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.
So here it is February, and this is my first post of 2016.
That pretty much sums up life in this house lately.
Things have been so erratic and unpredictable around here, it’s hard to be an effective parent, much less write about it with any semblance of order or theme. Every day seems to bounce in a different direction than originally projected. When sleep is disturbed and his anxiety is high, I expect the worst; yet he laughs on through. Then, a day begins well enough for me to envision smooth sailing; yet by evening we’ve crashed and burned.
I’m finding it more and more difficult to write as a parent-blogger. I don’t write fast enough to keep up with the variations. I might start a post in the morning, and before it’s polished, the mood, the atmosphere, the energy has changed and whatever I thought I was going to say no longer feels authentic.
But this volatility is all authentic. This is what it feels like to parent this kid right now.
I have another draft almost ready to go, it’s just a short little nothing piece. An exercise to get back in the habit of writing, which I’ve been trying to do since the New Year began. But the winds shifted before that draft was ready to post, and now it may have to wait. Or join the others in the virtual scrap heap. It just doesn’t feel true at the moment.Read More
My son is screaming in the other room, and I’m thinking about silence.
Not the literal type of silence, although I could use a little bit of that right now. I’m thinking about the stories we choose to tell and the ones that remain unwritten.
I’m thinking about the silences – intentional and unintentional – that shape what our history becomes. What gets remembered and what is forgotten.
I was planning to share a nice story of a boy and a horse, but that moment of success is being pre-empted. Today there is crying and screaming, and it doesn’t feel genuine to write about that good experience while ignoring this definitely not-good one.
As a parent of a child with autism, I am shy to admit that I don’t read too many posts about autism – not anymore. When we first got our son’s diagnosis, I went full-steam into research, support groups, list-serves, conferences, books, blogs and anything else I could get my hands on. I tried to become an expert about many things related to autism in my attempt to understand my child, his potential for the future and our best chances for coping with and embracing his unique set of challenges.
But after awhile, I felt like I had heard it all, or I just got tired of living my life around autism 24/7. Many of the articles that come across my desktop now only receive a cursory glance. One post a few months back, though, happened to grab me at a rare free moment. I came across one of Tom Fields-Meyer‘s beautiful essays about his experiences raising his son – a teenager who has so many similarities to my kid that I found the piece at once reassuring and unsettling.
Hidden among the comments from other parents and professionals praising Fields-Meyer for his engaging and insightful glimpse into the life of parenting a child with autism was this little note: “After article after article about autisium [sic], its like articles on writing a resume—ENOUGH”