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

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Pong

The location: Family Home Front

The players:

Son #1: Diagnosed on the Autism Spectrum at 3 1/2, didn’t speak until he was 8, has progressed nicely since and has graduated high school this past spring.

Son #2: Super hero of the family, considerate, funny, polite, and smarter than most humanoids I know who is home that day with a sore throat and little fever.

The Scene: Living room, complete with two new red couches (purchased on a whim by my husband while grocery shopping this past summer), with Son #2 home sick with laryngitis, Son #1 is essentially grounded – his plans to go to the art gallery “RUINED!”

Son #2 lays on smaller couch, freshly showered, helping himself to my iPad to watch another past episode of “Top Gear”.

Son #1 emerging from the basement researching artists on the web, studying their forms and styles to see what is happening.

Me, I’m in the kitchen (again!) doing another sink of dishes. Let me tell you, the “Early Retirement Gods” have some twisted sister humor. The day I “retired” the dishwasher went on the fritz and the lawn mower threw a rod. Picked up the lawn mower (Good Lawd, wouldn’t want the neighbors to think my husband a heathen by not mowing in a timely manner, would we?) leaving me now scanning the ads for a blockbuster sale on a dishwasher. So, anywhoo – in the meantime I tackle and tame the ever breeding army of plates and spoons the old fashioned way, by hand. (fake smile)

Son #2 has been answering my questions with the memo app on my iPad – saving his voice for someone else I guess. Son #1, who uses the app for his doodles and drawings, is a little ticked his brother has (again) hijacked his shit. “What’s WRONG with you!” He bellows at his brother. I explain, “he’s got laryngitis, be cool and cut him some slack.”

Stomp. Stomp, STOMP! Into the kitchen comes #1. I jerk my head away from my sudsy hell hole to see #1 grab my refrigerator black erase memo board. He whips open the pen, jots a note, holds it to his chest and proceeds to beat like Tarzan to get his brothers attention.

#2 doesn’t waiver, scribbles a hasty reply – #1 wipes and retorts…this goes on for a few rounds, my head watching the literacy ping pong match in front of my very own eyes.

Soon, #1 wipes the board for the last time and heads back downstairs. I look over at #2, still on the couch with my eye brow in full Spock mode. He shook his head with a wry grin and went back to his program. I grabbed a towel, wiped the suds off the floor and turned back to my drudgery.

I never asked after the context of the exchange, only marveled in the moment that we’ve come this far. Silent bickering. my eldest, the one who took so long to find his voice, facilitating communication with his temporarily silenced brother.

Life is good. Little things matter. And swearing at each other with facilitated communication devices in our home? Acceptable. ~ Wendy Frye

“Argue for your limitations, and sure enough they’re yours.” ~ Richard Bach

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One Percent

When two people meet, date, fall in love and decide to move forward and get married – the union automatically has a 50% chance of dissolving before the end of the first five years. When you have a child with a disability, especially one like Autism, the odds are a whopping 99% that the marriage is doomed to be an epic failure. I believe that the amount of time taken from the core relationship while caring for a sick child, that leaves one of the two without time or attention – ultimately the whole thing just sputters and spins down the loo.

Eighteen years ago, my husband and I were the newest of the newest parents on the block. Our baby boy was five years in the making – complete with surgery, fertility processes and procedures with only a sliver of time to conceive – WOW, we had won that lottery, didn’t we babe? Netting a ten pound, four ounce baby boy – and he was beautiful!

We lived in a tiny little house on a hill in our city – and it was the middle of January. The snow had abated, our little family needed to leave the cabin for a bit of time in the wilds or someone was going to be sacrificed. And it wasn’t going to be the baby or cats. So we concocted a plan. It was a good plan, and we weren’t ready for anything specifically, just everything that might happen “out there”.

Anyone with young babies or smallish children in their life can agree that the sheer amount of GEAR required for such a speck of a person is, well, honestly absurd. But we did what most new parents do – hauled every gift, item or article perceived to be necessary anticipating any circumstance we might encounter “out there”. This was our first outing as a new family and we were going to the “mall” like other families to use that pram and/or the kangaroo sack baby holder thingy, and it was going to be FUN dammit!

Tension notching a little higher after changing our boys diaper two more times before leaving. Not just a wet diaper but a blow out – a change complete with new clothes. Good thing we had enough newborn outfits for a third world country all washed and organized neatly in the dresser drawers ready to go.

Our two door 4 x 4 was loaded and I actually managed to crawl into the backseat to sit next to our new baby boy. We buckled him in, strapped his seat down, piled blankets on him and both secretly wished the other would call off the expedition. No such luck. It was my piece to watch out, bark driving instructions, all while belying my own anxiety making me the WORST backseat driver in the world. My husband, not too kindly, told me to RELAX or he was going to have a heart attack and careen off the road – OMG not what I wanted to hear! I was shutting up now – yep….shutting the hell up so my husband, the father of my son, could drive to the mall without incident. LLLLONNNNNGGGGEEEEESSSSSTTTT ride, ever.

I watched our boy next to him in the backseat, anticipating the reality of his first outing. Sporting a cute little bear outfit, camera in hand – we were almost there. Timing is everything with a newborn, breastfeeding done within the last half hour, diapers changed (repeatedly) – the sleepy little guy should last a couple of hours before he needed anything, right? A couple of hours out of the house, long enough to call it an official day out, right?

Wrong. Oh, so very VERY wrong.

We made it all the way to the parking lot of the mall, but needed to change diapers again. (Seriously?) Another blow out – complete with new clothes…the whole shebang. And me? It was time to calm down (it was cold out there changing diapers!) and exit the vehicle. My husband had the pram ready to go……

A nursing mother hydrates, a lot. A new nursing mother who gained more weight than her doctor felt was reasonable, is re-learning her own parameters. We had a two door 4 wheel drive vehicle – and I was in the back. Our son was already placed in the pram. I had that STUPID kangaroo sack thingy around my neck. It tangled on the seat base and I was dragged back into the vehicle without the thrust available to me to launch out of the car. Boy, I had hydrated admirably that morning, the morning we were going to have our first family outing. While my husband and I shared uncontrollable laughter together, in and about my condition while wedged in the back of the car, I ultimately managed to pee my pants…….

What a day, one day in the many that have come since, dealing with Autism, trying to keep our unconquerable souls well fed with laughter and humor that abounds from such bizarre and absurd circumstances.

Happy Anniversary to my Husband! We are the other 1%, aren’t we? The 1% that make it to another side while raising two beautiful children – one with his heroic traits and genius appetite for knowledge, and the other an astronaut we’ve managed to juggle all these years. Happy First Anniversary on the other side of Autism, my dearest husband.

~ Wendy Frye

“A life spent making mistakes is not only more honorable, but more useful than a life spent doing nothing.” ~ George Bernard Shaw

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Maestro

My husband, the father to my two sons, has enjoyed a long and passionate relationship with music. He is an avid collector, student and master of all things regarding the Beatles plus about 8,000 other bands of the 50’s and 60’s early rock generation.

It began, he claims, during the ’70’s decade of his young adult life. Waking up to “Muskrat Love” playing from his AM/FM clock radio was his catalyst for a quick change. Delving into the older generations of music; he went on over the years to discover albums, concert tickets and the like at local thrift shops and record stores. A lifelong adventure for him, and a room full of memories. Yep, I personally certify him a hoarder.

Some type of melody is constantly playing in our home, and my husband can reference every band mate, album track, song title, studio session, lyric reference, life span or any other assorted, tiny detail that was musically produced during the given period. A longtime obsession and photographic memory? Yep, that he has.

At some point in time, this true love of music has rubbed off on our eldest son. Our oldest, the one on the Autism Spectrum, had been very, very private about his musical preferences for many years. Until recently. And now that we have set of full on auditorium speakers in the basement? An audiophile’s dream system to play any genre or style of music for the entire neighborhood to enjoy? What does our oldest choose to entertain us with each Saturday morning?

ITALO DISCO! Oh yeah! Sounds just like the same ’70’s hangover you remember from the Saturday Night Fever days of your teenaged years. We couldn’t believe it in the beginning – and didn’t really know where on earth he could have found it…but there he went, playing the very type of music my husband originally tried to duck and run from! When we asked him where he got this music, he looked us in the eye like we were a couple of complete morons, to then dismiss us from the room. He was the one now busy researching bands and the infinite musical details. Yep Hon, that’s your boy.

On any given Saturday morning, “The Maestro” fires up the stereo and serenades his still sleeping family with his personal musical picks for us to enjoy. Around 6:00 am – just like the AM/FM clock radio days of my husbands recollection – we wakeup to The Guess Who, Devo, Wendy Carlos, Queen, Tina Turner, or the J. Giles Band. A long list of eclectic and frankly offbeat finds of his very own. Obsessed with a track or two, we often are required to listen to the same minute of music over and over for a good half hour. Sheer Saturday Morning Bliss.

Of course, my husband feels morally obligated to pick up little gems for our son, a new adventure in finding offerings for him to expand his boys personal music collection. He has gone way passed thrilled to share his decades long hobby with his first born son. Ode to Joy.

Thankfully, my youngest shares my music gene. From time to time, we launch a counter attack with a shot of metal rock….just often enough to make the other two aware that there is current music being produced somewhere “out there”.

We live in our own world, the place we’ve created as a family of four that is as eclectic and varied as our son’s taste in music. We wouldn’t have it any other way, or exchange our Saturday mornings with anyone else. Then again, we’ve threatened him many times, that 6:00 am is a little early for “Whip It” by Devo…………

Aspirin anyone? ~ Wendy Frye

“After silence, that which comes nearest to expressing the inexpressible is music.”
~ Aldous Huxley

Snip

Our favorite photo of our eldest son, aged 13 months, is the one where he is being propped up by his Dad after his first big boy haircut. Splendid moment shared with the gal who’s styled my husbands hair for over 10 years.

Too few years later, when my Mother wanted a shot of her grandkids, all of them together, one for her memory box. Off to KMart, all the kids posed for the camera. The photo of our youngest, just a baby, held by my niece is precious beyond belief. What a beautiful boy, and a striking young lady. My Mom was very pleased.

Our oldest, the one on the autism spectrum, only gave the photographer one shot. Still enveloped, in the basement are the copies – that shot reflects the painful truth – he was officially gone. His eyes reflected the void that consumed our beautiful boy. He checked out, only to return, on his own terms in small amounts over the many years up to now.

Turn on an electric razor, spray water on his head, talk too loud or fast while barbering the oldest triggered the panicked meltdown of the little boy who had lost all control of his environment. Sensory issues with kids on the autism spectrum impede their lives doing most or anything typical. Bath time, toilet training, brushing teeth, combing hair, all of it a living hell on their systems – and the family.

Enter Linda, my new friend and a shining light to our family circle. Linda and her husband Charlie, along with our friends Troy & Barb and (later) their kids all get together at our house every few weeks. We call the meetings “Haircut Parties”. Evolving from a tiny cry for help for my son to a new co-worker – I happened upon Linda professionally cutting hair of a salesman, in the service department of the Mercedes Benz dealership where we both worked. She happily agreed to be of help.

She came to our home. Rolled out her gear on the kitchen counter, pulled up the kitchen chair and invited our special needs son to jump up. She cooed, persisted, and ever so patiently worked her magic over him. She is one beautiful soul. Our boy liked her enough that night to accomplish the only other big boy haircut he’d had in over 2 years. Using only her scissors, it was with the patience and love he felt from her that got him to sit still long enough, to gain the trust of this stranger, letting her finish the job. Oh my, he looked very handsome – we quietly celebrated with smiles and a beer.

It’s been 12 years and we still meet – catching up for dinner and haircuts in our own timely manner. We’ve had several guests over the years, however, the core group remains. Charlie, Linda’s husband has become one of my husbands very closest friends. We all went through fertility treatments with Barb and Troy, their first blessed child that come along was Cole. The twins, Trent and Turner, arriving a little later to complete their family. Growing from babies to little boys. It has been exceptional to know them all.

I never know what to tell our friends to bring to share for haircut night dinners. The menu shifts from moment to moment, depending on what is happening in our lives the very day we scheduled the date. But the rule? It’s understood – come to our house, drop your stress at the door, pull up a chair, grab a drink, play with the kids, tease the dogs, and forget about everything else…we are here to celebrate. Celebrate the life we are living with special friends, good food, cold drinks and the knowledge that regardless of the rest, these moments – the fun and banter – really are what matters most in our world.

We honor you, Linda, Charlie, Troy, Barb and your boys……thanks for being our friends and understanding our beautiful boys. ~ Wendy Frye

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”
~Albert Camus

No Bull

Bullies abound. EVERYWHERE. Take a quick inventory, or deeply reflect upon the people who populate your life. Are all your relationships well and good? Are you working on any damaged links to get back to fine? Excellent! Let’s move on to the rest…..the people in our lives, with or without our choosing, that are known as “Bullies”.

Wikipedia: “Bullying is a form of aggressive behavior manifested by the use of force or coercion to affect others, particularly when the behavior is habitual and involves an imbalance of power.”

Substitute passive aggressive and you’ve got typical human nature folks. Your day is probably studded with interrelations with this type of bully – necessitating an evening of Tums, Advil or a shot of vodka.

Bullies run rampant, many times moving in clusters or groups, and they have a common cause – to keep others from stripping them of their own imagined power over the rest of us.

Locker rooms, water coolers, hallways, parking lots, meeting rooms, playgrounds, cafeterias, family gatherings, churches, schools or any other place people interact – its always the same….someone (or “someones”) emerges as “The Bully”.

And bullies need their allies. The little piss-ant minions who are just the tool the bulls need to rock the equilibrium of their victims. Spy, negate, report, leverage, gossip, lie, bargain, or basically sell their soul to be accepted by the one who rejects the rest.

Is there anything meaner than a pack of middle school girls? Well, those girls grow up to become middle aged women. The elementary school kid who picks fights, suckers lunch money, threatens retaliation on the weak – they too grow up to be middle aged men. These people, the ones who think they have the power, Riggggghhhhttttt (wink, wink)…

These are the individuals who heckle our President and get away with it. The SOB who insults his laborers with with a grinding work schedule, no benefits, and “no hope for you” management style in an economy where any job is a good job. The person you work with that won’t let you finish a sentence because you might be right, and in their mind, that makes them wrong. The evil person who shot an innocent young man down while he walking home from the convenience store, talking to his girlfriend on his cell phone, and enjoying some Skittles. Tragic.

Bullies can be transparent, or obvious – and there is one universal reason why. Abject insecurity.

Consider this, the person who actively tries to destroy, hold back, ruin a reputation, play judge and jury, gossip, lie, injure, damage, pretend to care, or any other nasty thing they can think of to another human being, does not have the self confidence to do a true good deed. Any act of kindness is instantly negated by their historical behavior against their current or past victims. Period.

My son, diagnosed Autistic, does not have the type of ego that lends to being a bully. He is the one who has been bullied most of his life. Entering adulthood, he is a strong and capable young man. I am very proud to say, he is NOT a bully. Our family is learning every day, and we are grateful to be here, together – blessed knowing our purpose in this life.

Let go of “ego”. Live a day without saying (or thinking) “I”. Smile in the face of someone who is being horrible to you. Love your enemy. Sit with the unpopular person at lunch and listen to what they have to say. Dare not to care what people think. Walk away from gossip. Don’t be selfish. Go to church and listen. Stay home and heal. Get out of your own way. Learn to say what you mean and not what they want to hear. Take a chance. Be nice, it really does matter. Push someone else up the ladder instead of knocking them off “your” rung. Choose your words more wisely. Don’t gossip. Don’t react. Dance with the short man who had the nerve to ask. And above all else, remember this, perception creates reality.

Perceive a world without bullies. ~ Wendy Frye

“A lot of people are afraid to tell the truth, to say no. That’s where toughness comes into play. Toughness is not being a bully. It’s having backbone.” Robert Kiyosaki

Man Bag

Growing up, our youngest son radiated happiness like light from the sun. Always curious, engaging, and full of energy was he. A deep mirthful laugh, dimples on his cheeks, and eyes that closed when he smiled.

He loved his big brother. He followed brother all over the house, darting in and out of rooms, always watchful of us all – but especially of his big brother. They shared bath time, dinner time, nap time and eventually therapy time. Our oldest had been diagnosed on the Spectrum when our youngest son was one and a half years old. That’s when our days became full of appointments; speech therapy, physical therapy, occupational therapy, doctors, and on and on. This was our normal.

Somewhere along the way, our youngest son became a serial hoarder. Distressed children do act out in all kinds of ways, and even with the most loving intentions, our house was like a battlefield trying to save our eldest son from the void.

First, he started piling toys in the corner of his room. Next, we noticed he was packing random things around in his underwear. We would look up to the top of the stairs, call his name, he’d fly around the corner (always cheerful!) and say “Hello!” There he would be, only in his Batman UnderRoos, packing an entire toy chest in his pants, with the downstairs TV remote sticking out the back! He was like a little squirrel, collecting goodies and stashing them for later. He would roam around the entire house taking any and everything. Whoa, whoa, whoa! This was out of control.

We sat him down, calmed ourselves, and had a lengthy discussion letting him know that his underwear were not to be used as hoarding device. My husband offered to take him to the shopping mall in the morning to find the perfect “Man Bag”. In the interim he had use of a small athletic bag to replace his “personal pockets”. We were talking so far over his head – just like adult humor in a Disney movie. My husband and I were practically in tears trying to keep our serious faces in place. “Now, give me back the remote, and let’s get ready for bed!”

Ten minutes later, round two tuck-in time, found us back in our youngest son’s room. Where did he go now? We heard a little pathetic cry coming from his closet. Our youngest son had managed to zip himself inside the athletic bag. Hoarder to Houdini in ten minutes flat. We had to be the worst parents in the world.

We didn’t get him the Man Bag. Couldn’t fight nature this time. In the end, we let him channel the way of the kangaroo, his own personal spirit guide. ~ Wendy Frye

(Truth? we surrendered, beat at our own game like a couple of sissy girls.)