I read a poem last night from a blog that I've seen a few times but have yet to read much of. But if this poem is any reflection, I'm going to have to set aside some time to wander around their site! The site is called "Flappiness Is" and her post, "If You were Cured Tomorrow" moved me!
I have seen more times than I can count, people or organizations raising money for a CURE. Back in the day, I know I donated a dollar or two at the check out for that exact purpose; to cure autism. Now that statement puts my stomach in knots, I can't help but feel overcome with uneasiness. What are they suggesting needs curing, exactly? Xander doesn't see a damn thing wrong with himself and I intend on fostering that thought for as long as I possibly can. Because that pure and simple thought needs to become the core of all autism awareness:
There's nothing wrong with having Autism!
Like the poem in the link above, if Xander were to be cured tomorrow, he would be a completely different kid. I can't wait to see the man he develops into. I get anxious, just like anyone else, when I worry about what the future holds for him because of the challenges he might face. But given the chance, I wouldn't take it away. I'd give him all the help the world has to offer, to help him meet his highest potential not conform to the world's idea of what normal is. I get jealous of others, I'm sure we could all admit to that. When people post on facebook about the cute back and forth they had with their toddler or school age kid, I can't help but long for those same cute moments. That's not his fault, he's delayed in his speech because we haven't figured out exactly how his brain connects verbal language with his desire to communicate his thoughts or needs. Sometimes his senses overwhelm him so much that figuring out a new word is just too much for him. Whatever the reason, we aren't there yet. But we will be and in the mean time I'll take the sweet smile and rough head bonk as an "I love you, Mom."
I respect that there are grey areas in this conversation for parents of severely autistic children, who may never find a voice in this world or live life to its fullest because of limitations but even people who were originally written off are coming to the front lines and fighting for disabled rights. Carly Fleischmann is a girl who, up until a few years ago, no one thought was even able to think clearly. Now she's a teenage advocate for individuals who are severely disabled.
But in our case, and so many like ours, I don't want to cure what isn't a disease. I remember back to before we were even parents, look at family friends with an autistic child and pitying them. I can't express how much that thought now embarrasses me. Why did I pity them, their son had done so much and is an adorable loving kid. Healthy, smart, funny and active; everything a parent hopes for. Why pity them?
Yesterday, my husband gave me the gift of an afternoon to myself and I ran a few minor errands. While picking up mother's day cards at a hallmark store, I got into a conversation with the cashier woman. Somehow we got around to Xander and I said he was autistic and instantly the "sorry" came out. I told her there was no need and it was something to apologize for. She apologized for apologizing... then we had a lovely conversation about her experience with the spectrum and about Xander. I love chances like that to change people's way of viewing this as a trauma. Something that they should pray my son outgrows or is cured from.
Outgrowing "it" or recovering strikes the same nerve as the idea of a "cure." I think a lot of people assume the kids who have excelled with early intervention and proper therapy have simply grown out being autistic. No, they have just done what the programs are designed to teach them, learn how to adapt their needs in a healthy way to match typical behavior. My sister-in-law texted me last week asking about this, she was debating a co-worker. I'm happy to say she won the debate and hopefully righted some misconceptions.
|even super heroes need snacks|
I recently made a super hero cape for my little man, much like the people over at TinySuperHeroes.com make for special needs kids. He's been having fun running around playing while wearing it. He is my little super hero. He hasn't battled any cancer or blood disorder, those kids are amazing little heroes too, but he is just my little champion of happiness. Even when something as important as talking to his parents is out of his reach right now, he just finds a way around it and keeps a bright smile. He seems to see no challenge he can't overcome, so why should I? So to my little hero I say this:
Thank you for your optimism.
It gives me faith and shows me your love.
I wouldn't change you for the world!
UPDATE: Thanks to our friends, Janee' and Gabe over at Souls Never Wrinkle, Xander is now sporting his very own personalized TinySuperHeroes original cape!