Ed note: I put the following up on Diary’s Facebook page on Saturday. I feel the need to repost it here for a couple of reasons. Firstly, not everyone who reads Diary is on (or follows it on) Facebook and I really wanted everyone to see it. But more importantly, I wanted it to be a part of Diary. I wanted it to stand as evidence of my own evolution and so too, to serve as proof of this community’s unqualified support for one another and our children. I am honored and grateful to be a part of this incredible group of people.
Last night, a reader left the following comment on the COMMUNITY BRAG PAGE …
My 7yr old son had a great Wednesday at school. He did so well he was rewarded with taking home the class mascot Peter Rabbit. He was beaming when he walked out to the car w/his prize for the night. Needless to say a day where he likes school is worth its weight in gold here. We celebrated with ice cream & took pics for him to remember the day with. At night we read The Tale of Peter Rabbit & made Peter a bed next to his pillow. When Mason took him back to school he was sad but had no meltdowns, tears or tantrums. It’s only one day, but I will take what I can get & celebrate!
Followed by the following disclaimer ..
(Jess, I feel bad that this doesn’t sound like a lot, because my 7-year-old is mildly autistic & fully functioning. School is hard for him w/all his sensory issues and I am so very proud to have a good day that I wanted to share. As crazy as it sounds, sometimes I feel guilty that his autism is not as severe as most here. I will totally understand if this isn’t posted, but I wanted to say that mild or severe I will take any bit of good that comes his way. Thanks for your blog, it’s great.)
I post this here because I wanted to share my response. I completely understand this commenter’s feelings of guilt around having a child who is relatively lightly touched by autism. I’ve written about it. I used to live in it.
Over the years, I’ve (mostly) managed to move away from it, using it as a stepping stone toward gratitude and what I now see as a sense of responsibility. Here’s what I wrote …
Please know this – the thing that I love most about this little slice of the world here on Diary is that it is a sacred space. It is a place where our children’s level of impact will never be a competitive sport. A place where we all understand that challenges and progress are relative within the context of the individual – and where we know nothing if not that our kids are individuals.
I used to apologize constantly for the fact that my Brooke is not as involved as other kids. A lot of my early posts contained ‘disclaimers’. I felt the constant need to say that I knew that we swam in the shallow end of the autism pool and that I had no right to ‘complain’ (a euphemism for writing about the stuff that hurt.) Ed note: don’t believe me? CLICK HERE
Eventually, the apologies grew tired.
I finally had to accept that our story is our story. Our daughter is relatively lightly touched by autism (for which I thank God each and every day), but it is nonetheless the filter through which she processes her world. Within that context, there is joy and there is pain – and while her challenges are not as severe as others, they are no less real than anyone else’s, nor is the progress that she makes any less profound for her or for us.
Autism is a spectrum disorder. By definition, it is an enormous umbrella over a vast spectrum of human difference. An imperfect label at best for such disparate conditions, but it’s what we’ve got. For better and worse it inexorably ties us together.
But the differences remain. Which is why I constantly implore every member of the community to tell his or her OWN story. Why I say again and again that no single voice can ever truly represent the whole.
So bottom line, we have to remain sensitive to each other, we have to remember that ours is not the only story, and that no matter how different our children’s manifestations of autism may be, we are walking this road together. As such, I believe we have a responsibility to each other – to fight not just for our own children, but for ALL of our children. And that, to my mind, includes not just removing the barriers, but also celebrating the progress for each and every one of our kids.
Please don’t ever be afraid to celebrate your child’s successes. They matter.
And a good day at school? Priceless on any front.
Thank you for sharing.