Monday, March 25, 2019

Encouraging Words, Week 3

Every day this week, I'll be sharing a few encouraging words for parents of kids with special needs on SoundCloud and Riffr. I'll collect them here in this post for easier listening, and you can also find them on the bottom of my homepage at terrimauro.com.

Monday



Today's Love Note: You Are a Good Parent

Tuesday



Tuesday is book-excerpt day, and today's is from Raising Your Spirited Child by Mary Sheedy Kurcinka.

Wednesday



Wednesday is Worry Dump day. What's eating you?

Thursday



This week's website recommendation: Special Needs Book Review.

Friday



On Fridays, I talk about another place I talk: Parenting Roundabout.

Saturday



On Saturdays, I offer a quick tip for more efficient worrying. Mentioned: Trello.

Sunday



On Sundays, I offer a quick prayer for our week ahead.

Posted by Terri Mauro at 9:51 AM 0 comments

Monday, March 18, 2019

Encouraging Words, Week 2

Every day this week, I'll be sharing a few encouraging words for parents of kids with special needs on SoundCloud and Riffr. I'll collect them here in this post for easier listening, and you can also find them on the bottom of my homepage at terrimauro.com.

Monday



Today's Love Note: You Are an Expert

Tuesday



Today's book excerpt is from Transforming the Difficult Child. (I read from this version, but there's a new edition that looks cheaper and more available.)

Wednesday



Wednesday is Worry Dump day. Come tell me your troubles, kind of.

Thursday



Today's website pick: my very own Mothers with Attitude.

Friday



You made it to Friday! Take a break and listen to the Parenting Roundabout episodes I'm talking about here.

Saturday



A little parenting tip for your weekend. (Mentioned: The Child with Special Needs by Dr. Stanley Greenspan)

Sunday



Join me in a prayer for the week ahead.
Posted by Terri Mauro at 9:09 AM 0 comments

Tuesday, March 12, 2019

Encouraging Words, Week 1

As mentioned in the previous post, I'm going to be experimenting with recording little audio words of encouragement for parents of kids with special needs every morning. They'll be available on riffr.com, a new audio platform, but since they don't seem to be 100% ready for prime time yet, I'm also going to be sharing these on SoundCloud (from Tuesday of this week until further notice). Every week, I'll start and update a post with that week's audio.

Week of March 11, 2019

 Monday: "You Are Strong" from my Love Note for Special Parents. Listen on riffr.com.

Tuesday: Quote from The Challenging Child by Stanley I. Greenspan, M.D., one of my absolute go-to parenting books back in the day.



Wednesday: Wednesday is Worry Day.



Thursday: Website recommendation. This week's pick is The Inclusive Class.



Friday: This week on Parenting Roundabout



Saturday: Quick parenting tip



Sunday: Prayer for the coming week


Posted by Terri Mauro at 10:58 AM 0 comments

Monday, March 11, 2019

Words of Encouragement on Riffr

I'm trying out something new—leaving some words of encouragement every morning on a short-audio social-media platform called Riffr. You can check out my page at https://riffr.com/profiles/Terri-Mauro-430. Right now, here's what I'm planning to offer each day:
  • Monday: One of my Love Note for Special Parents (listen to the one I put up today).
  • Tuesday: A short excerpt from a book I've found valuable
  • Wednesday: What I'm worrying about this week, with space for you to share your worries
  • Thursday: A website or web article recommendation.
  • Friday: A quote from this week's Parenting Roundabout episodes.
  • Saturday: A quick parenting tip.
  • Sunday: A prayer, for those who value that, in whatever way you want to join in.
All this is heavily subject to change, but it's my initial road map. Listen and tell me what you think (and what you'd like to hear).
Posted by Terri Mauro at 9:38 AM 0 comments

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: greenchef.com/menus/glutenfree (Green Chef was recently acquired by Hello Fresh.)

Find It Online: www.mikeysmuffins.com

Find It Online: glutenberg.ca/en

Find It Online: bienasnacks.com

Find It Online: munkpack.com

Find It Online: perfectionsnacks.com

Find It Online: jovialfoods.com

Find It Online: glendaskitchen.co

Find It Online: www.naturalvert.com

Find It Online: www.pure-batch.com

Find It Online: www.miltonscraftbakers.com

Find It Online: farmwisefoods.com

Find It Online: celiaccutie.com/shop


Find It Online: enjoylifefoods.com

Find It Online: www.schaer.com/en-us/fw/snacks

Find It Online: www.biokplus.com/en_us

Find It Online: deliciousness.com


Find It Online: goodmanglutenfree.com

Find It Online: www.cookedperfect.com and organiclifestylefoods.com

Find It Online: www.kingarthurflour.com/essentials/gluten-free



Find It Online: www.aleias.com

Find It Online: www.geefree.com

Find It Online: zegofoods.com

Find It Online: www.makegoodfood.ca/en/home

Find It Online: salsaxochitl.com/chips-salsa/

Find It Online: www.honeystinger.com

Find It Online: www.undercoverchocolate.com/products/

Find It Online: q2healthysquares.com

Find It Online: www.nairns-oatcakes.com

Find It Online: 88acres.com

Posted by Terri Mauro at 11:38 PM 0 comments

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 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.
Posted by Terri Mauro at 7:41 PM 0 comments

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.
Posted by Terri Mauro at 7:37 AM 0 comments

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.

Posted by Terri Mauro at 2:33 AM 0 comments

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.


Posted by Terri Mauro at 2:28 AM 0 comments

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?
Posted by Terri Mauro at 9:03 AM 0 comments

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?
Posted by Terri Mauro at 10:33 PM 0 comments

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.
Posted by Terri Mauro at 9:39 AM 0 comments

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.
Posted by Terri Mauro at 9:24 AM 0 comments

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.”
Posted by Terri Mauro at 9:53 AM 1 comments

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.
Posted by Terri Mauro at 10:06 AM 1 comments

Sunday, December 10, 2017

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.
Posted by Terri Mauro at 10:00 AM 1 comments

Monday, March 06, 2017

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.
Posted by Terri Mauro at 2:01 PM 3 comments

Wednesday, January 18, 2017

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.
Posted by Terri Mauro at 12:42 PM 3 comments

Friday, October 07, 2016

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?
Posted by Terri Mauro at 9:27 AM 2 comments

Thursday, August 11, 2016

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.
Posted by Terri Mauro at 2:37 PM 0 comments