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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

Book

I’ve been holding my cellphone in a kung-fu death grip for the last 12 working days of the past weeks. We will log 30 total days. I drive downtown with my eldest son, the one diagnosed on the spectrum so many years ago, to drop him off at The Goodwill for a job-study. I was staying downtown, certain that the 20 minute drive from home would render him helpless if he had an autism meltdown or lost it over a bee in the building.

The shovel ready jobs of Obama are alive and well next to our destination. Four times daily we have to navigate across the ripped up street, around heavy construction equipment, jumping new water pipes waiting to be dropped and hooked in the trenches. Oh, and the cars along the one open lane really should consider stopping at the cross walk. If they did, the drivers wouldn’t get the fist pump motion from my son relaying in unspoken words what an “IDIOT” they are.

Can’t quite stop holding his hand. Still, so many years later, I hold his hand to cross the street. Sounds ridiculous? Not really – beats him sprinting in panic and getting creamed by one of those “IDIOTS”. Hand in mine, the opposite one in a cell phone death grip. God help us autism parents over the everyday stress we live with. God. Help. Us.

This is part of the process. The inadequate process of employing a bright young man given a disability in one quick shot in the leg. He’s riding the crest of the coming population, or should I say legion of young autistic adults who too will find their helpless parents clutching their phones within an inch of crushing it in half.

My son sees himself as an artist, we do too. But even artists need to work. So, we tell him he’s a working artist. The day he received his first paycheck (a paid study at least) he began to understand that even though bagging children books can be mind-numbingly boring, there is a sense of pride in a job well done.

I’ve read the articles that claim parents with autism in the home suffer from PTSD. I think it’s true – and that our children suffer even more so every day by virtue of the condition. Seems the only people who understand this kind of Autism are the few “friends” I’ve met on Facebook. Slow to get involved with the vehicle of communication most are choosing, I find it invaluable for information sharing of the subjects most important to me.

Of late, the tide of Autism Awareness is giving way to Autism Action. The process of doing this whole gig – shouldering the responsibility of this specific generation has to have an ending. My good friends, who too are in the trenches, are too making the shift. We are collectively embittered by the situation and have waited years for the disclosure that we, as a society, are being damaged and broken for the profit of the corporations.

As I always try to find it, there is hope. Recently, Mr. Robert F. Kennedy, Jr. made a vow to my – wait scratch “my”, OUR community that his life work will be to disclose the simple truth that our government has known vaccines, and their components, are at the root of the Autism Epidemic. He has a book made up and is not afraid of the ramifications if the government doesn’t follow through.

Never did I imagine my life ending up this way. But it is a life, and it’s worth living. I can always buy a new phone.

God help us. ~ Wendy Frye

“To my mind this is like the Nazi death camps.” ~ Robert F. Kennedy, Jr. spoken to the audience at Autism One, 2013.

Encircled

Growing up, in a family not designed to structure potential, my earliest years were ones of insecurities, self preservation and a desperate drive to just survive. This is not an uncommon theme, sadly. And now, while it doesn’t even matter at this current stage of life – I’ve seen others with the same root stock – they tend not to grow or simply wilt on the vine without knowing passion, or what life is really about.

Bittersweet fates sent me the wonderful man I married in my early 20’s and we, together, are building a life (sweetness!). A life that includes two beautiful sons, the eldest diagnosed early on the Autism Spectrum (the little bitter). Without adequate time for my early childhood wounds to knit close, my husband and I stood facing the longest haul possible – supporting our Autistic son through his earliest years, and ultimately, the end of his life. While some people with smaller minds and hearts might find this too arduous a task, we believe this is what carves our character, gives meaning to our days and fulfills the very definition of why we are put in this world and given the gift of two exceptional children.

In the years when our oldest was being diagnosed, it was not as common a situation as today. We had to look up the definition of Autism. We had to mourn. We had to get furious that this happened to our beautiful, beloved son. We had to breathe. We had to believe. We did all that and are still doing more and more.

The toughest moments were early conversations with family – and the disconnect between belief systems. No one can describe the closeness of an Autism family acting together as a team to recover their child (body and mind) from the edge of the abyss – unless your in the same vein. Transcending the early cheerleader role, trying to persuade the obtuse, I’ve laid down my sword. Cutting the cord with the doubters, closed minded and the naysayers, we move along.

Now in my middle years, looking behind me, that suit I used to wear doesn’t fit anymore. The one that was spun at the hand of others weaving tapestry of weakness, insecurity and anxiety. We, our little tight-knit family, are not afraid anymore. We don’t really have an opinion about anyone else’s that doesn’t support our mind-set, to celebrate small successes every day.

No, I won’t pray to St. Rita – knowing Autism has healed me. Autism has grown me. Autism has given me a reason to give all I have to my children. Autism is what motivates, and knowing Autism has made me who I am.

I am an Autism Mother. ~ Wendy Frye

“It takes courage to grow up and become who you really are.” ~ e.e. Cummings

Thrice

Why choose to go on and on and on when three little words will do?

Such as:

* I Thank You
* I Trust You
* I Believe You
* I Understand You
* I Forgive You
* Please Forgive Me
* I Am Sorry
* You Are Right
* I Am Wrong
* Let Me Help
* Count On Me
* Go For It
* Good For You
* You Did It
* Proud of You
* I Love You
* Pray For Me
* God Bless You

Consider the power in each statement, visualize the bridge that will be built, the rift repaired, or a sentimental moment that will be an all life memory in the making. All in just three little words. Come on, just give it a whirl!

“All My Best!” ~ 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

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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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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Pokey

Flexibility in any family is critical to the cohesiveness of everyday life. Beyond the usual daily routine such as meals, chores and activities, families will carve out time for special events – and thus begins their own brand of special traditions. Traditions are made and continued by the very rituals and rites orchestrated by the family leaders. Participation is sometimes voluntarily and sometimes not, depending on the family, the depth of passion and the heart of the group.

We didn’t exactly loose our momentum in regards to family traditions. However, after our son was diagnosed on the autism spectrum – we just instinctively developed our own unique group of “rules”, “regulations” and “procedures”. The “rules” form the foundation of structure that defines how our life as a family of 4 plays this game of life.

Take Santa Claus for instance. He’s pretty much innocent of any wrong-doing with most of the “believers” who visit him annually for a picture. You know them, the mass of humanity who descends upon local mall, to pose for one ridiculously expensive Polaroid shot with the big guy in the red suit. But when we attempted a visit and picture for ourselves – modestly taking our son to the local shopping center in the ruthless pursuit of a tradition? Absolute chaos….our first son’s pictures depict one little boy, terrified witless, and one VERY sorry SOB who had the bad fortune of showing up for work that day.

So it begins, the rule making – the official family charter for survival:

Holiday Rule #1:

THERE WILL BE NO FURTHER INTERACTION WITH THE MAN AT THE MALL PRETENDING TO BE SANTA. (EVER!)

Well, what about Halloween you ask? Oh goodness, those first costumes were soooooo cute! Lovingly sewn by hand, Grandma made them with all the love she could pour into the project. She included all the details; logos, fringes and patterns and whipped up the most darling pig and cow outfits for the boys. Harmless little farm critters they were – complete with tails, horns and enamel buttons. What fun it will be to take them “trick or treating”! The reality – those cute little get ups didn’t make it past the front door.

Holiday Rule #2:

DO NOT OPEN THE DOOR ON HALLOWEEN WITHIN THE VISUAL PATHWAY OF THE OLDEST SON TO ANYONE WEARING A MASK, BLACK OR A COMBINATION OF BOTH. (Someone will go down.)

Besides Holiday rules, there are the everyday parameters we must abide by, for our autistic son to be part of the crowd and allows us to move as a group:

• IT CAN TAKE ONLY 10 MINUTES OF BEING OUTSIDE FOR A SWARM OF KILLER BEES TO ATTACK ANYONE, ANYWHERE. (Don’t dally getting out of the car and into the store.)

• IF YOU STORE VODKA IN THE FREEZER YOU ARE AN ACHOLOIC. (Wine and beer are cool, but hard liquor crosses that imaginary line.)

• LILLY WILL POOP. (Don’t feed the dog any snacks after 8:00 am or the little white dog will have an accident and that is unacceptable.)

• HE WILL MISS THE BUS. (The universal pardon for the eldest that accommodates his desire not to lift it off his chair in the morning for any other reason besides leaving the house.)

• CONSERVE THE ICE. (While it is okay for our oldest to enjoy new ice with every drink over the weekend, we are limited to one or two cubes at a time, until they melt. We must be courteous and not exhaust the ice supply on high demand days.)

• NEVER WALK NEXT TO THE RAILING ON THE SECOND FLOOR OR TAKE THE UP ESCALATOR AT THE MALL. (This one is mine, high anxiety set in when the boys were little, and I’m STILL sure someone will take a dive from that un-survivable height.)

• SESAME SEEDS ARE THE DEVIL. (Supposedly an allergy, but actually a sensory issue of our autistic sons – when translated bans all hamburger buns, and the restaurants that serve them, straight to hell.)

Sometimes, looking back, I realize JUST how out of balance my personal flexibility meter truly runs. Take these family rules and regulations, they save our sanity on a daily basis. Seriously, if you just KNEW that breaking one of these little gems would result in a subsequent “incidence” of biblical proportions – would YOU piss around, unnecessarily, instead of just getting out of the car and getting into the store? Really, there is the absolute threat of a killer bee flyby, it is June you know! So you just do it. You get out of the vehicle and walk with purpose to the door. You open the door; step inside the building and sigh with abject relief you survived the journey.

These rules ensure our families survival, out there, in the jungle of life. And with Autism involved, it’s the survival of the fittest. So be like Gumby; flex, stretch, leverage the help of good friends, use your words and most importantly, watch out for the Blockheads……they too are the devil. ~ Wendy Frye

“A whole stack of memories never equal one little hope.” ~ Charles Schultz