A few weeks ago I was fortunate enough to have a piece I wrote, a letter to Justin’s future caregiver in a group home, published on the Autism Speaks blog and highlighted in their social media. In it I wrote about my boy’s strengths, weaknesses, and his general adorableness (making that a word). I thanked his future caregivers for their patience and compassion, let them know how much he had been loved during my lifetime. I sent it to my contact at Autism Speaks with the hope that they would choose to publish it, as I think talking about the future for our more severely autistic kids is really important. The truth is though, I almost didn’t send it, and I’ll tell you why. You see, every single time I write about my son’s life after my death, which I believe will transpire in some sort of group home, I get the comments.
And I will tell you readers, some of them are not kindness personified.
I could tell you how this mean commentary about putting my son in a group home (which they never seem to get hasn’t happened yet, he’s only fourteen) ruins my day, or brings me to tears, or sends me downstairs for more chocolate (that last part is always true). But honestly, I’ve been writing this blog for seven years, and I’ve developed a thick skin. I’ve survived a comment about how I could possibly think to “out” my mildly autistic son by bringing him to an autism surfing event. I’ve been told I’m awful for predicting my non-verbal, severely autistic teenaged son will never marry or live independently (please, prove me wrong there, I’d be thrilled).
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I was also asked recently if I’d ever heard of Temple Grandin and I shouldn’t give up hope my son wouldn’t eventually end up like her.
Okay, not mean, just incredibly annoying.
I can honestly tell you at this point I don’t care if perfect strangers choose to judge me about where my son will live after his parents’ deaths, and quite possibly, years before that. Most of the time the “judgers” don’t even have a severely autistic child, or are the parents of a “Waltonesque” family where their child’s seven siblings will share in taking care of their brother or sister after their parents’ demise.
And in that instance, I say more power to you, and you should count yourself fortunate. Many of us don’t have that pretty option. I can tell you I don’t.
My severely autistic son will never live with my youngest son, but not because he’s autistic too. Zach, like his brother, is doing beautifully out in the world, but I can you he’s already told me he wants to visit Justin but not live with him, and I know I need to respect his wishes. I’m sure some of you are thinking he’s young (ten) and will eventually change his mind, but I can tell you he won’t. He’s a bright boy and can tell his big brother is a lot of work, and doesn’t see how caring for him full-time will play into his desire to have five kids. Quite honestly, I don’t see how that would work either. We need to know where he is at any given moment in our house, and he needs frequent supervision. He is still on a potty schedule. He has gotten out of our house alone twice, so we need to constantly know his whereabouts.
Justin is a full-time gig. Logistically, I don’t see how living with Zach and the family he’s wanted since he was five would work.
For many of us parents of severely autistic children, a residence for them outside of our homes will eventually be our only option. While I respect everyone’s right to comment as they see fit on either my blog or the Autism Speaks blog, I’m hoping people will read this and think for a moment before they write something derisive about group homes. Truly, I’m not asking this for me. Rail away at me on my blog, get out your aggressions if you choose.
I’m not going anywhere.
But please, before you write a derogatory comment on the Autism Speaks blog about a parent’s choice of living arrangements for the child they desperately love and perhaps wish they could care for until he or she dies, stop and think. Deciding how your severely affected child will live out their last three or four decades without you is difficult (okay, excruciating) as it is. Someone reading a commentary on group home living may just be coming to that point where they can no longer care for their child. Perhaps they’re a single parent, or ill, or just too old to do it anymore. More than likely it is a heartwrenching decision, made with more than a few sleepless nights. Please, think before you write and don’t make it even more difficult for them.
We parents of autistic children need to spend our time building each other up, not breaking each other down.
Thank you.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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