Posts tagged ‘typical’

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

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.

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

Angry at Autism

     Fixing or curing C’s autism has never been on my radar screen. His health and happiness are all that’s important to me, and in helping his health, his autism has taken some hits along the way. I’ve wished away the challenges autism has made him face, although I also see the flip side of his becoming a better person for having weathered those challenges.

     During a particularly difficult period a few years back, I visited a therapist who told me to get angry at the autism. I puzzled away at that for months, never coming to a resolution. How could I be angry at the autism? C is autism and autism is C just as much as he is sweet and has dimples. It’s just part of who he is, and being angry at it seems counter-intuitive to me.

     However, I recently understood what it meant to be angry at autism. For once in C’s life, I found myself so angry at something that happened that I wanted it all to go away. I wanted him to be a typical kid, a kid who never would’ve been put through this. More than anything, with a fury and desire I’ve never felt before, I wanted his autism to be gone.

     The feeling was gone almost as quickly as it came, but I suspect I’ll always remember where I was and what was happening when I felt it. In that moment, all I wanted was that one word that is so rightfully taboo in our world because it is such a wrong word. In that moment, I just wanted him to be normal.  But then the feeling went away, and back I went to my normal, in which everything just IS.

March 3, 2009 at 9:48 pm 5 comments

It is what it is

     Occasionally, I have moments where I wonder if C has outgrown his diagnosis. Some days, he does so well, and I wonder if we saw the same doctor now that we did when he was 3, she’d still give him the same diagnosis. Yet there’s really no other diagnosis that fits; we’ve always said he has “C syndrome” because his medical issues combined with his developmental ones just don’t fit into a tidy little package with a word attached to it. 

     Usually, when I have those days of wondering where he fits on the diagnosis wheel of fortune, there is some cruel reminder of the reality of the situation. He is the only child not included in a game at the park, he can’t eat his ketchup because it’s a slightly different shade of red than the previous bottle, or he has a complete and terrible meltdown because I got him a new toothbrush. A slap in the face, really, is what it is for me. “Yup,” the universe says, “this child will struggle with some things his whole life. Deal with it.” And I do, and he does, and we all move on.

     Yet tonight I had one of those reminders that really made me smile. It wasn’t a “typical” day by any stretch; there was the distress this morning over the potential of being even a second late to school this morning, combined with the total heartbreak this afternoon due to his placing last of all the 2nd grade boys in a fitness challenge at school. We talked long and hard about how everyone is good at something different, and how he’s good at many things, and how he’s only competing with himself on the fitness challenge. I reminded him he was born early and born small, and that he still had some catching up to do, and that probably “N” would always be taller than he would, and how that’s okay.

     So I didn’t have far to fall today. I wasn’t getting all giddy about C “graduating” from special education or anything like that. Perhaps that’s why tonight’s reminder was such a gentle, actually sweet one. I walked into his room to change his sheets, and saw on the floor, lined up in perfect rows and perfect lines, all of his stuffed animals in complete and perfect alphabetical order.

October 1, 2008 at 5:42 am 6 comments

Trouble with a capital T

     The first time C ever got in trouble at school was during his last year of preschool. When I went to pick him up, his teacher – a delightful woman with an enchanting voice every preschool teacher should have – was aquiver with excitement. “We’ve been waiting for this!!” she exclaimed. “It’s so typical!” For the uninitiated, “typical” is the word that has replaced “normal” in the world of development and special education. “Typical” is something they strive for, at least in certain areas.

     For Miss P, it was a moment that surpassed nearly all others in C’s achievements during his years with her. For him to get into trouble meant he was comfortable enough to let go, he was relaxed enough in his environment to just be a kid. I have no recollection of what he did to land in hot water, but I do remember how excited we all were.

     Now, when C tells me he was “counted on,” I admit to experiencing a secret thrill. They use the “1-2-3 Magic” method at his current school, and he rarely gets past a 1. In my mind, when he reports being counted, it means he was just being a kid, a regular kid at that, and was probably participating in mischief with another child. All good things for C, in my book.

April 18, 2008 at 12:12 pm 2 comments


It’s all autism, all the time.

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