Wednesday, April 29, 2009

"Let's pretend I don't have autism"

The words came out of the blue. We were driving on the highway on the way to OT, talking about nothing in particular. Then she said it. I nearly went off the road. She had never said anything like that before. Well, she had told me before that she doesn't like having autism and that she wants to "make it go away." Perhaps knowing that she isn't able to make it go away, she is doing the only thing she knows how to do, and that is utilize her imagination and retreat into that pretend world. Apparently, it's a world without autism. For so many years, it seemed that she wanted to retreat INTO her own little world of autism. Something has changed. It is so hard for me to know what is going on in her head, but it seems that she is beginning to be aware of what having autism has brought into her life. I tried to get her to tell me more. I'm sure I pushed too hard, as I often do. I'm so desperate to know what she's thinking. I know I asked too many questions. "Mom, you talk WAAAY too much." That's what she always tells me when she's overwhelmed and just can't give me the answers I'm seeking. But I pushed a little more. I just wanted to know what she thought would be different if she didn't have autism. She finally said, "Then I'd feel better." She sounded so weary as she said those words. I still don't know exactly what she meant. Is it the miserable GI issues that cause her so much suffering? She can't always tell me. And she has learned to deny pain if she thinks it's going to mean a trip to the doctor. I wonder what else is bothering her. I know how I hate my own ADD. I hate the feeling of my brain being in overdrive. Becca is so easily distracted, but does it feel the same to her? I just don't know. Is she referring to the anxiety, the isolation, the sense of being "different?" She can't tell me. All I know is that she doesn't want to have autism. It's the reason why I will never stop working for her recovery. There is no way I will ever accept that she has to have autism. I know I cannot guarantee she will recover, but it won't be for lack of trying on my part. I've been told I need to accept her autism, to let go, even to accept it as God's will. But God has not brought me to that place of acceptance. If that were the case, I'd know it. I might have to be dragged kicking and screaming into that place of acceptance, but I'd know. That hasn't happened. If anything, my faith is just giving me more strength for the fight ahead. I know I'm going to need it.


  1. From the mom of a severely affected child who rarely says even a single word, you are doing a great job.

    I accept that Natalie has autism. I do NOT accept that there is nothing I can do about it. I do NOT accept that I have to wait for everyone to "approve" of what I do for her. Seeing photos of her last summer with those horrible bags under her eyes (that come right back the minute I run out of antifungal medication or probiotics) and how pink and healthy and bright-eyed she is NOW. All the wry cynics would say "Well, it hasn't cured her; she's still autistic" but who the hell cares? She has noticeably improved healthwise and THAT is a triumph. Her behavior is light-years better and THAT is a triumph.

    She ran out of probiotics last week and she is cranky as a bear and actually threw a mega-tantrum getting off the school bus today. Her teacher was shocked and wrote a note to me asking me if something was wrong at home. I told her nothing was wrong at home but she was out of probiotics and I had noticed that she was cranky and testy at home, too.

    So we are not nuts!

  2. BTW, I changed the name of my blog. It is now called "She's 1 in 150, but she's more than a number"

  3. That's the frustrating thing, waiting for approval, always being told a treatment or therapy isn't "efective" or "evidence-based" when nobody wants to do any real research on it. Yet, look at the money that is spent on some of the most ridiculous research. I'm sure you've seen some of those ludicrous studies they've mention on AoA. I have to jump through hoops to even get reimbursed for supplements through our health savings account, and that's my own money I'm putting in there.

  4. Oh Becca. I pray you will indeed find the things that can help her feel better.


Before autism