Sunday, October 21, 2018

My Weekend at the Gluten-Free Allergy-Friendly Expo, in Tweets

I attended the GFAF Expo in Secaucus, NJ, a couple of weekends ago and tweeted about all the yummy things I sampled. You can follow along here, and I've added the websites so you can visit the companies that way instead of stopping by their booths.

Find It Online: (Green Chef was recently acquired by Hello Fresh.)

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Monday, September 24, 2018

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 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.

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[​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.

Tuesday, September 11, 2018

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.

Tuesday, September 04, 2018

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.

Tuesday, August 28, 2018

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.

Monday, August 20, 2018

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?

Monday, August 13, 2018

Worries and Fears Forever, Apparently

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?

Monday, August 06, 2018

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.

Monday, May 14, 2018

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.

Monday, March 26, 2018

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.”

Monday, March 19, 2018

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.