You say “potato,” I say “potahto,” but let’s NOT call the whole thing off.

November 6, 2018 at 3:22 pm Leave a comment

I’ve sat on the sidelines for many years while the discussion about grieving the life you thought your autistic child would have has gone on around me. I’ve read thoughts from adults with autism who are angry at parents for feeling this way, and I’ve read thoughts from parents who resent being told by adults with autism how they should feel about their child’s diagnosis. The entire discussion bleeds into the cure or not cure camps, “fix” or not “fix” camp, and whether or not autism is a difference or a disability.

None of that really matters to me. I hope my readers on all sides of the issue will forgive me when I say for me, the above is all semantics. I know it means an enormous amount to people how we talk about our kids because it says a lot about how we feel about them; and that how we talk about our kids extends to the autistic adults who have blessedly paved the way for our children. My intention is not to minimize the discussion, which I think is an important one. But I hope all of you will forgive me for dropping all of you, and talking only about my child, my feelings, and my life. I’m not trying to speak for anyone else – really just me.

I do mourn the childhood C would have had without autism in his life. One day many years ago, after dropping him off for school, I watched several children about his age walk to another school in the neighborhood, and felt an immediate pang of something…sadness, regret, loss – I’m not really sure what it was, and I pondered the feeling for quite some time trying to figure out where it came from and what it really meant. I decided I was missing my own childhood as well as feeling sad that C hasn’t had a childhood like my own – which, in hindsight, seems rather idyllic and simple and happy.

Somewhere, somehow, this feeling of loss of what could have been has been made out to be something it’s not. I’m not mourning my child. I’m not grieving the loss of some other life. I don’t wish he could be a different kid. What I wish is that his childhood – and I’m extending this to his life – could be easier. I wish I could better help him navigate his world. I wish the world could accept him more easily. I wish I could better handle the stress when trying to get school issues fixed, medical issues solved, and behavior challenges calmed. Yet somehow, saying I feel sad about these things has been turned into my being selfish, not loving my child just the way he is, wishing him fixed or cured, or that autism = bad and typical = good.

I mean none of that. I hope the parents who express grief or sadness or difficulty in accepting their child’s diagnosis mean none of that. My challenges in dealing with the things autism has brought into my life don’t really reflect at all any underlying feelings about C or that autism is a disability vs. a difference or anything of the like. I simply wish that it would all be easier. For all of us.

Entry filed under: autism. Tags: , , , , , , , , .

Un-simple Minds Unpacking

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