Realistic Evaluations of (My) Parental Stress Levels

Me and Leo goofing off
[image: Selfie of me and Leo. He is making
a goofy face; I am not.]
That damned flu hit our family last week. It sucked. It took out many nodes in our people network as well.

We didn't have as awful a time as many, possibly because we'd had our shots, possibly because luck. My mom, who works at a hospital, confirmed that this is not a flu to f**k with (I am paraphrasing), as her facility has already had several deaths. It is not too late to get your flu shot!

Besides being sick, the flu made me grumpy: Even though I prefer to be home, I resent having to stay home. So as soon as everyone else was well(ish) and back to their regularly scheduled, the-hell-out-of-my-space routines, I resumed my own routine. Which sometimes includes hikes. Which, the first time out, sparked a coughing fit that shut me down and almost sent me back home. Scary, but I was fine.

After that fit, though, I kept feeling light-headed. Like I couldn't get enough air in my lungs. I decided to sleep on it. I thought I felt better after a full night with my lovely new C-PAP machine stabilizing the air pressure in my head, but by mid-morning I was feeling light-headed and sub-oxygenated again, and finally went in to see a doctor just to be sure I wasn't traipsing around with pneumonia (as has happened before).

The doctor took all my vitals, even did an EKG (which, gaah, embarrassing; I just wanted my lungs listened to and my oxygen saturation pinged). All my everything was totally fine.

And then he asked me: How is your stress level? I told him I was fine, we were getting over the flu, I have been on Prozac for more than a year and it is useful ... and then I started laughing like a hyena.

He asked why, and I said, "Well, this is just my life, and you have to understand that no one is to blame and I'm used to it, but ... well my son hasn't really slept in ten days, though he's doing OK. And his respite workers were sick for all their sessions too. And his poor dad had a super-intense week at work and powered through even though he was sick, which had me worried. So yes, I guess I have been more stressed than usual lately."

To his credit, the doctor's eyes only widened for a moment before he snapped back into professionalism, and suggested that I focus on full-diaphragm breathing, and also on paying attention to whether or not I was holding my breath (I was), and finally consider exploring other stress reduction techniques. It may be that the wee dose of Prozac I currently take needs adjusting. It may be that it will take a few more days for me to be 100%.

I think a lot of us parents whose kids need significant support have a hard time talking about our own support needs in a reasonable way. While we do not and cannot blame our kids for matters over which they have no control, it is tricky to talk about why we might need extra space or help without people assuming our kids are the problem, or feeling like we're going for a pity grab. Which, that's all rooted in society's shitty shallow attitudes towards disability, so f**k society for making yet another aspect of living our lives that much more difficult for us.

Mostly I'm telling you about my inability to recognize my own physical stress symptoms to remind you to take extra good care of, and go easy on, yourself when things are harder than usual. Because while there are bucketloads of research underscoring how acceptance and understanding reduce stress levels in parents of kids with disabilities, a positive or pragmatic "I got it" attitude isn't always going to be enough when the entire family's support needs intensify. If we're going to be the parent our family needs and also make it through these tough times ourselves, we need recognize when it's time to readjust.

We need to be aware of how being stressed out affects our bodies, how that stress can manifest in weird or seemingly unrelated physical ways, and be mindful of that weirdness not just in ourselves but in other family members, too.

The factors leading to my not-pneumonia can be considered bad luck only insofar as this country doesn't have a social support network that recognizes and properly provides respite for our families. As I noted to a friend, I have a daydream that Sweden's legendary social fabric provides night time respite workers who hang out with people with disabilities as needed, so that both they and their families get the care they deserve. And if the Swedes have no such program, I don't want to know about that.

(We're all much better now.)

(Remember to breathe from your diaphragm.)


IACC Meeting Tomorrow, January 17

The NIH's Interagency Autism Coordinating Committee, or IACC, will be meeting all day tomorrow, Wednesday, January 17th, 9AM to 5 PM East Coast time. What happens at the IACC meetings? From the site:
"The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be open to the public and will be accessible by webcast and conference call."
So, if you can't attend in person, you can watch the webcast. If don't have all day to watch the webcast, you can choose sessions from the agenda.

The IACC also accepts both in-person and written public comments, which need to be submitted seven business days before the meetings. Below is the comment I submitted for this meeting. Once of these days I'll make it in person.

If you're thinking to yourself, "Oh my comments won't make a difference," then perhaps you should take a look at the wildly varying ... quality of the submitted comments for this session, and also how few they are. Thoughtful, well-reasoned, non-profane, non-pseudoscience, non-self-loathing comments, both public and oral, are in short supply.
I am the parent of a 17-year-old high-support autistic son, and am writing regarding my concerns about his near-future integrated housing options. Those concerns are twofold: 1) I want my son to be part of his community, and 2) I am worried about ongoing efforts to erode existing civil rights safeguards that protect and guarantee integration for people with disabilities. 
As this committee must be aware of the body of research supporting integrated housing options for people with disabilities, in terms of both improved quality of life and wider community disability acceptance, I will instead emphasize the basic decency factor: My son and his adult soon-to-be peers are part of their local communities, and they deserve whatever supports they need to live the lives they want to live—in those communities. I urge the committee to redouble efforts to make those options more readily available, and to identify attempts at segregated housing, veiled or outright, farm-based or "neo-institutional," as the isolating and dehumanizing options that they are. 
I also urge the committee to exercise vigilance and demonstrate opposition to recent Department of Justice rollbacks on disability protections. We cannot allow civil rights for autistic people, including those integration protections upheld by Olmstead, to be decided by business interests (e.g., the sheltered workshop industry suspected to have lobbied for last month's disappointing DOJ actions). My son's housing options need to be determined by what he needs and deserves, and not by the calculations of a profit-minded entity.
I would like to thank the Committee members for both their time, and their hard work.
I may not be able to watch much of it as we're all down with the flu. But I'll try. And I hope you will, if you can, too.