Wednesday, April 02, 2008

Awareness...

Today is World Autism Awareness Day. This bitch was surprised to learn this. Clearly my ass is no longer on the autism news mailing list (wink). But I’m all for awareness and in that spirit this bitch shall share a wee autism story with y’all.

My older brother Bill is profoundly autistic. He was the first born so my sister and this bitch have always lived with autism in our world. Bill is aphasic…hyper active…and, other than a wicked case of autism, perfectly healthy (thanks be to God).

When I was a wee bitch I used to think Bill was faking.

Blink.

Oh fuck a duck...he’s my older brother and watching him get away with all manner of bad behavior and tantrum throwing made me question why my ass was acting normal. Shit, it looked like the ultimate hustle to me at the time.

Anyhoo, Bill used to raid the fridge for goodies and never get in trouble. Let a bitch score some cookies and my ass was grass…but Bill was “autistic”, so he could inhale all my Girl Scout cookies prior to delivery (drama!!) and a bitch was supposed to explain that shit by saying “well, my brother ate them…he’s autistic!”

Ugh.

One day, while my mother was trying to grab a nap, Bill made for the kitchen. I ran in after him to stop whatever feasting he was about to get about the bitness of doing. We had a brief tug of war over the fridge door and then he started spinning and screaming. He whirled and whirled about the kitchen, waking my mother and getting this bitch into a world of trouble.

I fled to my bedroom where I proceeded to get a monster sulk on for an hour or two. When I came out, my mother was sprawled on the living room floor staring off into nothingness. She looked so tired and so dejected and I just wanted to make it all go away. But suddenly the silence hit me.

“Mom?” I asked.

Nothing.

“Mom, where’s Bill?”

Her eyes went instantly alert and called for him but got no answer. She jumped up and ran out the back door.

No Bill.

She ran around the house shouting for him.

Nothing.

Frantic, I made for the front lawn and there he was sitting square in the middle of it buck-naked eating an apple.

And there it was…the relief and the love. I sat down beside him and called for my mother who stood before us in nothing but a bra and a slip, the midday sun shining down like a spotlight on our perfectly imperfect drama.

“Where the hell did he get an apple?” she gasped.

I laughed, too relieved to be embarrassed that my brother was naked on the lawn and my mother was in her underwear looking crazy with sweat running down her face and her hair standing up in tufts.

“Who the hell knows?" I replied. “He’s autistic.”

Sigh.

My brother has been autistic for more years than I have been alive. He has dreams we don’t know about, concerns he’s never shared and the kind of personality that makes strangers smile when he steals their soda pop at the McDonald's.

Bill is not a cure that didn’t happen…he is more than the treatments that failed…he is my brother.

May everyone with autism in their world find the laughter within the frustration, the joy within the pain and the strength to love a different kind of normal.

That is the ultimate awareness of autism.

16 comments:

Yankee, Transferred said...

I love you for this post, and blessings on all of the bitch family heads.

lilalia said...

My nephew is autistic (not severe) and my brother and his family do much to pretend it isn't all happening. They do not seek help from professionals and that has always riled me. Reading your text made that gut feeling of frustration vanish. For, in the end, they have found love in a different kind of normal and that might just be enough for their son.

Kieya said...

You post reminds me of when I used to work with Autistic kids in HS. It was a great experience. I didn't find out they were autistic until 2 years into the job.

Hypatia said...

I love the way you write about your brother. Makes me tear up every time, but in a joyful way.

Anonymous said...

Autism ranges a great deal and not everyone has the resources to assist a kid if they can function. In this rural and poor community, many autistic children recieve help but the majority of the funds are earmarked for the most severe.

Mold

Shark-fu said...

Mold...

Great point! Eevn in St. Louis city autism care is still under funded.

Since autism is now in the news, we must always keep in mind that rural communities lack funding and access to treatment facilities...and that funding in general has not been adjusted to fit the new spectrum of autism.

Thanks for that reminder!

Diva-Bytch Hunni said...

This is a great post. My grandmother, the woman who was responsible for the majority of my upbringing, also raised my younger cousin who was born with autism. I can relate very well to the emotional ups and downs that autism can have on an entire family structure. Thank you for demonstrating how the power of family and love are so much greater then the trials and tribulations.

Vita said...

Shark-Fu, you really should be writing a book about this. Your entry about your mom's experiences and your childhood memories with your brother's autism was hilarious.

You can write about policy, statistics, dollars and cents until your keyboard screams 'enough!', but what people are most likely to read and remember are stories that hit their hearts and/or makes them laugh.

Yeah, I know the situation was and is tragic, but your humor makes it bearable and wanting me-the-reader to read more... and even see a movie of about it. (Hint, hint, wink, wink.)

Maybe a book will solve those $$$ problems you mentioned in a later post about taxes, death and trouble, and even bring publicity about autism. Your story and style - which begins from a kid's point of view - also makes it more likely that the book will be put on the list for middle or high schoolers for summer reading.

Good luck, and I want an autographed copy if you do it!

Deliasgone said...

"May everyone with autism in their world find the laughter within the frustration, the joy within the pain and the strength to love a different kind of normal."

That is so beautiful. Thank you for providing a motto to help get me and my family through our son's bad days and something to remember on the good. I love your blog and I think you are a wonderful person. We need more of you in this world.

squid said...

Thank you for writing this. I will make sure my daughter Iz reads it. It will reassure her to know that there are other families with double standards like those that I wish didn't apply to her and her brother, and which piss her off mightily, as described above.

PortlyDyke said...

Thanks so much for that, Shark-fu -- the image of your mama in her bra and slip brought back memories of hot midwestern days when my mama would shed her usual librarian decorum. Don't think she would have dealt as well with naked son in the yard, though. lol

Mold -- thanks for the note about rural communities and autism. I live in a tiny town, and my friend struggled mightily when her 15-year-old son outgrew her suddenly and became increasingly violent. It got to the point where none of the local day-time care-givers would work with him, and she had to pretty much quit her day-job, even with family and friends to fill in.

When she needed respite, the only choice was a group-home 50 miles away, which was heart-breaking for both of them -- plus, she had to kick and scream for a placement when she needed it.

Her son is one of my favorite people on the planet -- the first time we met, he honored me by stripping naked within the first 15 minutes (all six foot two of him), and bouncing around the house with great enthusiasm.

Siditty said...



My nephew is autistic (not severe) and my brother and his family do much to pretend it isn't all happening. They do not seek help from professionals and that has always riled me. Reading your text made that gut feeling of frustration vanish. For, in the end, they have found love in a different kind of normal and that might just be enough for their son.


Lilalia:

Just to give you perspective resources and professionals that deal with autism are slim and the sad thing is autism is a spectrum disorder. Some people have experience with a certain spectrum, but not another, and to be honest most doctors don't know ish about what to do with autism. My brother growing up would go to specialist and half the time we would know more about his diagnosis than them. It is such a mystery on how it works. Your brother could be frustrated because your nephew like tons of others get piss poor treatment and therapies that don't work. Autism has no cure and really can't be fixed.

Anonymous said...

Thank you for this post, and for your beautiful words. My son was diagnosed at age 3. We are lucky because we found help and he is now partially recovered. I know that not all treatments work for all people with autism, but want to leave some words of encouragement for those who may feel limited in their resources due to money or location. There have been many changes just in the last two years in terms of research and treatment. I encourage anyone who wants more information or even just moral support to try www.generationrescue.org, www.autism.com, www.tacanow.org, or the many yahoo groups on autism. And if you know any autism caretakers, give them a hug next time you see them. I guarantee they could use it.

Laura in L.A. said...

Shark-fu, what a lovely post. I adore all your stories of brother Bill, and I think you could write an outstanding book about your experiences. Your wish for every family touched by autism is just beautiful.

Love to brother Bill and all of your family.

bruce.godfrey said...

Hi, Shark-Fu. I have put up a diary of possible interest about autistic bloggers and their concerns over at My Left Wing. I also put it on a minor orange blog whose name I forget. Got two autistic boys of my own.

All the best, Bruce/Crablaw

squid said...

my brother is autistic and your story reminds me of when he runs around the house naked. -Iz