This morning I saw the above tweet. Unfortunately the link is broken and I hope to be able to find the article soon enough. Still, it reminded me of something I wrote awhile ago titled Autism and Attitude which I’d like to believe brought home the point that we, as parents, need to set the tone and have the right attitude when it comes to raising a child with ASD (autism spectrum disorder).
Honestly? I don’t see any other alternative.
As I sit and think about it, in the three years since my son was diagnosed I can’t recall a single time when I asked “why me?”. Never did I consider myself the victim. If anything, I often questioned if I was somehow to blame, if even partially. Was there something in my genetic background that could’ve caused Matt’s autism? Could the countless hours at the bar doing who knows how much damage to my body be the reason? Could my own lifestyle be the cause? If that was somehow the case, I can’t imagine how I’d live with myself.
But me? The “victim”? How selfish is that?
If you know anything about autism: the behavioral difficulties, the socialization issues, the experienced frustrations, the hours of therapy, the idea of seeing someone you love more than anything being trapped inside their own mind – the real “victim” (and right now I’m not a fan of that word) is the child; the person with ASD. It’s really that simple.
The question I think ANY parent should ask is not “Why me?” but rather “Why them?”.
I look at Matthew every day and wonder what he’s thinking or how he’ll be in school. I’ve spent countless hours trying to imagine his life in one year, in 10 years, and beyond. He obviously didn’t ask for autism; no one does. Yet if anyone has a right to ask “why me?”, it’s him. And I have little doubt that someday he will be asking just that and I’m not so sure I have an answer.And listen. I’m not saying it’s wrong to question the situation. Questions, after all, are asked with the hope of finding answers – and God/Allah/Buddha/Elvis knows there are a lot of answers needed when it comes to autism – but as a parent, asking “Why me?” really shouldn’t be one of them.
I’ll never deny that autism sucks, that raising a child with ASD can be difficult, but I don’t consider myself a ‘victim’ nor can I ever imagine a time when I will. In many ways, the opposite is true. What my son has taught me about perseverance and fighting adversity has been a blessing. I’m proud of the little guy and I’ll forever be thankful that because of him, my own life is just so much better.
I hear you – the parents of ASD kids I know are some of the toughest, yet kindest, most thoughtful people I know. You and Monica are perfect examples of that.
However – I also believe for parents of children with severe ASD, they’re going to go through all the stages of grief. It’s a complete shift in the future they imagined for their child. (Maybe future is the wrong word: their development. What they imagined their kid’s childhood would look like. Hopefully you understand my meaning.) One of those stages is often the “why me” stage. I don’t think there is anything “wrong” with it, unless those parents get stuck there. I’ve never seen that happen though. Most parents of kids with ASD become their child’s greatest champions. Insistent on providing them with all the tools and skills they need to be the best they can. Just as any other (good) parent would.
What breaks my heart are the parents who refuse to acknowledge their kids have an issue and get them the help they need. THAT is the greatest tragedy.
I’ve thought about that – knowing other kids/parents have it much worse than we do (did you see that ‘hate letter’ in Canada???). Perhaps if I were in a much worse situation, my thoughts would be different…