A few weeks ago I read an article about Autism Recovery Bullying in The Age of Autism. It stirred up a lot of emotion for me and I wrote a post on it on my Facebook page.
What I wrote was that to be honest I feel guilty. I feel guilty that Tim has recovered. Firstly, what do I mean by recovered? Well he can do everything that his peers can do. He’s at a mainstream school unaided. He’s doing things that a few years ago I wouldn’t have dreamed he could. He’s not “cured” and I do not use that word with Autism because I don’t think there is a cure. I think we can recover lost skills, I think we can recover health and functioning. And when you get to the point that your child is functioning happily and healthily and age-appropriately, are you allowed to call that recovery?
I don’t know, but I do anyway. He is, and will always be, quirky – and I don’t want to change one little bit about his quirkiness and his brilliant mind that continues to surprise and delight me every day. So recovered to me doesn’t mean he’s not quirky, but it means he has the chance to be the best he can be, to reach his potential whatever that is.
So back to the guilt.
I feel guilty because Tim recovered and a lot of kids won’t. I feel guilty talking about what Tim is achieving because for some people, their kids will never get there.
And then someone asked me the question – Was I just lucky or did we work damn hard for that recovery? And there’s no hesitation when I reply that we worked damn hard. For 9 years. I dedicated every waking moment to recovering Tim – to the detriment of my marriage and my health. Was I lucky or did he recover because we threw every single thing we could at him – special diets, supplements, occupational therapy, speech therapy, ABA, chiropractor, psychologists, vision therapy, kinesiology, cranial osteopathy and probably more that I can’t even remember. 24/7. I followed every instruction from every specialist, I turned myself inside out to make sure not a crumb of gluten or thimble full of milk passed that kids’ lips. I stayed home with him when his behaviour prevented us from doing things my friends were doing. I stopped work so I could be his full time therapist. For years my relaxation was sitting on the internet until the early hours researching and studying, trying to find what else I could do for him.
Was I lucky we could afford it? Maybe. We had a house that meant we could take extra mortgages to pay for treatment. But my husband was never here because he was busting his gut working all hours known to man to earn enough to manage it all. Tim’s recovery cost my family a lot and not just in dollar terms.
So if we worked so hard for it, why do I still feel guilty?
Because it’s not fair that there are so many of you working just as hard who deserve it too. And I feel bad that my hard work paid off and some people’s won’t.
And so every day, a little part of me just wants to sweep all our work under the carpet so as to not be “in your face” to those struggling to get where we are.
And I wish I could fix it for you, I really do. All our kids deserve the right to recovery so it pains me that not all get there despite the heroic efforts of their parents.
I’m trying to take the advice of some wonderful supporters who encourage me to own my work and keep sharing our story and ignore the judgments that come in thick and fast from all of those who think I’m just lucky. And I am trying really hard to do that. I’m trying to turn guilt into gratitude and you have no idea how much gratitude there is in my heart. I’m eternally grateful for the amazing therapists and teachers Tim has had on his team, the wonderful friends I’ve met through Autism, the ability to have been able to be by his side on his journey, the chance to help other families by sharing what I’ve experienced. I like the sound of gratitude much better than guilt. And my head knows that I’m entitled to that, it’s just my heart has a little catching up to do.