Worries and Fears Forever, Apparently

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— no context the good place (@nocontexttgp) January 18, 2018

Chidi on The Good Place just kind of speaks for all of us, doesn't he? I sure know that endless parade of worries and concerns turning into fears. It marches through present events, whether things are going well or not, and drags me back to past situations and decisions that will, apparently, never be settled. It's been so many years and I keep hoping I can just learn to be patient and calm and accepting of what comes, and if there's a secret to that, I haven't found it. Have you? Do you have a secret for not getting wiped out by worrying and flummoxed by fears?

I Just Want to Talk (and for You to Agree with Me)

"I want you to do what you want. I just want you to talk to me about it. I want us to talk about what it will mean and how we’ll make it work. I want us to talk like we’re going to figure it out together. I want us to talk … because I like the sound of your voice. I just want to talk."

I watch this clip from the next to last episode of The West Wing frequently because it's such a sweet ending to a long-running and slow-developing love story on the show. But I also think about it sometimes when I find myself with no one to talk to about things but myself. And you know, I get tired of the sound of my voice.

My husband and I have fallen into a pattern that I think is fairly typical for parents of kids with special needs. I do the researching and planning and worrying and second-guessing, and he implements whatever it is I wrestle into place. He's very supportive and rarely disagrees with or argues with my plans, and I appreciate that. I want to do what I want. But I'd still like us to talk about what it will mean and how we'll make it work. I want us to talk like we're going to figure it out together. I just want to talk.

I remember having the same feeling back in my IEP days, where there seemed to be two options: I would shut up and completely agree to whatever the professionals wanted, or they would throw up their hands and give in to whatever they felt I was demanding. And yeah, I wanted them to do what I wanted. But I wanted to talk about what it would mean and how we would make it work. I wanted us to talk like we were going to figure it out together. I just wanted to talk.

I'm out of that school grind now and making decisions for young adults whose communication issues make it hard for me to get the feedback I like. I'm still making plans for them, and explaining those plans to them, and justifying those plans to myself and anybody within listening range of my voice, like the sound of it or not. I want them to do what they want, but I want it to be what I want. It would be nice if they understood what it would mean and how we'll make it work, and that they have a part in us figuring it out together, but I'm never quite sure. Which means, once again, that the weight of every decision is on me.

That's probably the way it is in most relationships that aren't scripted by TV writers (how do I get me one of those, by the way?). We want in theory to share the decisions and their weight, but wanting to do what we want to do doesn't always go along with that. We want detailed positive reinforcement for our decisions rather than a real give and take. It's lucky for Danny that the show ends before he has to make good on his swoon-worthy declaration. But it's a nice dream, isn't it? Let me go watch that again.

Job Outlook: Cautiously Optimistic, with a Side of Confusion

I wrote here a while back about my twentysomething kids' frustration in trying to find jobs, or more accurately, my frustration over their frustration. I complained about employers who don't seem at all interested in giving young people with even fairly mild disabilities a chance, and said those who did would get me singing their praises instead of shaking my fist.

A little while after that, I put a link to the post on Twitter and cc'd a few business who had particularly broken our hearts.

Two things happened almost immediately after. One of the companies I tagged, Chipotle, expressed concern on Twitter. I wound up having a phone conversation that gave me some faith that if one of my kids interviews at a Chipotle again, we'll have a less frustrating experience. If nothing else, we'll stop cursing when we drive by Chipotles now.

The second thing was that a job kind of fell from the sky.

I can't paint a direct line between my Tweet and the call from Wendy's, but it surely seems serendipitous. Unlike so many past job attempts, an online application led quickly to an interview, an acceptance, and a first day on the job. I probably shouldn't jinx it by writing about it, but ... I did promise to sing praises.

It's also particularly appropriate that this so-much-wished-for job comes from Wendy's, which is at least partially responsible for my kids being my kids. Those signs in Wendy's restaurants for the National Adoption Center got us started thinking "Hey, maybe we could adopt an older kid or two." Though we weren't successful finding a match through that program, the agency who did our home study to submit there ultimately started facilitating adoptions in Russia, and showed us a picture of our daughter, waiting in an orphanage. This kind of feels like a full circle somehow.

But of course, as the job fairy giveth, so does the job fairy taketh away. A job I thought my son had has evaporated. This is not the first time someone has said they're hiring this kid, made us wait, and then never done anything about it. It's not so much that I want to fight for this particular job as I want an explanation of how this happens. So Marriott, I've been tweeting at you, and maybe I'll be lucky twice. Check this space.

Open Letter to Employers Who've Rejected My Kids

“Thank you for your interest in employing my young-adult children.”

Wait. You have no interest, do you? Let me start again.

“Thank you for pretending to be interested in employing my young adults so that at least for a brief period of time, we had something to be excited about.”

Though of course, when you reply within seconds of an online application being submitted, you’re kind of cheating us of that. Could you, maybe, delay the auto-rejection for at least as long as it took to fill out those online pages and pages?

Let me try again, for the few that led us on at least a little bit.

“Thank you for having sufficient interest in my young adults to call them in for an interview before breaking their hearts with that rejection e-mail.”

Well, now, wait. So few actually bother to deliver a post-interview rejection, favoring the “If we just never contact them again, they'll figure it out eventually” strategy. Remember that time my daughter kept calling and calling and being promised a reply and nothing, nothing, nothing? Good times!

Maybe: “Thank you for giving my young adults practice in interviewing skills, patience, perseverance, and emotional management of rejection.”

Those are lessons I'm not learning so well, obviously. Sure, I give my kids all the “It's not a personal rejection, it has nothing to do with disability, you don't know who else was in the running or exactly what they were looking for. We'll just keep looking, the right place for you is out there, sweetie."

But what I want to write is:

“Thank you, you inconsiderate, small-hearted, closed-minded, short-sighted hiring person, for your contribution to the chipping away of my kids’ self-confidence and self-esteem. Does it take so much vision and imagination to see young adults with disabilities as worthy of a chance and at least as many opportunities to fall short yet stay employed that you'd give to absolutely anybody else? With just a little help up front, you'd get yourself a long-serving, loyal, enthusiastic, grateful employee. And you'd get me singing your praises on my blog instead of shaking my fist.”

Requiem for a Toy Store

I see in the news that Toys R Us will soon be no more. My kids are past the age now where toys are a major purchase item for us, and I'm certainly happy buying online for any incidental plaything purchases I need to make. But the thought of Toys R Us stores closing still touches my heart, because some of the best times I spent with my son when he was young took place at our local Toys R Us.

Some of the cheapest, too.

The visits I'm thinking of weren't about picking big birthday presents or getting major gear for the yard or the bedroom (although we absolutely had those too—don't blame me for the company going under). The ones I remember most fondly revolved around my son picking out a single Matchbox or Hot Wheels car. One tiny automobile.

Honestly, he could scan those spinners looking for Just the Right One for, like, an hour and a half.

And I'd gladly let him. I'd bring a book with me and find an out-of-the-way patch of floor to sit on while he reveled in the many many many options, going back and forth, considering so carefully, delighted to have the freedom of extremely leisurely choice.

Time to indulge his obsessions was not something he got a lot of in those days. Teachers and therapists were generally invested in preventing exactly that. Focusing attention on what other people found important was at the top of the skill goals others had for him. I was often advised that such obsessions were bad for him and something I must work vigorously to curtail.

I didn't tell them about our ninety-minute toy store idylls.

I had come to learn that his obsessions—for little toy cars, certainly, and for keys as well—offered the kind of door into his attention and personality and interest that was otherwise so hard to find. I was sure not going to slam it. While our Toys R Us car-search visits weren't what some parents would call "together time," since we weren't actually interacting, these moments of peaceful co-existence were a nice oasis in an often stressful time in our lives.

Mom got a little respite with her book. Boy got time to focus on something that interested him. And in the end, I bought a 99-cent car and we headed home. Lots of value for that 99 cents.

I'm grateful for Toys R Us for allowing us the space and tolerance to just let a boy endlessly shop and look and love and appreciate and make whatever calculations were going on in his head. And let a mom just hang without hurrying him. It was a safe and peaceful space, and one we needed. RIP, old store. You'll live in my memory.

IEP PTSD

You have to understand
that nothing good comes after the words
“You have to understand,”
only a slap of somebody’s idea of reality
that you are woefully ignorant of
and must be made to comprehend.

You have to understand
that your child is limited
and resources are limited
and options are limited
and the system’s ability to do anything
other than what the system has always done
is limited
and tolerance for parents
who refuse to understand that
is limited too.

You have to understand
that the experts know everything
and you know nothing
and should sign the papers
and say thank you.

You have to understand
that you can only ask for appropriate, not best,
because best is not for children like yours
or parents like you.

You have to understand
what sitting in a room with strangers
and hearing your child reduced to numbers,
bad numbers,
hopeless numbers,
year after year after year
can do to a parent.

You have to understand
the way we are weaponized
by the endless well-meaning negativity
and that fighting is the only alternative to fear,
hassling to hopelessness,
adversariness to abdication,
strength to weakness.

You have to understand
that we can’t not advocate,
we can’t not react with anger and doubt and suspicion,
we can’t not take it personally,
we can’t not make it our issue,
our identity.

You have to understand
how it follows us home from school--
the defensiveness, the readiness to assume the worst,
the understanding that everything imperfect
is ours to find a fix for.
Mama Bears can’t hibernate.

You have to understand
how habits formed when our children are young,
instincts sharpened, reflexes honed,
live on well past their usefulness.
When we’re long-forgotten by the educators
who said those things that still burn in our brains,
who started those files that consumed our lives,
who made those judgments we still press against,
who set us on our road of second-guessing
every last decision and triumph and certainty,
we remember everything.

You have to understand
how advocacy denies us acceptance,
and appropriate will never seem best
ever, anywhere, even when maybe it is,
who knows?
We will not recognize it.
We will never let our guard down.
We will never quite trust.
We will never really relax.
We will never understand.

Are Your Child's Needs Part of Your School's Emergency Planning?

Back when my son was in school, and after lockdown drills became a thing, I remember getting notes complaining that he was not behaving with appropriate quiet stillness and asking that I talk to him about the seriousness of the drill and the need for everyone to practice laying low and praying not to get shot. And I appreciate the stressful situation school personnel are in. I'm sure they're freaked out by the implications of lockdown drills themselves. A kid talking and making noise and moving around and being disruptive could be a life-and-death issue. I get it.

But none of that changes the fact that disabilities don't come with an emergency off switch. If a student has a diagnosed disability that impairs the ability to sit still and be quiet — and that makes regulation in times of stress even less likely — that disability is still going to be present and still going to require support and accommodation no matter how many memos you put out stating the lockdown rules and how many notes you send home.

I've been looking around for a while for information on how exactly schools are supposed to manage this kind of challenge and didn't find much in the way of information. Finally, I saw an article from the journal Teaching Exceptional Children titled “Supporting Students With Disabilities During School Crises: A Teacher’s Guide,” written by two special-education professors who also have kids with disabilities and also wondered, “Why isn't anyone creating resources to handle this really obvious problem that is not going to go away no matter how much you may wish it so?”

I invited the authors, Dr. Dusty Columbia Embury and Dr. Laura Clarke, to Q&A with me about this on the Friendship Circle site, and that post is up now: “How to Keep Students with Disabilities Safe in Lockdowns, Evacuations, and Other School Crises.” Please, read both these articles and share them around. This is something we all have to put our heads together about.

Note that this is not just about kids with behavioral or sensory issues. Think about what happens when your kid is locked down in one room and the insulin she's scheduled to get right now is in another. Think about how your kid who has to be moved from a wheelchair to a chair and back is going to be evacuated quickly. If your child has a seizure or an allergic reaction at the worst possible time, would the staff they happen to be with know what to do?

No one knows when a real disaster is going to happen or how anyone will react when it does. But schools think it's important enough to practice and practice and practice for it. Those practices alone can be a disaster for kids with disabilities, if they don't include rehearsal for the accommodations that are their legitimate need and right. If your school's not on top of that, print out the two articles linked above, schedule an IEP meeting, and get some balls rolling.