Posts Tagged ‘fear’

I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet.  How do I say what’s happening?  I edited it about ten thousand times.  The issue came out today.  For those of you who don’t get the Capital District Parent Pages, here’s what I said:

Normal is a Dryer Setting

August 2011

Well, here we go.  Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there. 

It’s a beautiful campus.  Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room.  There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums.  He can’t do those things anymore here.  I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.

I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away.  The truth is I have no idea how to do this thing.  I have to believe Jonah will be protected and happy.  I need to imagine him learning and laughing.  There is no other option if we are to drop him off and drive away.   In the meantime, I cry.  I have nightmares, nagging thoughts of negative scenarios.  My head fully understands the necessity and wisdom of moving him there, but God, my heart.  Each day is another day closer to that inevitable day, and my heart mourns.  I’m grieving for him even though he isn’t yet gone.

I’m going about it all wrong, I know.  What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase.  Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool.  And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body.  Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair. 

I‘ll concentrate on shopping for things he needs for his room.  I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors.  A late-afternoon-sky colored comforter with a floor rug to match.  The softest blanket I could find.  I want him to be comfortable. 

I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been.  I want him to remember his loves.  I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn.  I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures. 

Everything changes.  This is a new chapter in a new book.  Maybe even a whole new library.  I’m grateful to everyone who has made places like this available – and so much better than they once were.  I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him.  I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them.  I’ll never complain about taxes in New York again.

Still, though, it’s all so surreal and unthinkable.  I want to be a parent advocate for other people going through this process.  If I can be a comfort to just one other family, it will help.  The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.  

As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before.  So goodbye for now, little boo.  Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be.  Your mama knows you are bright and silly, fun and eager to learn.  You show ‘em, sweetheart.  They’re going to love you.  I just know it.

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Here’s the thing.

It’s not the one day of attacks, or the one incident of aggression; it’s the accumulation of day after day after day of the same thing, the same attempts to quell the behaviors that end in failure after falure, the same silence that falls on a situation we’re in – a cage, prison walls, something inescapable that has now become our “normal.”

Yesterday at school Jonah went to the safe room three times, and all three times he pooped and smeared it all over the walls and himself.  They cleaned him up as best they could while he fought them, then he cried and cried, and finally tried to run out of the building (a new trick for him).  The undoubtedly underpaid workers at Wildwood are angels and saints.   

Here’s one of his speech teachers, teaching Jonah about emotions and asking him to mock her facial expressions while they watch themselves in a mirror.  This is from June of 2010 – they are doing “excited” – I love this picture:

When I got out of work I went straight to the house and Jonah wanted a car ride.  As expensive as gas is, it is worth it to us when he is good on the rides (we have no idea why he was such a hellion in school and then was so much better for us at home)… Andy sat in the passenger seat and we drove over to the Voorheeesville Stewarts to get Jonah a peanut butter roll and visit the train tracks where we saw two trains, which this time neither excited nor annoyed him.  He was good, so we kept riding.  And riding.  We’d ride around forever if it meant our boy would be calm, and happy, sucking his thumb and looking around contentedly.  This kind of silence is welcome; we let Guster play on the CD player and drive along without speaking much.

We’d give anything to take away whatever anxiety or fear or confusion or pain that’s inside him.  It’s the accumulation of days, now, that piles on, swaying and unbalanced – and apt to fall at any time.

Thank you to my commenters, who always encourage and support, inform and try to help.  I appreciate you all more than you know!

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The word itself sounds crisp and almost pretty, a deliberate and careful motion to put something in a certain spot.  I love words but I don’t like this one, despite its euphemistic connotation in the context of educating Jonah in a residential setting somewhere.  Somewhere else.  Somewhere Andy and I won’t be.  And today is the dreaded meeting to decide about it.

He was doing so much better on the new dosage of meds, and then yesterday at school he fell apart again.  Five attacks, lots of time on the scooter platform with his weighted blanket.  It’s the worst timing there could be, for the teachers in his class will weigh in heavily on what to do here, and if he is getting such a low quality of education now that they’re simply managing his behaviors, I can understand a move toward residential education.  Understand, but only intellectually.  In my heart this is all unthinkable.  An unimaginable move.

I harbor resentment for all the normalcy other children get to have, what with arguments over homework and setting the dinner table and who pushed who, all the while excitedly counting down the days til’ Christmas…and then I squelch the resentment by reminding myself that there really is no such thing as normalcy:  normal is a dryer setting, I declare here after all, and pain and joy and suffering and hope and anguish are everywhere.  

I feel guilt too, for what could I have done differently to change what has happened?  What should and could I be doing now to effect a difference, in our lives, at Wildwood School like the parent volunteers, in the community, to advocate for better care and treatment of individuals with autism and other disabilities?

There are so many things I don’t know.  So much over which I have no control.   So much helplessness.  What is going on in our boy’s heart?  In his body, his brain?  What does he wish he could tell us?

Are you in pain, sweet little boo?  Are you frustrated because you want to speak volumes you cannot express?

Can I love the pain out of you?  Hug the frustration away?

 He lies on the table with his markers lined up next to him.  He is looking out of the window with his little butt in the air, dressed in comfortable sweats, asking for grandma.  His dependence and innocence are complete.

Fifty years ago he may have been hidden away in a back room somewhere.  A few hundred years ago he may have been labeled “possessed” and burned at the stake.

Today he will be the focus of people who love him, who will work together to get him the best care and education possible. 

But I’m really scared anyway.

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