I am one of “THOSE Moms”. The mom who was pushed (slammed) into a corner with a diagnosis of Autism for my child. The diagnosis period for our son was dragged out over his second year and into the third – needlessly, on a step system (Global Developmental Disorder, PDD-NOS, etc.) to finally land on ASD, moderately affected. Since he was meeting major milestones, it wasn’t necessary to address his regressive language development – so we were told. This was 1998, putting this into perspective, the book Special Diets for Special Kids by Lisa Lewis, PhD, came out ONE month before our son’s diagnosis.
“Mrs. Frye, there’s no known cause for your sons developmental disabilities, and no known cure for him….just get him through special education and get him ready for an institution. He will have a “qualified” future living in a group home. P.S. Mrs. Frye, can we take some blood for genetic research before you leave?”
Driving 300 miles home, in our mini-van, I wondered what does this “Autism” thing really mean and why am I so scared? Arriving late in the evening, we instantly (instinctively?) ran downstairs and searched “Autism Cure” on Google. (I’m sure anyone reading this article can imagine how heart wrenching that evening was.) We actively mourned for about 24 hours and then got extremely pissed, and formed our anger into action. What action during what I so lovingly call “the lost decade”? The good stuff, biomedical interventions as well as sensory therapies – old school style! We were shooting from the hip – and not taking it from anyone wearing a white coat. Does any of this sound familiar?
First, my husband and I will never be convinced that our previously healthy, happy boy was born this way. He was well and over a period of time started slipping deeper and deeper into poor health. We started asking questions during the last two years before “the final diagnosis”. Those questions were answered with shrugs and denials for treatments. We appealed our insurance company’s decision – complete with a dog and pony show….it was miserable, looking back. Absolutely and certifiably 100% miserable.
Ultimately, WE made THE executive decision as his parents DECIDING that WE would do to get him back to healthy BEFORE concluding any lifelong, abrupt diagnostic ending for our boy, THANK YOU VERY MUCH! To this day, that was the BEST decision WE ever made. Our family has coined the phrase – “Juggling the Astronaut”. That’s what we did, juggled our son who was attached at the end of a cord, a lifeline if you will, through space and time to arrive here, back with us.
I would like to share here some of our home-grown (but not so random) therapies, supplements, processes and procedures that I researched and implemented with my young ASD son. By trial and error, directly or indirectly these things WORKED and helped him REGAIN some of his health and to ultimately grow into the HEALTHIER and HAPPIER young man he is today.
This is not health advice (blah, blah, blah). I am not a licensed health professional, so just like everything we do for our kids, please research and determine if any of this has value to your family and children. And remember this was the 1990’s, there just wasn’t the support available with only 1 in 10,000 families with Autism in common. So take all this with a grain of salt or a glass of wine, and thank all that is good and holy that we have a better understanding of how to heal our children.
Where did we start?
First item on the agenda was to tackle was our son’s severe allergies that presented as nasal congestion, plugged ears, and horrible eczema. Our baby boys’ immune system was out to lunch. We did not relish giving him prescription and/or over the counter anti-histamines while his nervous system was struggling to develop. So we looked for viable alternatives. The best thing EVER for scaling back inflammation and slowing down the inflammatory response was MSM. I read the book, The Miracle of MSM by Stanley W. Jacob, MD, and never went back to conventional allergy meds. Over time his skin condition improved, sinuses dried up, asthma abated and he felt better than he had in a long time. The BIG plus? – We were also supplementing bio available sulfur to aid his liver function around his phenolic sulfatase deficiency.
Best bath soak in the world: Queen Helene’s Natural Mineral Bath Salts in Lavender. This gem of a product has been around for decades and contains not only magnesium sulfate but real sulfur, lithium and natural lavender oil. Whoo-hoo! My son was not swallowing pills at the time so everything became a topical application or ground up and swallowed in a beverage. When I smelt the real “brimstone and fire” smell of sulfur in the bathroom I was thrilled! It is one more arrow in my quiver to treat his phenol sulfotransferase deficiency AND eczema. The lavender oil has antiseptic properties and the lithium? Naturally occurring lithium is an excellent mood stabilizer. After his bath my son was somewhat relaxed and ready for bed! Thankfully this product is still in production, stocked in nearly every drug store across America.
My son wouldn’t (or maybe couldn’t) swallow pills for the longest time. As a work-around we resorted to “cereal bottles”. We cut the nipple off midway, filled the bottle with warm rice cereal plus apple juice to conceal whatever powdered vitamins and supplements we could include in his snack. I used a dedicated coffee grinder for pulverizing – and still do while compounding his vitamins to this day. Who really cared about weaning a 3 ½ year old off a bottle when it was the only bridge to health available? Not us.
We spent our tax return on what had to be the last vial of Secretin on the market – had it compounded by a pharmacy with DMSO as a carrier. It really did help our son. As a replacement I was able to locate and supplement freeze-dried porcine duodenum to aid his digestive health. There are several products still readily available as alternative medicine.
Best “quick “education:
The Institutes for the Achievement of Human Potential, Brain Injured Child Course. I learned enough in that one week parent program to move forward and choose sensory therapies that made a serious and positive impact on my son’s discombobulated nervous system.
Berard Auditory Integration Training. We found Marcie, a therapist, who was travelling through different cities administrating the training. It was thrilling to see the documented improvement in the quality of sound my son was able to hear.
Sensory Learning Program: Mary Bolles method. We spent 12 days in a town about an hour from where we live to take the program. While I learned at the Institutes about brain injury and the amount of effort that it takes to reprogram a previously healthy brain, I had to work full-time and couldn’t implement the full days of therapy necessary to help my son. But with the Sensory Learning Program all modalities of sensory input is implemented within each session. My son simply lay on a table that rotated to stimulate his vestibular system. At the same time there are flashing colored lights on a random cycle to stimulate his visual pathway, all while listening with headphones to chopped up music as in AIT. This was the best therapy EVER. Surprisingly, he was a willing participant. I worried about over stimulating him – but he actually enjoyed the process.
Binaural Beat Brainwave CDs from Hemi-Sync, a Monroe Product: These are outstanding works of art for deep brain stimulation via the auditory pathway – a different take on AIT. I catch my son using these products to this day.
I found many helpful books at a local used book store. Treasures included a pediatric gastrointestinal medical book from the UK dating from the ‘60’s. Also, another favorite of mine is Let’s Get Well by Adelle Davis – plain and sensible information.
The Singin’ Pole is a good read by Doris Wilson Adams – I met Mrs. Adams in person doing a signing of her book. Her story is our story too – just decades older. The measles/mumps correlation made by the author and her son was very interesting……
Favorite whole food supplements:
I want to offer my favorite nutritional trick for the picky eaters out there. Chia seeds aka salvia seeds. Those seeds have some of the most magnificent nutritional elements I have ever run across. Rich in good fats, high fiber and protein, excellent for gluten free cooking – it is a powerhouse of goodness! In our case, my son really likes pizza. So, to clean up his diet, I make homemade tomato sauce. For a healthy addendum; I grind up and toss in carrots, broccoli and cauliflower as well as a ton of garlic as well as chia “gel”. When soaked in water, chia seeds form a dense gelatin like substance that is slightly sweet – which is perfect to put into the pizza sauce. He doesn’t even know – and there is no telltale evidence he can find.
And lastly, I’m growing Sea-buckthorn plants in my garden. The oil is superior for sensitive skin. The nutritional properties are renowned and all health benefits cross over to the health needs of our son. There are too many benefits to list – so please, research it, apply it, eat it, juice it and maybe even grow it!
I haven’t attended an AutismOne conference, yet – but certainly plan on it next year. I still have so much to learn – and to this day lament what we could have tried to further assist our son with his health. What a feeling it has to be with so many people in one place, with the same passion to heal our children.
This fall my son and I will be on our way to college. He graduated high school this year, all the while he was in special education – he was even awarded the Superintendents medal of achievement. The astronaut in him is still there, he flies high in his mind to places we can only imagine. Looking back we know his success is this: he truly lives with passion, perusing an art certificate, to ultimately create his own mark on this world.
~ Wendy Frye
“Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work; we must all work, to make the world worthy of its children.” ~ Pablo Picasso 1881 – 1973