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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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

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

Stereotyped

Per Wikipedia: “Stimming” – A repetitive body movement, such as hand flapping. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input.

Just simply try to imagine an even more uninformed and ignorant world. A world wherein society is made up of all walks of peoples who are even less accustomed to an ever-emerging population. The population of individuals on the Autism Spectrum.

Our son was only one in ten thousand. In a city of only 200,000 it was a rare day to see another family out and about with their child on the Spectrum.

Our beautiful son, diagnosed so many years ago, yes, he too “stims’. When he was a toddler, he usually did visual stimulation. Looking at light/dark contrasts over and over to beef up his visual pathway. Later, he would hop, skip and yodel. And yes, it is very distracting for the unaccustomed.

Newer to Facebook, I can boost a new family who too are impacted by Autism. I have other moms, dads, groups, interested parties, and adult friends with Autism. These people are priceless when it comes to understanding this new world, populated by one in eighty eight persons on the Spectrum.

One particular friend rallied around a sincerely provocative idea. Parents and therapists utilizing ABA (applied behavior analysis) therapies and behavior interventions should conduct those sessions in public, say Target or Costco. Consider it an Autism field trip. Let societies ears ring with the deafening screaming and witness the erratic behaviors Autism Families share behind their front doors.

Personally speaking, we get out as often as possible. Quick trips here and there. Classes, adventures, and the like – usually its me and my son alone. He’s typically on point, not exactly engaging, but aware of his surroundings. Not exactly polite, but not as rude as he can be. It’s been very fulfilling for me to spend quality, caring time with him. The people we meet along the way, pretty understanding – maybe with more people affected the mainstream is getting it. Oops, I need to slow down here. There was one day not long ago…..a real game changer for our family.

I simply took my then 18 year old adult son on the Spectrum to Walmart (I know, never again) and left him to test video games while I picked up a few groceries. Massive visual stimulation! Sensing the expiration of time out he will tolerate, I backtracked to the video department. Oh, there he is, I thought – he’s walking my way. Good mom senses here! Wait a minute. Whoa. Why are there 6 employees, keeping their distance, following my son like the Presidents secret agents? I was instantly made aware why – he was stimmin while skipping/walking/yodeling over his path back to me. I had to laugh. No more are we embarrassed. Why? He’s doing what he naturally does – just being himself.

Just be you, James Frye, just be you…. ~ Mom

” You may say I’m a dreamer, but I’m not the only one
I hope some day you’ll join us
And the world will live as one.” ~ John Lennon

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Passed

To look forward to the opportunities to be chronicled starting with the initiation of a new year, it seems sensible to look back – first. I had forgotten and needed to re-learn how to measure success a long, long time ago. While recovering a child on the autism spectrum, the days, weeks, months, and years all fly by. Terrified we would miss the “finish date”, that notion where critical brain development is truncated by age – which signaled the end of the road. Even with a son who is now an adult on the spectrum, there is still that little “bit-o-panic” that nips at the heinie….a silent clock that ticks only in the back of the mind.

Tick.

Tock.

But wait!

Stop!

Stand still. Reminisce, go back through pictures (painful or not), now review/backtrack the calendar. Where were we then? Where were we while trying to figure it all out in the haze of life jacked up in physician appointments, therapies, special education, familial scorn, awkward glances, outright ridicule, asshole “friends”, working too much for shallow souled people and places, plus the other assorted diatribe that really didn’t matter. It sure piled up.

Now breathe.

Quantify the big and little changes from the last year (and prior years). Sweep off to uncover the foundation that has already been built to work from. Give credit, recognize true supports, cut superficiality and relationships that compete for any energy that’s less than positive. Stop trying to payoff neglect or abuse – their is no tender available. Quit competing, this is not a race. This is a life.

Now move!

Expand your sense of excitement. Consider the endless possibilities. Practice flexibility. Embrace a true career calling. Release your abilities. To relish the freedom…..

All in a New Year! ~ Wendy Frye

“To achieve, you need thought. You have to know what you are doing and that’s real power.” ~ Ayn Rand

Resolve

Considering resolutions for the coming New Year has a lot more meaning, or so it seems. Stepping back, taking care of my now adult son on the Autism Spectrum, I’ve been given a golden opportunity. The opportunity to take back my life too – refine my own “how I wanna live” goals – and move forward into a new beginning. Oh sure, eat right, exercise, breathe, payoff bills, and all that rot remains tattooed to the list. But this go around, on a philosophical level, will be the changes it takes to live how I wanna LIVE.

This time, I resolve to……:

Love with all I have,
Respect myself,
Be creative,
Start a venture, and succeed,
Work smart,
Leave negativity behind (including negative people)
Volunteer,
Keep family a priority,
Forgive those people who have worked against me, mine or ours (seriously, even the ones who say they are a friend),
Stay positive,
Become a role model,
Expand my garden, literally and figuratively
Create abundance,
Reach out to others who need a hand,
Get to know my neighbors,
Dig up the old, wonderful relationships I had to leave behind early on dealing with Autism in my home (I miss some people!)
Be grateful for having enough,
Live without regrets.

This coming years resolutions doesn’t start with the new calendar, nope, it starts right now. With the holiday festivities starting today – what better time for a new beginning. Seriously, we all made it through the Mayan end of times, didn’t we? Yes, yes we did……

Cheers! ~ Wendy Frye

“Nobody can bring you peace but yourself” ~ Ralph Waldo Emerson

Flip

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

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

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

Visualize:

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

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

Now an adult son.

Time to quit?

No.

Time to change things.

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

Time to throw out the notebook.

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

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