YOU ARE

My son, the one on the spectrum, isn’t feeling himself today. I’m home with him, sorting through old papers and such, and happened upon a couple of age worn poems written by my youngest. WOW, I honor my youngest. Please enjoy his works with me, all sloppy and teary as I am now….

YOU ARE

I think you are friendly.
I wonder if you are a super hero.
I hear you laugh.
I see you smile.
I want you to be happy.
You are great.

I pretend you fly.
I feel you give a mamas little baby.
You touch me.
I worry that you cry.
You cry water.
You are smart.

You understand James.
You say nice things (some times).
I dream that you play football.
You try to make us happy.
You hope we grow up.
You are wonders.

YOU ARE great, HAPPY FATHERS DAY!
love, Jon :)

by Jon ~ aged 8 years old

WENDY

Daughter of Kent and Sandra
Sister of Melissa and Paula
MOTHER of Jon and James
Lover of my family
Maker of crafts
Dreamer of James and Jon to gragat (graduate)
Fear of Heights
Player of big Kahuna Reef
Giver of kisses and smiles
Watcher of unwrapped and survivor
Listener of rock and roll

Love, Jon

by Jon ~ aged 9 years old

You are becoming a fine young man, Jon ~ Love Mom

“Each day of our lives we make deposits in the memory banks of our children.” ~ Charles Swindoll

Levi

Today, I am aware again. My youngest, the super hero of my children, who has risen to be a fine young man – proved to me that my parenting skills for my neurologically typical child are not subliminal to the point of failure like I assumed. After all, he is 16, super smart and kind but really, he has not come through this Autism thing with his brother unscathed. Oh, sweet Jesus, not by a long shot.

But today? Today I learned he has some additional values previously unknown to me. Amid the stress and anxiety over the amplified life with his 18 year old brother on the spectrum, he seems to be acquiring more than just life survival skills. Wow, two hours with my youngest and I’m aghast over what I’ve missed about him previously……

Seriously, we simply went shopping for school clothes. Before we went to the mall, my husband and I just came back from picking up tomatoes to make home canned pizza sauce for his brother. He just appeared outside the house. Yes, he wanted to go to breakfast with us this morning. Seriously? It wasn’t even 11:00 and he was up, showered and ready to go?!? Not my youngest son, really?

Dumping off Dad after pancakes, we went to a local department store. The kind of store that sends ads out practically every day with sales and cash back promised for even thinking about shopping there. I wanted to drill down any kind of jeans that would work – so I suggested the swankiest store in our city. Nope, not there. Not now, or ever he said. But, I explained with his body form, like my shoe size, if you can find something that fits and looks good, it does not matter how much it costs. Seriously, I remember having the same jeans size as he does before I had children – like when I was in grade school. (What the hell?!?)

Wow, the conversation commencing about sweat shops, the audacity of paying over $100 for a piece of clothing with that notable name tag, and the rash he developed just driving by Walmart. I can’t reiterate here…..mind blowing. Again, I am a humble mother, reveling in the amazing spirit of one of my children, the super hero of a young man who deals with autism every day.

Thanks Jon. I had fun today – for less than that pair of notable jeans we hauled out a bag of loot to last you into spring. The conversation? Priceless. I love you kiddo, I really do.

So Big Bad World, be warned. You can’t buy off my youngest, this is what I just learned today. Just because I haven’t given him all the attention he was deserving of, he doesn’t resent it. In fact, he has a balanced and healthier view of the world for it , I guess.

Again, Wow! – everyday does provides a lesson, if you listen. ~ Wendy Frye

“I’ve never let my school interfere with my education.” ~ Mark Twain

Admissions redux

I am one of “THOSE Moms”. The mom who was pushed (slammed) into a corner with a diagnosis of Autism for my child. The diagnosis period for our son was dragged out over his second year and into the third – needlessly, on a step system (Global Developmental Disorder, PDD-NOS, etc.) to finally land on ASD, moderately affected. Since he was meeting major milestones, it wasn’t necessary to address his regressive language development – so we were told. This was 1998, putting this into perspective, the book Special Diets for Special Kids by Lisa Lewis, PhD, came out ONE month before our son’s diagnosis.

“Mrs. Frye, there’s no known cause for your sons developmental disabilities, and no known cure for him….just get him through special education and get him ready for an institution. He will have a “qualified” future living in a group home. P.S. Mrs. Frye, can we take some blood for genetic research before you leave?”

Driving 300 miles home, in our mini-van, I wondered what does this “Autism” thing really mean and why am I so scared? Arriving late in the evening, we instantly (instinctively?) ran downstairs and searched “Autism Cure” on Google. (I’m sure anyone reading this article can imagine how heart wrenching that evening was.) We actively mourned for about 24 hours and then got extremely pissed, and formed our anger into action. What action during what I so lovingly call “the lost decade”? The good stuff, biomedical interventions as well as sensory therapies – old school style! We were shooting from the hip – and not taking it from anyone wearing a white coat. Does any of this sound familiar?

First, my husband and I will never be convinced that our previously healthy, happy boy was born this way. He was well and over a period of time started slipping deeper and deeper into poor health. We started asking questions during the last two years before “the final diagnosis”. Those questions were answered with shrugs and denials for treatments. We appealed our insurance company’s decision – complete with a dog and pony show….it was miserable, looking back. Absolutely and certifiably 100% miserable.

Ultimately, WE made THE executive decision as his parents DECIDING that WE would do to get him back to healthy BEFORE concluding any lifelong, abrupt diagnostic ending for our boy, THANK YOU VERY MUCH! To this day, that was the BEST decision WE ever made. Our family has coined the phrase – “Juggling the Astronaut”. That’s what we did, juggled our son who was attached at the end of a cord, a lifeline if you will, through space and time to arrive here, back with us.

I would like to share here some of our home-grown (but not so random) therapies, supplements, processes and procedures that I researched and implemented with my young ASD son. By trial and error, directly or indirectly these things WORKED and helped him REGAIN some of his health and to ultimately grow into the HEALTHIER and HAPPIER young man he is today.

***DISCLAIMER***

This is not health advice (blah, blah, blah). I am not a licensed health professional, so just like everything we do for our kids, please research and determine if any of this has value to your family and children. And remember this was the 1990’s, there just wasn’t the support available with only 1 in 10,000 families with Autism in common. So take all this with a grain of salt or a glass of wine, and thank all that is good and holy that we have a better understanding of how to heal our children.

Where did we start?

First item on the agenda was to tackle was our son’s severe allergies that presented as nasal congestion, plugged ears, and horrible eczema. Our baby boys’ immune system was out to lunch. We did not relish giving him prescription and/or over the counter anti-histamines while his nervous system was struggling to develop. So we looked for viable alternatives. The best thing EVER for scaling back inflammation and slowing down the inflammatory response was MSM. I read the book, The Miracle of MSM by Stanley W. Jacob, MD, and never went back to conventional allergy meds. Over time his skin condition improved, sinuses dried up, asthma abated and he felt better than he had in a long time. The BIG plus? – We were also supplementing bio available sulfur to aid his liver function around his phenolic sulfatase deficiency.

Best bath soak in the world: Queen Helene’s Natural Mineral Bath Salts in Lavender. This gem of a product has been around for decades and contains not only magnesium sulfate but real sulfur, lithium and natural lavender oil. Whoo-hoo! My son was not swallowing pills at the time so everything became a topical application or ground up and swallowed in a beverage. When I smelt the real “brimstone and fire” smell of sulfur in the bathroom I was thrilled! It is one more arrow in my quiver to treat his phenol sulfotransferase deficiency AND eczema. The lavender oil has antiseptic properties and the lithium? Naturally occurring lithium is an excellent mood stabilizer. After his bath my son was somewhat relaxed and ready for bed! Thankfully this product is still in production, stocked in nearly every drug store across America.

My son wouldn’t (or maybe couldn’t) swallow pills for the longest time. As a work-around we resorted to “cereal bottles”. We cut the nipple off midway, filled the bottle with warm rice cereal plus apple juice to conceal whatever powdered vitamins and supplements we could include in his snack. I used a dedicated coffee grinder for pulverizing – and still do while compounding his vitamins to this day. Who really cared about weaning a 3 ½ year old off a bottle when it was the only bridge to health available? Not us.

We spent our tax return on what had to be the last vial of Secretin on the market – had it compounded by a pharmacy with DMSO as a carrier. It really did help our son. As a replacement I was able to locate and supplement freeze-dried porcine duodenum to aid his digestive health. There are several products still readily available as alternative medicine.

Best “quick “education:

The Institutes for the Achievement of Human Potential, Brain Injured Child Course. I learned enough in that one week parent program to move forward and choose sensory therapies that made a serious and positive impact on my son’s discombobulated nervous system.

Sensory therapies:

Berard Auditory Integration Training. We found Marcie, a therapist, who was travelling through different cities administrating the training. It was thrilling to see the documented improvement in the quality of sound my son was able to hear.

Sensory Learning Program: Mary Bolles method. We spent 12 days in a town about an hour from where we live to take the program. While I learned at the Institutes about brain injury and the amount of effort that it takes to reprogram a previously healthy brain, I had to work full-time and couldn’t implement the full days of therapy necessary to help my son. But with the Sensory Learning Program all modalities of sensory input is implemented within each session. My son simply lay on a table that rotated to stimulate his vestibular system. At the same time there are flashing colored lights on a random cycle to stimulate his visual pathway, all while listening with headphones to chopped up music as in AIT. This was the best therapy EVER. Surprisingly, he was a willing participant. I worried about over stimulating him – but he actually enjoyed the process.

Binaural Beat Brainwave CDs from Hemi-Sync, a Monroe Product: These are outstanding works of art for deep brain stimulation via the auditory pathway – a different take on AIT. I catch my son using these products to this day.

Good Reads:

I found many helpful books at a local used book store. Treasures included a pediatric gastrointestinal medical book from the UK dating from the ‘60’s. Also, another favorite of mine is Let’s Get Well by Adelle Davis – plain and sensible information.

The Singin’ Pole is a good read by Doris Wilson Adams – I met Mrs. Adams in person doing a signing of her book. Her story is our story too – just decades older. The measles/mumps correlation made by the author and her son was very interesting……

Favorite whole food supplements:

I want to offer my favorite nutritional trick for the picky eaters out there. Chia seeds aka salvia seeds. Those seeds have some of the most magnificent nutritional elements I have ever run across. Rich in good fats, high fiber and protein, excellent for gluten free cooking – it is a powerhouse of goodness! In our case, my son really likes pizza. So, to clean up his diet, I make homemade tomato sauce. For a healthy addendum; I grind up and toss in carrots, broccoli and cauliflower as well as a ton of garlic as well as chia “gel”. When soaked in water, chia seeds form a dense gelatin like substance that is slightly sweet – which is perfect to put into the pizza sauce. He doesn’t even know – and there is no telltale evidence he can find.

And lastly, I’m growing Sea-buckthorn plants in my garden. The oil is superior for sensitive skin. The nutritional properties are renowned and all health benefits cross over to the health needs of our son. There are too many benefits to list – so please, research it, apply it, eat it, juice it and maybe even grow it!

I haven’t attended an AutismOne conference, yet – but certainly plan on it next year. I still have so much to learn – and to this day lament what we could have tried to further assist our son with his health. What a feeling it has to be with so many people in one place, with the same passion to heal our children.

This fall my son and I will be on our way to college. He graduated high school this year, all the while he was in special education – he was even awarded the Superintendents medal of achievement. The astronaut in him is still there, he flies high in his mind to places we can only imagine. Looking back we know his success is this: he truly lives with passion, perusing an art certificate, to ultimately create his own mark on this world.

~ Wendy Frye

“Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work; we must all work, to make the world worthy of its children.” ~ Pablo Picasso 1881 – 1973

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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Relations

When your family (immediate and extended) receives a diagnosis of “Autism” (seriously it doesn’t even BEGIN to matter where on the spectrum) ALL things change. The changes evolve in daily living, future plans and especially in the way one relates to the world.

Within the mindset we CHOOSE when our son was diagnosed 15 years or so ago, the mindset to heal and support his pursuit back to well, most of our superficial relationships fell off a cliff. Our extended families remained, and we stood still, for the most part, in “social time”.

Moving forward to today, when our boys (the astronaut and his heroic brother) are healthier and more mature, we are beginning to breathe again. Still we live in a certain and special framework, but are beginning to live a little more out loud. Life is good. We know it, and live it. Life is good.

Today, I just know that Zuckerberg got it right. The mighty, mighty Facebook really is AMAZING. I have to be one of the last people in the world who held out, never had the “time”, didn’t have the “gumption”, and wanted my “privacy”. Whatever. WOW! It is because of Facebook that I am inspired to write this blog entry. Since my social life fell off the cliff, it is a little simpler to look back at the relationships that really matter – and have been valid all these years since our “autism” diagnosis so long ago.

Initially, I had a handful of people to add to my “friends” list, sincerely they are the most important in my life.

For instance:

Janice, my first “other mother”, who nurtured me spiritually, told me OUT LOUD how cute I was and supported my friendship with her youngest son, Trent. Trent, my very first friend, who I re-connected with on Facebook a few months ago – he was and IS a superior educator. When I was in kindergarten and he was in 1st grade, it was Trent who took the time to tutor me in fractions. Yes, I was able to understand fractional math at the age of 5. I will never forget that moment – after I worked so hard in my bedroom to spell and write my name – that Trent went on to demonstrate how much more there is to know and learn. My first friend, Trent Ling, has gone on to surpass his education from Duke University to further educate the world. He shines brightest in the pictures of himself and his beautiful family traveling all over this world, and I am so proud to know him and someday I hope to meet up again with him and his family.

Trent’s family friend, Mrs. Shelley, was best friends with my now “other mother” Cynthia. Mrs. Shelley drove me, at the age of 5 or 6 years of age, between where Trent lived and where I live now. Mrs. Shelley, who was best friends with Cynthia, (my next other mother) knew I was so alone in this new place, wanted Cynthia’s kids to know me, too. What a boon! My other mother’s daughter, Jenny and I have been friends from that time to now. Cynthia’s youngest daughter, Laina, son Damon and I all still friends to share and celebrate family events. Thank you Barbara….I honor you here and thank you for your kindness and help when I was so young……again, I thank you.

Last night, Jenny, my long time friend, posted a picture of her Dad, James, on Facebook. It was his birthday, and she was reminiscing how long he had been gone (over 18 years) – I was so moved seeing his picture that I cried. I never cry….it is not in my soul or nature to do so since my son was diagnosed Autistic. Talking to my husband tonight, telling him how undone I was about the post of Jenny’s Father, my “other father”, reminded me to be grateful and thankful for the relationships I have, have had – and will always have in my life. Those enriching relationships where we will take a bullet for our friend – surpassing those who we would hold up as a human shield when fired upon.

Thank you, Janice, Trent, Cynthia, Barbara, Jennifer, Laina and Damon. I honor you all, here. Again – it really is within the relationships we have that we grow to be the people we are. I again, thank you all…… ~ Wendy Frye

“Train a child in the way he should go, and when he is old he will not turn from it.” ~ Proverbs 22:6

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

Evensong

My boy’s grandmother passed before I met their father.  We sometimes wonder what our lives would be like if she were here, living and knowing her grandsons.  Her eldest grandson, the one who’s been called autistic, who bucks that status quo every day, and her youngest – the most dignified wise-ass you will ever meet.

I hear stories about her and what life was like before, with her in this world.  The wonderful story that involves a woman living with a cancer diagnosis for 17 years longer than predicted, and her sense of fun and humor that sustained their days and extended her life. 

I can only imagine how wonderful it would be if she were here, sharing in our belief that this life is a good life, regardless of our supposed “challenges”.  She would likely remind us, with our without words, that every day is a good day when you wake up, open your eyes to see the morning, get out of bed with legs that stand and allow you to walk downstairs to greet your family.  Your family, the same people you see every day that cares about you and your welfare.

She would have to laugh out loud at her sons antics with her grandsons – like today…. our oldest son chooses not to answer the phone when my husband called to check up on him.  So, when he finally got through to our autistic son who stayed home from school, he disciplined him for the indiscretion.  It wasn’t too much later our son called my husband back on his cell phone.  Yeah, sounds like the eldest decided to call his dad out for his own lack of phone manners and rudeness that laced his worried voice.  His father’s poor behavior cost him hamburgers and a vanilla shake for dinner.  I don’t think grandma would take this exchange for granted knowing how far that grandson has come to make that call. 

Our two little white dogs would have tickled her funny bone.  They are her son’s girls, mark my words.  If she could watch him carry them around in his arms, just like he did our boys when they were babies, cradled and safe from harm.  She too had a little poodle dog, named Snoop.  My husband laments that dog to this day for being so crabby with everyone but his mother. 

My late mother in law was a kindergarten teacher.  Her son followed in her footsteps and has carved a career out of teaching elementary aged kids their ABC’s and 123’s.  Sometimes I meet past colleagues and students of hers while working in a local teacher’s credit union.  When I ask if they knew her I am always told how radiant of a person she was and how deeply missed she has been.  Just last week, an old friend of the family shared the story of her “jelly buddy” that popped out of her swim suit top while they were having drinks in the hot tub.  Always, I’m told, she armored up with humor regardless of how she felt. 

I know she would be as proud of her youngest grandson as we are for wanting to follow in his families’ footsteps and be the next generation to work as a professional educator.  He’s working to be a history professor, and we believe he will be one of the very best.  His sharp wit and improve style of humor adds that certain something to every conversation.  I hope she wouldn’t be too worried that he has had to grow up so fast and seems unnaturally responsible for his age.  We know he’s got his wild streak….he is just clever enough to wear his invisibility cloak at the right times, in all the right places.

 While my husband misses her, sometimes intensely, my kids and I miss the idea of her.  I don’t think she’s too far away – I believe she’s right here, with us.  She sits with us at the dinner table, laughs at her son’s quick witted jokes, watches her grandchildren grow and prepare for their future endeavors, and finally – she believes, just like we do, that life is a gift worth living.  ~ Wendy Frye

“Life consists not in holding good cards but in playing those you hold well.” ~ Josh Billings

Given To Fly

April is National Autism Awareness Month in the United States. Autism appears in the first three years of life and affects the brains normal development of social and communication skills.

Today, the day I’m writing this piece, the Center for Disease Control reports that 1 in 88 children are diagnosed on the Autism Spectrum with 1 in 54 boys affected. Is it just that more children are affected with the disorder? Or more cases being detected? Good question, but not one I’m going to attempt to answer here.

Here, I would like to thank the many people who have supported our son, a wonderful, talented and humorous young man, My son. You see, My son is a graduating senior in high school this year. He’s passed his standardized testing requirements, kept his grades up, and is going to walk with his classmates to receive his diploma. Sounds pretty typical, right? Well no, not this time, not at all.

He was a beautiful, healthy baby born at the local hospital. We were the proud new parents of this clever, happy boy. Developing well, meeting and beating all his milestones on time, we became very concerned when he started turning so ill, allergic, and quiet around 18 months of age. In those days, this was a very uncommon situation and a deep sense of confusion became our new norm. Were we scared? Stunned stupid.

Subsequent to his diagnoses of moderate Autism Spectrum Disorder at 3 1/2 years of age, we decided as his parents that this was not about us. It is about him. To regain his health, his development, and his life – and just how he was going to make it a good one. Were we crazy? We’ve been told so.

The starting point was his first official physical therapy appointment. Stripped down to his diaper, facing a sensory obstacle course, he mustered all his remaining courage. While making it to step two of ten he passed out, fast asleep. The shock to his system overwhelmed him so much he just shut down. This far behind the rest? Tragically so.

Our son started his school career at 3 1/2 years of age. His allergies raged for much of his young life. He didn’t have much to say until he was about 6 years old. He had a personal speech therapist for 11 years and a string of school teachers, aides, and assistance provided to him almost daily. Speech Therapy, Occupational Therapy, Physical Therapy, Food Aversion Therapy, Behavior Therapy (just once, he was sick not defiant), and an assortment of medical treatments were embedded within the moments that fill his childhood memories. Were we sad? Seriously? Don’t go there.

My husband, a teacher himself, and I were invited to an Autism workshop hosted by the school psychologist at our sons high school. It was a room full of educators, counselors, administrators and others interested enough in the subject to attend. We were wide open for Q & A from this crowd. What is it like to have a child on the spectrum? Wow, how to explain?

Does he know? Yes, he does and he gets self conscious in some situations because of it. How about his brother, what is their relationship like? Solid, his younger brother is an outstanding man of his own – they wrestle, bicker and tease somewhat like other siblings do. A good day memory? The day he lied about eating the Fritos. That brand of higher cognitive function was welcome in our home. Did we think that teachers should point out the autistic students and discuss behaviors with the other kids in class for understanding?, What do you think causes Autism?, and many other valid questions – to understand an autistic student better.

Mostly, we credit our son with his amazing life story and turn around. He is the master of his own soul and the driver of his own development. He participated in therapies and took the medicines, suffering through it all. But not by himself. Never alone…he had us, his family.

The perfect opportunity was presented that afternoon. An opportunity to personally THANK those people involved with his education. The outstanding, dedicated staff that has helped shape a young man who had so far to go to get here, his pending graduation. We thank all the special people who got to know him, share his offbeat humor, develop his passion in the Arts, and calm him down when he lost his temper. We truly appreciate you all – right now and into the big, bright future of our boy.

When our son was diagnosed some 15 years ago, it was a 1 in 10,000 chance to win the Autism lottery. Today, the CDC announced the odds are now 1 in 88. One child is diagnosed on the spectrum every 20 seconds. This April, let’s all hope, think and pray that someday, we will not be living in the age of Autism.

~ Wendy Frye

“And sometimes is seen a strange spot in the sky, A human being that was given to fly…”
~ Edward Vedder, Pearl Jam

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

Victory Lap

After we received the diagnosis that our son fell somewhere on the Autism Spectrum, we enrolled him in our local school districts developmental preschool.

He was three and a half years old. Between preschool, kindergarten, elementary school, middle school and now high school, our son has had a long period of learning.

Most of his teachers have been wonderful. The heart of the student always shines warmest when surrounded by the dedicated staff in the special education department. When someone connects, and I mean really connects with a person with autism, magic happens. And, the one to one aids? Those special individuals deserve their own blog. A mere mention here is insufficient to their calling.

Key player two in the school? The nurse. Quite a few students with disabilities are medically fragile. Our son proved to be the same – allergic to our world for many of his first years.

Epi-pens in every room, locked in a box. Later, he packed his own (not like he’d stab himself) but just in case of an emergency on the bus or outside the classroom. We received quite a few emergency calls, and in the beginning, you’d find my response akin to a full blown panic attack.

So now, many years into the game, well – let’s just say it’s not my first rodeo. Paramedic crews at my youngest sons middle school commented to the nurse that I really was “under-responsive” telling him over the phone that “I’ll finish up what I was doing at work and then come by the school to collect my son.” Heartless? No, just the rodeo queen wondering why my son decided to try a kiwi, during school lunch, when he’s had the same things for lunch AND dinner for the last three years eating at home. Still don’t get that one.

Imagine me, with my “under-responsive” pulse when my oldest son’s special education teacher calls. Oh, “Hi Brenda!, whats up?” “Everything is fine.” (translation – no one is going to the hospital today) But, she really needed to tell me the good news. Our son, as a sophomore, HAD PASSED HIS STANDARDIZED TESTING TO GRADUATE HIGH SCHOOL!!!!! While it takes many typical students a couple of shots to pass, our son hit the ball out of the park the first time. (Okay, not to exaggerate, he passed under his own development level, but he passed it the first time, dammit!)

I sucked in my breath and while it was really beginning to sink in, the sheer magnitude of this accomplishment, I started rewinding in my mind, back to his first day of pre-school – his dire diagnosis, the long processes of recovering his health to exhale my sincerest “Thank YOU” to her. She, as well as all his past educators, get as much credit moving him up and along the road as he does.

“But…” his teacher says….he passed all three recommended categories, and missed the fourth by a sliver. Even though it didn’t matter if he passes Science, he still passed the testing to graduate. Oh, whatever, I started to think.

Well, my son took the news a little differently about the Science portion of the testing. He was PISSED! He had worked so very hard, over many years, and unbeknownst to all of us – really cared about his level of work and ultimate graduation from high school.

According to his teacher, there was absolutely no reasoning with the young man. He has his father’s temper, Sicilian to the core. Unable to express himself he started running around the common area of the high school. Six foot four and 250 pounds of pissed off student circling the building. She told me that they couldn’t get him to calm down and PLEASE, can I come and get him?

When I arrived at the high school, my alma mater no less, his teacher met me at the door. She and I were giddy with the excitement that he had passed testing. She told me that a couple of other teachers were helping keep him calm. Oh really, it looked like the entire football coaching staff was in the office to be disciplined by the principal. And sitting in the middle chair, was my son.

Classic moment for teasing. “Really (son’s name)? You are PISSED that you didn’t pass science?” “Last time I checked you thought your little brother was a nerd liking that stuff.”

He grinned – the grin of a young man ready to move forward and teach the world a thing or two about what it’s like to be him. I can see him in my minds eye, running around the hallway with the adrenaline he’d held all these years – and the coaching staff groaning that he wouldn’t rush the defensive line. Irony? Perhaps – I asked him about playing in a football game for me – he thought I was out of my mind. “I’m an artist! I cannot risk injuring my hand – are you insane?”

No, not insane son, just gaping in awe of someone as amazing as you…….
~Wendy Frye

“I feel we are all islands – in a common sea.”
Anne Morrow Lindbough