Dear Ms. Wright, Autism Speaks and any others out there who may read this…
Dear Ms. Wright,
I don’t have your email address or phone number, so I write this letter and will post here and PRAY that some how it will get forwarded around and someone will see it and show it to you, because you need to read it.
I will start off by saying that I take full responsibility, I should have known better than to read something when my boy was home. With that said… I will continue on.
This morning I started reading my emails and posts the way I always do, every morning in between making breakfast, school lunches and before it is time to drive my boy to middle school. Jay had gone up stairs to brush his teeth and I was enjoying my morning coffee and catching up. I was reading a post from one of my favorite bloggers, Jess from a diary of a mom and decided to click onto the Autism Speaks link she posted and read for myself what you wrote on the eve of Autism Speaks’ first-ever national policy and action summit in Washington, D.C.
As I said before I should have known better.
I had just scrolled down to part where you wrote this, “And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?” My boy had entered the room without a word, amazing how quiet he can be when he wants to. He slithered like a snake behind me and started reading, unbeknown to me. I suddenly felt a tap on my shoulder. I looked up and he simple said to me…
“Mom, do I make you ill?”
I am crying as I type this. I spent the entire morning trying to be calm and matter of fact like undo this and silently praying the whole time that he did not just say it is “okay” because he knows how upset I was because that is what my boy who has a shit load of empathy (sorry about the curse words) would do.
I am writing this and I pray that you some how get it Ms. Wright, and that from this point further you will choose your words more wisely, because I never ever want to see that look on my boys face again!
This has to stop! Never mind the horrible message we are sending to parents of autistic children that their kids are broken and need to be fixed, that they are burdens and not whole and that they are the reason for broken marriages and all that is wrong in the world.
Never mind the message that we are sending to people who know nothing about autism at all. That Autism only looks like the picture you painted, one that is to be feared. I assure you that what you described is not our autism. Our autism looks like my boy holding a 4th place trophy that he received while competing in his first ever United States Chess Federation Ranked tournament this pass weekend. A tournament that was filled with challenges for him, but for which he overcame with more grace and dignity that I ever could and I don’t have autism. Our autism has just as much laughter as it has tears, just as much triumph as it has tribulations.
What kind of message are we sending to our kids? I’m ill right now alright… but not because of Autism, but because of the simple fact that a powerful organization with so much money that could do so much good for our community just set my family back a bunch of steps. I work every day to build my boy up, to give him the self-confidence to go out in a world that already does not understand diversity and where different is not accepted. To think that in one single sentence he read, because an organization has Autism in its name and therefore supposedly has creditability in his eyes, my boy was knocked down.
I will repeat that… my boy, my sweet, intelligent, funny empathetic, LOVING boy who oh yeah just so happens to be autistic… was knocked down.
I know you do all that you do with the best intentions. You love your grandson. I can appreciate how that love would make you want to move mountains for him. I too want to move mountains. But even more than moving those obstacles for my boy, I believe in building him up so he can go out in the world and move them himself! I believe in making my child feel worthy, that he is perfect just the way he is, because well, HE IS PERFECT JUST THE WAY HE IS! And although he may have challenges, he is capable of doing anything. And most of all I never ever want my boy to feel as if he is some type of burden to me, his family to society because he is not!
Jay if you are looking over my shoulder now and reading this… YOU my dear boy are certainly no burden. YOU are a blessing. YOU are PERFECT JUST THE WAY YOU ARE and do not let anyone ever make you feel differently!
Words matter… what our children hear matters even more.
I take full responsibility, I should have known better than to have read that when he was around. But you Ms. Wright, you should have known better than to have written it!
(AKA Proud Mama of an Autistic WONDERFUL Boy!!!)