another old crosspost...

I don't know who reads this blog regularly...or for that matter who reads it at all...but if there is someone out there reading it, than please know that I am writing this to you.
There is an epidemic in this country that is just beginning to get recognized on a national, newsworthy scale. It's not AIDS, or cancer...it's not ADD/ADHD...it's not a fashionable disease or even recognized at first sight. And yet, at this very moment, 1 in 150 children are diagnosed with it...1 in 94 boys in the United States. And my son is one of them...which means my family is one of the statistics. We are a family on the Autism Spectrum.
Most people only know the term 'autism' in relation to the movie 'Rainman'. Unfortunately, the movie does little to represent the broad spectrum of this disorder...in fact, it's only true representation is that of a high-functioning savant. For the general population of those living with Autism in their families, in their homes, and everyday...Autism Spectrum looks nothing like a hollywood movie.
"My son is here"...the daily reminder I give myself every morning, as a battle cry to deal with the day and the stressors and the very real possibility that I will have watch him slip away again.
When he was born, he was beyond normal...he was ahead of the curve, a developmental wonder. The day he came from the hospital his eyes latched onto a little yellow giraffe that hung on his changing table. At two months he crawled. He loved music and tickling. And he was fun.
Three years ago I sought out a group called 'Help me Grow' in the hopes that they could link me up with resources in the community that were geared towards single mothers. I had separated from my husband abruptly and violently and obtained a restraining order against him. All of a sudden my dream of a nuclear family was obliterated. 'Help me Grow' sent a caseworker to my house with intake forms...a daunting stack of pages to fill out, questionnaires to answer, and records to open. And all of a sudden, he had a speech delay diagnosis.
That quickly. That incomprehensibly. That illogically.
I called this group for help and instead they came and told me my child was flawed.
What a joke! What an impossible thought. He was bilingual. I was raising him to speak English and German. Of course there would be a delay, a minor one, while he figured out which language was appropriate at what time. But please, a speech delay diagnosis? They were off their rockers of course. I mean, seriously, did they mix up the files. Had they seen this vibrant, handsome child?
Within two weeks we were shuffling around from session to session...Occupational Therapy, Speech Therapy, Physical Therapy, Social Immersion Therapy.... And all the while I just kept thinking how silly and frivolous it all was...because my child was perfect.
In the fall of 2005 he was admitted to a special needs preschool. He began in the Early Intervention classroom and spent three mornings a week there in addition to the therapy sessions. Progress was made, and then it wasn't, and then things went backwards, and then progress was made again. Things became cyclical. And suddenly with the final months of school approaching someone said it. Someone said the word and shattered my world. My family, the one in my head and heart, the one that I thought I had and was building with my son...vanished.
I had asked the school psychologist if he would observe my son during school because I wanted to prevent future issues. I knew that his father's emotional history could very well become a concern in his own development. So there I was, all proud of myself for having the forethought and foresight to hope for the best and plan for the worst. And then I was told ' we suspect he may have autism'...just like that, somberly and quietly and lowercase.
autism
Skipping ahead, we've now endured two bouts of testing and diagnoses and we know that we are a family with autism. We're a different family today than we were, or even than we would have been. I am a different mother, a different friend, a different employee. I live my life on the fringe of society, looking in but not being in. My love for my child and my hope for his future dictates my behaviour in every aspect of my life. I love him harder and deeper and more desperately to make up for those who mock him. I hug him tighter and kiss him more often to remind him of his perfection. I shield him from dirty looks and whispered insults and let them fall on me instead. And I try every day to feel his hurting for him so he can be spared that at least.
But every night when I sneak into his room to watch him sleep while I rock gently in the chair by his bed, I know there's more to do and more to give.
So to you, you who are reading this right now...if you know me, if you love me, if your my friend, if you want to be...
Be a friend to me and to my son by seeking out someone in your community who you can help. Call your local MRDD, or Family Services or church. Find a family who lives with autism and ask them what they need. Offer to babysit for an hour so Mom can grocery shop without chaos and criticism. Prepare a meal that fits the dietary and personal needs of a child with autism. Do laundry or cut the grass or vacuum...give the parents the time they need to devote to their child. Or call and leave uplifting messages on their voicemail reminding them that they are heroes in this fight.
Autism is here and it's an epidemic and we need your help. We need your support and love and sympathy.