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It is ten o'clock.
No, later than that. This post should have been up hours ago. But my oldest son had an autism meltdown of epic proportions this weekend. As I write this, my beautiful boy is in lockdown and we're still numb from shock. So, in spite of the fact that it's Muse Monday here at Textnovel Divas, the words simply won't come. All I can think about is autism. That autism is winning. It has taken my son to a horrible place, and no matter how hard I kick, scream and yell for awareness, for research, autism is still legions ahead, and taking down children in rapidly increasing droves.
1 in 91 of them, in fact. And enough is enough.
It is enough, damn it, and no matter what happens with my son, I'm nowhere near done fighthing yet. One way or another, I aim to give a voice to those on the autism spectrum who cannot speak for themselves.
Which, ironically, is the very reason I decided to become an author in the first place. Somebody in this community needs to make some serious noise. While I understand the need for dignity, to hide, to lick our wounds, to regroup from the madness, pulling a Stallone or Travolta (God bless both of them for their and their children's struggles) by hiding my autistic children and their very real struggles does them no favors.
I'll worry about politically correct parenting later.
I'm not ashamed of autism. Never have been. I want my sons to be proud of who they are. But I realized early on in my writing career (if you could call it that) that writing nonfiction about autism was only serving to get my words read by those already interested in autism.
The ones who most needs to hear, read, and see accurate information about persons with autism are the ones who don't already live with it.
These are the people I want to reach, must reach.
Where better to reach them than through mainstream romance novels, which comprise 65%of book sales in our country? My textnovel, Muse Struck, has an autism related subplot that nearly derails the romance in the story. By exploring that plot, I gave the disorder that plagues my sons a face. A name. A story that will, if I have done my job right, turn hearts and minds that may not have been turned otherwise.
When all is said and done in my journey with my sons, I need to know I've done all I can possibly can to insure sure that when I am gone, they will walk into a world prepared to receive them with dignity and respect.
Until our actors, our writers, or politicians and our community leaders who love people with autism are willing to stand up and allow their loved ones to be counted, we have failed.
Failure is not an option.
So while I may be down, I'm a far cry from down for the count.
So off I go to tend to my boy. Perhaps when he is home I'll be able to pick up my pen and spill some more ink for the cause.
The rest is, as they say, in God's hands.
There's no place else in the universe where I'd rather leave my sons.
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2 years ago
7 comments:
When I had my daughter in 2006, I was told that her chances of having autism were 1 in 150, perhaps lower, because she was a girl. My son's birth brought me to 1 in 91. They were born 16 months apart. I think that change is pretty drastic. Working with children ages 0-18 as a children's library coordinator put me in contact with children who have autism. One child could only communicate by reusing sentences he had heard on tv or from books on tape. Another could draw what he wanted to say. That little boy's sense of perspective rivaled mine, and he was just 3. I was, and am, continually amazed about how much argument and how little help there was out there for these astounding children. When working with them face-to-face, it made me feel as if I were witnessing a shift the human brain. The brilliance these children show in the way they survive in our society, yet the dislocation they have within themselves is confusing to us. What would it be like to actually be trapped inside that? So far, both of my children show no signs of autistic behaviors, but I have a feeling that if we do not do something, my children will be in the minority.
Liane, thank you for your humbling and eloquent post, and for sharing some of your reality. I don't have anything insightful or clever to say, except that I wish peace to you and yours, and that the autism community is lucky to have you as a spokesperson.
~bella
Kathryn has always been like a little adult, her vocabularly rivals mine at 9. At 4, when I would ask her for a hug, she would say, "If you must." She's reserved, often in her own little world with her own language that her sister somehow understands. She's beautiful and she has Asperger's.
We believe my husband has it too. He sees the world completely different from anyone else I know. He's the only person I know who can out argue me or make me feel stupid. He has a way of over-simplifying that you can't argue with. I'm amazed and irritated by it all at the same time.
I love what you're doing and how hard you fight. It's just one more voice and it's mine, but you've got it.
*hugs*
Sending you all the love and support I can muster.
God bless you + your family Liane! What an inspiring post.
Robin, Saranna, Deborah, Bella, and Althea. Your words and kindness mean so much. Thanks for the words of support. Robin, I remember when David was diagnosed, the doctor said I'd have a better chance of winning the lottery than having another child with autism. I have two kids with autism now, and a girl with ADHD, inattentive type and social anxiety. Guess I should have bought that lottery ticket!
It may be my ignorance speaking, but in a way, you did win the lotto, Liane. You have three beautiful children who see our world in a different way, and therefore you must see it differently, too. I know that when I worked as a respite aide for a family with autism, my eyes were opened to a whole new view of how the world works. He was a tough kid. Very sensitive. Very logical. Very hard to get through too. Thoroughly amazing. I know things are tough, but with fantastic spokespeople such as yourself and increasing awareness and encouraging solving autism instead of sedating it, we can enrich the lives of these very special children and our own.
I'll pitch in a $1, just in case you still want to do that lotto thing...
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