Featured Guest Blog: How To Get Your World Spinning Again
I remember exactly what I was wearing the day Savannah was diagnosed. I spent much more money than I should have on my new dress but the fabric was heavenly and it was just the right shade to set off my reddish hair. I felt like a million bucks when I put it on that morning and, oh, the compliments I got at work.
I never wore it again.
After work, we sat at a meeting at Savannah’s preschool, a meeting the school called to discuss Savannah’s progress.
I remember hearing some of the words the developmental specialist was saying: PDD-NOS, lack of abstract thinking, delayed gross motor skills. But in between these words I inexplicably heard the “Wah Wah” sound the teacher made on the Charlie Brown cartoon.
I remember my husband sitting calmly, asking questions, and turning to me several times with a perplexed look as if to ask, ”Why aren’t you saying anything? Don’t you have any questions?” He was calm because he had no idea what was happening.
No, I had no questions. I had been a child and family therapist for many years and I knew exactly what was happening.
Our world stopped spinning right at that very moment, or so I thought.
I had seen plenty of autistic children but failed to recognize my own. To be fair, she had no physical manifestations of autism, didn’t stim or flap. She was brilliant, teaching herself to read by the time she was three, but she was autistic.
In my career, I counseled parents after they were given a similar diagnosis. I was sent by the doctors to comfort them, provide additional resources, and shore up the advice not to try any of those “alternative” treatments because they were “unproven” and “dangerous” and “didn’t work.”
Oh, yes, I thought, our world had stopped spinning.
I floundered around for another two weeks, alternating between feeling sorry for our family and being angry, but then I got to work. I started poring over the internet and learning everything a I could about those “unproven” treatments.
I began reading about parents who had recovered their child from autism, PDD-NOS and Asperger’s. Admittedly, these parents had done a lot of research and hard work, but it was there; it was possible. A glimmer of hope.
I decided since the doctors had told me the condition was incurable that I didn’t have anything to lose. Besides the parents seemed so sincere and convincing. What did I have to lose? What if I tried? What would happen? Wouldn’t I be sorry if I never gave biomedical treatments a chance?
And a funny thing happened as I read and read and read, sometimes all night. The world started spinning again.
Today, my daughter, Savannah, is a typical child in a regular sixth-grade classroom. I spend time helping other parents find their way. Quite the opposite of my former role!
Some of the most important things I learned to give your child the best possible chance at recovery, things that started and kept, my world spinning, are:
1. Read, read and read and read. Never was the adage “knowledge is power” more true.
2. Keep notes. I am surprised how long it took me to realize this was a good idea. I had been an avid note taker in school for something as superfluous as a grade, why shouldn’t I take notes now when the future of my child was at stake?
3. Don’t jump on the first or second or third treatment you read about. Believe it or not, you can make things worse, so you want to take your time looking at both the positive and negatives of any treatment. Purposely seek out the stories of children who didn’t do well on the protocol you are considering.
4. Don’t make the mistake of thinking a well-known autism doctor is going to single-handedly cure your child. Behind the recovery stories you will generally find a determined parent who was calling the shots. It will take all of your energy to figure out how to fix things, a doctor doesn’t have that kind of time to focus on just one patient.
5. Give yourself at least three to four months to get up to speed on the latest autism treatments and to decide how to proceed. Time spent here is invaluable.
6. Keep a list, in order of priority, of treatments you would like to try, treatments you think your child would especially benefit from. Also include the possible benefits and side effects of each treatment.
7. Take care of yourself. Eat right, exercise and try to at least get the minimum amount of hours to sleep. Everyone thinks better when they feel better.
Do know this fact: Autism is treatable and is reversible. I didn’t believe in biomedical treatments until I found myself with an autistic child. But Savannah’s undeniable positive response to simple over-the-counter supplements (multivitamin, TMG, phosphatidylcholine) and an over-the-counter chelator, alpha-lipoic acid, with low/frequent dose chelation, made it clear that it didn’t matter what I believed. Faith in biomed was not required, thank God.
Savannah has come farther than I ever dreamed possible. She shines in her classroom, has no aide and no modifications to her school work, except where she is advanced. She eats just like her peers. We don’t have a cupboard full of supplements and life is about as “typical” as it gets. She even has the same two friends she made in kindergarten and has added many more.
The road ahead won’t always be easy, but recovery is possible. I remember being in your shoes. The heartbreak. The overwhelming sense of uncertainty and fear. My greatest wish is that you find a way to press on. Learn from those who have gone before.
Find comfort in recovery stories and find the tools to make your world spin at just the right speed.
~ Rebecca Claire
Rebecca Claire is the co-author of the recently released book “Fight Autism and Win”. She is currently enjoying life with her recovered daughter but remains committed to helping others heal their children. Rebecca moderates Autism Parent Central and shares details about her family’s personal story of recovery atwww.SavingSavannah.org. You can find her on Facebook here