Foraging for Comfort

It’s been over two weeks since my son has seen anyone in person besides his parents.
Well, we’ve waved to a few neighbors on walks around our block, so at least he’s had a glimpse that the world still exists. 
But he hasn’t seen “his” world in awhile. 
I’m seeing a bit more stress in his eyes, as the novelty of a “vacation at home” with mom and dad is starting to wear off.
But I think this will be our new reality for a while longer.
I’ve tried to explain to him what’s going on, using some “social stories” like this one and offering some simple language like “We have to stay home to stay safe. People are getting sick and we want to stay well. We are safe at home.”
We don’t have our regular supports of respite providers and day program and therapies and recreational activities. It feels strange and worrisome—I want our “team” to be safe in their homes, but to also have income. We are trying out some video conferencing sessions for some of his therapies and adapted recreation, and that looks promising. At least to give this kid something to do, connect with some familiar faces, and give these valuable people a way to have an income from a distance. Read More

Golden Girls

Make new friends
But keep the old
One is silver
And the other’s gold.
My Facebook newsfeed is filled with stories from autism parents, autistic writers, special need groups, agencies, and advocates. These people are my tribe, and it helps to have other people nearby, physically or virtually, who “get it.”
But there are others who get me in a way that can’t quite be matched by those I’ve connected with because of a diagnosis.
Special needs moms sometimes lament that they find it hard to keep up friendships with their typical-parent friends because the trajectory of their kids’ lives are so different. I also find that to be true. But friends outside of that “special needs” bubble, if you can keep them, are truly gold.
I cherish my old friends. That’s not a comment on your age, ladies, it’s just you were here long before the others. I’ve known my girls since as early as 3rd grade. That’s old school.

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In Search of a Calmer Mind

Ever since I stumbled onto the idea of meditation in a late night Google session almost two years ago, I’ve been reading and listening to meditation teachers, practicing being “mindful” in my daily life, and trying to carve out time each day to quiet my brain. 

It is a challenging practice—my mind is nuts—but the more I realize how truly difficult it is to do a simple “pay attention to your breath” meditation, the more I need it. Now that I’ve seen how often my mind wanders away from the present moment and gets caught up in worst-case scenarios and false beliefs and fears, I wish for peace inside my head.

It’s even more critical now, in this time of worldwide unease, to pay attention to things I can do to find calm. I imagine some of you may feel the same.

Here are some nuggets that I am learning:

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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.

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