between.

What a journey it is has been – one that is not finished, but I am fortunate to have been part of this journey.

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