Wednesday, August 5, 2020

Anti-worry strategies from special needs moms

A life-changing event that we could have never imagined would happen. Doctors without answers. Feeling powerless as a parent. Freakouts about the future. 

Yes, I'm talking about the pandemic. But this is also a description of how I felt 17 years ago, when Max was born and we found out he'd had a stroke. There are a lot of parallels between that time and what I'm grappling with now, especially the voluminous amount of uncertainty and worry I feel. 

Every mom worries about their child, of course, but moms of kids with disabilities have a whole other world of worry. This might be because doctors gave us grim news; we were told at the hospital that Max might never walk or talk and he could have hearing and vision problems, along with cognitive issues. One doctor said that his future looked "ominous." We also worry because we have preconceived ideas and expectations of how children "should" develop , and it takes a long time to let those go. 

Over the years, I've learned some anxiety-reducing techniques, the same ones that other special needs moms use as well. They were self-taught out of necessity, because it is not possible to go to work, be a calm parent or just live your life when all you can think about is whether your child is going to be OK. Some stuff that's helped: 


When Max was little, I tortured myself by reading the baby milestone newsletters and the What To Expect first year and toddler years books. Reading them was a painful reminder of all the milestones Max wasn't hitting. Finally, I unsubscribed and gave the books away. I still worried about his development, but not obsessing about the milestones better enabled me to focus on the inchstones—a sound uttered, eye contact made, fingers loosened and not fisted for a few minutes. Watching CNN at night at the start of the pandemic for hours at a time was having the same devastating effect on me. And so, I quit it. I check websites for news, but no more sitting in front of the TV and sobbing.



When a neurologist in the NICU showed me and Dave x-rays of Max's brain, we despaired. The doctor talked to us and Dave about brain plasticity, but I felt powerless. What could we do? During those two weeks of Max's hospital stay, though, I found out about Early Intervention from a social worker and contacted local EI coordinator. That was the one and only thing that brought me comfort during that time. Once we were back home, we got home enrolled and I started looking into extra therapies and alternate therapies and All Of The Therapies. It's how I've operated ever since: Research. Google (within reason). Network. Reach out to doctors and other parents, even specialists in other parts of the country—they are sometimes willing to share advice or recommendations. Doing what's within my powers to help Max takes the edge of the worry and, of course, benefits Max. 

As much as I'd like to come up with a coronavirus vaccine, that is not within my repertoire of skills. (Neither is cooking, if you ask my family, but please don't.) So in the last couple of weeks, as I've grown more anxious about the start of school, I've scheduled conversations. I had one yesterday with Max's principal about virtual learning and the best classroom placement for Max. Last night, I put out feelers to teachers I know about a preschool pod teacher for Ben and a few other kids, to be taught where and by whom, TBD. The future remains uncertain, but I felt so much better after getting conversations going. 


Seriously. For years now, my worry time has ben 9:00 to 9:10 p.m., or as close to then as possible. I sit in the same spot, the comfy chair in our den, and give myself permission to worry about everything big and little. And when I get up, I shut the worries off. Once you get into the practice, it actually helps you quit worrying all day long because you know you have a dedicated time when you can let your freakouts fly.


Raising Max has shown me the power of the parent hivemind—there is endless practical stuff we moms and dads know that experts may not, from the most comfy for foot braces to how to get a child to stop kick-kick-kicking the dinner table. I've picked up so much helpful info from my blog Facebook page and other groups for parents of kids with disabilities and parents of kids with cerebral palsy. As we make decisions about school, I've connected with lots of other parents and reached out to doctors and various educators in my network for thoughts and opinions. Knowledge. Is. Power.

Deep breaths—from the diaphragm!—are what experts always recommend for de-stressing. So what if you have to lock yourself in your bathroom. And to be sure, you'll feel relaxed for a couple of minutes. Soon after you've taken those deep breaths, though, your brain will be headed right back to Worrysville. So this is what you've gotta take: Get your partner to TAKE YOUR CHILD/CHILDREN OUT OF THE HOUSE. Even for just an hour or two. That way, you can have time to think. That way, you can hear yourself think. Maybe you can even call a friend or, whoa, polish your nails. It might take all of your willpower to not spend the entire time cleaning and organizing, but having the house to yourself brings some peace and fresh perspective. Especially these days, when we're all on top of each other.



When Max was an infant, I had so many questions about what he would be able to do—would he ever take steps? Would he be able to understand me? Would he be able to play with toys like other kids? Would he ever say "Mommy" or "Daddy" or any words? It took me a long time to accept that my boy Max was on his own timeline, and nobody else's. I just had to take things day by day and focus on the child in front of my eyes, not the one I wondered if he'd be. 

The same has been true for the pandemic. Deciding whether or not to let Max stay home from school has been hard, especially because it seemed like we were basically deciding the entire 2020/2021 school year. I had to force myself to focus on making a decision just for the start of the academic year, and then it didn't feel so monumental or depressing. Max likely will do virtual schooling for a while. But thinking only about the immediate future gave me focus. And once we had a decision, it was such a relief.  


Photo: Twitter/@joncmu

1 comment:

  1. Thank you for sharing these strategies. They are all wonderful. I particularly like the one about creating a dedicated worrying time. It's very pragmatic but also keeps it contained to a minimum. I am so glad I discovered your wonderful blog!


Thanks for sharing!

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