A cause worth begging for...

April is Autism Awareness month - it is also my least favorite month of the year, which considering my birthday falls into its midst, is a tricky proposition.
For one thing, as the mother of a child on the Autism Spectrum, I'm suddenly bombarded with what I consider fairly glib news coverage of the "new epidemic" or the "silent takeover" or whatever other bad cliche the media can come up with. Statistics are thrown around like confetti at a parade. One in 66 or one in 106 live births will be a child on the Autism Spectrum - depending on whom you listen to, watch or read. I feel singled out every time I come across that turn of phrase. Parents speak out in support of diets, against immunization, clamor for attention, belabor the mystery that is Autism, point fingers. Profiles of geniuses of the past, who likely had Autism, are trotted out - making me hang my head. There we go again, what am I to do if Gus doesn't want to play the piano, climb mountains or think a lot about physics?
I've never been shy to speak my mind - but April takes it all out of me. All I want to do is crawl into a big black hole and hide out until it is May. I'm no activist for the cause - I'm only a mother of a child with Autism.
To add another twist to my April-hate tale, we made the heart-breaking decision to have Gus tested for Autism - you guessed it - in April. Actually on my 40th birthday - so yes, I have no trouble keeping track of how long we have lived with the big A.
Two years. Two long years, full of heart-break, consternation, pain, hope, tears and a good portion of roll-up-your-sleeve determination.
Because in the end, that's all we have.
I'm writing this in the hope that you - friend, family member or acquaintance - can help me be a better activist for the cause that has my child at its center. I want to do my part and hope you can help me make the burden lighter.
Gus has been accepted to a very special camp this summer - a place where trained staff will help him expand his social world view through lots of activities and in an loving environment.
Needless to say, we want Gus to have this opportunity.
But a camp of this caliber is out of our fiscal range.
As you may or may not know, when you have a special-needs child (and I'm saving you my opinion of what overhaul our health care system needs) you are better off being poor and qualifying for Medicaid for your child, because no private health care provider will willingly pay - not without a fight and a lot of paperwork - for all the speech and occupational therapies, not to speak of anything that could be interpreted as "experimental."
Yes, I feel a certain level of bitterness that already saddled with a challenging parenting gig - I also have to become an expert in how to get the most for my dollar when it comes to health care and intervention services.
But enough about me. Gus - ever since he was diagnosed at age 2 1/2, has been working diligently through a variety of therapies and has much progress to show for it. He will always struggle, but he has yet to show an unwillingness to try to better himself.
In a world littered with yesterdays-self-help fad, I want to salute my tireless little child for braving what is against his nature every day and never wavering in his determination to at least try.
Imagine sending a 2-year-old to preschool and getting quarterly, depressing report cards and dire predictions via confounding tests. It takes all the fun out of childhood.
So I'm appealing to you to help me put a bit of much needed fun back into Gus' childhood.
I am collecting donations of items and services for a silent auction held at the Hobnob Restaurant April 27. The proceeds will help us get some matching funds and send Gus to camp. Whatever we raise above the required amount, we want to donate to Camp Lakey Gap, so that other children on the Autism Spectrum, in need of summer fun, can have it, even if their parents can't pay for it.
Be creative, no donation will be too small or too large for us to accept. Whatever it is that you make - as a hobby or for work - or can do. Someone will want to make a bid for it and it will help us. We have already received pledges for hats, massages, flower arrangements and pottery. We want this auction to be as representative of the many talents of the people in our community as possible - the sky is the limit!
Call or text me at (828) 384-1465, e-mail me at ghaldner@yahoo.com or friend me on facebook (I'll friend you back promise) and I'll get in touch with you. Please help me spread the word, forward this, link it, hype it, text or twitter about it to anyone, you think might want to help. Thank you for reading this far. I'm indebted to the many people I have come to know or am related to - near and far. Without you, I could not be hopeful about what tomorrow brings.

Autism Awareness Silent Auction

Gus is a 4 ½-year-old boy, who was born and lives here in Brevard with his parents, Geraldine & Jacob Dinkins. He loves big yellow construction machines, salami, helicopters, cuddles, hide-and-seek, and climbing anything precariously high.

Gus also has Autism.

Autism is a complex developmental disability that affects a person’s ability to communicate and interact with others. As a “spectrum disorder” it is defined by a certain set of behaviors that affect individuals differently and to varying degrees. The prevalence of autism has been increasing, and it is now estimated that 1 in every 106 children born in the United States of America will be diagnose with Autism Spectrum Disorder.

In order to highlight the growing need for concern and awareness for Autism, the US recognizes April as Autism Awareness Month and offers this designation as a special opportunity to educate the public about Autism and issues within the Autism community.

In effort to bring this national cause home to Brevard and to build Autism awareness in our local community we are holding an Autism Awareness Silent Auction at the Hobnob Restaurant on April 27th. We are reaching out to local businesses and individuals with a request for donations of items for the silent auction.

The money raised from the auction will be used to send Gus to Camp Lakey Gap, a summer camp that specializes in providing children with Autism Spectrum Disorder, a summer camp experience in an environment that is equipped to provide for their unique needs. Campers with autism grow emotionally and socially at camp by experiencing social success, trying new things, and being supported in a positive and loving environment.

Because of high staffing requirements, extensive training and time-consuming logistics, the cost of Camp Lakey Gap is beyond the Dinkins family’s current means. Our hope is to raise enough to provide Gus with an unforgettable week of fun and growth at camp this summer. It may take a village to raise a child, and it this case a giving community like Brevard to send a special-needs child like Gus to camp for one week.

Monies raised beyond the cost of camp tuition for Gus will be donated to Camp Lakey Gap’s scholarship fund to help provide other children with Autism the opportunity to benefit from this unique programming.

Please consider donating an item or service to our silent auction to be held at the Hobnob Restaurant, April 27, 2012. There will be wine and beer as well light hors d’ouvres and hopefully live music.

Our hope is to feature the talents of the many creative and innovative people that call Brevard home. We envision this auction to be as varied as the people who live here, so no item or service will be too small or too big – we want to be all inclusive and warmly accepting, just as we want people to be with Gus and others on the Autism Spectrum.

Be creative, if you don’t sell or make goods, offer your services. We are featuring everything from massages, to tennis lessons, to flower arrangements and even a few framed works of art by Gus himself (signed and numbered).

We will market this event in the local media and will have advertising opportunities for your business or talent at the event. We are also are able to provide documentation for your tax deductible donation.

To make a donation, please call us at 384-1465 or e-mail s at ghaldner@yahoo.com. or friend Geraldine Dinkins on Facebook. We will get in touch with you for pickup and further information.

Thank you for supporting National Autism Awareness Month in April 2012 at the local level here in Transylvania County.

And thank you for your help in providing a meaningful experience for Gus this summer.

It's just not fair...

Call it the Murphy's Law of blogging. I wait a few days, stew, then finally decide that, yep, I'm feeling bad enough to let the world know about my hurt.
I rant and, rant some more. Then feel mildly better for getting it off my chest.
A mere 24 hours later, I stand humbled by the good feelings that wash over me. This is when I want to get into my car (which odd as it is, is where I do most of my talking to God), slam the door and say "God, that's not fair..."
Because I complain and complain and really let everyone have it - only to find the next day that I have so many things and people to be VERY grateful for.
God, I sincerely hope, you have a good sense of humor, because I feel very silly right now.
In those 24 hours since I hit the Publish Post button the following things have happened:
One friend, sent me a lovely, heartfelt note that made me cry good tears BEFORE breakfast and reminded me that no one (not even her) is always perfect - moreover neither are our children.
Another friend confessed that I helped inspire her to part-time foster an individual, who very much struggles the same way Gus does. Being an inspiration to anyone for anything is the highest compliment anyone can pay me at this time in my life.
Against all expectations, Gus and I did great in our second play therapy today. I thought we blew it for most of February in our play practice and dreaded our 3 hour (!!!) review, but Gus pulled out all the stops and that made me try really hard, too and the result was breath-taking and heart-accelerating.
We got a call back from a program that offers horseback riding lessons to individuals with disabilities. Even though we are late, it sounds like we'll get a spot, just because...
I went for a good run, tried to think of ways to raise money for a specialized camp for Gus this summer and came up empty (if sweaty). Then posted a ranty little comment on Facebook, only to come back to find a half dozen friends who want to help.
I am so humbled.
I'm going to rant more often.

Mount Autism

"Autism is on my Mind"...I'm printing that on a T-Shirt when I get around to it. Maybe someone already has..."Powered by Autism" perhaps? Nope, too cliche...what about "My other -ism is an Auto"
nahh... no one will get that one. That one limbs and lists all in one.
The point I'm failing to make is that I've been feeling blue about living with Autism for the past few days.
It hits me every now and then, sometimes hard in the gut, sometimes rich with melancholie, sometimes it wakes me up out of deep sleep and graceously grants me a night of insomnia, sometimes I simply can't see anything good...which is bad and I know it, but still, I can't. See. Anything. Good.
Sometimes it makes me want to tell everyone to go jump in a lake, preferrably a cold, deep one and while they are at it, climb up something high before they jump.
I get mean when I get blue.
"Mean when Blue", maybe that's my slogan.
For the past couple of days, Gus and I haven't been on the same wave length. All we create together these days is static snow and noise like you'd see on an old black&white TV in between the channels.
We are dreadful. I tell you.
I spend the day saying "No, don't do that," while he pushes any and all proverbial envelopes he can get his hands on.
Then finally I'm tired of saying "no" so I yell it. He keeps pushing. Different tone, same results. So I switch to sulking and feeling self-pitty. He doesn't notice, because he is busy finding more envelopes to shove around.
When it's his turn, he says "no" just as often. To all my questions and requests, even the ones he should like, such as chocolate, for example. If he isn't busy saying "no" he shrieks demands at me and if I don't hop to it, there is a cover-your-ears-and-run meltdown.
Did I mention we are dreadful right now?
One either yells or sulks. The other shrieks and/or melts down.
Yikes.
Truce comes in the form of videos, playground visits, short walks, feeding the ducks at a nearby pond, or watching heavy, yellow machinery at a neighborhood construction site.
But relief is temporary. Every time we have to do something; put on shoes, take off jackets, leave, stop, walk, hold hands and walk or not walk we descend into disharmony - and we do it fast and efficiently.
Yikes.
So I am feeling blue and mean. Because me and my 4-year-old, going on 2, son can't seem to communicate and find the good in each other.
It's totally mutual, which leaves me feeling like a lousy mom.
Like I need to feel guilty on top of feeling mean and blue.
"Mean, Blue & Guilty". That's it. That's my slogan.
The other day, while I was complaining to God about my lot and how others don't seem to get it (I do this often, I have become fearless about my complaints, I've tried to be polite about it, but I have given up on that and now believe that God prefers me angry at Him rather than me giving up on Him) I came up with a thought (a similie really and I like to think it was inspired by the Holy Spirit) that somehow comforted me in all it's pointlessness.
When I'm blue, mean and guilty I have a hard time filtering out other people's problems as their honest-perceived problems. So when other moms complain about anything, I think to myself "You, my friend, are hiking Mount Elbert, while I - I am climbing Mount Everest and I'm doing it without oxygen, so keep talking I'm all ears and filled to brim with compassion."
Mount Elbert, by the way is the highest mountain in Colorado (14,440 feet) and the reason I picked it, is because I climbed it - twice - with no oxygen, none I had to carry anyways.
It's not an easy hike, but with a day's provision, some good sturdy shoes, a map, rain gear and some determination it can be done and it leaves you with a sense of accomplishment along the way and definitely when you get back home.
Mount Everest, on the other hand (and I've only read this, no first-hand experience here) is a treachourous, scary climb that leaves you feeling sapped and gasping for air at 29,035 feet - and that's only at the halfway point. It requires tons of serious gear, years of preparation, inhumanely strong sherpas, yaks, ladders, tents, teams and logistical geniuses to do at all - and even with all that, some never get to the top and some never come back at all.
That's the trek I have ahead of me parent-ially speaking.
I have to work twice as hard for one-hundreth of your results. I have to endure one Autism professional's pointless prattle and beg another reluctant one to tell me what I can't seem to learn on my own. I'm embarrassed by our short-comings, feel guilty about feeling embarrassed and am no longer willing to leave Gus in the care of anyone other than good friends or family, because I no longer want to try to explain him to someone who doesn't care. I rely on therapists' advise that will either kill me with inconclusiveness or push me one painful step father up the hill -and that's the best-case scenario. I gasp a lot. I feel powerless and tired and emotionally wrought-out and I'm neither looking forward to get to the top nor back home.
I do it, because the mountain is there, as Sir Edmund Hillary, Mount Everest pioneer, so dryly put it. And - quite likely - for bragging rights, since I rarely get to brag otherwise.
But please tell me all about how hard your life is. I'm listening...in my mind though, I picture you jauntily stepping out in a flower-covered meadow, while I'm holding on by my frozen fingers for dear life over some deathly-bluish crevasse...
Like I said, it's a completely pointless similie. Not even remotely fair. I know people's problems are real problems and they aren't telling them to me so that I can belittle them. And I don't want people to stop sharing their problems with me either, but somehow when I'm blue, mean and guilty it makes me feel better.
My mothering is the Mount Everest to your ...fill in whatever mountain you have climbed...mothering.
Not catchy, I admit. But it puts things in perspective for me.
Perspective is hard for me - when I'm mean, blue and guilty.

The Characters that carry

Yesterday I went for a luxurious early trail run and - thanks to NPR and it's cheeky coverage about the upcoming Oscar's - I amused myself by thinking about how some famous actress in California was getting ready to be buffed to a high shine, while I was freely perspiring on a mossy-green hillside in North Carolina.
Then that led me to think about this year's movies and characters I had seen and that I had liked.
And that led me - I love how running with my feet, get's my brain out of it's linear logic, as well - to ruminate on the fact that my son, since a very early age, has always loved the lesser characters of any story he has been told.
We NEVER worry about where Lighting McQueen is (he is under the couch mobbed by dust bunnies, but we know the EXACT location of Matter, Ramon, Fillmore and Doc (neatly in the basket by the door to the living room).
My sweet little son can spend hours gazing into the plastic eyes of Gordon, the very able and hard-working, if at times narrow-minded other blue engine of "Thomas the Train" fame, and imagine where he has been and where he is going.
Thomas, meanwhile, lies forgotten at the bottom of the bin, holding his trains and tracks.
Gus - as if by premonition of his own abilities and limitations - is a champion of the supporting characters that allow the hero/heroine of the story to shine. Those that make the mistakes, or fix them, those who say something stupid only to be corrected, or something wise, only to be ignored. Those whose stories we are left to imagine, because we are almost always only told a few pieces of it.
It's as if he knows that without those supporting characters's small contributions, the plot, the story could not be advanced and the lesson would not be imparted, no matter how much the main character shouts, struts or postures.
It always tugs at my heart strings, when I see him give all his attention, imagination and care to that character, whether it is in a book, movie or even in real life. Gus illuminates that character few other little boys seem to want to be.
There is no Superhero Gus loves. Though he can now identify a few of them (thanks to a certain sweet cousin, several pairs of socks and a few superhero-obsesses boys at his preschool). When asked Gus says their names with little enthusiasm, then moves on to lavish his love on Mo, an itty-bitty dust buster who likes to clean up after WALL-E, and what he might say or do. His eyes light up, every time that little character comes swishing onto the screen.
I'd be in trouble if I tried dressing him in his favorite characters, but on the bright side, his favorites are almost always left on the shelves in the toy isles at Wal-Mart or Target - if they are available in the first place (we've never located Mo).
I have asked and prodded, and though our line of communication does not yet rise to the level where he could explain his preference to me, I sense that Gus likes the smaller characters, because they tend to speak less and appear in maybe just a few precious scenes. You have to wait, savor the anticipation. Work for it and be attentive and observant.
What draws us neuro-normals to the protagonist, the voice, the action, the fact that we get to stalk them in nearly every scene and thought, seems to be the very thing that disinterests Gus.
Heroes are common in his mind, I believe. A dime a dozen. Everyone else already pays attention to them. They speak too much. Move too busily. Are everywhere. Cannot be quiet or observant. Get antsy when marginalized. Could never be the bystanders. When I see other little boys compete over who gets to be the knight, warrior, prince, or superhero. I smile. I already know that Gus will never pursue being the man on the main stage. Never chase that elusive dream of being the main mover and pusher. The kind of dream that sets some of us up for a hearty mid-life crisis, when we realize we're not and likely never will be, while time is running out.
Gus will likely operate in the shadows, behind the scene, standing behind the curtain. Hopefully, in some way or fashion that suits his inclinations.
I feel he naturally knows where he belongs. Where he will shine - in his own way.
In a place, only a careful observer will bother to look more deeply. Where smartphone cannot be apped to go. But nevertheless, he will be doing his small part there to make the hero shine and the story move along.

I hope he finds happiness and fullfillment there. At least that is my prayer. I'm coming to understand that a deeply realized life neither requires fame nor fortune. It's a big lesson and I just learned it myself.

I remember two shreds of other peoples' words that fit with this theme and that were my favorites when I was a teenager - decades removed yet from being the mother of Gus.
The first is a Chinese Proverb, which essential says, "you can only see even the brightest stars when the night is dark"
The other is a line or two of one of the songs in the 3 Groschen Oper by Bertolt Brecht, that talks about how some people stand in the light and others do not. And how we see the ones in the light, not the one's in the dark. Simple but deep if you think about it.

Maybe those quotations I felt myself drawn to at a time when I listened to Madonna and wore my bangs up and out, were the harbingers of my fate and why I am now the mother of the biggest fan of all small characters.

I want to thank the academy of life and the higher power that be for giving me the role of my life.

A New Friend

Monday was - unexpectedly - a great day for me and Gus. So good, I'm worried that the rest of the week may not live up to it's fanfare opening to the week.
It started dull enough with me picking up an extra shift at the restaurant and making just enough to pay for Gus to stay in daycare for nap with a little leftover.
"Just enough for fish food" me and my co-server decided, making plans to let our 4-year-olds frolick in the late-winter sunshine at the nearby fish hatchery, where trout of all sizes vie for room and board - some of it provided by shrieking children, armed with quarters for fish food from the nearby dispensers.

What I couldn't have expected was how much Gus loved my co-worker's feisty little 4-year-old daughter, who didn't hesitate to lecture him on proper fish feeding, took his hand when it was time to go, and chased him with much delight along the adjacent little hiking trail. Gus' face showed it all. Amazement that this little girl loves getting dirty as much as he does, can throw rocks in the river like he can, and doesn't mind playing chase with him, even though he never chases...

We parted for dinner, but made plans to meet at the pool for a late evening swim. Gus couldn't stop talking about the little girl, making me reassure him that we would see her again.

When we got to the pool, she wasn't there yet - Gus looked in every corner and was about to check the men's changing room, when she appeared. He couldn't help but jump up and down on his tippy-toes.

They spent the next hour jumping in the water, holding hands, and helping each other climbing out.

Sarayd may never know this. But Gus did more cooperative play in those 3 hours spent with her, than he has in recent memory with anyone - and she made it all effortless and fun.

One great little therapist.

Child's Play

Watching neuro-normal children play - is literally a breath-taking experience for me. I'm taken aback by how realistic it often is. How dynamic, how imaginativ, how very gritty and complicated with human emotions it gets.
Some of it is downright mean and uncomfortable, like the time I watched a heavy-set black girl with bouncing braids, grab a hold of an obviously popular blonde at the playground with the question "can I be a princess?" only to be told - with a steel-cold appraisal - "no, you are a maid."
And I'm only talking pre- and elementary schoolers.
Gus' play is so much more subtle, often wordless, mostly noiseless and free of messy emotions. Heavily borrowed from books and movies, the narratives move along scripted lines that are strictly observed, sometimes down to who can say what and what toy can be used. He is easily entertained, can occupy himself well for hours at a time and never EVER tells me he is bored.
He does, however, have a heavy reliance on videos for inspiration for his play. Ever since we've been sick before and after Christmas (and during the holidays for that matter) we have slipped into a pretty heavy DVD habit, so much so, that that is often the first thing he requests out of bed in the morning.
It makes me sad, because this sweet boy, just a year ago, would nestle himself into my lap (regardless of what I was doing, sitting or standing up) and request to be read to.
True, I wanted to burn a few books, because we had red them endlessly, but now I miss the fact that he prefers movies to my voice.
Between the movie addiction and the fact that he plays in a highly controlled way, Gus is not a hot ticket in the local playdate circuit, almost all of his "friends" prefer to play with others - and I can't really blame them.
What has motivated me to beef up on the playful side of things - we do academic skills with "homework" already every day - is the fact that Gus is beginning to recognize and appreciate the idea of friends. He is excited when he sees them. He is sad when they leave - but for the most part, he is completely helpless when it comes to woe them with interesting play narratives. He has started to be tender with a Teddy Bear, talking to him like you would to a sibling or friend. I think it is his way to "practice" the whole confusing frienship thing.
I watched him today as two boys his age began to assemble a Teepee. He aimlessly wandered behind both, picked up a limb, but thought the game was about knocking down the rickety lean-to that the two had been working on.
Needless to say. He didn't make a friend today.
So with all that said, Gus and I are now enrolled in an intense 10-month program to learn to play. The program's goal is to give Gus better play skills to take on the road and their tag line is "be your child's best play buddy"
I'm dead serious.
I'm almost embarassed (actually, I'm not at all) to admit this, but I'm a lousy play partner. I'm not animated enough. I'm not silly, nor imaginative. Get me down on my knees and hand me some Hot Wheels or blocks and I go from witty to wooden. I ask Gus a million questions, I quiz him on colors, numbers, shapes, anything I can think of to make the play at hand, a boring academic lesson. I repeat things he says, haplessly and to make things worse, I instruct and come up with my own - perfectly boring - ideas of what we should play.
It's pittyful. And I now have proof of it.
A 15-minute video tape, made of me and Gus at play. It's all part of the play project we are enrolled in.
Basically, a very nice homeworker with lots of experience working with children with autism, visits us once a month and for three hours we play, talk about how to play and model play to each other. She brings toys. Gus already loves her.
And for the most part he stays with all the adult excitement we create around the topic of play.
Brooks (our homeworker) video-tapes parts of all this and then sends me a write-up/critique with the video and gives me oodles of suggestions.
Sounds crazy...it probably is - at least to all you lucky ones out there with responsive children who are in close touch with your inner child.
I have neither.
So I need help.
And after just one visit, I feel like this is worthwile and we can benefit a lot from this.
What we learned so far is that Gus' echolalia (his huge storage of memorized phrases) throws us off into thinking that he can play at a higher level than he can really sustain (example: He'll talk about washing cars, but he doesn't pretend to wash cars...he just talks about it, while moving cars around).
Also, I need to stop teaching and instructing and be more sensitive to his cues (like when he turns away from me or refuses all eye contact). Also I need to work on being ANIMATED (yep, upper case for EMPHASIS!!!) and make it FUN (same deal).
Until our next visit. We are going back tot he basics. Play chase, ball toss, hide and seek, flashlight tag, crash trucks, fill up the dump truck with dirt and fake sleeping (this one is going to be Daddy's specialty) where we are supposed to fall into all sorts of silly sleep poses (complete with noises) and wait for Gus to wake us up (shrieking, startling) then fall asleep - silly - again.
It all sounds so silly, but even for someone as play-impaired as me, being able to play and taking enjoyment from playing is self-evident in its importance. It's how we practice interaction, prepare for tricky social situations. Modulate our behavior and most of all keep our imagination lubed up. Play is where everything starts.
I'm pretty rusty, but willing to be primed.
My goal is to give Gus a love of play and hopefully - somewhere down the line - a few friendly interactions with children, whom he will call friends, even if they don't ever think of him as a friend.
I have yet to figure out why a God, who cherishes a personal relationship with us above all, would create people like Gus, who can't relate out of their own volition.
But that's a topic for another post.