Tuesday evening on New Earth Journey Radio I will be talking with Jill Rege on how her son recovered from Autism. Here is a great letter she wrote to new autism moms in 2013.
Dear New Mom,
Welcome to the club. I am deeply sorry you find yourself in our company, but because the numbers of kids with autism continue to rise (1 in 50 for heaven’s sake!!), you won’t find yourself lonely for very long. You’ll find we section off according to our approach in dealing with and treating autism.
This is the biomed damn-it-I’m-going-to-save-my-kid section. I’m one of the early adopters of biomed who comes back to tell you to keep going, recovery is possible, and if not recovery, definite improvement. Things don’t have to be quite so hard in the future and there really is a biological underpinning to autism.
One thing I never heard when we started this–although to be honest if someone said it, I wasn’t listening–is to make sure you take care of yourself. Eat a clean, healthy diet. Give up gluten and soy. Take a few good supplements. Sleep at least 7 hrs a night. Keep a date night or lunch with your husband. Learn to meditate. (www.profoundmeditation.com has a free 20 minute track that helps your brain chill–it sounds like a rainstorm) Find something that feeds you outside of autism. My sister kidnapped me one day to make jewelry. For a while I took belly dancing class. Knit, read, have a funny blog you follow every day (I loveTomandLorenzo.com and Laineygossip.com) You’re in training for the toughest, most stressful job there is. Autism moms have stress levels and PTSD like combat soldiers.
If you are the engine that drives your family and all of your child’s treatments, you can’t just run on adrenaline. You can’t be the battery for everyone and not recharge. That’s one of the reasons I’m such a mess with chronic fatigue. I dropped exercising and socializing to handle all the demands of our crazy therapy schedule. Plus the friends I had at the time didn’t get what I was doing. At all.
Over time I made new friends who were on the same road. I’m only now learning to meditate to reset my fried nervous system. I read something for pure entertainment every night before I go to sleep. I eat well and work with a naturopath I like, but it’s a long road back.
There were a couple of moms from Connor’s special needs preschool who would say “it’s a marathon, not a sprint” and used it as an excuse to not expend their energy on intensive intervention up front, or a special diet. Instead they would spend 2 hrs in the gym everyday, have high maintenance beauty routines, take week-long trips with their girlfriends, devote themselves to a kitchen remodel, etc. They kind of wedged having a special needs child into the space that was left. I think they imagined their kid would get better with just therapy or special ed kindergarten.
Not so much.
I can tell you’re not like that. If you found my blog and you’ve read this far, I bet you’re all in to save your kiddo, but you can’t sacrifice yourself in the process. It’s more than a marathon, it’s a war and you are Special Ops. But you have to train as you go and there’s no guaranteed R&R. Those guys do not mess around and when they’re on the job, they take care of themselves. Maintain the machine. Don’t be like me. It’s harder to go back and fix it than it is to maintain it.
The other thing I need to tell you is try to find a way to let go of the anger and bitterness. Ground yourself in love. You will be a much stronger fighter if you’re fighting for something. It’s impossible to let go of all of it. There’s always something new infuriating on the horizon, but try to find forgiveness, even if it’s just a tiny drop. Anger in the short term can help move you to action, but long term it will suck you dry.
In the 10 years since my boy was in preschool, a lot has changed. I have run into some of those “marathon” moms and their kids are still in special ed for the most part and they are *finally* willing to consider biomed. 10 years ago I was Fringe Mom. Now I’m a mom with a recovered kid. You want what I have, but be smarter than I was.
(ok, I’m still Fringe Mom, but now it’s the TV series on Fox. We’re addicted!)