I first noticed her as soon as we arrived.

We were spending the day at a local event for autism families; an annual picnic where strangers help chase down bolting kids without having to be asked and there’s no shortage of glorious hand flapping.

There was nothing remarkable about her really, at least, not at first.
She was of small build, her hair dark, her clothes unassuming.

Her hand gripped her son’s tightly, making sure he stayed close and safe. Not unlike what the rest of the mothers and fathers in attendance were doing that day.

The only real visible difference between her and the rest of us was that her son was sporting a beard.

I scanned the crowd over and over again, but she was the only one I noticed that was there with an adult child on the spectrum.

Normally when I’m in the presence of an adult with special needs – autism or not – I’m filled with a variety of emotions. It can sometimes feel like I’m looking at a crystal ball into the future and I’m not always ready for what I see. Andrew is 11 and still a child, but the days meld into weeks, which propel the years forward faster than I’m willing to admit. It can be overwhelming sometimes, to envision my little boy as a grown man. I know it will happen; he deserves for it to happen. But I am after all a mere mortal mom and my heart aches knowing that the world isn’t as kind or gentle or patient with special needs adults.

But I digress.

This handsome man with autism standing near me wasn’t really on my radar on this particular day.

It was his mother I was focused on.

I watched as she walked with purpose from booth to booth, chatting up what looked like old friends while meeting new ones.

I watched as she kept her son safe and engaged, even though he towered well over a foot above her.

I imagined how difficult it must have been for her to raise this young man in a time that wasn’t as understanding, accommodating, supportive. He appeared to be well into his early 30’s after all, and I shuddered when I thought of the uphill battles she must have faced all those years ago, while advocating for a child that was very likely misunderstood, undervalued, possibly even ignored: by the system, by his peers, by the very medical community that first diagnosed him.

I thought of the loneliness she must have endured, without the comforts many of us rely on today, such as online support groups, respite resources, and a constant (albeit often confusing) flow of information from research studies and other families with similar experiences.

And then I noticed something remarkable.

This woman, despite all the hardships she likely faced as she parented a special needs son when society was light years behind the (slow and painful ) progress it’s made thus far in it’s attitudes towards the disability community, was still standing.

Not only that, but she was standing tall and strong.

A mom who’s “been there” and “done that” and has likely seen and heard everything in her decades as a special needs parent.

A mom who, despite all of the inevitable ups and downs (not to mention IEP meetings), somehow made it and isn’t close to being done yet.

It was just the thing I needed to see, to keep me out of my head and on my feet, which is where I need to be; for me, for my family, for my special needs son.

I silently thanked her for her trailblazing, because no matter what she said or what she did along the way, she did it well before I had to, and that makes her a badass in my eyes.

Which is why I spent the rest of the day thinking about her,

while making sure I was standing

tall and strong.

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12 Replies to “Still Standing”

  1. I am one of those Moms. My son with severe nonverbal autism is 35. I’m still in there fighting, hoping, dreaming. When I see you young moms with young children on the spectrum, I feel a variety of emotions. Pain, because I know what you are going through, envy because you have so many more resourses and so much more reason to hope but mostly compassionate love.

  2. This is so beautiful and so touching. I picture my kids as adults and some days I feel overwhelmed and worried about how I will navigate the next 14 years IEP meetings/therapies, not to mention when they turn 18. I can’t imagine what it was like 30 years ago. I love this, thanks for posting it.

  3. I think that will be a lot of us int he years to come. I know my journey has only been 17 years long but the longer I walk this path the taller and more stable I become. To those with very young children I am a warrior, to those well versed I am strong, to my son I am his mother, his strength, his alarm clock, his chef, maid, taxi, barer of all entertainment and I am the love of his life as he is mine. I continue on this path because I am able to and because without him I would be lost.

    Thank you Jo for sharing, I saw her too..

  4. 30 years ago did they have or need Ieps? Autism is pretty much a protected Iep battle right now, but then? I bet her battle was so much harder..

  5. Maybe it is because I live in a state with very few services, but I am not really clear on what our family has that earlier generations did not. Public education is the one thing I can think of. Where we live, that means putting my sons in a room of well-intentioned (I hope) people. I am afraid I sound snarky, but I guess I feel pretty isolated and without societal support. I have two severely autistic sons and live in Texas. I am not able to take them out to community events.

  6. I so love how you managed to express how I often feel when I see older children and adults with autism. Such a combination of feelings but certainly one of awe. So grateful we have many more resources available to us, at least as parents. Badass indeed.

  7. I was going to say the same thing Alice, but you beat me to it! The social media and online support that exists today is a huge safety net that many of us use, especially those of us who find it hard to socialize outside of the home or attend regular playdates. And the fact that autism is not a word we go around whispering anymore. It’s a diagnosis that is so prevalent now that almost everyone knows someone touched by it in some way.

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