Prepping for the Long Haul

As your special needs child reaches high school, they tell you about all these things you need to do (legally, financially, educationally) in preparation for your child’s “transition” to life after public school.

But they don’t tell you how to prepare for your transition … from parent of a school-aged child to the guardian and caregiver of a disabled adult.

My husband and I watch out of the corners of our eyes as our son’s same-age peers go to their proms and graduations, and pack up for college or careers while their parents mentally and physically gear up for their soon-to-be empty nests. We admit privately to pangs of sadness for our kid, and for us. Our son will miss out on so many “typical” young adult experiences, and our friends’ “phase two” of parenthood will look very different from our own.

These twinges of feeling “left out” are peanuts, though, compared to the anxiety of staring down the road of long-term caregiving. I worry that I’m not really up to the task. Are we making the right choices for him? As the terrors of public school IEPs fade away, will I have the strength to wage the battles that await in the sparse world of “adult services”?

I’ve somehow sustained the energy to support him through his first 18 years, but that was only the initial part of this marathon. There’s a long way to go.

They always talk about self-care for parents and caregivers, reminding us to put on our own oxygen masks so that we are better equipped to assist those in our care. As we turn into the next lap, it feels even more important to pull the kinks out of that hose and suck in that air anyway I can.

I can’t succumb to caregiver burnout.

He needs me for the long haul.

Long road

Lately, I’ve made time for more regular outings with my best girlfriends, and my husband and I have finally found some trustworthy respite care for occasional date nights again. I’m reading more books and watching less news, and spending more time doing creative things that have nothing to do with autism. A simple commitment to actually put on make up every day does wonders for my attitude (and I think probably for my marriage too).

I’ve gotten better about taking these little breaks—physically and mentally—and they definitely help. But the spinning wheel of worry rarely stops.

Particularly when my kid is having a rough time, or reacting to something he can’t explain, my brain automatically goes into “solving” mode. Maybe he has allergies/hurt something/what happened at school/probably sick/didn’t sleep/still hungry/the damned meds/needs new doctor/different therapist/forgot something/on-and-on-and-on. 

This daily stressfest is compounded by the vision of my lifetime appointment of caregiving—of repeating this pattern tomorrow and the next day and the next. There are many times when I find myself thinking, How are we going to do this day-in, day-out….forever? 

I search for ways to cope with the Groundhog Day monotony of needing to stay within certain necessary routines and the exasperation of finding my pantry or desk “arranged” yet again by a housemate who insists on visual sameness.

I worry about my son’s health as he ages. He still can’t tell me if he’s even got the sniffles, so what happens when his eyesight gives him trouble or his joints hurt like mine do? I come across articles about the difficulties of finding quality healthcare for nonverbal autistic adults and my steps falter.

My eyes have grown weary of watching my son for every clue to his interior life and I’m afraid that my brain is so tired it may be mistranslating the signals he sends.

I find great relief in those moments when he is content or when I see him actually enjoying an activity, but I still feel the weight of constantly being on guard, always at the ready to decipher or diffuse my son’s behavior, my mind running non-stop to uncover what I can and should be doing to help him more. 

So, that’s how I found myself the other night (as my brain rejected sleep in favor of replaying unfinished to-do lists, what if’s, and random worries) searching for internet advice on stress relief at 3 a.m. I’m not even sure if I was looking for answers for him or for me.

Middle-of-the-night Googling does not usually lead to enhanced relaxation, but as I started to delve into articles on breathing techniques and “mindfulness,” something clicked.

An elementary school psychologist once encouraged me to adopt a “non-reactive” stance to my son’s meltdowns. The more anxious he was, the more calm I needed to be. Be there to support, but don’t judge and don’t react, especially not in a negative way. Respond with an attitude of “Oh, this is what we’re doing right now. OK. Let me know when you’re ready to come back.” And let it be.

Ever since that conversation, I’ve tried to support my son in this way—to become very “zen” in moments of chaos. I don’t always succeed, not by a long shot. 

But this late night Googling session reminded me that there might be a way to train my brain to get better at chilling out.

wacky silhouette-3087519_1280

Um. What? … No.

Now, I’ve tried a few guided meditation programs in the past, with little success. I could never quite silence my internal sarcastic responses to the cooing, self-satisfied voices of coaches like Deepak Chopra.  I enjoy the stretching of yoga but I can’t stomach the pseudo-spirituality that some instructors bring. Even searching for images to match this blog irritated me because there’s a lot of nonsense that bubbles up with anything connected to “self-help.”

So, I was cautiously optimistic when I stumbled upon the book 10% Happier by ABC news anchor Dan Harris (now on Nightline). Harris explains meditation as “a simple, secular, scientifically validated exercise for your brain” and leaves out the “woo woo” often attached to the practice. This appeals to me a lot.

For one, I appreciate the idea that the practice of meditation can help you to recognize when your brain is obsessing over some future outcome you can’t control, and to shut off that internal worrier when it is no longer useful. Easier said than done, but I like the goal. 

I can also relate to Harris’ concern that calming his brain would make him less effective in his life and work—similar to the special needs parent worry that if you’re not Googling in the middle of the night, you’re just not doing enough to help your kid. Neuroscience research is documenting, though, that cultivating a peaceful mind can lead to more productivity, not less.

The more I read about meditation, the more intrigued I am that this might be something that could calm more than one brain around here. Many of the benefits of “mindfulness” sound a lot like objectives we’ve had for my son for a long time: emotional regulation, impulse control, identifying internal feelings, quieting the every day chatter of the brain, and stressing less about things that are out of his control. If I can learn how to do some of this practice, maybe I can teach the kid too.

Perhaps taking a little time each day to focus on calming my brain is something I can add to my “runner’s backpack” of essentials for this trek. It might help me get a little farther down the road, anyway.

I’m sleeping better already.

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4 comments

  1. Full Spectrum Mama · May 21

    Go you.

    It’s so hard to even to remember to remember to do this stuff, but it can make all the difference.

    Know that you are not alone with these concerns, dear quirky. And you’re inspiring me. Would you believe I used to be a yoga teacher? YOGA??? What’s that?? 😉

    Thanks and love,
    Full Spectrum Mama

    • Ah, thank you! I know you get it. Oh, and my on-again-off-again relationship with yoga is a whole other post, ha!

  2. Lance Huffman · 26 Days Ago

    As ever, this is a very moving account of the challenges you face and will face, but I am always heartened by your outlook. I do not in any way want to minimize your unique experience with some kind of “same here” statements, but I could, in fact, relate to some of what you are going through even without the particular challenges you face. Perhaps that is your gifted writing. It brought me in.

    I am a fan of Dan Harris’s approach to meditation and his story. Meditation has helped me navigate (deal with? survive? make sense of?) some dark moments, and the practice has provided me with all of the benefits you mentioned above. I hope it also brings you some of the same.

    Regular-old garden-variety parenting is hard as it is. Your son is lucky to have you.

    -Lance

    • stayquirkymyfriends · 26 Days Ago

      Thanks, Lance, for your kind words! I’m glad to know this practice has proved beneficial to you – I’m enjoying Harris’ podcast too and learning a lot. Still working on being a better parent, even now, and I think this practice has a lot of potential to help.

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