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 firstname.lastname@example.org 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.