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

Ideology

It is thought by some, that Autism renders the soul without ego. Living in the id – or emerging infantile ego state – of base needs and Freudian explanations over the lack of “social conscience”.

The id of my son:

Social conscience, for my adult son diagnosed on the spectrum at the age of 3 1/2 years old, be dammed. He slurps, burps or bumps into people on the street without a thought. Ever mindful of hygiene, taking two showers a day, abusing the deodorant and shampoo, he still refuses to shave his beard. Looking like a wanna be bearded Amish man – his face fuzz is just NOT manly – but he doesn’t care. An extended hand to shake receives a wag of the finger, no hands touching. Awkward? Yes. It’s all in the getting used to part of knowing him.

The ego of my son:

So. You want to talk about works of art and their makers. Discuss creations by masters of pop or surreal nature. He’s on it and engaged. Working with his new job counsellor today, a charming lady – he’s met his perfect ying/yang match. She’s creative, happy and does not hide her obsession for colorful pens….all nestled in clay mugs in a row across her desk.

Lively discussion, complete with true admissions from the young man, he paints his future out loud like a masterpiece. Can’t name the exact voodoo his counsellor possesses – but she is in possession of a certain kind of magic for sure. The conversation drifts into the nuts and bolts of the work involved, she turns to me and my son tunes out.

He retreats into the conference room. The walls littered with quotes and phrases of encouragement and an oversized white board. A blank and handy canvas, just ready for his ink. Picking up the first dry erase pen (no asking, just assuming it’s okay) he starts a new drawing . She quickly finds and hands him another box of more colors and shades from her extensive collection. Just like my son, never missing a beat.

THIS is going to be fun……
~ Wendy Frye

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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.

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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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

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

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