Decided

A decision made is only as good as the intention. Well, for this family, our priorities have shifted (again) to care and support our two children – one adult on the autism spectrum and his younger brother. Our younger son? Well, he’s one of the nicest people you will ever meet.

Our intention, distilled and all whittled down to the nub, is to clinically de-stress. De-stress, with a capital “D”. Autism creates a level of unholy stress unlike many different disabilities. Seizures, tantrums, anger, anxiety, and all the suffering is just like an acute case of ‘roid-rage. Not fun, not pretty, and sadly not so uncommon anymore.

We’ve been asked too many times over long set of years if and when he will get a job, or if he will ever live on his own. Most well intentioned inquires, but some delivered via a nasty comments with a condescending voice. Again, all are good questions – for any parent with young teenagers. Our family, and parenting choices, seem to be running parallel with one major difference. The absolute minimum of stress. Our sons will chase their dreams, especially the eldest, without undue stress.

Since late last Fall, around the time of the full moon of September, major changes have happened in our home. We’ve pared down our lives to live more simply and with purpose. Retiring from a toxic and competitive work environment, weeding out relationships that just don’t work and simply living has made it clear, stress is unnecessary, and just plain stupid.

Our eldest son, he suffers with anxiety by just being in this world. What we do know? He doesn’t HAVE to get a college diploma to create his art. No. He. Doesn’t. He wants a part-time job now. We explained that it is a way to be more independent – and that appeals to him. Lesson here: no one wins if he has to be subjected to the battle for college entrance. We concur. The college can win, for now. Our courses have become direct, home-school college. It’s been awesome.

The youngest? He is concentrating on school. As a fourth year German student, we’ve made sure to budget for the class trip to Germany next year. The anticipation is killing him, and motivating him to further his educational goals. He’s the one to watch, Mr. Dark Horse is who he is.

My husband is measuring his career to retirement. While he wishes it was any day now, it’s not too far off. And now, we dare to dream. We dream of moving to a vibrant, culturally enriched metropolis to further feed our adult son with the things that motivate his creative desires. Even our youngest makes mention of being close by and growing our family with his relationships. Wow, that is one of the finest compliments of my life to date.

The bottom line? Well, as humans, were we really designed to handle so much unnatural stress on or bodies and brains? Did the maker see us in his minds eye toiling over numbers, sales and devices making ourselves sick? Was it decreed someplace, other than in our own minds, that we have to settle for “good enough” yet still be unfulfilled? Is it against the law to toss those things that stand in our way of happiness? Is it a flagrant foul to grow a pair and do what you like in this world? No. It is a matter of getting out of your own way.

In the end, Mr. and Mrs. Jones, you can keep your things, your bigger home, your rut in the rat race – go ahead, knock yourselves out. Because I cannot recall ever seeing a U-Haul van behind a funeral Hearse.

Breathe deep, live well and remain intact.~ Wendy Frye

“Adversity is sometimes hard upon a man; but for one man who can stand prosperity, there are a hundred that will stand adversity.” ~ Elvis Presley

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Encircled

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

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

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

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

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

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

I am an Autism Mother. ~ Wendy Frye

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

Slip

Having a young child with special needs tends to slow a family down. It takes time and bravery to pick and choose appropriate activities that can actually be accomplished, as well as enjoyable. Between therapies, school, doctor appointments, processes and procedures – there just comes a time when it is almost critical to recreate as a family.

Recreational activities, you know – the real ones most families enjoy at their leisure, usually after breakfast lasting ’til before dinner. Likely culprits include sledding, skiing, biking, or simply taking a walk. For families like mine, recreation used to fall under “Too Complicated To Conceive”, especially when our eldest, the one diagnosed on the Autism Spectrum, was very young.

Our family sled has seen only 5 minutes of use. The Cross Country skis? Mothballed under the porch. Camping equipment, utilized for less than 24 hours. Multiple bikes have been sold at garage sales, never knowing the pavement after Christmas morning. The horse, tack and saddle were sold after an anaphylaxis reaction at the barn. Considering our track record, it is justifiably deflating.

Well, when our disability services caseworker suggested joining the local, new and nearby YMCA, let’s just say I tried not to laugh out loud for very long. It was a sincere appeal, passes provided with the hope of a little family fun. Okay, I surrendered, again.

For this, in the middle of winter, we tried to prepare. Anticipating every item necessary, for we were going to be swimming inside when it’s 20 below outside. Lugging in a preposterous amount of gear, we waddled ourselves to the pool area. THANKFULLY, a family dressing room provided an adequate battle ground to prepare for poolside war.

WOW! Not just one pool, but two, complete with a spiral SLIDE! Maybe this won’t be too bad. I thought about getting comfortable ( actually – as comfortable as possible in a bathing suit, out in public, wearing the palest version of pale!). Husband took one child, I took the other and we split up. We figured we needed even odds if we were going to kill, blind or maim one or both of the children. I know, I know ~ but you’d be pessimistic too!

Hauling my eldest son to the top of the ladder, the plan was to jump in and go big. To the top! The top of the spiral water slide! My son on the spectrum was, well, suffice to say he was a little bit apprehensive. Me, I have a “dare-the-devil” gene in me, somewhere. Taking him down, like a wrestler, to sit on my lap was my only choice. There was no turning back to try going back down the stairs like a wussy.

Masking his terrorized screams with my screaming laughter at the sheer delight of going SOOOOO fast – we made it to the bottom! Awesome, we did it! I pulled him out of the water and was greeted with a big, watery smile! My son, he too loved it! “Let’s do it again!” we would say in unison!

After two many more trips down, even taking my youngest with us once (Dad at the bottom of the slide for potential damage control) we seemingly (and suddenly) hit our limit. While having more fun than is legal, we may have pushed the eldest a little too long. Exiting the pool, turning to the left, he lost his dinner in the lap pool.

There was no disguising it, he had done the unthinkable. “Will everyone please exit the lap pool immediately for maintenance.” was heard THREE TIMES over the intercom. The signs were placed by the walkway stating the two hour closure to shock the pool. Sullenly, we made our way back to the dressing room and ultimately home.

Poor kid, he was young, overwhelmed, over-stimulated, and unable to control his reaction. Worst parents in the world over here. Considering the trauma, we thought for sure it was going to be another wasted investment for an activity we couldn’t manage. But we were wrong. Excitedly, and not too late after, came the request to return to the pool. Well then, knowing our limits now, calculating the amount of time for proper digestion prior to arrival, we headed back to the scene of the crime. And executed several more trips down the slide, laughing like hyenas and cackling like fools. We, as a family of four, finally found recreation.

“Let’s GO!” ~ Wendy Frye

Wiz

One absolutely spectacular benefit working within the banking industry is a certain pretend holiday, Columbus Day. Oh yeah, falling on a Monday in October while the kids are back in school, husbands at work….Columbus Day HAS to be the best, employer paid holiday EVER known in the United Sates of America.

A couple of years ago, while employed with a local credit union, another Columbus Day came along. The time was ripe. My son on the Spectrum had shown me twice the venue he wanted to visit. His younger brother, an absolute super-hero, was good with the idea. So, we sprang it on him. Booked an overnight flight to Vegas (Baby!) to visit the unknown-to-most Pinball Hall of Fame!

You know the song, Pinball Wizard. Well, the guy with late onset autism, he relates. The self proclaimed “gamer” regressed, technologically speaking, into loving pinball. So hey, just try finding an operating machine thats not in a dive bar or other establishment that discourages a 16 year old young man from living his passion. Not easy, any day of the week. But try we did. So with his research and discovery of the “Hall” lie the path that will lead us to pinball Nirvana.

Om. (Clang Clang!)

Within fifteen minutes of our arrival to Vegas, we were surrounded by two hundred plus pinball machines. All workable and playable, spanning from the oldest to the latest, WOW! Can you say sensory overload? “MOM!” “I need a quarter!” was the last I heard from him for the eight hour shift.

It really was my idea of idyllic, a wonderful way to spend a weekend with my son. Besides the “Hall” we went to the art showing at the Bellagio, ate crappy pizza, had dinner for breakfast and pillaged the arcade at our hotel resort.

Returning home exhausted at 2:00 in the morning, I drug it to work the next day and managed to play off that I hadn’t slept in 24 hours. Arriving home, ready to collapse, my eldest son yells for my attention from the basement. He’d found it, a new Nirvana – the Coin Operated Museum in San Francisco!

“When can we go!” ~ James Frye

“If some people didn’t tell you, you’d never know they’d been away on a vacation.” ~ Kin Hubbard

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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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Leverage

Three little words in our home are equal in power to any weapon of mass destruction. The biggest and oldest of our two Bichon Frise, Annie-Annie, not only understands what we say, she buys into the power of persuasion when it comes to her Daddy.

Weekend mornings, she lays in wait, listening for any of the three, harmless little words. “Go.” “Walk.” or “Leash”.

Sometimes, when the Bichons are outside, my husband will whip open the slider and simply raise the leash like a flag – a beacon of hope that Annie has not been forgotten. Other times, the two will have a elongated stare down. The subliminal hope in a thought that she will get to strut and brag with her beloved daddy down the street.

Then, those mornings, when the moment seems right. I whisper a key word under my breath. Ever vigilant, she typically looks at us in disbelief. Of course, I cannot say with all certainty that my husband is ready for a little jaunt, however, there is no turning back the clock to the moment before the “mistaken” utterance. “Oops! Sorry Hon.” I mock wearing a devilish, sideways smile.

“Well then, I better get my shoes, and you better get your leash.” ~ Dan Frye

“Peeves do not make very good pets.” ~ Bo Bennett

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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

Eve

Oh ya, my youngest son, he thinks he’s so clever. Every year on Christmas Eve we open a present together in the morning to get the holidays rolling. Even as a teenager, my youngest son shakes, stalks, snoops and generally regresses into that gorgeous little pain in the ass toddler he once was.

While wrapping presents in my room, he makes 27 “necessary” trips through to the bathroom, in just as many minutes…hoping to get a glimpse of any gift left out. Over the last two weeks he’s been considering just what gift he would open. Upon disclosing his choice, I snickered. He was certain it was a vinyl album. I asked him why he thought that. Well, the dimensions, lack of bounce upon the shake, and the general size of the box certainly gave it away.

This morning, the youngest rolled us all out early to get the preliminary-holiday-one-gift-unwrapping STARTED! We waited for the eldest sons response to his choice ….it was a hit! The Men Without Hats Silver Collection – we’ve all been singing along to the “Safety Dance” – oh come on, you remember their 5 minutes of fame back in the ’80’s don’t you? I don’t know where he gets this stuff.

Now. Comes. The. Moment. He. Has. Prepared. For. All. Month. In one fail swoop the wrap, bows and sides of that box threw up its contents. Wait for it……wait……WOW~! It was a sweater. A nice, sensible sweater in black. Son deflates in northeast corner of home. Parents roar, brother laughs and heads down to serenade us with techno-pop hits no one remembers. Younger son is granted a do-over. Life is good.

Happy Holidays! ~ Wendy Frye

“I like to compare the holiday season with the way a child listens to a favorite story. The pleasure is in the familiar way the story begins, the anticipation of familiar turns it takes, the familiar moments of suspense, and the familiar climax and ending.” ~ Fred Rogers

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