Back in the Saddle

This blog has, once again, fallen silent for a time.

Life happens and I don’t write fast enough for my words to maintain their truth.

I almost had a new post ready a few months back. 

I had my foot in the stirrup, swinging my leg up to mount a high horse and wave a banner of “different not less.”

But just when I was about to post about “my life is not harder than yours just because of my kid’s diagnosis,” that horse kicked up and sent me sprawling.

I sat in the dust, trying to catch my breath, as the reappearance of injurious outbursts and unpredictable moods made all my positive words ring false.

I watched my “disability does not equal tragedy” beliefs gallop away. The muzzle of an old mule nudged me in the back. She offered to carry me on with worry and fear and pity for myself and for my kid. Exactly the way some people think I should feel in our situation.

But that ride didn’t feel comfortable either.

So I traced lines in the dirt for awhile and rode neither.


That’s the thing. Raising this kid, this young man, is never one or the other.

It’s not happily accepting disability and appreciating all the quirky differences that come with it.

It’s not struggling for answers to alleviate his pain and pining for some semblance of a “normal” and safe life.

It’s both. And more.


I dragged my husband to our 30th high school reunion a few months back. Many people avoid these things (my husband included if I’d let him), but I get a kick out of seeing people who “knew me when” and reconnecting for a short time (even if I have to steal glances at nametags).

Inevitably, when we’re sharing sound bites about our lives, my son’s diagnosis will come up. As much as I’d like to avoid the topic of autism when I make the rare appearance outside our cocoon, caring for my son is my primary work now, so if people ask what I’ve been up to, this is it.

In general, it’s fine – our old friends either already know about our kid, or they know someone else on the spectrum. A few also revealed their own family quirks, so we shared a little “secret society” fist bump.

But sometimes when people hear that I’m a caregiver for my disabled son, I receive consolation that I didn’t ask for and don’t want. They assume special needs parenting is a bad thing.

My gut response is to be extra positive, to refute those negative assumptions. I pull myself up on that high horse and say—No. Disability is part of the human experience. Life outside of the “normal” trajectory is not something to feel sympathy for.

We all have our challenges, and we’re all still figuring out this “adulting” thing. While most of my old high school classmates are preparing for empty nests (and welcoming grandkids!), I’m prepping for the long haul, for the role of a lifetime.

It’s just a different life, not inherently a worse one.

Sigh. I still agree with that ideal.

But the weeks that followed the reunion reminded me that, yes, autism can be heartbreakingly hard sometimes.

And, I don’t always know how to talk about that.


My son has a grin that can infect a room with its pure joy.

And, sometimes, he bashes his fists into those beautiful cheeks until they bruise.

In recent weeks, my boy has tentatively whispered new words and gleefully belted out old songs.

And, he’s developed a new compulsion of intermittent, inexplicable, high-decibel screaming that hurts my heart as much as it must his throat.

We have worked hard and are very privileged to be in our new home, with an attached apartment for our son, which gives him a safe place to continue to learn and grow.

And, my car’s airbag sensors had to be reset because he slammed his body into the passenger seat so hard that my little Prius was convinced it had been in an accident.

I can gush with optimism watching my kid try out a new adapted flag football activity and enjoy being on the field with a group of eager and patient volunteers.

And, I can be crushed when three practices in, stress overwhelms him, and no adaptation will work to include him.

Last week, we tried a family vacation for the first time in years, and glimpsed his happiness for old loves of Space Mountain and swimming and grandparents and ocean waves.

And, his anxiety and unsettledness traveled with us, never truly giving him (or us) a full day of peace.

This story does not stay still.


I don’t want people to define my son’s disability as a tragedy.

It’s quirky and painful and joyful and even boring. It’s life.

And my work as his parent is rewarding and hard. It’s day-by-day, two tiny tiptoes forward, one monster step back (or vice versa). Doing what needs to be done, and very often winging it.

Most important for me now, it’s learning to be honestly OK with what is.

I don’t really expect “typical” people to understand these complexities while chatting at cocktail hour, nor do I want to delve into it.

Oh.

I guess that’s why I have this blog.

Maybe I’ll get back in the saddle. 😉

 

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Top image by Freepics4you; from Pixabay

9 comments

  1. Full Spectrum Mama · March 2, 2020

    Hi. Yes.

  2. james lavoie · March 2, 2020

    Nice post Robin!!

    >

  3. ktonette · March 2, 2020

    The ups and downs are exhausting. I feel like in good times, I’m always waiting for the other shoe to drop. I am glad you can find the positives within the struggles.

    • stayquirkymyfriends · March 2, 2020

      I feel that way exactly, and some days those positives are hard to find…but worth digging for!

  4. Mark Kent · March 5, 2020

    people never see the every day effects of disabilty.there views/judgements are very Snotty Nosed .
    i have aspergers and m.e .long list health issues ,
    my blog, http://mark-kent.webs.com
    twitter,supersnopper

  5. Pingback: In Search of a Calmer Mind | Stay Quirky, my friends
  6. Debbie · March 19, 2020

    Such a wonderful post. When I was a stay at home mom many years ago, I sometimes said something like “I feel fortunate to be able to stay home with my kids.” You sound like you to find the good fortune in the midst of the turmoil.

  7. Priya Magesh · May 24, 2020

    Good to see you back. I appreciate your positive search, and I agree with what you said, parenting is rewarding though hard. I discovered that blogging is therapeutic, so keep the juice flowing and inspire other parents.

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