Hold it. This wasn’t the way it was supposed to
pan out, we both flattened beneath a spinning situation
ironed hot, scorched and out of orbit.
Am I dreaming first your stay, then mine –
clay-making, group, meal-lines like college, the
potent connections made in all those suffering days,
the way the womb became a mother-cushion?
Hold it.
Hold on. This is what I tell you. I see you suffer,
breathe, clutch, push time along to sleep, placing
facts upon a high shelf where they can’t be reached
without standing on the steps.
So stay seated, both
hands inside the vehicle, a ride dizzy but hopefully quick.
Hold on.
—–
There is no normalcy in any day, in anything Andy does, in anything surrounding Jonah, in anything at all. Through the inconceivable notion of placing Jonah comes an urgency to place him – a sense of time ticking, of there being only so long we can collectively do this thing, keep going, keep everyone safe, keep holding it together, keep hanging on.
The doctor appointment yesterday was awful. It didn’t start out that way. Andy picked me up from work and we collected Jonah from school without incident, but on the ride to Clifton Park we passed the exit where grandma lives and Jonah started to ask for grandma and white soda over and over with increasing urgency. We told him yes, Jonah; later, boo, and ignored it when he hit the back window with his palm.
Andy dropped me off first to see if the doc was on schedule – they said he was, so Andy and Jonah followed shortly afterwards, walking in just as the nurse was calling his name. First he was okay; the nurse put the blood pressure cuff on and Jonah said arm squeezy – he knows the deal with that – then she asked us to get Jonah undressed. We did, and he paced the room in his pull-up, lifting the blinds, walking back to the corner by the door, walking back to the blinds, saying all done at intervals – but then he slowly started to fall apart.
By the time Dr. Pascual came in and wanted Jonah to lie down so he could listen to his heart and belly, we had to hold Jonah down on the table and he cried, frightened, ramping up for aggression-time. Then Andy got Jonah dressed, putting himself between Jonah and me so I wouldn’t get hit by any of Jonah’s swats and kicks.
I stayed behind to talk to the doc for a few minutes. There wasn’t much to say; the doc saw an obvious need for placement and told me he thought Jonah would really benefit and be happier with 24-hour care.
Small consolation. But the truth is that what used to be small consolation is now something we cling to, and hope for, and want as soon as possible. Even with the oxymoronic torment it brings us.
So I walk out to the parking lot and I see the SUV’s back hatch is swung open, and I get in the passenger seat and there’s Andy holding Jonah in the backseat, and Jonah’s undressed from the waist down. I guess he tried to kick a baby in the waiting room on the way out and then Andy half-carried him to the car, Jonah fighting him all the way, and when they got to the car Jonah took off his shoes and pants and pull-ups off, attacking Andy the whole time. I saw Andy’s hands were spotted with blood, probably from being bitten and scratched.
I didn’t ask.
I managed to help Andy get Jonah’s pull-up and sweatpants back on him, then we latched him into his harness and secured it to the seat, retrieved his bag from the top of the car, slammed the hatch, and I moved into the driver’s seat to drive us the hell out of there.
Jonah was quiet on the way back. Andy and I were quiet too. I asked him briefly what happened, he told me, then we too fell into silence.
Silence like a door that closes, latched, leaving us in the dark, unseeing, feeling our way along in the black.
Hang in there, Amy. Help is on the way–for Jonah, for Andy and for you.
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Dearest Amy,
Having worked for an agency that advocates for individuals with DD, there ARE homes out there for Jonah. People who are trained (albeit woefully underpaid) to meets Jonah’s needs. Consistency. Normalcy. Knowing what comes next. How to hold him soothingly without him hurting himself or others. Not Mom and Dad, but none-the-less people who do this because they have a calling. I was one of them. I hope you can find some sort of peace through this email. I know your life is Hell with small bits of Heaven in-between. I am so sorry. If I were there I would fold you into my arms and just let you “be”.
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Amy,
There are no word to be spoken that will take away the anguish, pain and stress you are feeling. I’m sorry this is all happening to you…please know I think of you often and read your posts.
Hugs, Susan
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I have been reading your posts… It is upsetting to me to hear your anguish and your pain. Thank you for sharing your heart and saying your truth.
My son has autism as well, but we do not face the challenges of your family. I understand that autism is a different way of processing and of seeing the world… and so often with our child, it is more the world I wish I could change- rather than him.
It can be a bit tricky at times- because sometimes he so approaches typical that people might not be as understanding or sensitive as they could be. Sometimes even I feel the lure of the neurotypical- the siren song that sings me close, and sometimes crashes my hopes upon the rocks. Sometimes autism sneaks up once again and kicks me when I am turned the other way… and I usually deserve it. Perhaps I have pulled away a support without realizing it- or perhaps I have just expected too much.
I count us fortunate however, and when I read your entries, I feel an understanding of your pain, and what you are going through. But honestly- I cannot possibly know what it is like for you.
I want to keep your perspective with me… to carry it with me in my own heart. I know that having a child with autism is difficult, and it can be so in a wearing and unending way. Wouldn’t it be great if the NT world had a better understanding of the experience of those with autism, and also the experience of the parents who are so often stressed, in pain, or misjudged. I can only imagine what you are going through… and wish you strength for that next step- where ever that may lead.
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