May 23, 2016

Spinning

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 11:51 am by autismmommytherapist

Justin BD 2016 Scouts 003

My head is spinning.

I’d like to tell you it’s for a fun reason, like when I used to be able to stay out late in my glory days (I remember them fondly). To tell you the truth my brain is literally pulsing with information, ideas, and choices.

If I’m honest, it’s mostly the choices throwing me for a loop.

I just finished reading Susan Senator’s “Autism Adulthood,” and while I’m contemplating the enormous amount of information within her tome (so much of it positive I’m happy to say), I’m also coming to terms with the fact that next week I’m the mother of a teenager.

Of course, that’s a sobering thought all by itself. Couple that with being the mom of a severely disabled teenager who will need lifetime care, and my chocolate stash is far from being safe.

Justin’s adulthood is creeping up on me, and believe it or not I feel blindsided as just yesterday we were conquering sleep issues and potty training, and it seems incomprehensible to me that he’s almost thirteen. Yes, he’s got eight more years of school before he’s in the real world, and officially “transition” and all it encompasses doesn’t start until he’s twenty-one, but his adult life is coming.

Like winter, it’s coming.

I would love to tell you I have a plan, although to be honest, my motherhood plans have more often than not deferred to “plan B” over the past decade. It’s not as if my husband and I haven’t been faced with big choices since our eldest’s diagnosis. One of our first dilemmas involved breaking into our savings to shell out four figures a month for our son’s ABA program which wasn’t covered at the time in Virginia, a decision we continue to be grateful we made. When we were faced with the fact that our school district’s autism program was good but would never provide him the one-on-one aide we felt he desperately needed for his academics, we made the decision to leave DC and relocate to Jersey which we’ve never regretted either (although we still miss our nation’s capitol to this day.)

We’ve known when to fire therapists, and when to try to keep people in our retinue at all costs. There’ve been med choices and school choices and “do we try this therapy even though it’s not covered” choices (oh my!), but I have to say most of the time Jeff and I knew what to do. Very rarely have we looked back and wished we’d taken the road less traveled.

And yet when it comes to Justin’s living/day-time arrangements post-21, I am literally in a quandary that even dark chocolate doesn’t seem to help.

I will preface what I’m about to say with the fact that eight years out I certainly don’t know what my options will be, and since the adult autism landscape seems to improve at least a bit every year I’m hopeful I will actually have choices in 2024, but we’ll see. Again, even my best-laid plans won’t come to fruition if there aren’t good programs and residential services, and equally importantly, openings.

But even if I one day have a smorgasbord of options (yes, I relate everything to food) at least at this point I’m just not sure what will be best for our son, and what’s best for us.

I’ve had the good fortune over the last few years to watch friends and acquaintances create post-twenty-one lives for their adult children, and I’ve seen all different scenarios come to life. One family I know has kept both their children home and have all-day care almost seven days a week, which enables my friend to work and have a modicum of freedom in her life. I’ve seen another friend place their child in a residential setting where he is finishing his schooling and absolutely thriving after having made a wonderful transition, seeing his parents frequently and seemingly loving his life.

One thing I’ve learned for sure with autism- it’s important to keep your mind open.

I know there will be immeasurable growth with Justin over the next eight years. He is a completely different child than he was at five, spends most of his days joyful, is very close to my husband and me. Honestly, except for his OCD moments and his frequent desire to not stay anywhere outside of our home for more than fifty-three minutes he is delightful. As the years have passed we’ve watched our lives grow easier, our ability to make our own choices grow, and his happiness with his life increase.

Amen to that.

And maybe I should table all this contemplation for a few years, but it’s not in my nature to do so, so here I am. If I’m really honest it’s the decades he’s here without me that are the most painful, and in truth I’ve shelved thinking about them in part because they’re not here yet, and in part because they haven’t invented that damn aging pill yet that lets me get to 110 with all (or most) of my faculties.

Here’s hoping.

So most of the time I choose to focus on the years I’ll still be here, guiding his life, hopefully providing a plan for him where he is as happy as he is now with school and living with us.

And here’s where I get stuck, because I’m not sure if what’s best for Justin is what’s best for us.

Jeff and I are both fiercely independent people. Honestly, one of the hardest parts of parenting for us was not the sleep deprivation (although that sucked too) but the loss of freedom one eight pounds of glory bundle presented us with thirteen years ago. When I think of retirement I imagine travel, and having those stay-in-bed days I lived for back in my youth. I can’t imagine worrying if my babysitter will bail when I want to go see colleges with my younger son, or go to my niece’s wedding.

I can’t imagine one day just not being able to do whatever the hell I want again. I really liked those days.

But as I think of this scenario I look at my boy, and I know people will say I shouldn’t speak for him, but I can’t ask him this, so I just have to guess. I know in my heart he’d want to stay with us forever, would be perfectly happy to go to his school until he was an octogenarian, loves the routine he craves that we’ve provided for him. He will not be a fan of day programs, and since Great Adventure isn’t open every day of the year I see long stretches of “sameness,” of a lack of stimulation and a lack of just something to damn do that I can’t figure out how I’ll provide for him.

Just in case you think we don’t think out of the box we’ve contemplated Hawaii which supposedly has fabulous adult services. Justin could spend his forty-three minutes at the beach and ride his horses daily, and Jeff and I could live in paradise.

I figure we’d be very popular with friends and family.

The truth is I just don’t know what’s best for all of us. I struggle, because I know that by potentially putting him in different settings the people who care for him won’t always know what he needs the way his mom and dad do, but I also know he will have to deal with that eventuality someday.

So when is it best to start?

Will I know what to do?

Will my expectations and hopes match my options?

Will Justin approve?

Wherever he is, will he be loved at least a little?

And as I pop that last allotted chocolate into my mouth, my head is still spinning.

 

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4 Comments »

  1. lvdm1965 said,

    Oh Kim! I can not even imagine what that must feel like.

  2. misifusa said,

    Sending you strength, dark chocolate and love! ♥


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