The Autism Road

Being the parent of an Autistic child has been a challenge. But being a single parent of an Autistic child can at times be doubly hard. The journey with my son along the Autism road had been a rough one early on. Most of his teachers and the specialists that worked with him from Headstart Pre-K through the second grade were mostly adamant he was ADHD.

I wasn’t buying that and I was at times treated as if I were being defiant or in denial about the situation.

Actually, what triggered the doubt was that my son had not been officially tested, but also that a behavior specialist that observed him for a week in his first grade classroom flat out told me she didn’t believe he had ADHD. She noted that Caleb was showing signs of sensory problems. And as I did research online that made sense.

However, when I made the move 100 miles away from home with my son we were once again faced with the issue of the school staff insisting my son has ADHD because he was hyper at times and couldn’t focus. So I took him to a pediatrician who in turn gave me four pieces of paper with hundreds of questions with boxes to choose answers that fit my son. After spending 30 minutes going over it the doctor quickly reviewed it and diagnosed him with ADHD. He was promptly put on Vyvanse which I was told would take about two weeks to start working.

Terrible, terrible move on my part!

In the beginning the medicine did show some promise. My son’s behavior had shown some improvement and his grades were better. That was short lived though.

Within two months of starting Vyvanse it felt as if all hell had broken loose. The behavior was starting to go backwards, he would NOT sleep and he refused to take a bath. I had been told as far as the sleeping issue goes that the first two weeks on the medication would be sleepless, but this was two months after starting it. Also, the bath issue was extremely unusual for my son. He had always asked to take multiple baths during a lot of days just because he liked playing in them. I literally had to lift him up into the tub and wash him myself because he would be kicking and screaming as if he were terrified.

After graduating from college and moving back home I took my son to his regular pediatrician. When I told her what had been going on she immediately told me that Vyvanse doesn’t work. We were then referred to a center that specialized in testing children for behavioral and developmental issues.

Two months later he started testing which would go on for three months before a diagnosis would be given.

In March of 2011 we received the diagnosis of high functioning Autism, PDD-NOS; Pervasive Development Disorder Not Otherwise Specified. It felt as if a million bricks had been lifted off my back! I wasn’t happy that my son has a developmental disorder, but I was relieved that there was finally a definitive answer to all that had been going on and now we could focus on the future.

Since that time my son has been receiving occupational therapy, was fitted for glasses and sees two specialists who focus on helping him learn social skills, one at his school and one through the therapy center he goes to bi-monthly.

Even though I have seen some improvement in his behavior, he still has his days. We still go through so much since everyday is never predictable. One day he may be the best behaved child while another day I want to just crawl into my bed and hide under the covers.

The biggest and greatest challenge for now is advocating and teaching friends and family about Autism as well as how my son functions. Some people still want to treat him as if he were a normal child when in fact he is a special child. They don’t understand that what you typically do to a normal child doesn’t exactly work with him. Once I explain the situation with some examples it is as if a light bulb goes off. It is hard for others who are not around him frequently and usually he ends up getting on their last nerve. One thing I was taught right away after his diagnosis is that you cannot change him. I have to learn to work with him instead. That has been a challenge!

One very important thing that has to be remembered is that he does very well when there is consistency. If he knows we are going somewhere after school or I am going to cook one of his favorite meals there is a much higher rate of cooperation from him. If he asks me to do something such as wake him up with a specific puppy dog he tends to respond better. Learning what makes him tick is the key to making things better for the both of us. I make not like it all the time, if I want my sanity to stay though I have to relinquish the feeling of complete control and work with him the best I can.