Thursday, April 30, 2009

Time to bring out the big guns

Tomorrow we head to Florida for our appointment with Dr. Rossignol. People have asked me why I haven't just taken Becca to a local DAN doctor. I know there are some in our area, but I don't of anyone who has gone to any of them and gotten any real help. We have waited far too long to see a DAN doctor. We've been rather conservative with the biomedical treatments and we've been relying on our own research with no real guidance. I talked to a mother who has a very severely affected child, who has been all over the country trying to get effective treatment for her son. She said Dr. Rossignol was the only one who was able to help him. I did some research and liked what I learned about him. He's got a good track record, and at this point, with Becca being nine years old, that's what we need. We've put this off far too long. CHOP is our local children's hospital, and their philosophies tend to spread throughout the local community. Autism is treated as a psychiatric disorder, and the core medical issues tend to get overlooked. I find myself getting further and further away from anything related to CHOP. Our GI doctor is in Boston, we're seeing a metabolic specialist in Cleveland, and if the CHOP endocrinologist doesn't start doing some serious testing I've got on lined up in California. I'm excited and very hopeful about this appointment. I should actually be packing now, our flight leaves very early tomorrow and we'll be up at 2 AM getting ready to leave for the airport.

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.

Before autism