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Posts Tagged ‘aggressions with autism’

IMG_20150527_153117207 Remember when I said I was going to get through the winter  without using lights and my thermostat set as low as I could safely manage it?  Well, damnit, I did it.  And now, for further fun and self-flagellation, I’m attempting to go all summer without putting the A/C unit in the window.  It was 82 degrees in my house yesterday.

It all involves very little clothing, drapes closed, and a big fan.

I have a pleasantly cool, finished basement where my two new kitties and I can escape (Almanzo never returned, and I waited until my heart was ready to take in another animal companion).  The cats are 3 years old and had been surrendered at the Mohawk-Hudson Humane Society a week before.  I didn’t really want two, but they are sisters and I didn’t want to separate them.  I’ve named them Laura Bess and Gracie – after guess who?

They are very nearly identical….white with graffiti-sprayed gray atop their heads.  I put a collar on Gracie just to tell them apart, though Gracie’s bigger and usually now I can tell who is who.

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Laura Ingalls Wilder was a little thing, after all — just 4’11”.

And what of Boo?  He is himself.  He is navigating his world the best he can, and we along with him.  A sudden, explosive outburst at his father – when Andy told me on the phone, I nearly threw up.   Jonah attacking him, causing scratches, bruises, bleeding.  Chunks of hair pulled out.   I wasn’t there and I don’t even know exactly what happened, but I’ve seen it all enough to imagine…

…and I don’t want to imagine and I never want to have that happen to anyone again and there isn’t a damn thing any of us can do about it.

I spend a lot of time in the woods.  A lot of time alone.

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I remain afraid of my son.  I’d love to watch him swim, watch him sleep again.  I never get to watch him sleep.  Strange, the pieces of my mama-life I miss the most.  Small memories.  Momentpieces.

Everything is as it is.  I am beginning a meditation practice with Tim, daily, though he is in Indiana and I here.  I have lost my practice and need to regain the refreshing supply of mindfulness which comes from sitting in silence and outside of time.   Most recently we visited for nearly 2 1/2 weeks together both in Bloomington, Indiana (where he lives) and San Diego, California (where he is from, and where we stayed – where I got to meet his mom and her husband, Chris).  Here are some photos, of us — and of course, of Boo.

Love on the Pacific Coast

Love on the Pacific Coast

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putting on his socks and shoes

putting on his socks and shoes

happy on car-ride

And much silliness:

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“The best things in life are silly.”

~ Scott Adams

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There’s a portion of the autism population hiding in their homes afraid.  I always thought we were the only ones when it was happening to us.  The severe autism groups on Facebook tell their stories, and I have joined them even though my own journey through the aggressions and the helplessness and fear is largely over.

On the other side there is mostly peace for me now, especially nearly 3 years after admitting Jonah to his residential school, because I know my home and my body and my child are safe, that we are getting better, that I have no other children to worry about or care for.

What I never knew is how I was one of the lucky ones…the one who found a great residential school with an opening for my poor Boo, and quickly enough so that I did not completely disappear into despair before it happened.

I want to help these people who are tired, who are so strong but feel broken, who have no idea how or where they are going to find help.  Who buy drive-thru food for their child only for the child to throw it out the window….who clean up smeared shit, and cover up patches of bruises and scratches and bites incurred by their very own Tasmanian devil…who put on masks they don’t want to wear and face judgmental people who have no fucking idea what they are going through.

It’s like Andy DuFrane from The Shawshank Redemption, crawling through 500 yards of foul sewer shit to find the freedom on the other side, only there is no other side and they’re trapped in the sewer.

There are so many places the people in the severe autism group tell about, where their child was sent and abused, or neglected, and so they brought them home again.  There are so many areas of this country that offer no help at all.  The police have no idea what to do and the psych centers won’t take kids who can’t communicate effectively and the psych drugs are a sick, sad game of roulette.

I find myself holding back lest I become a residential school advocate.  I remind myself that just because it worked for us does not mean it is the right path for someone else.  I need to remember all residential schools are not as excellent as The Anderson School for Autism.

I can only comfort, and cheer-lead, and celebrate the joys, and give virtual hugs and love wherever I can.  I can talk about the Anderson School and offer this blog as a written account of the journey to the decision to place him there – particularly 2010-2011.  Read it and weep.  Or learn.  Or judge.  Or laugh.  As I’ve said before, if it helps one person it is worth everything to me.

What no one knows (except those of us who have lived it) is there is a giant portion of the autism population who are desperate for help.  They need that help and they need it NOW.  It all feels so insurmountable.

I’m still on 3 psych meds to get through the day.  I still hate Mother’s Day, because it feels like a fake celebration.  How can I be a good mother when I am not mothering?  As wise a choice as it may have been, what, exactly, is there to celebrate, but my own poor mother, who only wants to love and hold and spoil her only grandchild?

I want to send every one of these autism mothers a card, a gift, some reassurance.  I want to convince someone very very rich to build 10 or 20 or 50 residence schools — fantastic ones — however many it takes so people no longer have to live on the edge, fingernails digging in to the cliff.

As for Jonah, he is well and he has been happy, running around outside on the school’s playground, eating like a horse, his growth spurt starting so he is 5 feet tall now.  He has learned his simple sentences:  “I want cranberry soda please” and, still, the oft-repeated phrases:  “car ride?”  but if he is upset with us now he cries instead of attacks and he requests “quiet time” (usually lying down on the bed with him) instead of bursting forth in lightning-flash anger.

Jonah and grandma

Jonah (with his crackers lined up) and grandma

happily patting the chips

happily patting the chips

...and the cookies

…and the cookies

and a happy car ride

and yet another car ride

I have so much to be grateful for.  I want that for everyone in the group.  Someone needs to pay attention to us.   Not only are we not going away but we are increasing in number.

Here are a bunch of sweet Jonah pictures from our last few visits –  in several of which he is pat-pat-patting the package of crackers or chips or whatever, because he thinks it’s funny – and although we’d like whole chips and crackers, the giggles are worth everything.

My prayer today is a strong and fervent one – that the other parents like us find the help they need and that awareness is increased to the point where we can no longer be ignored or judged or swept under the rug.

Please, God, and thank you.

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