Friday, January 26, 2007

Rethinking things - DAN!

A few posts back I wrote about the GFCF diet. This is part of the biomedical approach to treating (not curing) autism, which for a very long time Rob & I have resisted using for T. Rob has written a very good post about our day yesterday, which I will link below - there's no point in writing all of this twice!

http://chesterley.blogspot.com/2007/01/chemistry-experiment.html

But I will add a few other comments here. Rob is right - I really needed to hear a medical professional say to us "You did everything right." Yes, I had a RhoGam shot and the flu shot while pregnant (both probably had the dreaded thimerosol as a preservative - ugh); both were recommended if not insisted upon by our OB at the time. But I also nursed T for 15 months, got him therapies as soon as we knew something was wrong, got all the prenatal care I was supposed to and didn't take any forbidden meds...I guess I can't impress upon people enough just how hard it is NOT to feel like this is somehow my fault. I mean, I know it's not, but year after year of questionnaires asking "Did you have a healthy pregnancy?", "Describe the delivery", "Did you take any drugs during your pregnancy?", "Did you eat fish?", "Were you on any antibiotics?"...you start to get the impression that something you did caused this. I know the questions have to be asked. I also know that I am proud to be a Rule Follower - if a book or a medical prefessional tells me to do something, I DO IT. If they tell me not to, I DON'T. So, hearing from this doc - a DAN! (Defeat Autism Now!) doctor even - was such a relief. Not so much because I thought I caused it, but to hear her affirm what I know to be true...that was a gift.

This is going to be a long road. Years, perhaps. But we are in this because T deserves every opportunity to grow into his best potential.

One subject of conversation on the way home: jobs, career, and what to do next. We are feeling so well connected with all the services in our part of the world that if feels like we'd have to completely start over with all of this if we move - and why in the world would we want to do that? Of course we wouldn't be starting therapies over again, but we'd have to find new therapists, new schools, new doctors, establish relationships...sigh. And Rob is at the point in his doctoral degree that we really are looking toward what is next. I guess we'll have to take that as it comes.

In the meantime, I'm going to just sit and have a quiet weekend. I'm really tired.

4 comments:

EA said...

Resting is good.

Anonymous said...

someone recently called me a spiritual warrior. It kind of fits my life right now. but you two - you three - you give me more strength by example than I could ever know. Your journey, though hard, is inspiring. I know you are helping people out there in the world. Peace from Pam in Portland.

lemming said...

You did everything right.

It is the folks who have been spared any kind of crisis who ask horrible questions such as "what did you do wrong."

You are tactful, so don't say this outloud, but I give you permission to think: nothing, you idiots. I ate ice cream, listened to Brahms and talked my husband out of "Obediah" as a middle name. You did good, and you are doing even better.

nonie said...

You really are an incredible woman and a mother. I never doubted that fact since the day you married my son. So if you need another voice, non-medical at that, to tell you that you are fine..I am right there. Life has a way of slapping us up side the head sometimes and it is the strong of heart and spirit who keep going AND do it well. T is a very lucky boy to have chosen you for a mom. I love you.