Carousel

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

Missed Adventure

Sometimes, and you know when it happens, the Universe hands you your backside and you decide, with all the dignity you can muster, you must make a choice.

This happened, again, in our family the other day. Our oldest, diagnosed Autistic, graduated high school with honors – and we were set to celebrate. BIG! A vacation, a little time carved out for each other, traveling to a strange and wonderful place together. A time to explore the possibilities that the future has to hold. San Francisco! A haven for the artist within our oldest, and the dynamic venues available to our youngest – who’s thirst for knowledge will never be quenched.

Plans were drawn up, tickets bought and at the last moment, mayhem. Our dog sitter didn’t show up. It was at the last minute we realized how vulnerable the two little white dogs we love so fiercely had meant everything to us. The slippery slope of quick change for our oldest can make or break any adventure – and no amount of planning could so quickly derail all our efforts to take a break as a family and adverted the disaster that loomed Sunday morning.

She just didn’t show up. An agenda aside of our own, we never realized how a vindictive wife of my husbands friend could so easily change our fates. How her callous disregard for our sons victory dance to San Fran, after a long school career and the regaled graduation of our eldest. We trusted this person, who had known our family for 10 years, and had cut and styled or sons hair from the time he couldn’t cope with the sound of clippers in our home, the very person who just didn’t show up.

We proverbially woke up, shifted admirably, and I dropped off the three most important men in my life at the airport. At the break of dawn, there we were, plans blown up – and surprisingly the subsequent damage to our sons dream vacation was minimizing as the minutes ticked by.

What an alien feeling coming home, alone, to the dogs who were snubbed by the woman they saw only two nights ago, nuzzled and loved on her as they do us. A quick woe is me post on Facebook netted several phone calls from real friends willing to come over and salvage our plans.

No, we had already made the on the spot decision to send my husband solo with the boys. A male bonding adventure, complete with municipal traveling, arriving at the wrong hotel, with low blood sugared sons competing for security with the man they know as their father. He was just as alone as I, in a strange place – pulling up his big boy pants, he is now on point, determined to show his sons the time of their lives……..

My other mother, Cynthia, called me to talk it out. “The Universe is telling me something here.” , I say. “Yes, and everything happens for a reason.” She replied. We laughed out loud at how my husband went to the wrong hotel after I told him every day for 2 months that it was the Hyatt ON the Pier. (Who knew there were TWO Hyatt’s in San Francisco!) Really, they will be fine, and now – after two phone calls on day two, they are having a great time, without me – and that is the best news, ever!

I was disappointed for a while. But you know, navigating the lives of the members of my family so throughly and for so long nets me a little me time to call my own, too. It is worth what we are out for my plane fare and cost of a hotel bed for this, this forced bonding time for the boys.

Chasing the dogs back to bed from the front room window, where they keep watch for the rest of the family, kept me up most of the night. But alas, I had a long lunch with my mother in law today, one of only a hand full of times we’ve had 3 minutes to string together for each other. We went shopping, nixing the mall for the salvage stores and having a delightful bite at the local bistro. It was priceless spending time with her…..and I promised to do a better job in the future.

An era has come to an end. My two boys – they are not the babies I borne or the little boys I worried over for so long and so intently, especially the eldest with Autism. No, they are men of the world now. And their father? He is making the mutual memories with them to call his own with the two young men he helped craft over the years. Beautiful. Absolutely beautiful!

So right now? I’m going to eat Fritos and string cheese for dinner, chase the dogs off “Daddy’s Chair” and wait for the next phone call from my family. Spending time in boxer shorts, cruising the internet and Facebook has been delectable. Can’t wait to hear about the mis-adventures and experiences they have shared together – alone in a big city – without me, the navigator of the family.

A long, long time ago, my very close friend Jenny told me every year for Mother’s Day she spent 24 delectable hours alone at a local hotel with the explicit orders to her family that she was not to be disturbed. UNDER NO CIRCUMSTANCES was she to be disturbed, and that meant blood too. It was her time to recharge – the mother of three children that includes twins all under the age of two years old, living under the roof of a single wide mobile home trailer. All the while raising them all at the same time. Her husband honored her wishes and she found her center, once a year – and now, I get it. Alone time is divine, in small doses actually therapeutic. OMG Jenn, I get it.

Thank you Universe – this time to myself is welcome. The hand dealt to my husband, alone with his boys also, again very welcome. Now please, move along to the next family, hand them theirs so they learn the lesson of solitude and sharing the responsibilities of life – and please, leave a little more time for us, the ones who have learned and honor your wishes. Because ultimately, all we have are our memories, and in the end? Its the time well spent, together, and apart – that is most remembered by all.

~ Wendy Frye

“Fathering makes a man, whatever his standing in the eyes of the world, feel strong and good and important, just as he makes his child feel loved and valued.” ~ Frank Pittman

Whistle Stop

There is a considerable amount of free-flowing information on the internet, in the papers and on the television regarding the spike in the rate of diagnosed cases of Autism.

An Autism diagnosis does change the entire landscape of the family.  From my own personal experience, receiving the diagnoses for our eldest son approximately 15 years ago was nothing less than getting hit by a freight train.  The freight train that hits you is travelling full speed, at night, in the dark and in total silence.  We never saw it coming.  Most parents, grandparents and caregivers in our generation never saw it coming.  In our “day”, it was 1 in 10,000…..now; sadly 1 in 88 is the official number.  Again, I reiterate, it has only been 15 years since our son’s diagnosis.

While the debate churns and turns even nastier regarding the cause of Autism, we do know deep in our heart what happened and how our son became so ill.  We instinctively did what we felt we needed to do for our son to get him back to “well”.  We will always be skeptical of all statements, studies, suppositions or rehash on the subject.  However, regardless of how I feel and what I know, I am standing HERE, on this blog in neutrality – and choose to only educate those who read this simple blog, on my simple page about my complicated life with the same wry twist that has saved our sinking souls.

You see, we honor our sons, both the “astronaut” and his “heroic brother”.  While we never saw the train coming, we did ultimately jump off the tracks in the attempt keep our sanity.  It was necessary, but it was not easy, and the scars are still red welts, bleeding and miserable.  We ultimately went off the grid, did the fringe therapies that were emerging science at the time, and have never second guessed ourselves then or now.

It really is surreal, sensing your son was mugged and robbed of his childhood on so many levels left sick, scared and seemingly left behind to ultimately be sent to a group home or institution when he turns 18. 

Well, he’s 18 now.  He’s healthier and stronger BECAUSE he’s had to prove himself every day since he was diagnosed.  He now walks tall, he didn’t die, and he has transformed his life and ours – paving the way to excellence in his own way.

That little boy didn’t have much of an early childhood beyond therapies, medicines, treatments, procedures, surgeries and the like.  But now, right now and into his future lays a bright and beautiful landscape.  In our thoughts, those years should have been full of the wonders and delights kids experience when they are young and learning about the world.  We feel the same type of years that were stripped from our son is now in front of us. So, we GET to flip forward and continue to parent our son after his majority year, does it really matter that much if we do? No, it doesn’t matter because he is now much healthier, engaged and driven to succeed.  He is actually enjoying the idea of continuing his education in the subjects of his choosing….and thankfully; he’s letting us come along for the ride.

As the debates escalate, parties divide and research is conducted regarding the Autism debacle, feel free to visit here at Juggling the Astronaut.  I will strive to offer up some humorous, side-ways stories, thoughts and ponderings.  Even though I will never underestimate the healing ability of humor –  I can’t promise to always be funny here every time, all the time……all I can do is try.  ~ Wendy Frye

“All the art of living lies in a fine mingling of letting go and holding on.”  ~ Havelock Ellis

Lesson Plan

Looking out the window – I note the beautiful day outside. Birds are flying, trilling and fluffing newly laid nests. Trees have bloomed, popping out flowers to puff pollen into the air, ensuring a lasting heritage for their kind. The air is still, yesterday’s stormy winds have left the air swollen with fragrance, kissed by the promise of a beautiful spring. The first season, Spring. Time for renewal, fresh starts, new growth, tilling the possibilities for a bountiful future harvest.

Like farmers with their precious crops in a field, parents grow their children. We parents nurture our children, teach them, learn from them only to ultimately let them go. As Graduation day approaches some of our children are gearing up, going to prom, taking finals and steadying themselves to plant the seeds to sustain the lives they will live.

In our family’s world, the segment of the community that dwells with a disabled son, we too anticipate a bright and bountiful future for our son. The son who was diagnosed Autistic at a very young age. The same boy who has been going to school since he was 3 and 1/2 years old. The 18 year old who is ready to take on the world in his own way.

Reflecting back, way back over all those years, it has been a phenomenally interesting journey. Our road that’s been full of peaks and valleys – on a path full of wonder, surprises and an enormous amount of humor. And now, standing at the gate to the future, I take a look at the past and recall some of the memories we’ve collected along the way:

The way my mother explained, in plain terms with blue language, that my devilish son looked her square in the eyes while he unlocked the door and attempted to exit her Mercedes car that day. She was trying to drive him back to preschool. He didn’t want to go. She “insisted”. He still didn’t agree and decided he was going to leave the car and her company. They were parked in the middle of a busy intersection. He didn’t care. His grandma did care…..sounds like my 4 year old, disabled, autistic son brought down the wrath of my mother that day. And from that moment, the moment he locked eyes with her, she never argued that he didn’t understand absolutely everything – including “get your ass back in this car young man before you get a licken you’ll never forget!”

The picture presented to me by my son’s favorite middle school instructional aid. The one where he hung 26 different colored sticky notes across his face, arms and shirt front. He was by himself in the teachers’ lounge for some reason, bored and had decided to take it on himself to break the afternoon monotony. “Lori”, “Hey, Lori??” “Need a sticky note or anything?” Laughter erupted – my son, the epic champion of classic deadpan humor.

The winter celebration dance staged by the local tribal casino. An event you never hear about that occurs twice a year. The Tribe picks up all the special education classes from all the districts around the city, drops them off at the casino in the ball room. They dine, dance and socialize. My son? He’s the one who packs his own pizza, drinks down 17 sodas and proceeds to take over the dance floor. Nothing like it, stimming off caffeinated, caramel colored, artificially flavored fire water has advantages to the socially challenged, didn’t you know?

And most notably, the night before he started his high school career, yells from the basement…”Hey Mom!, Look at me!” Turning halfway I struggled to hold down my gasp reflex…..”I shaved off my eyebrows!” He further explained he saw it on the movie trailer for My Best Friends Girl.

Graduation day arrives the 9th of June. My son will walk with his class and graduate from my own alma mater. Our friends and family will make up a good slice of the audience during the procession. We will bring camera’s, recorders and our best sense of humor. And when our son goes to pick up his honors – he will no doubt hear our cheers, cat-calls and applause, and in the auditorium full of people, our boy will know that he will never be alone again.

We dream bigger…. ~ Wendy Frye

“Our goals can only be reached through a vehicle of a plan, in which we must fervently believe, and upon which we must vigorously act. There is no other route to success.” Pablo Picasso

The Artist’s Statement!

Our oldest son was diagnosed on the Autism Spectrum 15 years ago and will graduate this year. He is a bonafide artist……This is his professional statement to the world. Enjoy!

THE ARTIST’S
STATEMENT

word – n
…a unit of language, consisting of one or more spoken sounds or their written representations, that functions as a principal carrier of meaning.

ON THIS PLANET, MOST PEOPLE COMMUNICATE WITH WORDS. MANY, MANY WORDS ALL STITCHED TOGETHER; RICH WITH EMBEDDED OVERTONES THAT TINTS OUR MIND WITH EMOTIONS AND FEELINGS. WHAT OF THE MEANING OF ALL THE WORDS? ALL THOSE WORDS WHICH ARE TO BE INTREPRETED BY THE LISTENER TO EVOKE AN UNDERSTANDING OF ANOTHERS EMOTIONS AND FEELINGS? TOGETHER, THOSE WORDS CAN COLOR ANYTHING, EVERYTHING OR NOTHING.

LIKEWISE ON THIS PLANET, JAMES FRYE, COMMUNICATES HIS FEELINGS AS A YOUNG MAN ON THE AUTISM SPECTRUM THROUGH HIS ARTWORK.

THE WORK OF JAMES FRYE IS UNIQUELY HIS OWN AND HIS OWN UNIQUELY. HIS PRIDE REFLECTS DIRECTLY UPON HIS PURPOSE HERE AND IS THE VERY REASON WHY HE CREATES ORIGINAL ARTWORK TO SHARE WITH THE WORLD – COMMUNICATING HIS FEELINGS UNLIKE ANY WORDS CAN EXPRESS.

Art, at its simplest, is a form of communication. As most forms of communication have an intent or goal directed toward another individual, this is a motivated purpose.​

JAMES FRYE HAS DECLARED HIMSELF TO BE “AN ARTIST!” WOULDN’T IT BE SOMETHING TO JUST KNOW WHAT YOUR LIFE WORK WILL BE BEFORE YOU GRADUATE FROM HIGH SCHOOL? WOULDN’T IT HAVE BEEN SOMETHING MORE TO KNOW HOW YOU WOULD BE LEAVING YOUR BOLDEST THUMBPRINT ON THE WORLD SO YOUNG?

YOU SEE, JAMES FRYE, “THE ARTIST!” WAS DIAGNOSED ON THE AUTISM SPECTRUM AT THE AGE OF 3 ½. JAMES WAS BASICALLY NON-VERBAL UNTIL AFTER THE AGE OF 6 YEARS OLD. JAMES HAS WORKED VERY, VERY HARD OVER THE YEARS TO OVERCOME HIS LINGUISTIC COMMUNICATION DISABILITY.

JAMES PAINTS WITH ACRYLLIC PAINTS IN AN ABSTRACTED STYLE AND SOMETIMES FORMS SYMBOLS WITHIN THE HARD LINES THAT ARE UP FOR INTREPRETATION. HE DRAWS AND SKETCHES HIS HANDS AND THEN FORMS STRINGS OF THESE SYMBOLS ACROSS THE PAGES. HE IS ALSO A VERY TALENTED CERAMIC ARTIST THROWING POTS AND WORKING THE CLAY BY HAND TO MAKE SOME VERY INTERESTING WORKS OF ART.

WITH HIS ART JAMES MOVES BEYOND HIS COMMUNICATION LIMITIONS – HE NAMES HIS PIECES VERY THOUGHTFULLY SUCH AS; “SQUIGGLY LINES & BRAIN CELLS”, “FRACTUAL FACES”, “SADNESS OF MEMORIES”, “RUSSIAN GEOMETRY OF NUTRITION” AND “PEACE MORE”. IT IS WITHIN THESE TITLES, WHERE THE WORDS ARE, THAT IS THE PLACE WHEREIN THE ARTIST COMMUNICATES.

Lilly

After a year of only one dog, Annie, Daddy’s dog and beautiful girl, we began to wonder if one dog could be so much fun, why not get another? It was only in consideration of Annie and the long, lonely days she spent waiting for us to get home, of course.

The boys were trying to sell me that the anxiety ridden, people pleasing little white dog needed a “buddy”. I resisted, you see, it was just giving my husband a license to pick himself up another personal pet. Annie ADORED Daddy. It was obnoxious being the other woman in the house. Annie would personally herd me to wherever Daddy was. The boys thought it was sweet. I, however, saw through her little game. I have survived, but really, another one?

So, the morning of Father’s Day, just in time my husband and kids Summer Break, there appeared in the local paper THE advertisement. The advertisement featured that same little white, fuzzy face dotted with coal black eyes. “Mom!” Let’s get Dad another dog for Father’s Day! You know Annie would love it! My husbands head swung around, locking his hazel greens on my steely blues and I knew it was just not a suggestion anymore.

The boys and my husband piled in the Prius and drove the 100 or so miles to pick up the newest drama queen of the house. I stayed home with “The Annie”. It was awesome, Me, Annie and her last day of being the star of the household. “Let me know how it feels big girl. Let me know how you feel when you too are usurped by an outrageously expensive little ball of fur.”

From what I heard there were at least 7 litter mates up for selection. My oldest stayed in the car and my youngest eagerly (ADHDish) checked out the puppies. They called and let Annie and I know they found another beautiful girl puppy! Awesome! I’ll bake the cake – not.

A couple of hours later the boys pulled up in the drive. Ever so stressed out, excited, and obviously overwhelmed they entered the front doorway and called out the warning that the new puppy was home.

Annie, missing her boys, was thrilled! She stood up, twirled in circles, and then froze. She smelled the trouble. I looked over, and noticed one thing. Her tail was wagging. It was wagging the wag of the Alpha female. She had to have known!

Poor little Lilly, Lou Lou. To be so cute and have “The Annie” breathing fire upon your very presence. We sat down in the living room, circled up, and took the baby out of her travel box. Oh, and she was a little baby. Younger than Annie when we first picked her up – and what did that baby do? She looked us all in the eye, whined a pathetic little whine, and immediately walked up to the kibble bowl and dug out a morsel. She dropped in down in front of “The Annie” and proceeded to eat. A little mind of her own!

What? Oh, ya, she was fully trained on being a certified pig dog. Annie came from a puppy-millish place. Lilly, raised in the kitchen of a grandmotherly woman who poached a few puppies for a friend….but I digress.

Little Lilly Lou Lou. What a sweet, little baby doll. She ended up being the best friend to Annie. So cute, and so little. She is a runt. True confessions a year later? Our son had dropped her on her head and felt so horrible that he felt he needed to be her indentured servant the rest of her days. (He dropped her 4 inches from the floor, but what is a bleeding heart to do?)

Lilly and Annie eagerly await the opportunity to co-chase evil joggers and walker -by’s from the settee in the front room. Yes, they have their own little couch, with blankets and pillows from which to spend the day observing life go by. Lilly personally has chased the mail-man from the front window so many numerous times – dutifully protecting her family from USPS evilness.

They are a pair, Annie and Lilly. And yes, they are now both Daddy’s Girls. I am mincemeat – only good at giving treats in the morning before dashing off to work. But then, every once in awhile….Annie will come and rest her head on my lap asking for belly pets. That little poser, she really does love me too.

~ Wendy Frye

The Artist!

Even though it wasn’t obvious early on, our oldest son was destined to be an artist.

You see, he was diagnosed on the Autism Spectrum when he was 3 ½ years old. We won’t be digressing back from here to “The Diagnosis”. Nope, we left that animal to die on the side of the road a long, long time ago. It was a good strategy for our family, a damn fine strategy.

But what we can do is “go there” to look between lines and around corners, back to his young childhood, back to the good days, when he was present with us – to uncover evidence of his emerging talent. The boy, who couldn’t yet speak, was drawing. The proportions were correct and the eyes had that little circle to highlight what direction light was coming from.

We didn’t see it then, but there he was, communicating in his own way through his artwork. Okay, it was not perfect, but it was purposeful, intentional and rational.

I can name his most precious work to me. It is my 1998 Mother’s Day card, drawn with long dangling legs and curly hair and I was SMILING. He drew me smiling. He SEES me as a smiley Mom. “Happy Mother’s Day, Mom!” was stamped on the inside very likely by his preschool aid. I’m keeping this card, deep in my heart, for the rest of my life.

To date “The Artist!” has painted enough pieces to fill closets. His abstracted style is in the likening of Picasso or Pollock. Within his craft he communicates through the titles he awards each colorful representation: We have yet to display the “Sadness of Memories”, “Tree of Knowledge”, “Squiggly Lines and Brain Cells”, or “Peace More”. The artist has an ongoing dialogue within his works of art (unseen to date) and he is eager to educate us all about what it’s like to be him.

There will eventually be an unveiling of his work – mark these words. For now, he’s preparing for college. That is correct, college. The beautiful little boy, who couldn’t speak has grown into a most remarkable young man. And this grown man eager to leave his finest thumbprint on this world. He is speaking to all humanity now, for himself and others that are still muted from the rest. He speaks loud and clear, in his own unique, personal way. Just listen……

~ Wendy Frye