From the Newsletter
My Recipe is Exercise, Work, Friends, Pace, and Advocacy. And Beer.
“The Twisties” did her in.
Three days ago, Simone Biles stunned the world by dropping out of the team competition for gymnastics in the Olympics. She said that stress had messed with her head, causing her to lose track of her body in the air during her somersaults in the sky, a condition known as “the twisties.” She might still compete in the individual competition, which is leading to some shade on the Internet, but we’re not dealing with that now. Today, the topic is mental health for caregivers.
Like Simone Biles, parents of kids with disabilities are under high levels of pressure — their kids have extreme needs; the system doesn’t work for them; there’s the neverending urgency to do therapy while brains are young and plastic. Add on the abandonment from the state and schools during this pandemic and you have all the makings of major parental twisties.
How do you know when you’ve hit your limit? For me, I know I’m burnt out when simple tasks, like going to the supermarket for a gallon of milk or writing a quick blog post, seem monumental. It would be nice to walk off the mat, do some interviews, and take a week off, but that’s not easy to do when you’re a high needs parent. If Steve’s busy with work, I have no back-up system.
Despite those challenges, parents have to put their oxygen mask on first. You can’t help others, if you are a mess. I have five tips for special needs parents, so they can keep their marbles when under a ton of pressure.
- Exercise
This is a simple one — exercise. Find the time to move around outside or at the gym every single day. Set a routine and goals for yourself. Get a Fitbit. For the past two months, I’ve been running three miles every day. This is most intense exercise than I’ve gotten in years, and I’m beyond thrilled with myself. I did a 5K a few weeks ago, and I’m planning more for the fall.
Exercise is good for everyone’s mental health, but it’s particularly important if you are caring for someone else. They are so dependent on you that sometimes the boundaries between your body and theirs can feel blurred. Exercise can help you reclaim your body’s independence. As a bonus benefit, exercise, along with a good haircut and cute dress, will make you the hottest parent in town, which is very satisfying.
- Work
I was never awesome at mixing full time work with parenting. I left academia ten years ago, when my family responsibilities were too great, but I never stopped working. I transitioned to journalism and built a new flexible career. Sure, I hit a ceiling, because I can’t jump at every opportunity, but it’s still worth it.
Having a challenging, interesting job is essential to my mental health and self-definition. I need another identity beyond “parent” or “parent of a special needs kid.” Sure, those titles are definitely part of my job description, but it isn’t all I am or do. While I don’t pull in a ton of money — flexible writers aren’t well compensated. Shocker, I know. — I put my paychecks in a separate bank account and then blow it all on something special for the family, when I accumulate enough. I love to feel like I’m contributing monitarially to the common good.
I’m really lucky in so many ways, I know. I enjoyed being a professor, particularly my time in the classroom, but my first love was writing. I wrote for my college newspaper and always wrote little essays and stories. So, I’m happy with how things turned out. My experiences as a parent certainly inform my work as a writer, but raising a kid with autism cannot be everything that I do.
- Have Cool Friends
On Tuesday night, I joined four friends at Trivia night at a local pub. Tonight, I’m taking the train to Hoboken, NJ to meet a high school buddy at a beer house. Sometimes Steve and I socialize separately, sometimes together, sometimes we drag Ian along. But the point is that we socialize.
Some friends are parents; others not. Some are special ed friends, the kind that likes to have fun. It’s nice to know people who get your situation. We went with two other families to a waterpark for the day last Sunday. Corinna, Elaine, and I drank cool beers in the shade, while the autistic young men and our husbands rode the roller coasters. We talked about special schools for the boys and vacation plans and home renovations.
Special ed parents often feel isolated, because they don’t fit into community activities. If your child doesn’t attend the local school or play in a soccer league, it’s harder to make friends. For me, that challenge has turned out to be an unexpected gift. I have had to be more creative about making friends and more open about connecting with people who are different from me.
A cool beer in the shade and some random chit-chat with girl friends is one of my favorite things in the world. It’s an essential part of my mental health.
- Pace Yourself
In this week’s Atlantic, Annie Lowery writes, “American benefit programs are, as a whole, difficult and sometimes impossible for everyday citizens to use. Our public policy is crafted from red tape, entangling millions of people who are struggling to find a job, failing to feed their kids, sliding into poverty, or managing a disabling health condition.”
She doesn’t specifically mention disability issues and the barriers that parents face when trying to get services from state bureaucracies and school districts. That’s fine, because I’m writing a book about that.
Presently, I am dealing with endless paperwork getting Ian qualified for disability insurance. Even registering him with special services department at the local community college is a major hassle.
How am I dealing with all that crap? I pace myself. I make a list of everything that has to be done and then check off one thing a day. If I deal with bureaucracy nonsense for longer than one hour a day, I reward myself with a large glass of red wine and cheese/crackers in the evening. I’m allowed ALL THE CALORIES if I talk with the social security office.
- Advocate
For me, complaining in public is a major release valve for dealing with paperwork crap, inequities, and unfairness. I go to public meetings and talk. A lot. I am a regular presence at school board meetings. When our local community college totally fell apart during COVID, I figured out the names of the obscure political officials in charge; I wrote them letters and left messages on their facebook page.
Want to participate in your next school board meeting? I give some tips here. I explained on twitter how to ask your district about plans to address learning loss in the fall.
But one should not complain without contributing, so I set up a Facebook page of parents of special ed families in town with over 500 members. I volunteered for the Special Ed PTA. Last Friday, I organized a trip to the movies for a group of autistic boys.
Advocating and organizing helps me feel that I’m not alone. I am a strong believer in the value of democratic participation. If we all speak up, we can make changes.
Everyone’s path toward mental health is not the same. Socializing might not be your cup of tea. That’s fine! No judgments here. Just don’t forget your own mental health during these stressful times.
Apt. 11d 
Excellent article with a good lead in on twisties. I’ve always understood “put on your own oxygen mask first” but also do not have high needs children and have lots of support. I’m also insistent on teaching the differences between needs and wants for everyone (though I understand that some needs are common to everyone, but that some wants are needs for some). So, it’s rarely hard for me to put on my own mask and I am perfectly capable of stating that my needs matter (which, I understand is hard for many mothers, some because of practical demands on them others for psychological and socialization reasons, like my own mom).
Your article reminds many moms, even ones who have many responsibilities, that they matter and gives some pretty practical advice about how to deal with their own twisties.
I think moms need to know when they actually have the twisties to the point that fulfilling their responsibilities might cause them harm, and if they need to actually step away from the mat. Many mothers don’t have any support, but even ones who shoulder most of the responsibilities might need the time off, that, say, a partner can step in.
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Thanks! Honestly, I don’t have things too bad. My kid is extremely low maintenance. For me, bureaucracy is the killer. Ian’s at a transition point, so the paperwork is crushing me. We’re also uncertain about the best path forward, so I have to pave the way for a best case and a worst case scenario. But Ian can amuse himself all day doing mysterious things on his computer.
For other parents, it’s more than paperwork; their kids are difficult. I’ve been reading Facebook pages for parents of extremely autistic kids to better understand their needs. As a society, we suck for abandoning those women and their children.
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I think I was responding to not being able to walk away from the mat. I truly believe that we are all allowed to acknowledge our challenges even if there are others who are much worse off than us (though not to them and not at the moment of extreme challenge).
I don’t find many people who hate paperwork and filling out forms as much as I do. I have foisted off the responsibility on others almost all the time — spouse actually kind of appreciates filling out paperwork as a use of his precision & careful reading skills. My dad, whose probably as bad as I am actually negotiated with his first department chair that he wouldn’t have to fill out any forms and still feels PTSD about FAFSA forms he filled out when we were in school.
Uncertainty and paperwork crushes all of us. And your points are good, especially for those women who may question whether they have a “right” to go out for the evening when the paperwork isn’t done or the path not planned or their child wants them. I know there are moms out there whose children need them and don’t have the support they need and agree that we have to do more.
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The hard part is when your child has skills, or you think he could develop skills, that need to be constantly reinforced and encouraged. Typical children reach a point where their environment provides all the practice and reinforcement they need, or at least enough of it. So then parents can back off and let these informal experiences unfold.
Special needs kids who are functional in some areas are not so lucky — they need activities that are not the ones randomly found in their environment, but ones that are designed to “keep them on track.” In addition to the fact that these are not always available, there is the problem that some interventions are not particularly effective. They are better than nothing (or so we hope) but they can seem sort of inadequate. Maybe because they are not well designed, or maybe because there just isn’t enough knowledge about what would help.
I’m thinking of the similarity to some of my friends with physical disabilities present from birth. They do all kinds of physical therapy and other treatments, but they don’t get full use of their bodies, no matter how hard they work at it.
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