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Archive for May, 2014

Sometimes Boo’s autism feels like a chess game.  Right now we keep putting that motherfucker in check.  We’ve learned, studied the books about moves and counter-moves, strategies and systems, and we are all becoming a better opponent.  Check.

The pendulum has slowed to teeny movements of to and fro –  a weakening player in the game.  Check.  I believe this because I need to believe this, no matter how many times the forward motion is halted, no matter how many times I lose a chess piece or a piece of my mind.  It’s as simple as it is difficult to learn and accept.

Do I sound “crazy”?  All these mixed metaphors.  I feel it these days, the crazy, all alien and weird inside my house where I work and am alone with a cat and a dog and no kids and no definition of myself to embrace.  It’s okay.  It’s okay, I tell myself.  Everything is okay.  Boo is doing so well, and you have escaped the rat race, and now there is peace in your home.

Still I am alien, a unicorn among moms who either have their children or they don’t.  And if one is gone there are others left behind.  The truth is I don’t want other children with me here to raise and figure out while Boo is away from me.  We only wanted one child, Andy and I.

But I am blessed and I am grateful and really all it takes to bring me back is to walk away from the chessboard, take a deep breath, and allow myself to be filled with those feelings of gratitude and grace.  There isn’t anything to fear, and worry is a waste of my time.  As I get older I realize more and more that everyone has their own shitpile, visible or no.

The pain we feel and the desire to feel happiness is what makes us most common as human beings, after all.  You are never alone, and neither am I.

I’m going into blah blah blah mode.  Red light!

Everything since last I wrote has been pretty much awesome with Boo.  Mother’s Day he was happy and sweet, and I’ve got lots of cute pics to share from our visits.  I am so lucky to have such a  precious son!

Jonah and me on Mother's Day 2014

Jonah and me on Mother’s Day 2014

The Mother's Day card Jonah made for my in school.  His teacher even mailed it to me!  This is side one...

The Mother’s Day card Jonah made for my in school. His teacher even mailed it to me! This is side one…

...and side two, which put a lump in this mama's throat...

…and side two, which put a lump in this mama’s throat…

Happy boo having quiet time on the big blue bed

Happy boo having quiet time on the big blue bed

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good!  Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good! Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

hanging out with grandma

hanging out with grandma

very silly boy. (no, i did not let him lick the $10 bill he's holding).  lol

very silly boy at another doc appointment. (no, i did not let him lick the $10 bill he’s holding). lol

I can't believe how big he is!

I can’t believe how big he is!

People say he looks like me.  Here's me at 10 years old.   What do you think?

People say he looks like me. Here’s me at 10 years old. What do you think?

Love to all…. & sending prayers and strength to my peeps in the autism groups I belong to on FB.

 

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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 judgemental 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 that there is this giant portion of the autism population who are desperate for help.  They need that help and they need it NOW.  I don’t know where to start helping and 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 they  no longer have to live on the edge, fingernails digging in to the edge of the cliff.  God send me a lottery win so I can do it myself.

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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