Today’s post is inspired by this blog entry on another blog I follow: i like being autistic | a diary of a mom. I had this in my head for a while, but as usual Jessie over at Diary of a Mom seems to read my mind, heh heh.
A couple of weeks ago, we were out at a barbeque. It was a gorgeous day; sunny with a few clouds and a breeze; hot but not unbearable in the sun; completely perfect in the shade. All of my daughters were enjoying their day playing with their friends and having fun. Sweet Girl was having a great day interacting and self-advocating and even finding foods to eat. I sat for a while talking with someoneat the party and we got to talking about Autism as frequently happens. She asked me some questions eager to learn about ASD in general and some questions specific to Sweet Girl, and she became thoughtful.
Then the Big Question that I dread more than any other, and am inevitably asked.
“Do you ever wish she didn’t have Autism?”
I tried to explain that I love her, that her ASD makes her unique, and I wouldn’t change her. The questions came about along the lines of,
“What about the difficult moments”
because obviously, I white wash those moments for people when she’s having a great day… because I want her and our family and friends to enjoy those days. When they see her, she’s on her best behavior most of the time. She’s “on.” She’s at an age now where she’s self-conscious about melt-downs, and it’s not something that I ingrained into her. She’s never much liked anyone even seeing her cry.
I give them glimpses into her behaviors and the rough moments and hours and days if it seems they really want to know… most people who know her, though, have seen it firsthaStillnd.
Still, it’s exhausting to talk about. I also realize that it contributes to the negative down-talk about Autism. It perpetuates the belief that Autism is more negative than positive. It perpetuates the belief that as a parent, I must want my “real child” rather than the autistic one. I’ve blogged about her, and still do, about the bad days. It’s partly what the blog is for. It is, after all, my blog and yes, as a parent, I need support but I need it as a parent to three children.
“I would not change her, even for the most difficult moments. I won’t lie, it’s hard. But she’s wonderful. I couldn’t change her. I couldn’t take away such an important part of her.”
I tried to explain all of the positive up-talk that we’ve spent years doing, how she’s not the only one working hard to cope with a world not made for her… we’re working hard to live in that world WITH her. We’re working hard to understand her. We’re working hard to make sure that she knows that our efforts are never to change her, but to help her learn new things and use her knowledge to be more independent.
We’re working hard to try to allow her to become the best self-advocate she can become, and prepare her for future relationships and jobs and life and we maintain a negative outlook and view her ASD as a negative thing… it does no good. If we view the ASD as our obstacle, then we’re bound to struggle harder and grow to resent it. Instead, the obstacles are better viewed as things that we and she need to educate ourselves on and learn to cope with. Her personal obstacles and difficulties are things we help her with every step of the way.
Some days are great, some are bad. Some of the concepts she gets eventually, and some are much harder. I always have to go into something with her assuming that she understands what I’m teaching and encourage her to ask questions. I assume intellect and willingness to learn. I want her to always assume that I love her in spite of her most difficult traits, the same as her sisters and her daddy and other family and friends. She’s no different that way. But suddenly I could tell I was losing this person I was talking to.
I was “teaching” too much. Sometimes I lecture without meaning it to come out that way.
I decided to try a different tack. I did something that I usually only do in private, a game that we play that has helped reinforce just how valuable her entire self is. I knew I was taking a risk in asking her at all, at having her response be to tell me,
“SHUT UP! MAY YOU NOT SAY THAT TO ME?!!??”
I called Sweet Girl over to us and got her engaged. I asked her the question I’ve asked before:
“Hi Honey. I was wondering, would you like me to hold onto your Autism for a while? Maybe put it in my pocket and keep it safe?” (other variations have been asking if I might borrow her Autism)
“NO! You may not have my Autism! It is MINE! I need it!”
“Okay! Just checking!”
We had a smile over her response, I gave her a hug, and she skipped away. I counted myself lucky that she didn’t scream at me for asking a clearly stupid question. She would have been justified. I felt Sweet Girl had made the point herself very firmly and more succinctly than I ever could. My dear 11 year old self-advocate.
I’ve been catching her on my Kindle recently going through the photo album, which is directly connected to my Facebook photos. She’ll pore through those photos for hours. Sometimes she’s looking at the cats’ pictures; sometimes her little cousin; sometimes when she and her sisters were little. But sometimes… sometimes she’s looking at the Autism Info-Graphics and inspirational quotes and images. She touches them and caresses them, smiling. Sometimes she asks me why I found them and shared them on Facebook so that she can hear me say,
“I saved them and shared them because you’re special to me, and that means your Autism is special to me too. It’s part of you and I love every single bit of you.”
::nodding:: waiting for more:: “Yes, that is good.”
“I’m happy you think so, honey. I love you just the way you are, just as much as I love your sisters, always, and the things that make them special too.”
::nodding:: wanting more:: “Yes, mmm hmmm.”
“I want to teach people that don’t know about Autism that Autism might be hard for you sometimes, but it has lots of great things about it too.”
“Yes, I have my Autism. Do not take my Autism. No one can have it, no one can take it away.” ::frowns:: “No one should take it away.” (this was after a discussion when she asked about an info-graphic that talked about ‘cures’ and the thought of curing her ASD made her angry) “These are MY pictures, Mommy. You saved these for ME.” ::soft smile::
And there you go.