Life With An Autistic Child

Most of us have heard the expression walk in my shoes to see what it’s like (fill in the blank).  Have you ever been so frustrated you want to curl up in a ball and cry? Do you know someone who has a special needs child or a child with developmental delays?

Life with a child who has needs beyond the average person can take a toll on parent(s). Unfortunately some parents do not have a support system in place or they may have one that is mediocre.

So trying to take some time to themselves to refresh or re cooperate can be the greatest challenge, especially when it comes to child care. Actually, it is one of my greatest frustrations, disappointments, discouragements and it has been for at least the last 10 years.

People enjoy watching my now teenage daughter. Most of the time I hear about how wonderful and sweet she is when someone has been watching her. But when it comes to my oldest son Caleb, things are dramatically different. Most people don’t want to watch him. In fact, I’ve had people admit that they cannot “handle” him.

It is a struggle to find decent, reliable child care especially when people believe they cannot handle or deal with a child who is mildly different from the average child. Most days he is just a more curious, inquisitive child that will ask questions quite often.

This also leads to the problem of employment for me. If I do not have reliable child care then what good does it do for me to go out and seek employment?

I cannot imagine what other single parent families go through with a special needs child. I would hope they would have a great support system which is a challenge for many including myself. There is a true need for people to reach out to families who at times are overwhelmed, stressed and would like to have even a day to recuperate. It is a challenge to find respite care for caregivers who primarily focus on the needs of the special needs child and tend to forget about themselves.

Most of us have seen stories in the news where someone snaps and does something unimaginable. People cannot imagine what it is like for someone who is overwhelmed day in and day out with no outlet. Life with an autistic child is not an easy one. Every day there are challenges some more stressful than others. Despite the fact that many of these challenges are life lessons it often feels like the world is against them.


My PDD-NOS Child

It hasn’t been too long ago that my oldest son Caleb was finally diagnosed with something that made sense. A year and a half ago we were given the diagnosis of PDD-NOS, high functioning Autism. PDD-NOS stands for Pervasive Development Disorder Not Otherwise Specified.

Basically, Caleb is borderline Autistic. If one were to hang out a few days to a week with him you might otherwise disagree. He is the sweetest, loving, caring boy at times. Other times no one wants to be around him or deal with him. You “ruin” his day and he’ll ruin yours.

I am learning to build a routine with Caleb because if I don’t then some days are like hell for me. If he asks me to wake him up with one of his stuffed puppy dogs then I need to do that. I have to make sure he has his backpack, shoes and glasses or at least remind him a few times to get them as he walks out the door. On the days he needs to carry his blanket I have to help him.

If someone else has to pick him up I have to make sure he knows or he gets upset.

For at least the last two years I have had to deal with Caleb’s incessant spitting. When I say incessant I mean it is everywhere. The carpet by the couch turned black and got stiff, spitting outside our apartment door, on the steps, sidewalk and even in my Jeep. Spit on the bathroom floor, kitchen, at my best friends house.

We have done everything suggested to us by his therapist from putting  a rug by the couch, putting plastic down to giving him his own trash can to spit in. I recently spent four hours cleaning the floor board of my Jeep and painting it because where he sits was so bad it was rusting (I removed the carpet two years ago, partly because of this).

He has even gotten in trouble at school for spitting. Caleb says it is because germs get into his mouth. It’s annoying and gross and at times I feel helpless about it. Other days he rarely spits so I haven’t pinned down why some days are worse than others although he is very sensitive to smells . That can cause him to spit more especially if he doesn’t like the way someone smells or how food smells.

One thing I am working on is understanding his sensory issues and hopefully with that we can decrease the whole spitting issue.

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.