Hi! Welcome to the inaugural issue of It’s Like This — I’ll ease into this with a bit of a catch-up on where we are these days (hint: same, same, same).
Have comments or suggestions? Reply to this email (which just goes to me), or click the comment button to leave a note on my Substack page. Neither are required, of course, but I’m happy to hear from you! Thanks, as always, for reading.
In early January of 2020, in those nostalgic Pre-Pandemic Days, I wrote in my journal about finding ourselves beyond the last childhood “transition” for our son, who was on the cusp of 21. I felt hopeful that I would find a way to get more comfortable with where we are, whatever this is, treading lightly into “adult services,” but without anything looming on the horizon to worry over.
Ha.
I actually wrote: “I feel like we’re going into ‘homebody’ mode for a while, and that feels good. Less pressure to meet major milestones, and just a focus on daily happiness and gentle progress.”
Little did I know how “homebody” this life would literally become…and how we’d still be in that same space well into 2021.
I’m certainly getting practice trying to get comfortable with whatever this is.
We got through the 2020 holidays in self-isolation. On the outside, our house celebrated Halloween and Christmas, essentially decorating for the neighbors. Inside our home, we kept things simple since our son prefers sameness. Due to a misunderstanding in online shopping, I bought a much-tinier-than-expected potted Christmas tree, but that little guy was a good fit for our scaled-down celebration.
I’ve learned that I’m not too bothered to keep physically distanced from people in general. But I also learned that I crave some level of social interaction more than I thought. When my son declines to join in the virtual groups his day program offers – the novelty of Zoom has worn off – my disappointment in missing out on the conversations and activities makes me wonder who I’m really pushing his participation for. I set up my own weekly Zoom check-in with my girlfriends, because geez mom, get your own friends.
The “in case of emergency” bag I put together early in the pandemic – with lists of meds and helpful accommodations and extra fidget beads – still sits, thankfully unused, by the door to the garage. My anxiety over “what ifs” has subsided somewhat, but our practical mask-wearing and limited outside contact has not – not until those numbers are much, much lower and vaccines become more widely available.
My son has had time to practice a lot of daily living skills, household chores, and the language he needs to express himself. His favorites lately seem to be “Leave” (for those pesky Zoom meetings) and “Stand up” (when I’ve overstayed my welcome on his couch).
But the other day he came out with a very clear and very rare eight-syllable request for “apple-cinnamon-donut-please” – thanks to a gift from his grandparents of a donut pan and mixes. Yessir, let’s make some cake for breakfast!
Our 2021 Spring/Summer calendar looks similar to our 2020 one – except that instead of displaying rows of disappointed X’s over cancelled plans, 2021 is just sadly blank to begin with. We have a tentative vision of getting away from home perhaps later this summer or fall, in a post-pandemic world (we hope). But the anticipation for this coming summer is palpable anyway, as we watch our new pool being dug out in our backyard.
I’m so tired of eating the same dozen meals that I know how to make (and that my family will eat). I caught sight of a gorgeous pad thai dish on a cooking show that brought me to tears.
But we’re keeping it together. I’m focused on mental health—tending to my son’s by helping him practice coping skills, getting him outside, and letting him opt out of more things, and caring for my own, through regular (and very basic) meditation and exercise, healthful(ish) eating, more regular check-ins with friends or family, and reducing time on social media or news sites.
And writing helps, too. Though this is my first public “post” since September, I’ve been writing daily – as a way to document this crazy time and to help me make sense of this role and responsibility that I have for this kid of mine. Writing still helps me connect with him, even (or especially) on days when he asks me to “leave” more than anything else.
It fills a creative need in me, too, when I find a way to take the jumbled words I’ve dumped into my personal journal and craft them into something that might actually make sense to others – as I did on my Stay Quirky blog on and off since April 2012, and what I hope to continue doing with “It’s Like This.”
This writing work fuels me to keep doing my most important work as my son’s aide and ally.
And your willingness to take a moment to read my little musings – likely not the most urgent or important task in your overloaded email box – is not insignificant. You are fulfilling a vital role as my ally and support.
Thank you. I am grateful that you are here with me.
Oh, remember the magic of clothespins and blue tape? I’ve found another visual strategy that is doing wonders to quell some disagreements around here. I’ll tell you about it in a couple of weeks, on March 16th!
