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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

Decided

A decision made is only as good as the intention. Well, for this family, our priorities have shifted (again) to care and support our two children – one adult on the autism spectrum and his younger brother. Our younger son? Well, he’s one of the nicest people you will ever meet.

Our intention, distilled and all whittled down to the nub, is to clinically de-stress. De-stress, with a capital “D”. Autism creates a level of unholy stress unlike many different disabilities. Seizures, tantrums, anger, anxiety, and all the suffering is just like an acute case of ‘roid-rage. Not fun, not pretty, and sadly not so uncommon anymore.

We’ve been asked too many times over long set of years if and when he will get a job, or if he will ever live on his own. Most well intentioned inquires, but some delivered via a nasty comments with a condescending voice. Again, all are good questions – for any parent with young teenagers. Our family, and parenting choices, seem to be running parallel with one major difference. The absolute minimum of stress. Our sons will chase their dreams, especially the eldest, without undue stress.

Since late last Fall, around the time of the full moon of September, major changes have happened in our home. We’ve pared down our lives to live more simply and with purpose. Retiring from a toxic and competitive work environment, weeding out relationships that just don’t work and simply living has made it clear, stress is unnecessary, and just plain stupid.

Our eldest son, he suffers with anxiety by just being in this world. What we do know? He doesn’t HAVE to get a college diploma to create his art. No. He. Doesn’t. He wants a part-time job now. We explained that it is a way to be more independent – and that appeals to him. Lesson here: no one wins if he has to be subjected to the battle for college entrance. We concur. The college can win, for now. Our courses have become direct, home-school college. It’s been awesome.

The youngest? He is concentrating on school. As a fourth year German student, we’ve made sure to budget for the class trip to Germany next year. The anticipation is killing him, and motivating him to further his educational goals. He’s the one to watch, Mr. Dark Horse is who he is.

My husband is measuring his career to retirement. While he wishes it was any day now, it’s not too far off. And now, we dare to dream. We dream of moving to a vibrant, culturally enriched metropolis to further feed our adult son with the things that motivate his creative desires. Even our youngest makes mention of being close by and growing our family with his relationships. Wow, that is one of the finest compliments of my life to date.

The bottom line? Well, as humans, were we really designed to handle so much unnatural stress on or bodies and brains? Did the maker see us in his minds eye toiling over numbers, sales and devices making ourselves sick? Was it decreed someplace, other than in our own minds, that we have to settle for “good enough” yet still be unfulfilled? Is it against the law to toss those things that stand in our way of happiness? Is it a flagrant foul to grow a pair and do what you like in this world? No. It is a matter of getting out of your own way.

In the end, Mr. and Mrs. Jones, you can keep your things, your bigger home, your rut in the rat race – go ahead, knock yourselves out. Because I cannot recall ever seeing a U-Haul van behind a funeral Hearse.

Breathe deep, live well and remain intact.~ Wendy Frye

“Adversity is sometimes hard upon a man; but for one man who can stand prosperity, there are a hundred that will stand adversity.” ~ Elvis Presley

Feast

“I’m going grocery shopping, do you need more of your usual?” I asked my 17 year old son. “Oh GOD, no!”. My head snapped around, fast, eyes laser focused and left brow higher than Mr. Spock.

It all started the other day. A book came out of his backpack. An alternative guide to prescription medicine. It was four years new, checked out only one other time. I stopped breathing for a minute as he opened it up. Reading to me he decided to change a few things and manage his health a little differently.

Trying not to fall 6 feet to the floor, I stumbled into the kitchen. “So, what are you thinking?” He’s thinking, I can tell. This is my son who is a deep reader, deeper thinker who possesses more than a few brain cells to make thoughtful conclusions on most subjects sans his nutrient intake.

See, his older brother diagnosed on the autism spectrum almost 16 years ago, has been a constant recipient of biomedical interventions to improve his health and further his development. Vaccine injured, immune system blown, morbid allergy presentation – oh ya, it was an odyssey for all of us.

Despite the controversial spectacle in his own home, younger son controlled his world by rejecting any and all advice from his parents. He had control, we came to realize this. Dining on chicken nuggets and frozen fries, every day, 365 days, year over year – lets just say his health deteriorated.

He was past exhausted. Emaciated, with chronic heartburn, and assorted other symptoms – I insisted, he relented, and it was off to my integrative medical specialist. His tests showed something really wrong. Prescriptions, specialists, procedures and a really big hospital bill later proved to the young intellectual, unequivocally that he needed to change is evil ways.

He, not me, his father or brother – even the Bichons, who happen to eat better than he does, could change his thinking. Our son just needed to purchase the car to drive in his own change.

This morning, after coming downstairs, my super snazzy teal coffee pot I recently purchased was full of brewed green tea. Imported from the middle of China herself. Delicious! The counter was littered with yogurt cups, supplement bottles and a juice glass from breakfast.

“Mom.” “I read that the magnesium spray you make really can help me assimilate……….”

Welcome to the table my son. ~ Wendy Frye

“He was a bold man that first ate an oyster.” ~ Jonathan Swift

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Color

Today, nineteen years ago, our eldest son entered this world. Little did we realize how spectacularly unprepared we were for the task. But somehow along the way, we found our game and started to play.

He was a whopping 10 pounds 4 ounces, two weeks overdue and five years in the making. The greenest eyes to see the world on a spectrum where some colors are a little different shade, but just as beautiful. Even before his diagnosis of autism, we sensed he was going to be a huge change in our world, but really – we had no idea how much.

So James, Happy Birthday! Your family loves you soooooo much. May today bring you peace and continued hope for the brightest future imaginable.

Love,
Mom, Dad, Jon, Annie & Little Lilly Lou Lou too…….

“Every year on your birthday, you get a chance to start new.” ~ Sammy Hagar

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Muster

The gate-keeper claimed 30 years of experience in disability services while he eyed our son. Our son, who just happens to be a very talented collage of a person on the autism spectrum and a recent high school graduate.

After we were asked 15 times over 5 minutes in 15 different ways imaginable IF we paid our application fee. Then we were told by the gate-keeper that this particular gentleman possessed two friends. These alleged friends just happen to be a father and son, of whom are both doctors no less. And that these two “highly pedigreed friends” (cough, cough out the side of his face) just happen to have young grandson/son in common, who happens to be Autistic.

And we are supposed to care? Well, yes in general, we care very, very much – but we did not care at all for the insertion of this particular fact while in a meeting regarding our sons secondary education needs. The 5 x 5 office space was already too cramped and eye contact was going to get pretty limited. Right. About. Now.

“Well, my friend and his son, both who are DOCTORS, do NOT believe that vaccines cause Autism.” The gate-keeper proclaims to his ever deflating potential student.

He draws a loud breath and continues….”We will require a 3 hour reading and writing assessment.” For art classes – even labs. Awesome. Didn’t we cover our Achilles heel well enough over the 15 years of education, therapies, assessments, awards, grades, passing standardized testing, web-site, art submissions earning honors, even the high school ceramics teacher staying on one more year before retiring all because of the massively unique talent this particular college applicant possesses?

“But, if you haven’t paid that application fee, I fail to understand how he is already in our system.” Gate-keeper stated. “Because he earned that 4.0 grade when he attended a running start college class while in high school in industrial arts (yes, while in special education). AND, I understand it was a fairly complicated class.” Came my snarky retort. None of us in our family circle were confused anymore – our son was being assessed, not admitted, by a person with so much experience, BUT without even a tiny clue regarding Autism. Oh right! His pals were doctors, right!?! And, discussing vaccines during this meeting was critical and germaine to our sons college success, but of course! W. T. F.

While leaving we deliberately and mis-leadingly scheduled “the assessment test” and flagrantly walked past admissions without paying our application fee. But we were not defeated. Oh no, not us, not now and possibly never again. Because, as his parents, we knew there was no conceivable way we were going to subject this fine young man, who possesses the heart of a lion, to a situation in which he was going to fail. This is a person who understands everything, yet his disability lies in communication. He has adapted admirably to his disability within the creation of his own art. This art supports his need to communicate with the world what it is like to be a person with Autism.

During the drive home we cooled him down, explained that he needs only a certain set of skills in which to create his graphic art, and he was going to learn and expand those skills. Ended up he was somewhat relieved, knowing that he would not have to endure any class in which he was not highly interested in, just to earn a diploma. He’s paid enough dues. So we’ve looked around and soon found a better and more meaningful path for him.

Incubating his new skills, refining old ideas and thoughts that he so desperately wants to communicate with us all, The Astronaut is learning his new language in graphic arts. Assisted by his family and a soon to be elevated non-profit, this trip continues…….

“Go James!” ~ Your Mother, Wendy Frye

“A successful man is one who can lay a firm foundation with the bricks others have thrown at him.” ~ David Brinkley

http://www.jamesfryeartist.com

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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

Emergence

It was a serendipitous occasion, our son’s graduation day. Unlikely as it was early on in his student career, he qualified to graduate with his intended class of 2012. We had been hoping since pre-school that this day would come. Our oldest son, a bona-fide adult of 18 years of age, graduating and walking with his class – who 14 years prior was given the bleak diagnosis of Autism that dimmed his future to practically black.

The weather was atrocious – heavy black clouds and rain was forecast and being delivered. It was POURING outside. Donning his umbrella, the cap, gown and ceremonial medal – he and the rest of our family piled in the car to drive downtown to the arena. Anyone would be nervous, our son deserved to be too. Every peep, comment, music selection and conversation was monitored. We were to sit down, stay seated, be quiet, turn off the music and basically hold our breath all the way into town.

Today, we complied – it was a big day for the big guy. “We are late!”, “My gown will get wet!”, “What a shitty day!”, “The traffic is jammed!”, “We are still late!”, “Turn off that music!”, “Oh, it’s still raining, what a super SHITTY day!”, “There is no place to park!” And on and on and on it went……………….

Already, by 10:00 a.m., we were exhausted. Silently worrying that he would not be able to cope with the 7,000 people in the audience watching him and his class of 460+ graduates proceed during the ceremony that day. It could take only one air-horn blast and we were certain he would bolt – and so far that morning he couldn’t even cope with his family riding together in the car.

We found birds eye seats looking down on the procession of classmates entering the stage area to shake, pose and accept their diploma covers from the school district administration. “How did he do backstage?” I ask my husband. “Great! He’s nervous, but was following directions.” (Breathe in, breathe out, face forward, it will be fine…).

The day before, the Superintendent’s assistant phoned and asked if there was anything they could do to assist him in the processional. “Just don’t offer a hand to shake; it should save everyone an awkward moment.” Much appreciated advice. And that was all we could offer….no guarantees, just simple advice on how to handle this young man. Advice about how to handle the young man on the Autism Spectrum, who was graduating with the honor of his family and the others who know and love him the most in this world.

We saw our first born turn the curve and enter the staging area. With precision timing, the neighboring family in the stands applauded their son with a lone air horn. “Oh, beautiful, just bloody BEAUTIFUL!” My son turned to look up and locate the origin of the sound, saw us, smiled and moved his next notch forward. Well, okay. That was close. We are still in the game here. “James Frye” the orator announced. Go time! No worries, he simply walked over, took hold of his diploma, offered his hand back to the administrator and accepted his due. Walking down the stairway to his chair, he turned to us in the crowd and gave us a peace sign. While waiting, when he noticed us looking over to him in the chairs, we were awarded more peace signs and air jabs.

We sat through the procession, breathing a little easier, knowing what was coming – we had been warned. The Superintendent announced our son’s name again. This time he was called before the audience to have bestowed upon him the Superintendent’s Award of Achievement for overcoming obstacles and challenges during his school career. The crowd erupted in wild applause complete with foot stomping – what a moment! Making his way back to the stage, removing his cap, he welcomed his gold medal of achievement. No hand shake this time, but turning back to the crowd, victory arms in the air – WOW! What a moment in our life we lived that day. One wholly MAGICAL moment that will carry us into the future – a future anticipating more of the same victories along the way.

The day ended unlike any other we’ve had either….it just got better and better. The rain cleared. Our car wasn’t missing from the tow away zone I parked in. We were welcomed by our favorite table at the family’s favorite pizza joint across from the campus where graduation was held. Grandma and Grandpa found us and were able to join and all together we raised a glass to toast the day. After, we went to the local music store to pick up our graduates gift – a Moog type analog synthesizer. It was in stock – and the store assistant was able to sweeten the deal with extra plug-ins. Lastly, we dropped over to a used record venue, hoping to find some Moog music – and there was an album, sitting on the front rack. “Hello Serendipity, welcome to our life, we’ve been waiting for you!”

~ Wendy Frye

“In reality, serendipity accounts for one percent of the blessings we receive in life, work and love. The other 99 percent is due to our efforts.” Peter McWilliams

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Sibling

When the Maker waved his hand over the soul seed of our youngest son, he must have been in a very peculiar mood. Within the universal, infinite wisdom given in the first breath of his life, our second born son has proved to be the balance between our whole family.

In my minds eye, that first moment between Him and our youngest went a little like this:

“You will have infinite potential to love, build relationships and forge new paths of living. Be sure to take every imaginable tool, trinket, or other necessary item with you – prior to any adventure, always require your family to visit the local hardware store for adequate supplies.”

“You will have a great thirst for knowledge and curiosity for intellectual arts. It will be best that you ask at least 17 questions on each and every topic under the glorious sun of my creation to maximize your learning. Repeat this quest several times daily, your parents will be your best resource.”

“You will seek comfort in familial surroundings with your loved ones. Eventually, you will find your true love compass and build your next life with a partner. Until that time – fling every article of clothing, wet towel and soda cans around your room. Mix daily with a dose of Axe deodorant, body spray and a bowie knife. Your Mother will be reassured of your presence in the home.”

“You will posses great curiosity. You will always explore alternative solutions to problems and note every potential outcome with great care. In your pursuits, be sure to examine, explore, empty, or use GPS tracking on every personal item owned by every other family member. It is important that you can locate these items, keep inventory and every once in awhile, move something – just to keep that sense of suspense alive in your father.”

“You will be the first to try, the first to contribute to the conversation, and the first to champion new ideas and concepts that arise. Tear apart the vacuum cleaners, toaster ovens, and your bicycle – just to see how they work. Stay on top of all the technology in the household – out wit your parents at every turn. Seek their knowledge and enhance their lives with your thoughts, add to the conversation….every time.”

“Be the guy who has to rip open every shopping bag the instant it hits the front door. Dominate the remote control, equalize the chores between you and your Autistic brother – “because he doesn’t get off without helping around here.”

“You will be fascinated with fire. The randomness of the flame will entice thoughts of the endless possibilities of quantum physics. Your parents will reward this with annual fireworks for the 4th of July. Sort the items, list out the schedule, light the match – “Fire in the Hole!”

“You will know great love in this lifetime, forge deep friendships, will learn and teach others to be the best version of themselves, this I promise.” “And above all else, you will enrich the lives of all you meet – the very definition of polite you will be.”

“Your road won’t be the easiest, nor would you really want it to be. The character of your soul will help you pass the tests given you by having a disabled brother.” “Tread well younger son…..your parents, brother and the others in your life are already so very proud of you.”

Love to our study souled son, the younger one who makes us laugh out loud, every single day. ~ Wendy Frye

“Happiness resides not in possessions, and not in gold, happiness dwells in the soul.”
~Democritis