The Trip

My Aunt called me. It had been 20 years. She called me and we spoke for a couple of hours, plus. A beautiful conversation, the kind that defined family – A family in which I dream to know. Visiting them, one time, a long, long time ago….in wilds of Oregon where they owned property. I ate their apple pancakes and played in the treehouse amongst the frogs and toads…..

My dreams, the simple dreams of a new Mother, verified by our “life architect” for a Father. A Mother with two sons, one being healthy and viable to todays standards, another diagnosed on the Autism Spectrum. Are these typical dreams? No such thing. So sorry, not today. Now, or well….ever. With only 50 percent of our children enjoying good health, please, don’t be surprised.

In the day when we received a diagnosis, the old studies on Autism correlated engineering genius with late talking children. My eldest dutifully verifies this “research”. His grandmother a scientist, grandfather previously an engineer with the Boeing Corporation, plus multiple bonus points for his great-uncle, the true born renown rocket-scientist who worked with, and for NASA.

After our eldest was diagnosed on the autism spectrum, moderately affected, normal “dreams” and “typical” rules were ditched. We were now carving out a NEW normal for our family and emerging adult son on the spectrum, that includes all other families in the same circumstances.

Henceforth “The Astronaut Analogy” aka my son, James Frye, diagnosed on the Autism Spectrum so many years ago.

Check out this video on YouTube:

~ Wendy Frye

“…And these children
that you spit on
as they try to change their worlds
are immune to your consultations.
They’re quite aware
of what they’re going through…”
― David Bowie

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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.

***DISCLAIMER***

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.

Sensory therapies:

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.

Good Reads:

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

Autism Mom 1

All Mothers are amazing. Mothers of abled and disabled children are again, amazing. Mothers who have been tapped to care for a child with medical, emotional, developmental or other challenges are downright amazing.

So, why Autism? Why are the Mothers of autistic children just a few degrees different from the rest? What happens inside the Mothers of children diagnosed on the Spectrum – (Fathers too, but that’s another blog) that makes us who we are?

It is really difficult to explain what is is like to be the Mother of a child, a beautiful baby boy or girl, who was once well, happy, healthy and alert. The Mother, who after going to a routine medical checkup, comes home and watches the whole life they knew go up in flames.

Each of us Autism Moms are singular and distinct. Just like our child’s level of involvement on the Spectrum. Each Mom has different levels of tolerance for ignorance. Group us Moms together we form a category that is so very, very different from the rest.

We love our children. We love each of them with such an intense degree of compassion that we find the endorphins EVERYDAY to “lift the car off the child”. If you have to know, there is not official “cause” of Autism. You can’t catch it. Your child is usually identified after they are well for a couple of years and then, all of a sudden, they are not well. They are autistic. What happened? Here in this confusion, your child is diagnosed Autistic, there is no known cause, but you are supposed to understand? What HAPPENED! (Again, another blog…)

So, why are Autism Mom’s different? I will attempt to explain by what we are known to do for our children:

We humbly hand out cards on airplanes that explain our child has Autism, so even though they look “normal”, they might not act typically. We are sorry for your inconvenience. We are trying to cope with the weight of the world on our shoulders. When the plane is delayed and our child is melting down it is nothing like that spoilt toddler in the supermarket who’s pissed they aren’t getting their way. This is a full on, panicked little person who has no control over their bodies or environment and they have waited the mandatory amount of time it was supposed to take. So, right here and right now are they loosing it because the plane is late. It does not matter if the CEO of the airline apologizes, it’s already too late. Please, just get the f***ing plane in the air and get us on our way!

We might get to go out sometimes as a family, early in the afternoon, to a buffet so we can take some time helping our child learn how to scoop their own macaroni and cheese onto their plate. It is a hand over hand lesson. We are the ones you grow very impatient with having to wait for. Our children may mistakenly land their fork or fist into the bowl of food. You are disgusted, and we are just trying to keep things moving so no one looses it, throws a fit, melts down, takes off their clothes, screams bloody murder, or throws a knife in your back. We are silently celebrating this enormously tiny victory getting through the buffet line, managing the plates, finishing the meal and paying our check. We seriously don’t care that we paid for ourselves but didn’t eat – and if the wait person was understanding he/she would receive a gracious tip thanking them sincerely for their trouble.

We are the ones who don’t get your need to dig yourself. Gel toe nails, really? At certain times of our lives, we are lucky to have combed our hair and put on deodorant. Even more, we really are happy for your “typicalness” and hope you keep sharing stories about your families with us even though we don’t always possess the same type of memories with ours. But please know, most therapies are not paid for by our insurance company so we’ve paid for them ourselves. Those therapies have bankrupted us. We have to pre-pay what you are saving in retirement to regain the health of our child. We are good with it and can’t imagine being so selfish not to do so. But again, gel toe nails, really?

We are the ones who push medical professionals to the brink with our endless questions, challenges, and absolute need to research our own answers before we see you. We are just making sure you know what you are doing. We sense a doctor who graduated with a C average and will not waste time with ignorance in the exam room. Please know, you are just a tool in our pocket, period.

We have studied medical journals, dictionaries, articles, books, styles and procedures. We now know what happened and we are trying to wrap our brains around what it will take to mend our own child. We will find someone to help us and someone who can handle us knowing “too much”. Do not preach to us. It is useless because we are stronger and will prevail your opinion, every time.

We compound our own vitamins. We sneak supplements in our children’s food and drinks. They may not swallow pills, so we will mix compounds with grape juice or root beer, put additives in their bathwater, rub oils in their skin…whatever it takes to deliver the nutrients they need to be physically well.

We look at every type of healing method. Eastern, Western, Native American, Ayurvedic, Holistic, and Integrative medicine – we want to know it, understand it and maybe even utilize it with our child.

We are the ones who explained the whole phenolic sulfotransferase deficiency with the anesthesiologist who went on to STILL administer the maximum damn drug dose. That lame move landed our kid in the ICU for three days instead of the outpatient procedure we signed up for. We are super pissed and will go across the bed and think nothing of throttling Dr. “Dumbass” because we had warned that SOB. “WHAT WERE YOU THINKING!”.

We are tired and We are stressed. We are passive on the things that aren’t circling our airport, ready to land more problems in our lives. We may not get all the subtle nuances of society – mostly because we don’t have the energy to care. But seriously, did you just say “Retard”? We aren’t stupid, just absorbed in what matters to us most. We are good people. But if you say “Retard” one more time…..do you really want to be the person we have license to take our stress out on? No, you don’t. Because if we actually gave ourselves permission to take our stress out on someone so ignorant……Yikes!

So please, be kind. If you know a Mom with a child on the Spectrum, know this…..she is doing everything she can. No one is perfect, especially her. She will not forgive herself long enough to realize she doesn’t have to be perfect – and she knows she will never stop trying to be so damn …(perfect).

“Never, ever, ever give up!” Winston Churchill

~ Wendy Frye

Man Bag

Growing up, our youngest son radiated happiness like light from the sun. Always curious, engaging, and full of energy was he. A deep mirthful laugh, dimples on his cheeks, and eyes that closed when he smiled.

He loved his big brother. He followed brother all over the house, darting in and out of rooms, always watchful of us all – but especially of his big brother. They shared bath time, dinner time, nap time and eventually therapy time. Our oldest had been diagnosed on the Spectrum when our youngest son was one and a half years old. That’s when our days became full of appointments; speech therapy, physical therapy, occupational therapy, doctors, and on and on. This was our normal.

Somewhere along the way, our youngest son became a serial hoarder. Distressed children do act out in all kinds of ways, and even with the most loving intentions, our house was like a battlefield trying to save our eldest son from the void.

First, he started piling toys in the corner of his room. Next, we noticed he was packing random things around in his underwear. We would look up to the top of the stairs, call his name, he’d fly around the corner (always cheerful!) and say “Hello!” There he would be, only in his Batman UnderRoos, packing an entire toy chest in his pants, with the downstairs TV remote sticking out the back! He was like a little squirrel, collecting goodies and stashing them for later. He would roam around the entire house taking any and everything. Whoa, whoa, whoa! This was out of control.

We sat him down, calmed ourselves, and had a lengthy discussion letting him know that his underwear were not to be used as hoarding device. My husband offered to take him to the shopping mall in the morning to find the perfect “Man Bag”. In the interim he had use of a small athletic bag to replace his “personal pockets”. We were talking so far over his head – just like adult humor in a Disney movie. My husband and I were practically in tears trying to keep our serious faces in place. “Now, give me back the remote, and let’s get ready for bed!”

Ten minutes later, round two tuck-in time, found us back in our youngest son’s room. Where did he go now? We heard a little pathetic cry coming from his closet. Our youngest son had managed to zip himself inside the athletic bag. Hoarder to Houdini in ten minutes flat. We had to be the worst parents in the world.

We didn’t get him the Man Bag. Couldn’t fight nature this time. In the end, we let him channel the way of the kangaroo, his own personal spirit guide. ~ Wendy Frye

(Truth? we surrendered, beat at our own game like a couple of sissy girls.)