Saturday, May 09, 2009

Reflections on a Rainy Day

As I was sitting in a session at the DAN! conference last month, I realized that I had come with a few burning questions.

Does 'recovery' and 'losing the Autism diagnosis' mean that life goes back to 'normal' like everyone else's? Will we finally be free of enzymes and supplements, and diets and therapy? Will 'losing the diagnosis' mean we breathe a HUGE sigh of relief, check Autism off the list and file it away in the history file?

Or-Is Autism, like Cancer, a monkey that may never completely be off our backs? Even after recovery, will we forever be looking over our shoulders wondering if regression is lurking around the corner? Are special diets and supplements a permanent part of our reality or simply a means to end for now? Will my kids ever just eat a McDonald's cheeseburger with their friends with no negative repercussions?

Obviously none of the sessions were directed specifically at my burning questions, but I did get my answers, for the most part. I want to report that I discovered that what I have wanted to believe for the last 2 years is indeed true--Autism is a blip on our radar. Here today. Gone tomorrow. All of these maddening protocols, obscenely expensive medical treatments, etc.-just temporary. I want to say that is true, but I confirmed my fears that this simply isn't the case.

As I sat through session after session, looking at slides and diagrams of mitochondrial dysfunction, gut inflammation, brain inflammation, oxidative stress, etc. it became abundantly clear that our children are SICK. Critically ill. Even though we have been treating them as such anyway, I don't think it really resonated with me that they are actually VERY ILL. Their bodies are not working properly. We spend so many hours a day trying to defuse the behavior bombs that I simply forget to put as much mental energy into the 'health/illness' piece of all of this. Don't get me wrong, we are definitely addressing these issues with supplements, diet, prescriptions, etc. I am fully aware that my kiddos have compromised immune systems--we have E.R. visits, missed work & school days, and let's not forget--the medical bills, to prove it. But I feel like I go through the motions for that part. We get everything done, but only just.

I was thinking the other day (while in the shower--10 more minutes of peace) that I spend so much time trying to survive that most days I forget to live. It makes me sad to admit it, but it's true. I feel like we are in survive mode and the lever is duct taped and superglued there with no hope of switching to cruise.

I have spent the last 2 years enduring therapies, difficult diets, wild behaviors, tantrums, supplements and doctor appointments with the desperate hope that this was all temporary. I left Atlanta (DAN! Conference) with a realization I am loathe to accept. Autism is our reality. This is our lot. We didn't ask for it. We are exhausted and thoroughly spent by it. It is getting better. I believe our kids will recover/are recovering. But Autism and health issues may never go completely into the history file for us. This blip may be on our radar for a long time. That is NOT the answer I wanted, but I believe it to be the truth.

My focus now is accepting that recovery truly is a marathon and not a sprint. I have read that so many times in the Autism community, but I'm not so sure I understood what that even meant until now. What I think it means now is accepting that our kiddos are sick. Their bodies are a train wreck and simply aren't doing what they were meant to do. At this point in this journey we are fighting hard to restore the function to lots of different parts to get the body to work in harmony as it did in the beginning and as God intends for it to. That is not a slow process. It is not an exact science. There is no silver bullet. Every person responds differently to treatments. So we try. We succeed. We try. We fail. We try again. We will try new things. We will stop old things. We will read everything we can, always striving for more knowledge, new innovation and research, and of course awareness & prevention for other people. We will continue to ask God to heal our children, and ask you to do the same on their behalf. We will do EVERYTHING in our power to help our children heal.
What we won't do is quit. I don't have all of the answers but perhaps that is the best lesson of all.

1 comment:

Tracey said...

Okay, this kind of left me depressed and it is not your fault. You are just stating the cold hard facts of autism. We are forever changed. I am trying to somehow see it all as a blessing. I have learned a TON about food and nutrition. I am sure I will learn more. I devour autism book after book in my quest to learn more and spend time in yahoo groups learning yet more. I think God reached out and touched me and gave me a passion. He wanted to teach me how to heal my children and heal myself. Not just with good nutrition, supplements, etc but also heal my spirit somehow. My heart has been broken, my faith has been strengthened and I feel my knees go weak when my baby with PDD-NOS says I love you. I think he wanted me to live and feel and grow in a world affected by autism. It is not easy, it is a tough road but God chose you for such a task because he has great faith in you and your great love for those kiddos.
Hang in there and I will too. We will keep going...