Sometimes, for like three seconds, I can forget the Kiddo has autism. It can be the smallest event in a day but it knocks the wind out of me. Considering I spend the majority of our days just steeped in autism. I'm kind of grateful for the break from the all the autism, all the time programming.
Last weekend he was having one of those EAT ALL THE FOOD growth spurts. I couldn't cook fast enough to quell the belly. "Apple?" he said and I was impressed he asked for a sensible choice. I told him "Help yourself" and went back to dinner prep. I keep hearing him repeat "Apple?" as he rooted around the fridge. "Look in the bin. Bottom left." I call out over my shoulder.
"I FOUND THEM!!" and off he runs.
That's when I forgot about autism. In that three word sentence, that is perfectly formed. Not scripted. The appropriate response and pronouns. All in the right place. What autism? I am speechless. I am stunned. In that moment I think things are getting better.
My autism awareness returns when I see him half sitting on the love seat, with his foot banging on the keys to the piano next to it while playing Angry Birds on the iPad. Reality in this house. Then I feel guilty that I forget the autism. I feel mad at myself for feeling joy over the fact that for a few moments I thought it was gone. I know it won't ever go. Why is it after all these years? After all this time, that I still think in the back of my mind, maybe it won't be here forever?
I mean, I'm "Mama Feckng Fry" here. I"m suppose to be all about the awareness and the acceptance and look how I still react sometimes. I'm not thinking in progress made but by what I thought went away. Just when I thought I came to a place of acceptance and love, I'm still screwing it up with crappy thinking.
Why can't I just be happy that he said a full sentence? Why do I have the need to put qualifiers on it?
Why can't I just let this Kiddo find his apple and be happy that he did? Why do I have to make it this huge deal? I should be happy he's willing to eat an apple. A long time he wouldn't. I should be happy he could communicate his needs. Be it in one word or a three. Hell, a sign would have been great too. If all he did was point or bring me by the hand, any of these. I should be happy.
So that's just me at the moment. I'm really struggling with these feelings lately. I can tell myself logically till the cows come home, that I accept the Kiddo and all his stuff. Yet here I am, all these years later still wrestling with it. Still not being 100% okay with it. Forgetting about the autism. Forgetting that I'm suppose to be okay with it. Forgetting that I'm human.
I didn't forget the fries though. I have some standards. ;-)
I always get excited when I see sparks of progress in my girl. Whenever she's clearer, better able to communicate, and more engaged, I am thrilled. My girl's disability isn't going away, but of course I'm thrilled for any example of a progress that will make life easier for her; that will make the world easier for her to navigate. The work for me is in being okay when those things aren't happening. But, every time I do get to see that piece of her, I feel a little more hopeful that will be able to get her needs met without me needing to be closeby to interpret or communicate on her behalf.
ReplyDeleteLovely post, Mama Fry!
Progress is so sweet! I was shocked that my kiddo managed to play outside with another child without arguing, the other day. It's never happened before. I'm still in shock!
ReplyDeleteTo progress!
Did you ever see the movie "Mask" with Cher and Eric Stolz? He plays a teen with a facial deformity. There's a scene where they are in a fun house and they catch a glimpse of his face in one of the mirrors. It "distorts" his face into normal proportions and for a moment she sees what her son might have looked like had he not had his condition (Lionitis). It was a tender, bittersweet moment. She obviously loves and accepts her son, but when she saw that reflection it made both of them a bit wistful and sad. That's how I feel when I catch those "glimpses" of normalcy hiding behind my son's autism. I think it's normal to feel that way. ((Hugs))
ReplyDeleteEvery once and while, my son will say something so normal. We will have a totally normal conversation, or he will let me hug him, and I see that glimmer. Then it's gone. I think we just need to hold on to that glimmer. I think that's okay because that is a part of the person we love, too.
ReplyDeleteIt's okay mama fry, we all do it. Great post. I think it's all this therapy we do and all the time we spend researching it Nd reading about it; we just think we have "cured" it. Like our kid is going to be that one that beats it. But we are beating it everyday - by our small steps.
ReplyDeleteGreat post. I think those of us with different kids all to this, and I know for me I tend to see the challenges and problem behaviours more when I am not in a good place...often because of burnout.
ReplyDelete