Thursday, February 02, 2006

I will continue....

I went to a speaker last night at the Autism Society of Minnesota about adapting a gluten and casein free diet for people with Autism. It was very compelling and also earth shattering for me. We are still trying to come to terms with the "A" word around here. It's been a very difficult road already and we've just gotten started.

There is evidence to prove that some children with Autism have some gatrointestional problems that prevent them from digesting gluten and casein properly and that contributes to the Autistic behavior. Some people have found that by cutting out these items from thier diet, it can reduce some of their Autistic tendencies. There is some very compelling evidence showing this link. The earth shattering part of it is that you have to completely cut out gluten (found in wheat, oats, barley, malt and rye) and dairy (all dairy!). That's no small feat! The good news is there seems to be a lot of products on the market to make this possible.

The meeting itself reminded me of the movie Fight Club. A room full of people with a common thread- parents of children with Autism. Was I really a part of this group now...or will this dream end? The emotion in the room was palpable. The tears of joy hearing about how a child had such a positive reaction to the diet. The glassy-eyed stare of information overload.

So we're starting with baby steps for Lowell. Over the next few weeks we are eliminating dairy and gluten from his diet. We'll then see what changes we see. I've heard to really access the impact, after a bit, re-introduce a wheat or dairy product and look for a behavioral reaction. Interesting stuff. So this is another part of this journey for us and we'll see how it works.

So today has been a day of meloncholy about how different Lowell's life may really be. How much effort this is going to take, by all of us. I try to tell myself, "He's just could be so much worse." But just Autistic, doesn't quite cut it yet. I haven't wrapped my arms around that.

I will continue to try to make peace with it. I will continue to make art as a way to express myself and keep me strong. I will continue to hug my son endlessly and thank him for all the lessons he has already taught me. I will continue to be energized by my daughters bright eyes and contagious smile. We will continue...


Chris said...

Hi - I can definitely sympathize. When I was diagnosed with celiac and had to go gluten-free in 1997, I went through a period of mourning and adjustment. It's a big change in how you look at the world.

But there are a lot of resources out there. I think there's an email list for GFCF. There are websites with info.

We're blessed with a lot of co-ops in the Twin Cities, many of which have at least some shelf labeling for gluten free products. This is a good place to be living if you have to do this.

The magazine Living Without covers some aspects of GFCF, I believe.

Oh, and one of my coworkers has a son who's on the GFCF diet because of autism - he says it makes a world of difference. So there is hope!

la vie en rose said...

blessings on you as you continue your journey.

Ollie&Viv said...

I don't really know what to say Kari, except that Lowell sure got lucky having such a resourceful, loving, sensitive mama. I'm always touched when I read about him. Hang in there :)

gkgirl said...

a child that i provide care for
was diagnosed as being lactose intolerant about a year ago.

removing milk products from his diet
changed many aspects of his behaviour, development and health.

this year he was diagnosed as having
high functioning autism.

sounds as if there is a definate link there. i will pass on the info to his mom about possibly looking into gluten free as well.

does your child eat by choice very much? we have been finding that this little guy eats less and less every day. i have read that is common? it is an overwhelming, scary and worrisome situation...i
feel for you and your family.

best of luck.

jenna said...

Hi! I second the post about Lowell being really lucky to have a mom like you!

I just wanted to add that we are doing the same thing for Noah hoping that his tantrums will be less (they are BAD!!). The easiest way I have found to start this gigantic process is by just exchanging rice (mostly brown, white sometimes) every time we would normally have bread. Rice cakes, mochi, bowls of rice with veggies, rice crackers....

good luck kari!

donna said...

White bread was probably the worst thing to ever happen to America.....

Good luck with the new diet - it will be better for ALL of you!

naturallynice said...

Good luck from the bottom of my heart! Such a change in diet seems drastic but it can be done and be enjoyable in the process. I was raw vegan for a few weeks, talk about restrictions! but I definitelly saw a big improvement.

Let us know how it goes..