One Moment

She had beautiful brown eyes that were quickly filling with tears as she was sitting down in the chair provided in front of my desk. Handing her a tissue box I tell her “I can help”. She quivered and explained that her boyfriend just left for Afghanistan and the rent is due on her apartment. He would transfer money but the lines of communication are long and complicated with no guarantee of getting a message through before the eviction notice is posted to the red door to their place.

With overdrawn accounts, looming bills and a fee for late payment coming in fast for her rent, she pulled in a heavy breath back and sighed. “I have my state check coming in next Tuesday, can you keep my accounts open ‘till then, even though I’m overdrawn and my overdraft privileges are suspended?”

“Yes, you are going to be fine with your accounts. We don’t even come close to suspending accounts until 45 days pass.” “What state check are you referring too?” I asked, noting the file. “My brother is autistic, I am his care provider, and my mom and I are all he has. I take care of him during the day.” She was now composed and stoic getting past her admission of need.

It was my turn now. “Your brother is autistic? So is my son.” It was instant recognition between us, two people who live with the difficult intricacies of having autism in the home. The two boys are the same age. We both had won the 1 in 10,000 lottery of the early 1990’s before the disorder reached the raging level of today of 1 in 88 or less. “Adrian. My brother’s name is Adrian.” She tells me wearing a watery smile. “James. Plain name James, he is my son.” I laugh back to her.

We discussed at length her living conditions with an AWOL boyfriend. How creepy her cheap apartment really was with people kicking in the door, police raids at 1:00 in the morning – and how she didn’t like to stay alone. She’s crying again. “Why can’t I just NOT be responsible for one simple minute? I can’t do this alone.” I tear up now too. “Because we just don’t have that option, do we?” We agreed that autism complicates reality; it drags you down and holds you hostage in a place that constantly reminds you of your responsibilities. Every. Single. Minute. Of. Every. Single. Day.

She left knowing the real me, and I was personally going to see her accounts were preserved, fees halted, complete with an invitation to call me if she needed ANYTHING. (Heavy sigh.)

Later in the day, I get a call that someone wants to see me. No tears this time, but a smiling brown-eyed young lady accompanied by her mother. “I wanted my mom to meet you…….” She decided that afternoon that she was cutting out of the lease, moving home and helping her brother with school. Mom and I were just as fast friends, laughing at the shared similarities of our boys, recognizing each other’s contributions and ultimately appreciating the fates that brought us together. An hour later we parted with hugs and promised to keep in touch, maybe getting the boys together for video games and such. “Sounds great, let’s make it a plan soon.”

My village, oh how it grows. ~ Wendy Frye

“Fate loves the fearless.” – James Russell Lowell

Admissions redux

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

The Turning Point redux

To remember the actual calendar date, you know, the chronological order of things printed out on pretty paper that records the events of our lives? Couldn’t and wouldn’t happen during what we call “The Lost Decade”.

So busy, so intense, (on any given day) that if my husband or I was hungry, we’d maybe pour a bowl of cereal. Typical enough, right? Well, how it worked in our house was that perhaps three days later we would again notice the bowl of cereal on the counter, exactly where we placed it, still full and uneaten. “Hey, I was hungry!” String a few of these days together, you create weeks, weeks create months and the months form years. Crazy. Hectic. Stressful. Ours.

I awoke, one exceptionally beautiful, bright morning, at 7:00 a.m. It was right after hearing the local steel plant whistle signaling the beginning of another workday. I drew in a sharp, deep breath and cried. I finally cried. I cried with the deepest sense of relief a soul can draw from. I took this breath straight from the bottom of the well of feelings we humans been given – straight from the maker of us all. I wept from the joyous realization that we, and by “we” I mean my family of four, turned the corner.

This day was one singular day when a sense of dire panic wasn’t buried in a headache behind the eyes. Tension you say? Like no other on earth. When the muscles between your shoulder blades fuse into one mass, so much tension your neck doesn’t exactly swivel like the young guys on the beach when a beautiful girl walks past. Nope, it’s past useless to pray for a good nights sleep and I stopped praying long before the night that led to this wonderful morning.

The blessed night before this wonderful morning when bittersweet Morpheus drew me down, down, and further down to the core of the place where a new beginning dwelt. A vivid dream starting from the bottom of the earth, under miles of dirt and debris, black with the void.

Early on in this dream, I was moving up, slowly. So very slowly, I was allowed to observe each earthen layer. It was as if I was being projected from the very middle of our earth all mortals call home – but it was different, personal, and not collective recollection.

Each layer represented every insult, expensive procedure, “fantasy of recovery”, damage and destruction inflicted, pain, and perjury that was dealt to our oldest son, we took it on as a family. It was the very essence of these “things” I was being projected through.

With understanding came increased speed – and seemingly in seconds – impossible speed – to suddenly break through the crust and land on the soiled surface we walk upon each and every day. I had arrived at this sight in my minds eye, this glorious sight, the very vision that instantly filled my lungs with the breath to cry in deep and utter relief.

On the surface, what did I see? Indescribable turquoise skies sitting on top of white washed, clay houses. I knew there had been a war in this village. A long battle involving egos, apathy and confusion. Foundations were cracked, walls had holes, rubble filled the streets. There was to be a rebuilding process. I was filled with HOPE – enough hope to begin forming a launchpad for the astronaut we’ve managed to juggle all the years during “The Lost Decade.”

“Within the neuronal valley of our souls dwells hope. Believing in hope is the catalyst for change. And it is true, just like the Beatles song, All You Need is Love.” ~Wendy Frye