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Posts Tagged ‘shoes for kids with autism’

My mom seeks out comfortable, high-quality shoes for Jonah in an old-school, determined way.  I think it’s her generation (the one that came after the Greatest Generation and before the Baby Boomers).  When I was little, she always took me to Stride Rite and had my feet measured carefully.

Her parents were big on shoes, too.  We did without some things but we never did without good shoes, she tells me.

And so Jonah has always had the finest footwear.  Until he got aggressive, we brought him to the Stride Rite in Stuyvesant Plaza, always planning the time of day so as to be the only ones in the store, if possible.  He paced in circles and we got him to stop briefly in that silver measuring thingee with the slider so they could get his size right.  The salespeople were always kind, and my spoiled Boo had a never-ending supply of fine footwear due to my mother’s diligence and my father’s financial backing.

None of that has changed. Once we couldn’t take him to stores anymore, grandma got creative, tracing his feet on paper, then purchasing her very own silver measuring thingee.  I’ve got to give props to these slip-on sneaker/shoes she found, because he loves them.  They’re easy, and comfortable, and so we keep buying them.

She just ordered him two new pair and instructed me to donate his old ones.  When I collected them at his residence, though, they looked a little too ratty to donate – and yet not destroyed enough to throw away.  Out of curiosity I tried them on, and they fit me perfectly.  So now they’re my house shoes.   I am literally walking in my son’s shoes.  I like it.  But damn. You know you’re getting old when you start telling people these are my house shoes.

When I was pregnant I remember thinking I’ll be 50 when my child is 18, and how perfect it seemed.  My fledgling trying his wings as an adult, me trying my wings as an empty nester.  Now 50 is less than two years away.  18 is too.  And none of what I expected has come to pass.  He’d be a junior in high school now, but he’s trying his wings in a far different way, and my empty nester time came 9 years too early.

Because 18 is coming it means we need to apply for guardianship so we can make medical, educational, housing, and other decisions for Boo.  We have all this paperwork they gave us about what we need to do.  I also had a free consultation with a lawyer about a special needs trust, but it’s a few thousand dollars just to set up.  We might be able to use some of his SSI money to save toward it; I need to look into that.

Jonah’s been doing great.  His teacher sends me notes and the residence tells us stories, and I think he’s down to one takedown a month or so .  Let me type that again.  I want to type it again.  ONE takedown a MONTH.  This from a child who was up to 12 take-downs a DAY (and, really, after that, so many that they were like one continuous aggression with brief interludes of Jonah catching his breath).  I’m very grateful, even though we’ve had to trade away some abilities to mitigate his aggressions.  He definitely is not enunciating like he did when he was much younger, for instance, and I think he’s lost some of the interests he used to have.

Then there’s a voice in my head that says well, he is a teenager, after all.  Don’t all 16-year-olds mumble and nap and listen to rap?  I’ve stopped trying to guess what’s what and why and how.  There’s no map for this path.  We’re bushwhacking through, just as always.

It’s becoming increasingly apparent Jonah won’t be able to live independently as an adult.  At all.  It’s not so much a surprise as a sigh.  It will be another new normal.

Oh, and I have photos to share.  Jonah’s now as tall as Andy and me (we’re all 5’7″ for this short while).  He slouches, though, so I think he might be even taller now.

20180325_101115Wearing his Public Enemy shirt my friend Kristin got him.  His favorite album is  It Takes A Nation of Millions to Hold us Back, particularly the track Bring the Noise.

I’m too black.  Too strong, he says.

Fight the power, white boy.

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Here’s Jonah with my dad on Easter Sunday…and two more from

the same day…

 

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He’s been learning some simple piano chords.  Nothing amazing or even melodic, mind you, but chords nonetheless.

This is grandma’s living room, and yes – that’s a genuine signed and numbered Thomas Kinkade in the background on the wall.  (I’m not what you’d call a fan).  She got #666, and I tease her about that.

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Next to Grandma, Jonah looks like a basketball star.

Easter was good.  As good as it could be, considering our family lost my beloved Aunt Sue to a sudden stroke in late February.  Our family still sits stunned and disbelieving.  In shock.  She may well have been the best of us, and the first of her generation to pass away on my mom’s side of the family.

I hadn’t planned to ask if I could speak at her funeral but I did end up writing something and sharing it – a letter to her, thanking her for being my sweet Aunt Sue.  I’m grateful I got the chance to pay her tribute.   Now my Uncle John breathes in and out and gets through day by day and minute by minute, the long exhausting slog through grief that comes first like flooding water drowning you, then in waves crashing steadily at intervals, then like random jolts.  Sparks.  Sharp pricks of pins. Time softens the blows but never quickly enough.  The pain pulls your very heartbeat out of rhythm – thumping, jumping, scared.  It can rip through your stomach like flu and squeeze your lungs so you’re gasping, fish out of water flopping on the floor.  Everything upside down.  No answer, no solution, no matter what.  The panic and the desperation.

This life is messy.  Joyful, and sometimes agonizing.  Tiring and boring and too fast and very funny.  Recently another younger cousin happily announced she is pregnant, and so the wheel turns.

I have hope now with consistency, for the pendulum I’ve blogged about so often has slowed to a very slow swing.  I’m resting on it as on a hammock, still and settled, for as long as I can.  I have hope, and it feels just like the spring we’re finally beginning to see here in Upstate NY.

Boo says hello.  And Onward ho…

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