"So, what's it like being a parent to a child with Asperger syndrome? How do you cope?"
If you're wanting to read an article that tells you how difficult it is, or how I wish my child was "normal", then this isn't the article for you. Move along.
I'll begin at the beginning. I always knew my son was different. I had no experience to base this on, but I knew all the same. As a baby there was no burbling, gurgling or any of that cute stuff that babies are supposed to do. He bucked like a raging bronco when held. He had no real interest in toys as play things other than lining them up. He would run between two points until he had satisfied the impulse to run. Nothing and nobody could stop him. We simply weren't in the same world at that precise moment.
He would fasten and unfasten velcro straps and get angry with himself for not being able to stop. He asked the same question over and over and and just to be sure he'd ask again. He knew the answer. He simply found comfort in the repetition and predictability of it all.
He was a happy, smiling and energetic boy. Good as gold. Hated getting upset. Didn't like the feeling of tears in his eyes. Screamed for tissues until they were all wiped away. He didn't play with other children. He played alongside them, or tried to, but mainly he stood back and watched. He struggled to play "pretend" games. Didn't get the point. Got annoyed when people pretended that objects were something else.
Life was black or white. There was no room for grey. He liked puzzles. Jigsaws. Chess. Music. He would play CDs. Stack them. Unstack them. Stack them some more. Memorise the artwork. Learn the track listings. He had an amazing memory. Photographic some would say. He would talk at length about his special interests to anybody who would listen. It was all he would talk about.
At 3 years old he was given a label of “autism” and a year later this changed to “Asperger syndrome”. Changes to diagnosis manuals mean that today he would be given a label of “Autism Spectrum Disorder” although Ifind that “Asperger syndrome” remains the most useful for people to relate to.
So what’s in a name? Why does it matter?
The label “Asperger syndrome” helped me to access support at school. It allowed me to explain his needs to those who needed to know.
I was relieved to have it and I'm not ashamed to admit that I wept when first given the news over the phone. I wasn't weeping for my son, but selfishly for myself. For the child I would never have, or, rather the *idea* of a child I would never have. It was the finality. No more wondering.
I quickly took a hold of myself. I've never been one to wallow. I'm glass half full all the way. So what if I didn't have the child that conformed to all the parent manuals? What I did have was a happy, healthy child who needed love and support. My child. The child I fell infinitely in love with when his eyes met mine for the first time. That hadn't changed. He hadn't changed. A label would not make a difference to the person he was, or to the mum I am.
I have never used the label as a name tag to define my son, nor am I a glory hunter who decided that Aspergers was the latest fashion accessory to have dah-ling. I'm neither ashamed of it nor do I "accept" it.
My son is a unique human being, just like you. His Aspergers is no different than the other things that make him who he is. To suggest that I accept his diagnosis implies that I merely tolerate that part of him, when in fact I embrace it because it's the very essence of *him*.
To deny my son's Aspergers is to deny who he is, but to place it on a pedestal above everything else, and focus only on this, would be a massive disservice to him and I want no part of that.
I place no limitations on what my son will be able to achieve, regardless of what the care instructions on the label say. Everyone is unique. Yes there will be difficulties, and I will neither create nor allow barriers to get in the way. We adapt. We learn. We show others that people are more than just a label.
I don't want my son to become a self fulfilling prophecy. I don't want him to act a certain way because the label demands it. I don't want the focus of others to be solely on what he can't do whilst ignoring his strengths. It's a balance and so far I feel I've got it right. My son is thriving at school. I couldn't be prouder.
So, back to the question at the start. I'm no different to any other mum. I'm simply a mum whose child happens to have Aspergers. He also happens to have brown hair but I don't introduce myself as a mum to a child with brown hair, nor do I think I'm different to the mum of the child who has blonde hair. The mum I am is simply the only version I know how to be.
I love my son unconditionally. I love his whole character, everything that makes him who he is, including but not limited to his Aspergers. So, you see, we really are no different. Except maybe, just maybe, I have more of a love/hate relationship with Velcro than you do?!