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 at www.SavingSavannah.org. You can find her on Facebook here.
Rebecca,
I follow your blog and find such inspiration in Savannah’s story! My daughter, Leah, is 3 1/2 and sounds somewhat similar to Savannah in that she does not much, if any, of the stimming or flapping so other than her constant need to move and her lack of speech, one might never notice that she has autism. I look forward to hearing more of your journey with Savannah because it motivates me to keep going and NEVER give up!!!! This is the most important process that I will ever go through in my life as my daughter’s life is at stake so thank you so much for what you do and KNOW that you are making a difference in so many people’s lives, for that we will be forever grateful!
~Lindy C.~
Lindy,
Thanks so much! I am glad you enjoy the blog, writing it has been very cathartic.
My best wishes to you and your daughter on your journey to recovery!
Rebecca
Thanks for writing. I am a mom to a recovered PDD-NOS child now 5 years old. She responded very well to biomed intervention. I think it is so important we share our stories - I read and read and read and most importantly listened to other mothers who came before me! Best to you
Michelle,
So glad you weighed in and let others know that there are other recovered children out there. We don’t speak out for a lot of reasons; guilt among them. I hope my story can spur others with recovered children to come forward and give hope to others.
Our stories are not anomalies.
Rebecca
Always a pleasure to read recovery stories
I especially like #4. The doc does not have the vested interest in YOUR child.. plus he might even makes some mistakes so be diligent about everything you give your child. I made a few mistakes there trusting the docs once again.
Thank you.
Great post! Thanks so much for sharing with us and all that you do <3
Poppy and Sugah,
Thank you and all the great Moms at TMR for giving me the opportunity to share my story. As I reported, as a young therapist I cautioned parents against Biomedical treatment, something that gives me great amounts of guilt to this day.
Allowing me to share my story, gives back a little, maybe. My best to all of you on your journey to recover your children.
Rebecca
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I love reading recovery stories. It give me so much hope!!!
Hello,
what is TMG?
and
is alpha-lipoic acid the only thing you used for chelation?
Hi,
TMG=Trimethylglycine, BIG word, now you know why we shorten it
TMG is a methylating supplement with three methyl groups. In some autistic children, methylating supplements such as; TMG or DMG or MB12 can help facilitate more speech.
We did also use Dmsa at the beginning, which you can also get over the counter. The dosing of the chelators was according to AC Chelation or Cutler Protocol or low/frequent dose chelation.
Rebecca
Just starting on this journey with my son, I love hearing stories from families about recovery. I know we have a hard road ahead & sometimes I feel like nothing is working (giving supplements) but I know he’s worth the fight. Thank you for sharing your story!
From the moment my son was diagnosed, I reached out to other warrior mothers that had gone before me. One girlfriend told me she spent so much time on the computer that her husband thought she was having an online affair! I read and read and read some more… books on diets, supplements, therapies, and a lot of stories of hope. If others could do it, so could I. Thank you for sharing Savannah’s journey and giving us all hope that it could happen for our child as well. My son may never lose his dx, but I am healing his body and praying that he will be able to live his life to the fullest. When new mothers come to me after receiving the news that rocked their world, I tell them autism is not a death sentence. Autism is preventable and reversible… let’s keep spreading the word.
Hi Melissa,
I agree, I never forget the mothers who went before me, without all the information I had, whose research I read, guidance I received and experience I was able to learn from.
These original mother warriors were very helpful to me.
Rebecca
Awesome!
HOPE!!!
My son is also in 6th grade (in the fall). He is doing amazing things and has very little support. I have been at this for 8 years. I have to say…there was never a doctor I trusted 100%. I picked and chose everything from every doc. But they all have 100% responsibility for his recovery. They all were frustrated at me for my “infidelity”. And I love them just the same.
Blaze says:
“I have to say…there was never a doctor I trusted 100%. I picked and chose everything from every doc. But they all have 100% responsibility for his recovery. They all were frustrated at me for my “infidelity”. And I love them just the same.”
This bears repeating, lots of savvy wisdom here.
It is important to find a way to get and keep drs invested in your child. It may or may not take a village to raise a child but it most definitely DOES take a village to recover a child.
And, besides *wink* *wink* we always know who is firmly in the driver’s seat.
Rebecca
Thank you so much for this. I was nodding my head through the whole thing because this story sounds so much like mine.
Thank you for your honesty. This is a great list and one I am sure I’ll be sending on to my new parents. Unlike your situation, I have one of the normal one day and gone the next children. Nobody had to diagnose him, nobody had to pull me into a meeting, the reality was cut and dried, crystal clear. I have been in “recovery” mode now 18 years. In that time I have met non-believers and refuse to try parents, some converted, others didn’t even listen or try. We did not get the miracle of recovery…not fully anyway. We did recover autism, we did not recover other issues brought on by vaccine damage, stroke damage and seizure damage, the last two thanks to vaccines in the first place. Does it stop me from preaching biomed…not at all. Without it, my now 20 year old would not be were he is, have the peace in his life or understanding of spoken language. Gone are fine motor skills, speech or any sound for that matter, and some of his gross motor skills. Still, everyday we are thankful for what we did get back and we are thankful that his life is positive and full of joy. Please please keep talking and sharing. Nobody knows how far anyone’s child can go in this life, but we do know if we do nothing, they go nowhere.
Beautifully written and inspiring.
I want to make the point that I often get asked by parents if their child will make a full recovery. God knows that a full recovery is what we all want. Being afraid to try Biomed unless you have a guarantee of full recovery is a lot like not teaching your child to read because you aren’t assured they are going to get into Harvard.
You’re right, Savannah was what I call a “peek a boo” kid for a long time. She had good weeks and not so good weeks. And I fiddled around doing research and trying to convince my husband who is the child of two medical professionals that Biomed was not going to hurt her.
And then in the last four months before we started chelation I saw her falling further and further off the cliff. I quit researching and trying to convince anyone. I told myself no self respecting mother stands by while their child is drowning and debates the best way to pull them out of the lake.
You are one of the original Mother Warriors to whom I owe much. Lucky boy, your son.