Placement.
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.
Pain, resentment, guilt and fear – all emotions that every parent experiences at times and can understand. But that doesn’t make your own feelings easier to bear. I hope the decision you come to, whatever it may be, brings relief and hope to all – particularly to Jonah into whose world we cannot tread. If you agree to a placement will he be home for the weekends? Maybe with space to recuperate, you’ll grow stronger and maybe, just maybe, somewhere along the way, you’ll find the key that unlocks the door to what is normal for you and for Jonah. You are so right. Normal does not actually exist. it is a Dryer setting.
(Heartwarming and heartbreaking photo by the way).
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I hope things go well today, or as best they can.
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It is the absolute worst decision any parent can face…evaluating a residential placement.
The only way I could imagine keeping your sanity is to step back and realize that, perhaps, a professional third party — or really, a staff of different 3rd party people – might offer more resources than you and your family can possibly give.
More care, more attention, more insights, more freedoms. Not more love. He still needs you for that.
Sometimes it really does take a village to raise a child…especially if the village is staffed with professionally trained experts in autism!
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Thank you all. Your words of understanding and encouragement truly mean a lot to me. More than you know.
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***Note to all of Amy’s readers***
Amy is in the hospital and has been since Monday Dec 13th.
She is doing fine and wanted to let everyone know not to worry she’ll be back soon.
~ M
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Amy,
My nephew has been living with the most sevier form of autism imaginable for over 20 years now (older brother’s son).
My brother and sister-in-law anguished over the decision concerning residential treatment. But I wanted you to know that it’s been an incredibly good thing for both them and Rocky.
Now, 7 years later, I don’t think they would have changed anything. He does very well there. And it freed them up to have more of a consistent life.
My heart goes out to you Amy.
The News Guru
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Somebody in Woodstock loves you, Amy. I love Jonah and Andy, too, and know that you and Andy will know exactly what is in the best interest of the little boy you love with both of your hearts.
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You were a year ahead of us, Alex was “placed” in Dec 2011. I had no idea how to manage the unthinkable, unimaginable move to residential care. Now I know that despite all the wrestling I’ve done with “normal vs. autism vs. the rest of the world” the past few months, I am lucky– because Alex is indeed in a place where people work together for his good because they love him & they get what “normal” really means.
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