Grown

I am the proud mother of two sons. Both adults now – one a Senior in High School and the eldest, diagnosed on the autism spectrum so long ago that it really doesn’t matter.

The burdens of raising children in this day and age are quite remarkable. It has to be said with todays technology we can loose touch with each other in a home more often than keeping in touch with children being sucked into the vortex of social media. Never looking up from the dinner table is not my idea of time well spent.

Since retiring early from a sparkling career to care for my eldest, we’ve finally hit a time that we could come together as more of a family. With the sacrifices of raising a special needs child, i.e. the monetary outlay, abbreviated social life, appointments and therapies, it can be said that our earlier years were a blur and nothing to be envied.

So, now, when it’s actually legal for me to run away (oh ya, I won’t lie, it’s not a thought but a fantasy) we have pulled in and are actually enjoying each other. Call it upside-down and backwards – but we are now living forward.

I never got to (had to) drive either of my sons to a soccer game. I’ll leave that pleasure to other parents. Neither of my sons played sports, one couldn’t and the other wouldn’t. While we missed out on all the extra-curricular activities I hear other parents bitch about (no time to themselves, the expense, the coaches, the juggling of a calendar) its all good.

But hey. I can’t even describe how wonderful it is to be dragged out of bed way too early on a Saturday morning by my eldest, The Artist!, who wants to show off his newest graphic art work. Always a surprise – this man is going places. Need more coffee on those mornings.

Or, watching my youngest son, also technically an adult, gain success at school. He’s growing outward and finally enjoying unique activities that appeal to him. Ecentric, smart, shall I say dapper? We love going to thrift stores to score another vintage pair of jeans, or a Pendleton wool flannel to wear overseas when he visits Europe this spring.

Who else can claim that even though the new eclectic movie by Wes Anderson “The Grand Budapest Hotel” isn’t showing in our city, yet, still holds enough interest that we will be re-creating their signature confection this weekend. Why, that would be me – any my youngest! This little sumptuous ditty requires a trip to the farmers market for the best cream available plus a run to the local german import store for the finest chocolate from Bavaria. “Courtesan Au Chocolate” – on the menu. And no, I’m not sharing.

Tonight, we’ve already planned whats for dinner. I’ve gathered up some great nibbles and drinks to watch the next episode of “The Vikings”…one of our favorite historical shows – together. We four Fryes.

I am lucky. Twenty five years this July, married to the same great guy, two adult sons who are finding success in their own way….with some tasty treats along the way. And even though, deep in our hearts, we would have preferred a different outcome than being lifetime caregivers…..we are still miles ahead when it comes to appreciating family. And now, finally coming to a time when we feel a little more normal than not as a family. Our little, teeny tiny, family.

(Oh, I should add the tag-line about the two horrible little white dogs count around here too.)

Enjoy the day! ~ Wendy Frye

“Everybody thought I was a bit of an eccentric for wanting to be out there looking at the stars, but I still do.” ~ Brian May

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This article ran on wwww.ageofautism.com – complete with video!

http://www.ageofautism.com/2014/01/take-time-to-dream-and-live.html

We were well into our parenting years the first time we took a real break from our “unique” routine. Our way of life, with autism in the home….well, lets just say it was a rarity to move in a group LET alone consider just WHAT it would take to achieve one of America’s finest family pastimes – taking a vacation.

Our eldest son, diagnosed on the autism spectrum at the age of 3 1/2 years old, was making measurable progress. He found his voice in his 8th year – and was being released from physical and occupational therapies at school. Now, I don’t think I need to detail the herculean efforts poured into this young man to get to this place – or feel bad about the $90,000 outlay. We took personal debt (aka credit cards) to a whole different level. But Man! Oh! Man! we had finally made it to a positive, measurable milestone. What a perfect time to pause, take a honeymoon from all the therapies per se, and quickly celebrate a little bit of progress.

It was our last purchase made on the last line of credit we had available – a trip for four to Disneyland. And was it ever worth every single penny PLUS interest, fees and the stamps to mail in payments! Well before Mickey Mouse got pissed and quit handing out VIP passes to families who could use the extra time and assistance, we were able to secure that very golden ticket to fast-tracking the park attractions. While I had to physically force my eldest son to stay with me on the first ride (yep, that was me manhandling my son – don’t judge unless you live the life, friend) soon after that, he was hooked. We finished 16 attractions that first day, going on to have a delightful dinner in the French Quarter of the park and ultimately enjoying the best vacation of our lives.

James, who turned 20 this January, went on to complete his education. And now, as with all things Autism, we’ve had to change up our family plans to assist him in his chosen career, as an artist. We are now knee deep in Special Needs Trusts, Business Plans, Vocational Rehab, Employment Support, Job Studies, and on and on…..

(Heavy sign here)

If there was one thing I regret out loud, it’s not remembering to look back and reflect more often. In the relentless pursuit of recovery, the sheer angst of being a parent helpless to ever understand what “normal” family life is, thats when and where we missed it. We simply missed stopping to turn back to GAZE at the amazing accomplishments of a young man who was working harder than anyone to plant his flag. So, take pictures, lots and LOTS of pictures! Stop, pause and reflect every once in awhile, and go ahead, do it! Take a jump off the listing carousel we know as life, and give the sword a pull from the stone ~ you’ll never pry it loose unless you try.

“The soul never thinks without a picture.”
~Aristotle

Breaking Bad Ass

We like to have a beer or other adult beverage while watching the Seattle Seahawks play football. With our son on the autism spectrum since he was three, an adult now, there stands a hard line between beer and wine – and hard alcohol.

“Vodka!” He screams at the top of his lungs….”Yes, Vodka.” We, his dutiful but worn out parents confess. “It makes a delicious alternative when mixed with lemonade vs. a heavy beer.” We TRY to explain.

“It will lead to DOMESTIC VIOLENCE!” He vehemently proclaims. Daring to hope he understands and will choose to be rational like he usually is……we headed down to watch the game. With the vodka drinks.

Ever the comedian, and dramatic as all get out, our “not so sold” adult son hears us from his room yelling at the television, cheering on Russell Wilson the the team after a very solid play. The stadium in Seattle is rocking and everyone is knocking. Except our son.

“Thats IT!” “You are fighting and it’s because of the VODKA!”

We yell upstairs to him that we really are not fighting….we are cheering on our team. No go. “I’M CALLING 911 NOW!” Oh shit. He does have his cell phone fully charged, in his room, on the night stand at all times.

We rush up the stairs. In full boxer short glory he’s taken the “God Forsaken Poison!” from the fridge (sitting next to the apple beer) and threw it out the back door almost to the neighbors yard.

“I’m DIALING!”

“NOW!”

Mind you, we suburban dwellers, affected by the virtual tragedy of autism, i.e. underemployed, lifetime caretakers, double duty chefs, and on and on. Deserve. A. Drink. Especially at this very moment. So, in his room, hand poised to press send on his cell he smirks…..

Yes, I called him a rat bastard. Yes, I meant it. No, I’m a horrible mother sometimes. Yes, he had us. Yes, he knew it.

Yes, we dumped the bottle.

Yes, we had an apple beer instead.

This morning I approached my adult son on the spectrum. “Wanna go to the casino?”

Oh boy…..the new frontier.

“WHERE’S MY CELL PHONE!!!!!!”

(snicker) ~ Wendy Frye

“Spend some time this weekend on home improvement; improve your attitude toward your family.” ~ Bo Bennett

Slip

Having a young child with special needs tends to slow a family down. It takes time and bravery to pick and choose appropriate activities that can actually be accomplished, as well as enjoyable. Between therapies, school, doctor appointments, processes and procedures – there just comes a time when it is almost critical to recreate as a family.

Recreational activities, you know – the real ones most families enjoy at their leisure, usually after breakfast lasting ’til before dinner. Likely culprits include sledding, skiing, biking, or simply taking a walk. For families like mine, recreation used to fall under “Too Complicated To Conceive”, especially when our eldest, the one diagnosed on the Autism Spectrum, was very young.

Our family sled has seen only 5 minutes of use. The Cross Country skis? Mothballed under the porch. Camping equipment, utilized for less than 24 hours. Multiple bikes have been sold at garage sales, never knowing the pavement after Christmas morning. The horse, tack and saddle were sold after an anaphylaxis reaction at the barn. Considering our track record, it is justifiably deflating.

Well, when our disability services caseworker suggested joining the local, new and nearby YMCA, let’s just say I tried not to laugh out loud for very long. It was a sincere appeal, passes provided with the hope of a little family fun. Okay, I surrendered, again.

For this, in the middle of winter, we tried to prepare. Anticipating every item necessary, for we were going to be swimming inside when it’s 20 below outside. Lugging in a preposterous amount of gear, we waddled ourselves to the pool area. THANKFULLY, a family dressing room provided an adequate battle ground to prepare for poolside war.

WOW! Not just one pool, but two, complete with a spiral SLIDE! Maybe this won’t be too bad. I thought about getting comfortable ( actually – as comfortable as possible in a bathing suit, out in public, wearing the palest version of pale!). Husband took one child, I took the other and we split up. We figured we needed even odds if we were going to kill, blind or maim one or both of the children. I know, I know ~ but you’d be pessimistic too!

Hauling my eldest son to the top of the ladder, the plan was to jump in and go big. To the top! The top of the spiral water slide! My son on the spectrum was, well, suffice to say he was a little bit apprehensive. Me, I have a “dare-the-devil” gene in me, somewhere. Taking him down, like a wrestler, to sit on my lap was my only choice. There was no turning back to try going back down the stairs like a wussy.

Masking his terrorized screams with my screaming laughter at the sheer delight of going SOOOOO fast – we made it to the bottom! Awesome, we did it! I pulled him out of the water and was greeted with a big, watery smile! My son, he too loved it! “Let’s do it again!” we would say in unison!

After two many more trips down, even taking my youngest with us once (Dad at the bottom of the slide for potential damage control) we seemingly (and suddenly) hit our limit. While having more fun than is legal, we may have pushed the eldest a little too long. Exiting the pool, turning to the left, he lost his dinner in the lap pool.

There was no disguising it, he had done the unthinkable. “Will everyone please exit the lap pool immediately for maintenance.” was heard THREE TIMES over the intercom. The signs were placed by the walkway stating the two hour closure to shock the pool. Sullenly, we made our way back to the dressing room and ultimately home.

Poor kid, he was young, overwhelmed, over-stimulated, and unable to control his reaction. Worst parents in the world over here. Considering the trauma, we thought for sure it was going to be another wasted investment for an activity we couldn’t manage. But we were wrong. Excitedly, and not too late after, came the request to return to the pool. Well then, knowing our limits now, calculating the amount of time for proper digestion prior to arrival, we headed back to the scene of the crime. And executed several more trips down the slide, laughing like hyenas and cackling like fools. We, as a family of four, finally found recreation.

“Let’s GO!” ~ Wendy Frye

Mincemeat – reposted!

We have a rule in our house: We are the nicest to each other because we should be.

From time to time I reach down, pull out my worn out soap-box, step up and preach to my children about the people out “there” in the world we live in. The people you meet who would willingly punch you in the throat to get ahead. “Let those persons have at it” I tell them, in the end you won’t want to know them anyway. While choosing how you interact with other people, remember to always consider your own family first. We will always be stuck with each other, get used to it, so be nice. I then require them to re-commit to the “team”. The family “team” who WILL ACT CIVILLY, TREAT EACH OTHER WITH RESPECT, AND REMEMBER TO USE THEIR MANNERS WITH EACH OTHER! “What?!!” “Why are we having this same conversation again……MOM!” My teen-aged boys cry out in unison. “Well, let me go down my current list of reasons why in sequential order.”

– Telling your autistic (but not even close to helpless) brother that the magenta colored golf shirt he picked out for our vacation to San Francisco will make him look “gay”, is unacceptable. Gay people wear purple and straight people wear purple. Don’t be judgey of anyone.

– Snapping at each other (semi-forcefully) while folding laundry over which channel to watch on the television is complete lunacy. On that perfect day the window was open and the neighbors heard you bickering like holler monkeys. Not cool.

– Punishing your parents for wanting to take you to lunch after shopping as a family JUST because you couldn’t agree on a restaurant after 25 minutes is unacceptable. It’s called deferring to each other from time to time, gentleman. Go look it up.

– Launching air squadrons when either of you enter the kitchen just to protect your soda, ice cream or (insert here) from the other one this summer will not continue. And the Nerf gun your Dad brought home? I buried it in my garden.

– Remember, the dogs are family too. If you let them out, you wait for them to come back in. Standing on the deck, again bellowing like a holler monkey, wearing only boxer shorts and a t-shirt is not okay. You are hurting their feelings yelling at them in that tone – and use patience!
Sometimes they need a little privacy too.

Lastly, in general, the snapper-fish answers to anyone who asks a question will end. Automatically responding “no” is lame. Please try harder in the future to craft your answers and use your words, please. As punishment, each takes a turn going all day without referring to themselves in first person. Think about that, all day without starting a sentence with the word “I”. The mental fatigue will be epic. But you will be fine. “Are we good now?”. “YES MOTHER!”

I retired my soapbox for now – a little wary……..knowing full well that the potential to be submarined by my two children and just as insolent husband is lurking around any corner. Seriously, is turnabout always fair play? Maybe, maybe not.

Oh man, I am doomed. ~ Wendy Frye

“Counsel woven into the fabric of real life is wisdom.” Walter Benjamin

Wiz

One absolutely spectacular benefit working within the banking industry is a certain pretend holiday, Columbus Day. Oh yeah, falling on a Monday in October while the kids are back in school, husbands at work….Columbus Day HAS to be the best, employer paid holiday EVER known in the United Sates of America.

A couple of years ago, while employed with a local credit union, another Columbus Day came along. The time was ripe. My son on the Spectrum had shown me twice the venue he wanted to visit. His younger brother, an absolute super-hero, was good with the idea. So, we sprang it on him. Booked an overnight flight to Vegas (Baby!) to visit the unknown-to-most Pinball Hall of Fame!

You know the song, Pinball Wizard. Well, the guy with late onset autism, he relates. The self proclaimed “gamer” regressed, technologically speaking, into loving pinball. So hey, just try finding an operating machine thats not in a dive bar or other establishment that discourages a 16 year old young man from living his passion. Not easy, any day of the week. But try we did. So with his research and discovery of the “Hall” lie the path that will lead us to pinball Nirvana.

Om. (Clang Clang!)

Within fifteen minutes of our arrival to Vegas, we were surrounded by two hundred plus pinball machines. All workable and playable, spanning from the oldest to the latest, WOW! Can you say sensory overload? “MOM!” “I need a quarter!” was the last I heard from him for the eight hour shift.

It really was my idea of idyllic, a wonderful way to spend a weekend with my son. Besides the “Hall” we went to the art showing at the Bellagio, ate crappy pizza, had dinner for breakfast and pillaged the arcade at our hotel resort.

Returning home exhausted at 2:00 in the morning, I drug it to work the next day and managed to play off that I hadn’t slept in 24 hours. Arriving home, ready to collapse, my eldest son yells for my attention from the basement. He’d found it, a new Nirvana – the Coin Operated Museum in San Francisco!

“When can we go!” ~ James Frye

“If some people didn’t tell you, you’d never know they’d been away on a vacation.” ~ Kin Hubbard

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Flip

These days, aging out of services for someone on the Autism Spectrum is a very real and unfortunate reality. My son, James, aged 18 and moderately affected, was able to vote in our presidential election this year. His father, my husband, and he went through the entire ballot and he made his own choices. We still laugh regarding his reaction that we were voting to legalize marijuana in our state. Flabbergasted! And sincerely ticked that it passed! It was awesome.

So, tell me, how is it that this capable young man, on the cusp of a tsunami of younger individuals affected by Autism, just how is it that he can be marginalized when he is capable of a higher education? He votes. That’s an adult privilege. He was required to enroll in the Civil Service upon graduation. Why can’t he be admitted to college classes at the local community college? Well, yes, it will take some accommodation and understanding, but the key here is that he is CAPABLE.

The amount of heart in this young man to get to this point, well, indescribable. We, as a family, would never want to meet a other family on this path, unfortunately – with 1 in 36ish boys now affected…..its becoming an autism freeway.

Visualize:

Take a notebook. Draw a picture in the corner on page one. Next, on page two, draw a slightly altered image – carry on the next, and next (you get it) to create a cartoon book. Using your imagination in the same manner, imagine our life in a little book:

Two people fall in love.
Get Married.
Have fertility issues.
Two surgeries later, pregnant.
A Boy!
Born beautiful, well and happy.
Gets shots (5 at once).
Cries.
Develops severe eczema.
Take doctors advice.
Gets 18 month shots.
Second pregnancy.
Another gorgeous boy!
First son looses ground.
Gets really sick.
Suffers hearing loss.
Regresses language.
Very unhappy.
Withdrawn.
Doctors are certain he’s fine.
Make us wait until he’s three for intervention.
Go to local non-profit before he’s three because we know something is wrong and desperately need him evaluated.
The volunteer SLP recommends us seeing a neurologist.
Declines treatment.
Oh no!
Brain scans fine.
MRI perfect.
Little boy is too sick to believe.
Low body tone.
Gorgeous eyes loosing focus.
First diagnosis, global developmental delay.
He’s over 3 now, no early interventions available.
Second diagnosis PDD-NOS.
Allergies RAGE.
Becoming totally submarined in his illness.
Go to experts at the state university.
Give blood for genetic testing.
Handed the Autism diagnosis.
No hope.
No cause.
No cure.
Told to get ready to institutionalize at 18.
Fuck off.
Go home.
Google Autism.
Grieve for 24 hours.
Get angry.
Get motivated.
Get moving.
Enroll in special preschool.
Only 6 students in the district.
Allergies continue to rage.
Allergic to everything.
Severe dietary restrictions.
Visit health food store.
Clerk alerts on vaccines.
Study.
Get violently ill.
He stops eating.
Food Clinic.
Behaviorist.
She visits once, wants to tether him to his chair.
He’s sick, not defiant.
Fire behaviorist.
Every day – study.
Every day – do something to improve his health.
Go to an integrative doctor.
Treat underlying health issues.
PT.
OT.
ST.
A therapy a day for 5 years.
Talks more.
Gets stronger.
Grows up.
Healthier.
Becomes very sassy!
A little happier (not easy being him).
We still hope.
We imagine.
Starts taking bus to school.
Lets himself into house and stays alone.
Calls me on the phone when he’s home!
Growing.
Makes honor roll.
Survives being bullied.
Survives being harassed, barely.
Makes a few friends.
Has amazing sense of offbeat humor.
Loves music.
Loves to fly and go on vacation.
Allergies abate enough to get a beloved dog.
Get another beloved pet.
Discovers talent.
Becomes published artist.
Passes standardized testing.
Graduates high school with achievement awards.
The crowd roars on graduation day.
Has hope.
Has dreams.
Has a family who loves him.
Turns 18.
Wants to continue education.
Its another challenge.
Can’t stay home alone.
He’s lonely.
Mom retires.
Family is happier.
Still ready for secondary education……..

Now an adult son.

Time to quit?

No.

Time to change things.

Time to change the paradigm for him and the legion of his peers coming up who have expectations for acceptance and a place in this word.

Time to throw out the notebook.

I will be a devoted parent until I cannot, and that will be the day I die. ~ Wendy Frye

“People need motivation to do anything. I don’t think human beings learn anything without desperation.” ~ Jim Carrey

Wag

What a gorgeous string of days. Deepening into Fall, the morning air begins crisp changing to a gentle golden warmth for our personal afternoon enjoyment. The best time of the year, in my opinion, to get out – before the deepening of the season turns into the snows that are sure to come.

Dawning the bling known as her harness, the Bichon Frise struts herself excitedly down the sidewalk. I get to come along. Shes a stunner, but she hardly knows it. As friendly as they come, she’s only looking to make another friend – a friend out of any bird, dog, cat, human or bug. This fuzzy little girl has never met a stranger.

With Autism in the family, discipline is considered a four letter word. It’s difficult to punish behaviors, odd and unleveled as they come, since it is considered the first form of communication. Observation and tolerance leads into a word, statement and ultimately a sentence to share a thought, passion or even irritation with a person on the Spectrum.

The dogs grew in the same home – and have inherited a bevy of “abject behaviors” that escalate the moment she moves herself out the front door with that certain saucy swagger that only a Bichon possesses.

Delicious smells coupled with delirious freedoms await the very recipient of the “Pretty Girl Walk”. Shortly out the door we start with a full on “Jesus Christ Pose”. Nose down, legs straight out – for what can only be known as a “Full Body Sniff.” (I sense you can visualize my nemesis in action, no?) I execute the first “heliport” lift from the top of her harness of the day.

She jogs, I waddle. We argue repeatedly. The poor man coming our direction? He was almost taken down by her attentions. He said shes a good girl, cute too while I heliport her, again, and turn the corner towards home.

Awesome! Here comes the Quail trying to make a run across the street! “Mom, Mom, MOMMMMMMMM!!! Let’s GO! GO! GOOD LORD MOM MOVE IT, MOVE IT, MOVE IT!!!!!!!”

Faltering on the drag of the leash, I trip, fall and now I am in full “Jesus Christ Pose” facedown on the turf. Swearing towards erectness she, not so patiently, waits. I turn again to limp home. Beautiful. Another classic Annie move. She darts, I drift and die.

Arriving home we meet up with Lilly, a shadow in size and personality to Annie. Flinging her bling, the big girl turns and smiles, yes SMILES after us. She so knows she possesses the worst behaviors imaginable. She knows she struts and brags. She smells kitchen scents through the windows to the outside. She senses when someone is thinking of going to the refrigerator. We are not in control of our home, Annie is.

With a heavy sigh I turn to Lilly. “Tomorrow little one. Tomorrow we will win a battle, together.”
We look to Annie and I swear, I swear it to my grave….she winked back at us. That saucy little wench, she winked, turned and sauntered off. “Annie!” ~ Wendy Frye

“Don’t accept your dog’s admiration as conclusive evidence that you are wonderful.” ~ Ann Landers

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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

One Percent

When two people meet, date, fall in love and decide to move forward and get married – the union automatically has a 50% chance of dissolving before the end of the first five years. When you have a child with a disability, especially one like Autism, the odds are a whopping 99% that the marriage is doomed to be an epic failure. I believe that the amount of time taken from the core relationship while caring for a sick child, that leaves one of the two without time or attention – ultimately the whole thing just sputters and spins down the loo.

Eighteen years ago, my husband and I were the newest of the newest parents on the block. Our baby boy was five years in the making – complete with surgery, fertility processes and procedures with only a sliver of time to conceive – WOW, we had won that lottery, didn’t we babe? Netting a ten pound, four ounce baby boy – and he was beautiful!

We lived in a tiny little house on a hill in our city – and it was the middle of January. The snow had abated, our little family needed to leave the cabin for a bit of time in the wilds or someone was going to be sacrificed. And it wasn’t going to be the baby or cats. So we concocted a plan. It was a good plan, and we weren’t ready for anything specifically, just everything that might happen “out there”.

Anyone with young babies or smallish children in their life can agree that the sheer amount of GEAR required for such a speck of a person is, well, honestly absurd. But we did what most new parents do – hauled every gift, item or article perceived to be necessary anticipating any circumstance we might encounter “out there”. This was our first outing as a new family and we were going to the “mall” like other families to use that pram and/or the kangaroo sack baby holder thingy, and it was going to be FUN dammit!

Tension notching a little higher after changing our boys diaper two more times before leaving. Not just a wet diaper but a blow out – a change complete with new clothes. Good thing we had enough newborn outfits for a third world country all washed and organized neatly in the dresser drawers ready to go.

Our two door 4 x 4 was loaded and I actually managed to crawl into the backseat to sit next to our new baby boy. We buckled him in, strapped his seat down, piled blankets on him and both secretly wished the other would call off the expedition. No such luck. It was my piece to watch out, bark driving instructions, all while belying my own anxiety making me the WORST backseat driver in the world. My husband, not too kindly, told me to RELAX or he was going to have a heart attack and careen off the road – OMG not what I wanted to hear! I was shutting up now – yep….shutting the hell up so my husband, the father of my son, could drive to the mall without incident. LLLLONNNNNGGGGEEEEESSSSSTTTT ride, ever.

I watched our boy next to him in the backseat, anticipating the reality of his first outing. Sporting a cute little bear outfit, camera in hand – we were almost there. Timing is everything with a newborn, breastfeeding done within the last half hour, diapers changed (repeatedly) – the sleepy little guy should last a couple of hours before he needed anything, right? A couple of hours out of the house, long enough to call it an official day out, right?

Wrong. Oh, so very VERY wrong.

We made it all the way to the parking lot of the mall, but needed to change diapers again. (Seriously?) Another blow out – complete with new clothes…the whole shebang. And me? It was time to calm down (it was cold out there changing diapers!) and exit the vehicle. My husband had the pram ready to go……

A nursing mother hydrates, a lot. A new nursing mother who gained more weight than her doctor felt was reasonable, is re-learning her own parameters. We had a two door 4 wheel drive vehicle – and I was in the back. Our son was already placed in the pram. I had that STUPID kangaroo sack thingy around my neck. It tangled on the seat base and I was dragged back into the vehicle without the thrust available to me to launch out of the car. Boy, I had hydrated admirably that morning, the morning we were going to have our first family outing. While my husband and I shared uncontrollable laughter together, in and about my condition while wedged in the back of the car, I ultimately managed to pee my pants…….

What a day, one day in the many that have come since, dealing with Autism, trying to keep our unconquerable souls well fed with laughter and humor that abounds from such bizarre and absurd circumstances.

Happy Anniversary to my Husband! We are the other 1%, aren’t we? The 1% that make it to another side while raising two beautiful children – one with his heroic traits and genius appetite for knowledge, and the other an astronaut we’ve managed to juggle all these years. Happy First Anniversary on the other side of Autism, my dearest husband.

~ Wendy Frye

“A life spent making mistakes is not only more honorable, but more useful than a life spent doing nothing.” ~ George Bernard Shaw

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