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A few weeks ago I was fortunate enough to have a piece I wrote, a letter to Justin\u2019s 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\u2019s 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\u2019t send it, and I\u2019ll tell you why. You see, every single time I write about my son\u2019s life after my death, which I believe will transpire in some sort of group home, I get the comments.<\/p>\n
And I will tell you readers, some of them are not kindness personified.<\/p>\n
I could tell you how this mean commentary about putting my son in a group home (which they never seem to get hasn\u2019t happened yet, he\u2019s 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\u2019ve been writing this blog for seven years, and I\u2019ve developed a thick skin. I\u2019ve survived a comment about how I could possibly think to \u201cout\u201d my mildly autistic son by bringing him to an autism surfing event. I\u2019ve been told I\u2019m awful for predicting my non-verbal, severely autistic teenaged son will never marry or live independently (please, prove me wrong there, I\u2019d be thrilled).<\/p>\n
I was also asked recently if I\u2019d ever heard of Temple Grandin and I shouldn\u2019t give up hope my son wouldn\u2019t eventually end up like her.<\/p>\n
Okay, not mean, just incredibly annoying.<\/p>\n
I can honestly tell you at this point I don\u2019t care if perfect strangers choose to judge me about where my son will live after his parents\u2019 deaths, and quite possibly, years before that. Most of the time the \u201cjudgers\u201d don\u2019t even have a severely autistic child, or are the parents of a \u201cWaltonesque\u201d family where their child\u2019s seven siblings will share in taking care of their brother or sister after their parents\u2019 demise.<\/p>\n
And in that instance, I say more power to you, and you should count yourself fortunate. Many of us don\u2019t have that pretty option. I can tell you I don\u2019t.<\/p>\n
My severely autistic son will never live with my youngest son, but not because he\u2019s autistic too. Zach, like his brother, is doing beautifully out in the world, but I can you he\u2019s already told me he wants to visit Justin but not live with him, and I know I need to respect his wishes. I\u2019m sure some of you are thinking he\u2019s young (ten) and will eventually change his mind, but I can tell you he won\u2019t. He\u2019s a bright boy and can tell his big brother is a lot of work, and doesn\u2019t see how caring for him full-time will play into his desire to have five kids. Quite honestly, I don\u2019t 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.<\/p>\n
Justin is a full-time gig. Logistically, I don\u2019t see how living with Zach and the family he\u2019s wanted since he was five would work.<\/p>\n
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\u2019s right to comment as they see fit on either my blog or the Autism Speaks blog, I\u2019m hoping people will read this and think for a moment before they write something derisive about group homes. Truly, I\u2019m not asking this for me. Rail away at me on my blog, get out your aggressions if you choose.<\/p>\n
I\u2019m not going anywhere.<\/p>\n
But please, before you write a derogatory comment on the Autism Speaks blog about a parent\u2019s 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\u2019re 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\u2019t make it even more difficult for them.<\/p>\n
We parents of autistic children need to spend our time building each other up, not breaking each other down.<\/p>\n
Thank you.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n