...i don't want to be in pieces...

"Oh mister man, I love you to pieces!"
"No Mami, I don't want to be in pieces!"

The mister man is a tad bit obsessed with my computer. It's the allure of the keyboard, dont'cha know. After all...the whole alphabet is just sitting there, waiting to be tapped out!

We've been playing a bit with photos of friends and family...making mini-collages and using the arts program to draw elements in. Most people end up with a *splotch* directly over their faces and are thus proclaimed "Transformed!" Thanks to the wonder that is the transformers movie, my child is utterly convinced that we all have the ability to sprout wings, jet packs or multi-round canons.

Several of the gifts he'll be getting from me..ahem, I mean St. Nick...this year, are of the craft variety. I plan on using photos of his beloved friends and family to create some puzzles for him. And I'm also making him a 'Memory' game with pics of the same. And if that means I somehow end up with someone else's more petite nose, I'm all good!

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.

an old crosspost...

There are days, few and far between, but there nonetheless when I feel as though I can't handle all this on my own. It's hard enough being a single parent, but then you add in a special needs child and throw into the mix that there is no extended family close by to help out. And what comes out....frazzled frustrated me! Ugh!
For the most part we've gotten things down to a system and we manage to get through the day to day without too much difficulty. At this point I feel as though I've adjusted fairly well to his needs and emotions and there's almost a sense of intuition or predictability to it. I can judge a room before we enter and know what will set him off: whether it's the crowd, the lighting, the smell, the feel of the floor...
And then there are 'THOSE DAYS'....the ones where I have 1 in 100 odds of preventing imminent disaster. I still don't know what set him off today. But my jaw bears testament to his inner turmoil with a fresh bruise. Foot on jaw with force = very bad thing!
My own frustration really lies in the fact that there is sometimes very little I can do help him because the sensory integration disorder that is part of his autism won't allow him to accept comfort when he is in meltdown mode. Tactile defensiveness can manifest as a pain reaction to a hug or a gentle caress and something as a soft as a whisper can bombard his ears like a siren. It is those times when I feel adrift and helpless and useless even. It is those times when I wonder if there is any 'getting better'. And then there's the guilt in my heart that says 'if you can't accept that he is perfect as is, how can you possibly expect others to do so?". In the maelstrom of stymming or meltdowns it can be so easy to forget the sense of wonder and perfection that he brings to my life.
What interests me most on a daily basis is all the autism research that seeks a cure or a solution. So far, there isn't any one fix. There's therapies, essentially limitless....ABA, Occupational, Speech, Physical, Fine Motor, Gross Motor, Social Skills, etc... But what I wonder in my heart of hearts is why am I sometimes so desperate for a cure? Why do I feel my son needs to be 'fixed'? Is it simply because society has imprinted on me it's rules of what is acceptable and what is not and I am imposing them on my child? The thing is, I know that compared to your average mainstream child, my son is different. But what I don't know, what I don't necessarily believe, is that his autism is a bad thing.
He sees the world in ways I can't even imagine. His senses take in things I don't even notice. And his mind works around puzzles and mysteries until he finds a suitable answer, whereas I would just accept the standard opinion. The changes he has wrought in me and my use of my talents and God-given creativity would probably never have occurred were he not autistic.
So does he need to be fixed or programmed or therapied until he fits into society, or does society at large need to once and for all realize that true beauty lies in each person's difference....