Jul 26, 2014
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My Special Needs Son is Just a Regular Guy

Columnist Lynn Nankervis discusses allowing her autistic teenage son independence and choices.

My Special Needs Son is Just a Regular Guy

As a parent I have a constant stream of worries and concerns playing over and over in my head, kind of like the news ticker you find scrolling across the bottom of the television news channel.

"Will allowing my children to eat sugary cereal for dinner on nights I'm too tired to cook permanently damage their intestines, not to mention their idealized notion of the all-American family sitting down together nightly to feast on meat loaf and mashed potatoes or some other stereotypical home cooked meal?"

“Did my decision to not allow my daughter to wear the shirt to school with straps just 1/4 of an inch over the "three finger rule" ensure that in the future she will just sneak the forbidden clothing into her backpack and change in the bathroom the minute she gets to school?"

“Am I allowing too much independence?”

"Not enough?"

Ironically, as much as I question my parenting skills with my non-special needs kids, as a mom of a teenager with the challenges of autism, I was confident I had a pretty good handle on things. Matthew is my “easy” child, my non-complaining, rule-following, do-the-right-thing kid.

Looking back, as a baby Matthew was completely content. He would watch the ceiling fan spin for hours on end, rarely fussed, didn’t particularly like to be held and just took the world in with his deep, intensive eyes. Everyone agreed he was the “best baby.”

As he grew older, I began to sense that something was ... off.

The way he color coded his building blocks, the odd obsession with Scooby Doo, the arm flapping and tiptoeing and the pointing and gesturing but very little speaking. Language, in fact, was not developing normally at all and became a great concern for me. Our pediatrician told us not to worry, that "every child develops on their own schedule."

I couldn’t put my finger on it but I knew something was wrong, and so I continued the pursuit for an explanation.

Finally Matthew was diagnosed with autism when he was 6 years old. In those first panicked moments after his diagnosis my brain was torn between denial and relief. I was so relieved to have an answer, but autism? I didn't know much about it, and what I did know worried me tremendously. I also wondered if the diagnosis was somehow my fault, and even if it wasn’t my fault, perhaps the fact I took for granted that he was a “good baby” delayed his diagnosis and treatment.

Now 15 years old, Matthew and I have traveled the road of autism long enough that we have forged a well-worn path. Those worries in the beginning were resolved or worked themselves out. Today there are new worries, but we face them together with a positive attitude and know that we can get through anything.

Matthew has matured into an amazing young man, although in some ways his struggles have become more visible to people outside our family. Like most people with autism, Matthew struggles with critical thinking and understanding and processing verbal instructions. He doesn’t pick up on social cues causing him to miss or disregard things that are critical in middle school, like facial expressions, body language and sarcasm. He can’t subscribe to the mutual effort of conversation, preferring to “monologue” at length and in great detail on the subjects that interest him.

Autism has its blessings too, though. Matthew is nearly incapable of being dishonest. He is a rule follower who doesn’t feel the desire to hang out with the “popular” kids, and as a result, while many kids his age are experimenting with drugs and alcohol, Matthew is happiest when he’s at home playing video games.

He doesn't quite get how friendship works — the give and take of a relationship — but I have never known Matthew to be intentionally cruel to another person. He has strong feelings about fairness, humanity, social inequality and right and wrong.

Still, in each of us there is an innate desire to belong, to be accepted, to be “regular.”

According to my older children, as they informed me this past weekend, I am holding Matthew back because I "baby" him too much. They told me I need to allow Matthew to be a regular teenager, and that a good way to begin would be to allow Matthew to choose his own clothes.

I suppose it is a normal desire to serve as my son’s sword and shield. To protect him from both physical and emotional pain. Perhaps that is the best explanation for why I have continued to make some of the decisions that Matthew, as a teenager, should be making for himself.

Years ago when Matthew was first diagnosed we discovered that some of his anxiety could be attributed to certain types of clothes being very uncomfortable. He abhorred anything tight on his arms or around his neck. He only wanted to wear long pants because he didn’t like the way the hem of shorts felt on his bare legs and he preferred large, oversized T-shirts.

While I wasn't delighted that I could no longer dress Matthew in adorable "little boy" outfits, a pediatrician advised me to choose my battles wisely during that particular stage wrought with frequent autism melt-downs, and so I began to purchase the clothing that Matthew found most comfortable.

Over the years Matthew has mellowed significantly and while he still prefers larger, loose fitting clothes, he no longer has a melt-down if he needs to wear a less preferable outfit for a certain occasion, however, it has never occurred to me to allow him to choose his own clothing — to allow him the choice to look more like a "regular" guy.

This past weekend older brother Sam gave Matthew a “makeover.” They spent all day Saturday together going to the Tampa Aquarium, a movie, and hanging out at McDonald's. Sam let Matthew borrow some of his clothes, and when Matthew walked downstairs looking like he was stepping out of an American Eagle catalog, I almost didn’t recognize him.

It was clear that he knew he looked nice, and he beamed! And that’s when I realized that really, that’s all he wants — just to be a regular teenager, to do regular teenage things and to have a mom who appreciates the little boy becoming a young man. A regular young man!

Sometimes it’s our kids that teach us one of life's powerful lessons.

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