Saturday, March 31, 2012

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 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 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.

Wednesday, March 7, 2012

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.

Tuesday, March 6, 2012

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.
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.
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 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.