What "Dancing with the Stars" Can Teach Us About Inclusion

A new season of Dancing with the Stars starts tonight, and as has become the norm for this particular reality show, the cast includes a contestant with a disability. Paralympian Danelle Umstead, a visually impaired Alpine skier, will follow in the footsteps of dancing stars like Amy Purdy, Noah Galloway, and Nyle DiMarco. Looking forward to watching Danelle perform reminded me of a long-ago article I wrote in my About.com days about Dancing with the Stars and inclusion. Originally published in 2015, it's long gone from my old site, but I dredged it up from the Wayback Machine for your overthinking enjoyment.

* * *

[​Warning: What follows qualifies heavily as "thinking too much about reality television." I do indeed see everything through special-needs lenses. Read at your own eye-rolling risk.]

Visualizing what inclusion might look like in a classroom is often hard for parents and educators. How can students with a wide range of abilities be meaningfully exposed to the same material? How is it possible to grant equal access in a way that's fair to everybody? How can progress be evaluated when learning is happening on many levels? Won't the lower-functioning get left behind? Won't the higher-functioning get bored?

You may not have a school to visit in your community where inclusion is working gloriously to watch and learn and get an idea how one might go about this. But twice a year, there's an example on broadcast TV that can provide some inspiration and insight, if you're willing to accept that those things can come from unexpected places. Want to see inclusion and differentiated instruction in action? Tune into a little show called ​Dancing With the Stars.

The sequin-heavy ABC dance competition pairs "stars" (that term is used with extreme looseness) with professional dancers, with the premise that "celebrities" (also loosely used) with no professional dance experience will learn how to dance over the weeks of competition. Turns out "no experience" is used pretty loosely too, because Olympic figure skaters and ice dancers and gymnasts along with musicians and Disney Channel stars have all come onboard with a high degree of dance training and ability.

These gifted contestants share the floor with contestants with less training but some natural talent, and contestants with more heart and humor than hoofing ability, and contestants whose age and physical condition limit the complexity of their routines, and contestants with disabilities that require special accommodations (of whom two, Season 18 runner-up Amy Purdy and Season 20 third-place finisher Noah Galloway, made it to the finals [and after this was written, Nyle DiMarco won season 22]). That's a pretty good model for an inclusion classroom.

It's also a useful framework for looking at questions of fairness and equality. If you think of the show only as a contest, it may seem unfair to ask people of modest ability to compete against near-professionals, or to penalize talented dancers for imperfect execution of things that their less-talented opponents couldn't even begin to attempt. These cries go up regularly from fans of various competitors on social media. For the purposes of inclusion — and this show, apparently — “fair” means giving everybody an opportunity to participate regardless of perceived ability and making sure each participant has what he or she needs to be successful. What learners do with that opportunity and those tools is what makes both an inclusion class and Dancing With the Stars an exciting and compelling experience.

Though the competition provides the structure for the show, Dancing With the Stars is at least as much about the process of learning and the joy of demonstrating new skills. Viewed in those terms, it's hard to imagine that a homogenous and superficially "equal" group of dancers would be nearly as interesting or effective. There's something about seeing amazing dancers negotiate complex routines, novice dancers delight in their own improvement over the course of the season, and challenged dancers find creative ways to show what they can do that would be lost if all contestants were at exactly the same level. If nothing else, diversity keeps things lively. And there's always a degree to which the contestants are inspired and emboldened by the differing gifts of their fellow dancers.

A concept we hear a lot about in inclusion conversations is differentiated instruction, and it can be hard to figure out what that means. How can a classroom of kids with all different levels of learning and ability be taught the same things? Consider the way Dancing With the Stars teaches participants with all different levels of ability. Everybody has to perform, say, the cha-cha-cha, but someone with dance experience and a flair for movement is going to learn it at a much different level than someone just starting to dance or someone with physical challenges or someone who struggles with rhythm. It's the job of the professional in each duo to choreograph the particular style of dance in a way that makes the most of the celebrity partner's ability and the least of his or her weaknesses.

Can the same be done for academic subjects? While children in an inclusion class may not each have their own personal educational choreographer, some of them will certainly have Individualized Educational Programs (IEPs). Those documents should also recognize and plan for strengths as well as weaknesses, and that same sort of individualized thinking can benefit all the students in a class who are individuals (which is to say, all the students in a class).

The challenge, both in a classroom and under the mirror ball, is to develop ways to measure every individual's progress, and offer meaningful praise and constructive criticism that points the way toward improvement. In this regard, Dancing with the Stars is perhaps a model of the problems that come with failure to do this. The judges' scores often seem arbitrary or confusing, and their comments tend too much toward gushing praise and declarations of how inspirational struggling contestants are. Reminds me of the years when my daughter's teacher assured me "She's flying!" but come IEP time could not quantify any improvement toward goals.

The show, like an inclusion class, would be much improved if the expectations for each participant were determined and communicated thoughtfully and clearly. Outcomes need to be well-defined and well-understood by everybody, in a way that challenges each dancer to stretch and grow and have that work recognized. We often see on the show that a talented dancer who just seems to be going through the motions is much less satisfying to watch and cheer than a challenged dancer giving 110 percent and loving it. Regardless of who actually receives the mirror-ball trophy, anyone who puts in the effort and participates to the fullest is a winner.

The wild card in Dancing with the Stars scoring is the home audience. Fans get to vote for their favorites by phone, text, or computer, and the most popular and well-known celebrities or pros can get a boost regardless of what happens on the dance floor. Success in this area can compensate for low scores from the judges, and that's a combination that got Noah Galloway into the Season 20 finales. The army veteran who lost an arm and leg in Iraq had a huge fan base of both military families and those inspired by his hard work and strength.

To get that sort of support from the school community for your child, you'll want to get out there and do some promotion. Join the PTA, volunteer for committees, and create positive relationships with teachers and therapists and IEP team members who can be your child's fan club. Preparing your little dancer is important, but if even you aren't voting to the maximum allowed, that prize will remain out of reach.

Hire Our Kids, But Really HIRE Them

I've been writing now and then about problems my kids have had getting jobs, and right at the moment, we're in a good place. They're still only working part-time, but they're working, and I'm grateful to their employers for apparently, at least at the moment, giving them a chance to learn and figure things out and take direction and keep working.

That shouldn't be a lot to expect, but we've also had an additional experience with what I'm calling "Bad Faith Disability Hiring," in which a job is briefly given and then snatched back when the employer realizes, apparently, that the good feeling you get from giving a kid with a disability a chance does not come with a magic wand that makes your new employee immediately 100 percent able to do whatever you want without any thought or planning or patience on your end.

I'm talking about situations where the employer in question knew the new hire had a disability, went through all the hiring paperwork and information gathering and payroll, and then after one or two or three days, turned around and said, "You're not what we're looking for." Or, "This job is not for you." Or, "We hired too many people. We'll call you when we need you." Not.

I'd believe that I was just over-believing in my kids and they're simply not capable, and yet ... there are employers who have made it work. There are people who tell me my kids are good workers. And I don't see how hiring someone and immediately taking the job away or failing to develop an employee in the hope that they'll get the hint and go away or feeling so bad about correcting someone's mistakes that you'd rather just quietly make a list and then use it to fire them is any kind of effective management conduct.

I want so strongly to advocate for hiring kids with disabilities, giving them a chance, and taking a chance on them. I believe there's a whole potential workforce of young people who only need a little time and patience and planning for success to be loyal long-time employees. But for goodness sake, employers, if you don't mean it, don't do it. Not getting a job is painful, but getting one and losing it through no fault of your own is worse.

For That Back-to-School File You're Starting

Ah, back-to-school. For some parents, it's just a matter of filling out a pile of forms and fighting for the last folder at Staples. For parents of kids with special needs, there's the additional task of gathering together handouts and books to pass to teachers to explain your kid and just exactly what kind of teaching and paraprofessional-ing that will be required. If you're in that pre-distribution gathering phase right now, here are a few more things to look at, get ideas from, and share:

1. The school section of the Parents Portfolio on my Mothers with Attitude site, where I've gathered things I distributed myself in my kids’ school days along with others I saw, admired, and asked to post.
2. An article I wrote for Friendship Circle on preparing a teacher information packet. 
3. The new book by my friend and co-podcaster Nicole Eredics, Inclusion in Action, to give your school a clue on how inclusion should be done.
4. The older book by me on school advocacy, 50 Ways to Support Your Child's Special Education.
5. The back-to-school checklist I wrote for this blog a couple of years ago, which is partially serious, partially funny, and partially sad, really.

Love Notes for Special Parents, Again

Did a spruce-up recently of my inspirational message series for parents of kids with special needs. Visit the gallery on my Facebook page to see all 28 of them, download the ones that inspire you, and share them with fellow parents who could use a lift.

The Stages of Grief After Someone Rejects Your Child or Young Adult with Special Needs

1. Anger at the rejecting party.
2. Anger at yourself for having put your child in a position to be rejected.
3. Anger at every naysaying professional who ever put limits on your kid for forcing you to be constantly challenging that child to prove them wrong
4. Anger at all the voices in your head of people who thought this wasn't going to work out well and what could you possibly have been thinking.
5. Anger at yourself because obviously those voices were right, and what were you thinking.
6. Anger at everyone and everything and the whole awful mean mean world.
7. Acceptance that people just suck.
8. Planning for the next thing that will absolutely find your child included and will show everyone how wrong they were. What were they thinking?

Worries and Fears Forever, Apparently

pic.twitter.com/fWEQp3PAJ8

— 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.

If Back-to-School Night Speeches Were More Like IEP Meetings

[The recent Supreme Court case involving what constitutes a free and appropriate public education has brought this old post to my mind again. Imagine the court cases that would ensue if every parent had to deal with what parents of kids with special education experience constantly!]

One of my favorite items on my list of reasons to go to back-to-school night is the opportunity to listen to an administrator give an ambitious, promise-heavy speech about what a productive year it’s going to be, how much the school believes in the kids, how much potential the students have, and how the school is going to do everything to help each student perform to the peak of his or her ability. Not something you hear around your average IEP table, where we’re programmed to expect “appropriate” instead of “best,” modest progress toward measurable goals instead of grand achievements, and outcomes weighted with a heavy dose of reality.

What if the principal got up and gave that kind of speech at back-to-school night? It might sound something like this:

Assembled parents.

This speech may be a little hard for you to understand, because I and the large team of professionals behind me on this stage know all about education and you know so little, but I’ll try to talk in terms you will understand.

This school year, the teachers and staff will be dedicating themselves to giving your children the absolutely most appropriate education for their particular abilities. We have assessed each of your children, and frankly, most of them are never going to amount to anything. They’re going to wind up living in your basement and working fast-food. We’ll give them the education they’ll need to work a cash register or a mop, and save you the money you’d throw away trying to get them through five or six years of college they’ll never use. We’re realists here. We’re not legally required to deal in dreams.

Since it is our strong and considered belief that kids do best when they are educated with kids exactly like them, without anyone who deviates from their perceived potential for achievement to weigh them down, we’ve placed your children on a number of educational tracks, from gifted to reasonably bright to average to below average to barely hanging on to here because the law requires it. Your child will be spending the majority of his or her school day, including lunch and recess, with children on his or her precisely and professionally selected track. Perhaps we’ll let them mingle at gym. If the state insists.

Our school has state-of-the-art technology and classrooms carefully designed to maximize learning, and those of you who have children who have been assessed as having the potential to grow up to become taxpayers and politicians will certainly enjoy seeing those tonight. For the rest of you, we’ve cobbled together a collection of dark corners, library tables, converted closets, and windowless rooms in which to educate your children. It’s not like you need a SmartBoard to learn how to say, “Do you want fries with that?” We’re all about what’s appropriate, and what could be a more appropriate classroom for a future food-service employee than a table in the cafeteria? You’re welcome.

We hope you will appreciate the tremendous effort we have put into determining just how much effort your child deserves, and that you will celebrate with us the stone-cold appropriateness of all the educational opportunities you witness tonight. Just to be sure, we have some legal paperwork for you to sign on the way out of the auditorium signifying your approval of whatever the heck we decide that appropriateness entails. Please note that attorneys for the school district will be stationed in the lobby by the bake-sale table to quash any complaints.

Thank you, and have a pleasant evening.

10 Things I’d Like to See Maya DiMeo Take On

So we’ve now got three weeks of ABC’s Speechless to judge from, and I’m still loving it pretty hard. It’s fulfilling my hopes that it would be both in-jokingly true to the experience of raising kids with special needs and flat-out funny by anyone’s sitcom standards. I’m happy that J.J. is allowed to be an actual teenager, with teenage-boy interests and concerns, and that his mom sometimes makes mistakes that are all too recognizable to me.

There are some roads the show has chosen not to go down — by making a big point of the fact that J.J. is NOT in special ed, oh no no no, and having the principal and staff be hyper-cooperative rather than actively obstructionist. This means I will not get my dream of watching Mama Bear Maya take apart an IEP team (she could still be an advocate for a friend at an IEP meeting, right? right?) or fight an administration that doesn’t want any part of inclusion or her kid at all. That might not be so funny, I get it. I’ve been there, and it’s not funny at all. But I bet there are parents who were wishing they could jot down some script-written zingers for future use.

Fortunately, there are plenty of high-pressure special-needs-related situations still available for Maya to be righteously indignant at, and I look forward to watching her scorch some earth dealing with the following:

1. An insurance company denying a claim.
2. A doctor’s office keeping her and J.J. waiting for a couple of hours.
3. A doctor acting like a know-it-all.
4. Extended family members who snipe and second-guess.
5. Gatekeepers who stand between her and equipment J.J. needs.
6. Speech therapists who have opinions about J.J.’s communication options.
7. A random visit from Child Protective Services.
8. Employers who refuse to give J.J. a summer job.
9. Online commenters.
10. Crushing doubt and guilt that maybe every decision she’s ever made for her son has been wrong, driving her to hide in her room weeping while her family tiptoes lightly around.

Wait, maybe #10’s not that funny? I was hoping Speechless could find a way to make me laugh about it. What would you add to this list?

Back-to-School Checklist for Parents of Kids With Special Needs

You may have barely made it through the transition from school into summer, and guess what? It’s time to start the long and traumatic transition from summer back to school. For y’all, anyway. I am gloriously free of kids going to school at the moment, and I can use all the psychic energy I’d have put toward getting their programs in order to find them a job, please a job, any job. But that’s another post. When my kids were of school age, I remember well how I spent the last sweet weeks of summer: calling the special education department day after day after day, bellowing Where is that stuff you promised? Swear to me that it will be in place on the first day! Swear it! (Spoiler: It wasn't.)

Based on those years of sad experience, I can tell you that there’s lots more to back to school for parents of kids with special needs than just picking up some notebooks and outfits. Add these 27 items to your to-do list. And don’t ever assume that because you made sure it was in the IEP, you never have to check it again. Ha! Wouldn’t that be nice?

1. If your child needs a one-on-one paraprofessional, make sure the school remembers that and isn’t just planning to hit the pause button on your child's disabilities for a few weeks while they figure their staffing out.
2. If your child needs special equipment, or people with special training, or ramps, or elevators, or therapists, or specialists, call and make sure they will be in place. Call again. Call daily.
3. Just because your child has always taken the bus does not mean that this year the bus will show up. Call the transportation department and make sure.
4. And that car seat your child is supposed to have for said bus? Make sure they have that too.
5. Make sure the school nurse knows about your child's medical special needs.
6. Make sure there’s a school nurse.
7. Make copies of your child’s IEP to distribute to all those people you’d just assume would have been given it. Like the teacher.
8. Put together a “greatest hits” version of the IEP for the people who do need to know about specific things, do not need to know everything, and would never ever read that whole humongous gob of paper anyway. Like the gym teacher. The specials teachers. The lunch lady. The paraprofessionals. The bus driver. The bus aide. And basically everybody whose misinterpreting of your child could cause problems. So, basically everybody.
9. Examine your child’s potential school clothes for problems. Collar too easy to chew? Shoes too easy to kick off? Seams too crazy-making? Shop again.
10. If you’ve received assurances about your child having a particular teacher, a particular classroom, a particular school, call the special-education office to make sure. And keep calling. Changes happen right up until (and right on past) the last minute.
11. Stock up on special supplies: the huge binder that keeps your kid from having to go to her locker; the spiral notebook with the spiral covered so your kid can’t pick it apart; the notebooks color-coded for different subjects and purposes.
12. Condense your philosophy on the best way to handle your child into a persuasive ten-page intro to get the teacher off to a good start. Then cut it down to five pages. Then two. Then one. Brevity is important.
13. Make copies of twenty or thirty Web articles and book pages to go along with your one-page intro. Backup is important.
14. Worry that you’re giving the teacher too much to read right at the hectic start of the year.
15. Worry about everything you left out of your intro for the teacher. Worry that the teacher will be offended by it, or ignore it entirely. Worry that you have a reputation for making excuses for your child and telling teachers how to do their job.
16. Worry that the school supplies you got won’t work this year, or will make your child look different, or will go into a locker or desk and never come out.
17. Worry that no matter how many times you call, your child will be in the wrong class, with the wrong teacher, in the wrong school. With that one kid who sets your kid off.
18. Worry that your child’s clothes are all wrong, will make him/her look odd, will be uncomfortable, will be against some new dress-code rule.
19. Worry that the need-to-know IEP cheat sheet info you’ve given to all those school people will either be ignored or get you in trouble.
20. Worry that you’ve forgotten someone who should have your child’s IEP but won’t unless you provide it yourself, and your child will suffer for it.
21. Worry that just because there was a school nurse when you called doesn’t mean there will be a school nurse on the first day of school. Or the second, or the third, or …
22. Worry that the nurse will forget your child’s special needs, or not care, or overreact, or underreact, or farm that part of the job out to an untrained paraprofessional.
23. Worry that the car seat that comes on the bus will be the wrong size, or the wrong brand, or broken.
24. Worry that no matter how many times you call, the bus still won’t come. Or will come too early. Or too late.
25. Worry that all the equipment and trained personnel and building features your child needs just to, you know, be in a classroom and function will seem like silly little details to the people responsible for them.
26. Worry that if there is a paraprofessional in place for your child, he/she will be awful, or untrained, or inappropriate in some way. Or, you know, missing.
27. You know what? Just lie in a dark room from now until next June with a wet rag over your eyes, worrying. That’s a full-time job right there.

Learning to Say, “That Sucks”

A scene on an episode of Parks and Recreation I watched the other week as part of our Parenting Roundabout marathon has stuck in my head lately and got me thinking of the general unsatisfactoriness of trying to fix another person’s problems. On the show, the situation involved a man trying to cater to every complaint of his pregnant girlfriend, and being schooled by some friends that all she really wants is for him to listen to her problems and say, “That sucks.” It’s posited that this is all women really want, and I don’t know about that, but ... maybe. Sometimes. Some days.

But what’s struck me about it more this time around is how applicable it is to parenting. Even with typical kids, it’s often better to just step back and offer sympathy without judgment and without jumping in to make everything better. With our kids with special needs, it’s often impossible to jump in and make everything better, since it’s not always easy to know what exactly the problem even is. When your kid’s having a tantrum or a meltdown or any of so many sorts of discombobulation, trying to fix things so very often makes everything worse. Ditto problems at school and with friends. Certainly there are times you have to intervene, but I bet there are more times when “Yeah, that sucks” and a sympathetic presence would be at least as helpful.

I’m at a point of parenting young adults, and the “jump in and help!” strategy is getting less and less successful. As hard as it is to turn over the advocacy reins to amateurs who haven’t been training at the School of Hard IEP Meeting Knocks for years and years, it’s a necessary step ... and over and above that, parental fixing just stops working at some point. It’s hard to get complete information about what's going on in any given situation (oh, how I miss my days of being able to get the scoop from cooperative paras and therapists). Advice given often turns out to be the absolutely wrong thing to do. Young people become frustrated by the lack of respect and empowerment, or else they learn helplessness, and then you’re all out of luck.

It is so, so hard as a parent to sit back and say, “That sucks.” It is so, so hard not to jump in and fix things. It is so, so hard to not KNOW how to fix things, or even what needs to be fixed. I’m going to give this stepping back and sympathizing a little try, though, and see how far things fall apart without me holding them together with both hands. They can’t fall too far apart, right? Nothing too bad could happen? Because if I’m wrong about this and I really do have to figure every dang thing out myself and fix every problem and anticipate every outcome ... that would suck.

Why You Really Don't Want Cameras in Your Kid's Classroom

There’s been a lot of talk lately about cameras in the classroom, and I know a lot of parents of kids with special needs think this is a great way to prevent and identify abuse by teachers of our kids who are unable come home and tell us what happened. I get how appealing that is. There were plenty of times I longed to be a fly on the wall in my child's classroom. Yet the idea of an undeniable, video-preserved record of my child's day at school terrifies me, and I'm pretty sure it will cause way more trouble than it will  prevent. Consider these unintended consequences:

• Classroom stress goes up. Even great teachers who would never be abusive are going to feel tense about having a camera trained on them throughout their work day. Would you do a better job under those circumstances? For a lot of kids with special needs, more stress in the classroom = more behavior issues. You're making it worse.

• Your child's right to privacy is violated. Does every wrong answer, every social faux pas, every bit of misbehavior, every nose pick really have to be preserved forever on video? Have mercy.

• That video's going to turn up at your IEP meeting. Oh my gosh, you better believe it. And it's going to be a greatest-hits compilation of every instance when your child confirmed the need for everything the school is claiming and recommending. Will you even have access to the raw footage to make your own mix? Wouldn't that be a violation of every other kid's confidentiality?

• No more rules broken in our favor. You know how you talk to your kid's teacher and ask for special consideration, maybe a little variation from the IEP, a little leniency, a little something extra that nobody needs to know about? Yeah, kiss that goodbye.

• The money comes from somewhere. How many better solutions and opportunities are going to get thrown on the scrap heap to pay for those cameras and all that monitoring?

Instead of hurling money and technology at this problem, might there be better, cheaper, and more effective ways to deal with classroom abuse? Can we at least try the following first?

• Train all teachers and aides for the kids they will be working with. This should be the most obvious thing in the world, and yet parents would be shocked to know how little it's done. Not saying this is an excuse for abuse or a reason for it in all cases, but it surely, surely does not help.

• Stop sticking all the behavior problems in one classroom. If you're honest with yourself as a parent, you know how out-of-control extreme behaviors from your child can make you feel. Imagine having a classroom full of them. It is a recipe for disaster, and yet schools regularly dump all those kids on one teacher.

• Get serious about behavior intervention. No more allowing months to go by between identifying a problem in a classroom and getting a specialist in to strategize it. There's no pause button on this stuff. Address it immediately.

• Create a way for personnel to report abuse without repercussions. Other adults in the classroom are already recording this stuff in their brains. Figure out why they're not saying something and fix that.

• Show respect for kids with special needs all around the school. Abuse is easier when "those kids" are in some classroom away from everybody else and no one ever sees them at recess or lunch or in the hallways or feels the right to question. Even self-contained classes can be included in the school community.

Who Tells Your Story

I'm coming off a twelve-month period with my young adults with special needs that saw both the triumph of a college graduation and the trauma of job loss and mental-health crisis. I’d like to tell those of you with young kids that there’s a finish line and if you just stay the course you’ll eventually be able to break a tape and drink some water and celebrate your scores, but I haven’t found it yet. I’m still running, and I’m BEAT.

One thing that’s been providing some much-needed diversion for me lately is the musical Hamilton. I’ve never seen it live, and I probably won’t until it gets to, like, the high-school-drama-club circuit. But I listen to the cast album constantly, and I follow Lin-Manuel Miranda on Twitter, who is adorable, and I watch all the #Ham4Ham videos, and I experience it all as vicariously as I can. One of the themes of the show, and something Miranda has mentioned in interviews and in a commencement speech recently, is the way a story changes depending on who is telling it. There’s a song and a repeated line that “you have no control who lives, who dies, who tells your story.” There’s a number in the show that rewinds so you can see a scene from another character’s point of view. Aaron Burr, who narrates, knows that he ends up being seen as the villain in your history for shooting Hamilton, but in his own narrative he’s a guy who deserved better but was constantly being thwarted by an obnoxious upstart.

I think the idea of the story changing depending on whose narrative it becomes — and how we put ourselves in and out of the narrative — is one that has real resonance for those of us parenting kids with special needs. I know we all have stories in which educators and gatekeepers are the villains in our history, and I bet we’re pretty sure that when they’re the ones telling the story, we’re the bad guys. Worst school duel I ever had with educators was when all of us absolutely and passionately thought we had my kid’s best interests at heart. I survived, but I paid for it.

When we work with educators, we absolutely have to put ourselves in the narrative and fight for what we see as our kids’ potential and our kids’ needs and rights. But it never hurts to consider the view from the other side of the table. Maybe there really are black-hearted obstructionist incompetents out there, but most of the child study team members I’ve worked with have been, at worst, middle managers taking abuse from all sides and having to put in place mandated policies whether they like it or not. They keep all their plans close to their chests. They’re waiting to see which way the wind will blow. When it comes to perfect placements or behavior plans or competent inclusion, they're willing to wait for it in a way that we, as parents, cannot. We're non-stop, and every day we fight like we're running out of time.

I'd like to say that all our duels are with professionals who seem bent on keeping our kids from rising up — that all of us parents are scrappy revolutionaries who may not live to see our glory, but will gladly join the fight — but lately I've had a fair amount of rap battles in my head with other parents who have locked in to a belief or mind-set about their children's potential and needs and are not willing to admit that anybody else's experience can be different. Sometimes they're aggressive and sometimes they're like King George singing veiled threats like a love ballad, but either way, they're as much of a gatekeeper as any administrator. "Our kids can't do that" is a refrain I'd be pretty happy never to hear again.

In the long run, though, I think the hardest part of our special-needs parenting gig is not fighting with professionals or other parents — although those battles can be excruciating — but finding a way to turn our children's narrative over to them. There was a time when we could safely believe that, as much of a bummer as it might be for us, our kids would never be able to tell their own stories and would always have to have parents or siblings or a circle of support staff around to drive the plot. I'm not sure we have that questionable luxury anymore. Although inclusion may look as unlikely as a ragtag army in need of a shower defeating a global superpower, it is unwaveringly the way of the future, and our schools and communities are going to be plunging into it whether they know what they're doing or not. The protective environments that might have been available to our children in the past — self-contained classrooms, specialized schools, sheltered workshops, institutional living — are going to be fading away whether there's a workable alternative or not. The endings of our stories are being rewritten.

And are they really our stories after all? The issue of who tells your kid’s story is getting to be a more and more poignant one these days as self-advocates have raised their voices and insisted on their right to take over their narrative. They're tired of being told "Talk less, smile more," and their work is often hard for parents to read and accept. We are so very, very accustomed to being our children’s scribes and voices and narrators, it’s unthinkable that there could be a story we don’t know and tell. It’s hard sometimes to even imagine that our kids have an inner life or an inner voice. And it’s terrifying to think that the story we’ve been telling, sometimes by the seat of our pants, is the story they’ve adopted and become. So often I hear my son say something about himself that I realize is something I’ve said and he’s internalized and twisted a little, and the translation is not good.

If you need an illustration of how your child's version of the story may differ from yours, by the way, consider sensory processing issues. There are a lot of behaviors that look absolutely like deliberate misbehavior to a parent that to a child are survival measures. There are things that look like good parenting to a parent that to a kid look like deliberate torture. Adults have such freedom to compensate for their own sensory sensitivities — we just avoid that food or that itchy clothing or that cramped space and think nothing of it. Yet with kids, we feel like we have to force the issue and pick the battles and really, we don’t. Ask yourself why you’re telling your kid’s story the way you are. What would your child’s story be? Are you the villain in this history? It’s so easy to stop it.

Some of the issues we face as parents of kids with special needs are like that: identify a problem, strategize a solution, savor the victory. Others are more like the second act of Hamilton, in which we find that, indeed, "dying is easy, living is harder." People we thought were on our side have different opinions. Failure to take a break has disastrous consequences. We learn that we can't write or argue our way out of everything. Mistakes that we make damage people we love. We resort to endless blog-post think pieces straining for metaphors. But right at this point in time, at this intersection of inclusion and self-advocacy and the stories our kids are living, it feels like history has its eyes on us. What story do we want to tell?

Inclusion's Chris Traeger Problem

Chris Traeger, for those misguided souls who are not Parks and Recreation fans, is a guy so hyperactively positive that he once broke up with a woman in such an upbeat way that she had no idea she'd been dumped. When the character was first introduced, his job was to go to towns with financial problems and get their budgets in order, but since he always seemed to be bringing good news even when the news was bad, they had to pair him up with someone more willing to swing the hatchet (see the video for Chris and Ben's MO). Chris is the guy who always seems pleased to see you, who always remembers your name, who will be so upset when he causes you to resign in disgrace that you will have to comfort him.

Lately in my family's inclusion journey, I feel like we've been meeting a lot of Chris Traegers.

Like the lady at the soup kitchen where I wanted my son to volunteer, who smiled at us and nicely invited me into her office and shared how she herself had a child with special needs and talked to me for a good ten minutes before I realized that she was saying no, he couldn't volunteer there, they couldn't possibly accommodate him, and here are a bunch of other places you should try instead.

Or the supervisor who, rather than provide direction to a young person with a disability in the workplace — because that would be mean! — chose to silently judge and eventually withdraw the job and call up her mother to suggest that maybe supported employment somewhere with more supervision would be a better choice.

In both scenarios, guess who got to be Ben Wyatt, spreading the bad news that “no, you can't volunteer here” and “no, you don't have a job to go to”? To kids who couldn't imagine why that could be, because everyone was so nice to them? Thanks, Chris. Thanks a whole heck of a lot.

We may be getting to a point with inclusion where people know it's not cool to say no to it. Sadly, however, we have not yet gotten to a point where people will therefore say yes. They just keep saying no in a way that sounds like yes until you get the idea and go away. I suppose this is improvement? A little bit? Maybe? But it still sucks.

One of the things that hurts the most about this is that, like Anne Perkins still acting like a girlfriend when Chris had sweetly stopped being her boyfriend, I collaborate for just a little bit with this act of cheerful rejection. I apologize for bothering them. I tell them I understand their concerns. I feel some camaraderie. And then, all too late and too terribly, I realize I've been providing aid and comfort to the enemy.

I certainly don't want people to be openly mean to my kids, let's be clear. But at least, you know where those folks stand. Directly in your way, for sure. But maybe that's a little more merciful than the person who puts out the invisible wire to trip you and then calls 911 to help you out?

Our Parenting Roundabout Oscars 2016 Live-Tweet

It seemed to go on forever and I dozed off at least once and missed the tribute to dead people, but Catherine and I made it through another Oscars live-tweet. Relive it with us below.