Saturday, October 11, 2008

Getting Information from a Doctor (?): The Beginning of Our Journey

The Very Beginning:

When Meghan was diagnosed, we already kind of knew the results before the results were in. Meghan was not talking at all by the age of 2 and she would almost always turn a deaf ear when spoken to, and we originally thought “Deaf?” Until Barney came on the television and she shot across the house like a jackrabbit on speed to get to the TV. “Damn, she’s not deaf!” (I know, I know, how many moms wished that their kid was deaf—I just knew that it seemed better than autism.) We had read quite a bit about autism during this time and started working with her on the technique of Floortime. I remember the day as if it were just yesterday, I would be on the floor with her as she lined up her toys in a row and I, in turn, would disrupt this form of play of her perfectly placed toys and started playing with them “appropriately” while she watched. Then she would, again, try to move the toys back to her “lineup” and I would, again, play with them appropriately, smiling at her and watching … We would continue to do this for about 5 minutes until it became a game in itself, smiling and noticing that she would anticipate my next move. Ah, results.

The book is called The Child with Special Needs, by Stanley Greenspan; it helps a parent understand autism (special needs) and how to teach your autistic child through playful techniques like Floortime. It became my bible to reaching out to my daughter.

On the day of our evaluation appointment: a team of developmental doctors from Children’s Hospital in Boston, I was able to attend Meghan’s full evaluation process. I noticed that she couldn’t do some of the things that children her age should be able to do like “feeding” the baby doll instead of examining its eyes and flinging it across the room (oops). Two weeks later we were back for the results. Walking down the sterile corridor with the team of doctors leading the way as if walking to our executions, I could almost hear the drumming of doom echoing above us. We were told it was autism (as we already knew) but I still cried. Then they handed us a cheap, 3-cent, three fold pamphlet filled with more pictures of cute autistic children than information. In fact, I remember thinking that if I didn’t already know what this pamphlet was telling me about autism, then my kid was already screwed!! As an after-thought we mentioned what we were reading and learning about autism (so get a CLUE, you doctors, for Christ sake). They wrote down the information like a psychiatrist writing down the details of your psyche, a bit disconcerting and condescending, if you ask me. And then the inevitable “Good luck to you” followed with a “Thank you very much and, yes, have yourself a good day, too.”

Then off to a martini lunch! (Um, that would be me.)

The next time we saw this team for a reevaluation, some 6 months later, she was doing better … I was trying hard to suppress my nervous laugh while my body was visibly shaking as if watching my baby perform the test of her life, and watched as she fed the baby doll, among other things. I remember walking down the hall shortly after, chanting to myself: she fed the doll, she FED the doll … she stirred the imaginary food and she fed the GOD DAMN BABY DOLL! Ah, progress.

The doctors confirmed, yet again, what we had already known, that she was making progress so keep up with what we were doing: the ABA based class (that we had found), the home-based ABA program (that we enforced) and the Floortime (a book that we had researched and purchased). Oh, and before we left they kindly gave us reading suggestions: um, the books (listed verbatim) that we had mentioned to them 6 months earlier.

“Ooh,” they chuckled, as we reminded them, “I guess we can’t do anything more for you then, can we?”

We left with a queasy stomach and a bad taste in our mouth as we did our usual bid of “Good luck and have a nice day …”

Oh … and here, take back your colorful pamphlet, would hate for you to run out.”

The point of this story is to not expect a doctor to help you and your child, you need to take the bull by its horns and help your own child. You are the best advocate for him/her so learn everything that there is to know … I promise, it will be rewarding.

Note: Let me hear your voice was another book that inspired me at the start of “our” journey:

The Child with Special Needs by Greenspan


Tanya @ Teenautism said...

It was almost eerie for me to read about your daughter and the baby doll, because I remember when Nigel was four and he took his stuffed Tigger doll and pretended to feed him. I almost cried because it was the first imaginative thing he'd ever done. He even said "Eat" in a quiet little voice. I think it's the memory of those remarkable moments that sustains us.

Holly Nappi Collins said...

I also think that we are luckier too because moments like that are like winning the lottery, and for most other people, it's just another moment of what's expected!!