May 1, 2017

The Weight of It

Posted in AMT's Faves, My Take on Autism tagged , , , , at 2:13 pm by autismmommytherapist

Today we ran into each other at the grocery store. We don’t know each other well, but our kids have been in the same class together several years now, and once we were very compatible room mothers. We chat about our kids (of course), their school, how fast summer is approaching. It’s the obligatory two to three minutes of conversation, but truth be told we both like each other, and despite our long list of things to accomplish that day we’re happy to have seen one another.

I think in another lifetime we would have been friends. Hell, I like your daughter so much had she been born thirty years earlier we would have been friends too.

I have lots of acquaintanceships and friendships after living here more than a decade now. A number of my relationships have a great deal more depth to them (my cub scout wife comes to mind, thank God she volunteered to “be prepared” too), and a handful of them are moms to autistic kids as well. I made sure to make friends with moms of kids in both the severe and mild camps, as frankly while I know it’s a spectrum (who doesn’t now) my kids’ “autisms” present as totally different entities, with so little crossover to call them both just “autistic” is laughable.

Okay, I’m not laughing, but you know what I mean.

The truth is, I really only unburden myself to the other autism mommies, in part because to explain what’s really going on at home would take a lot more time than two to three minutes (understatement of the century), and in part because I need the people I vent to to just “get it.” My mommy friends of “high-functioning “ (a label I hate) kids get my angst when my youngest has a friend issue or has decided he’ll never take care of his older brother when he’s older because he’s too much work (which I really, really get, but one can have hope). My “low-functioning” (another label I hate) mommy friends talk me off the ledge when I talk about sleep deprivation/potty issues/ his overwhelming need to hide my keys twelve times a day and know just to listen and not suggest anything, because I’ve been on the autism rodeo for fourteen years, and damned if there isn’t anything left to try.

Believe me, I’m A type. I’m thorough.

I know, my grocery store friend, we see each other fairly often. I’m the one in the decent-looking blue t-shirt after school trying to interest seven boys in a scouting program that just got with the twenty-first century. I’m at PTA meetings (although I’ve backslided this year). I volunteer at school for various events I’m not sure my son cares if I attend anymore (he says he does, but perhaps he just knows how to work his mom). I usually have a smile on my face (I once won a scouting award which touted I was “Kim Happy Clown McCafferty,” which was accurate on so many levels it was uncanny.) I look happy. I am happy.

But there’s this too.

I won’t even attempt to speak for other parents of autistic children here. There’s not just a spectrum for our kids, there’s one for the parents as well. I have read essays and even met parents of severely autistic children who literally wouldn’t change a thing about their kids because they believe it might change the core of who they are. I have read pieces by and met parents of severely affected kids who would do anything for a cure, who would get them to take that magic pill no matter how many pill-swallowing programs their kid had to attend to get that damn magic down their gullet. For the record, I’m somewhere in between “autism is unicorns and rainbows” and “suck it out of him.”

Where I am on that spectrum depends on the day. Hell, sometimes it depends on the minute.

The truth is I vacillate on many things that affect my beautiful, severely affected teen-aged boy. There are some days I am deeply sad about my boy never attending college, getting married, or driving a car (okay, maybe not that one so much). Some days my rational mind tells me he doesn’t think about these things (yes, I presume competence, no, a child still entranced by Baby Einstein in puberty is not worrying about his ACT scores) and is mostly happy with his life, and I should just be grateful for that.

And I am. And despite the accompanying OCD that often threatens the fragile harmony of our family he is happy and thriving. It’s just that when things disappear constantly on his fifty-year-old mother who desperately needs visual cues, sometimes I am not.

Autism mostly happens to the individual who has it, but it happens to the rest of the family too.

If I’m being perfectly honest with you dear acquaintance, I function, I present that smiling countenance to the world because I compartmentalize. You see, my son’s age and impending adult have arrived, and that “future thing” I put on the shelf because I was trying to get him to pee in the potty for a year-and-a-half has come to call. This fall will be his first transition IEP, and while I know his amazing, “Disney World-esque school” (I know it’s not a word but it should be) will do their best by my boy, the reality of post twenty-one is scary as hell.

The truth is, contemplating his future, is, well, impossible. You see, even if his dad and I can figure out something worthwhile and safe for him most days after twenty-one; even if we can find a safe residence he’ll actually stay in when technically he’s old enough to drink; even if we can fashion a world that will never be as wonderful to him as his school placement but will hopefully keep him happy enough the problem is, his dad and I will die.

And planner that I am, even I can’t get out of this one.

I am confident that his little brother will play some role in his care-keeping, even if it doesn’t involve living with him. His cousins are close enough to his age I’m sure they will check in on him as hubbie and I approach our dotage, and will do so after our deaths. I’m hopeful I can figure out what the hell to do with him, as the “group home versus “buy a place with our last dime and staff it” options are a constant melody in my mind. Frankly, I mostly block out the statistics on his chances of being sexually assaulted or left in a van to die (and no, I’m not being dramatic) because these issues are too painful to contemplate, and even I can’t help him from beyond the grave.

But damn, I’d give it my best try.

The truth is, the weight of his future world is always there. It’s there when I slink into the back of a PTA meeting fifteen minutes late because I had to help my husband get my son upstairs for bed. It’s there when I’m hoping for forty-five minutes of solitude at my youngest’s karate class because that afternoon was soul-grindingly hard. It’s there when things are actually good and I’m just directing kids through an obstacle course at field day.

It’s there when I run into you in the produce section, the products of which are still considered an abomination by both my kids.

That weight, that tangible weight, is always there, no matter how deep my smile, or if I remembered your name. Please know that’s why I might have forgotten what you do for a living, or why I halved my volunteer services this year because I’m just too damn tired. Despite the beautiful, vindicating, soul-strengthening moments I have with my family, that weight, that uncertainty, that impossibility, is always there too.

So please, just know.

 

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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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