Monday, June 06, 2016

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.

Wednesday, June 01, 2016

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?

Wednesday, April 13, 2016

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?

Monday, February 29, 2016

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.

Friday, February 19, 2016

Why Kids With Food Allergies Are Ground Zero for Inclusion

When I rant about the public's lack of appreciation of kids with special needs, I often mention children with food allergies, even though I don't have a kid with food allergies myself, and I suspect that many parents who do would not necessarily place their child under the "special needs" umbrella. I'm not just trying to broaden the special-needs definition so that more people will be roped in to click on my stuff. The main reason I tend to include kids with food allergies into special-needs debates is because they seem to me to be kind of an accommodation baseline. If we as a society can't include these kids, how are we ever going to be able to include kids with much more significant and program-altering challenges?

I'm a fan of school inclusion, truly I am, but it's hard to deny that accommodating kids with special needs in a way that is actively inclusive and not passively warehousing requires a lot of hard work, training, money (at least in the short term), and changing of the status quo. Here are some of the things a school might have to do to fully include a child with, say, intellectual or developmental disabilities:
  • Train staff in co-teaching and ensure that regular and special-ed teachers are working effectively together.
  • Make all areas of a school building fully accessible.
  • Hire paraprofessionals who are trained to facilitate an inclusion program.
  • Develop differentiated instruction plans that work for each child's level, from those working behind grade level to those working beyond it
  • Reconfigure classrooms so they have a mix of students at all learning levels.
  • Hire teachers trained in adaptive physical education to include students in gym class.
  • Perform functional behavioral assessments of students who require behavioral support and implement behavior intervention plans that will be constantly adjusted as needed.
  • Work with therapists to incorporate their sessions into regular classroom time so students do not need to be pulled out.
Meanwhile, this is what a school might have to do to fully include a child with a life-threatening food allergy:
  • Refrain from deliberately making the child sick or dead.
Seems like that should be doable, right? It mostly affects lunch, snack time, and parties, all of which are incidental to the educational program. It might involve some strategizing, some awareness-raising, some learning how and why to use an Epipen, some spine on the part of the administration. But as school accommodations go, this seems relatively modest and limited in scope.

And yet, there is unbelievable resistance to even the small amount of effort it takes to include kids who are in all other ways indistinguishable from the general student body. You won't have to look very far on the Internet to find people who think that kids who might die if they come in contact with a PB&J should be homeschooled. But even among those who are not that exclusionary, you will find many moms and dads and teachers who, in this age of BULLYING IS BAD!, still think it's an acceptable idea to send kids out of the lunchroom or out of the party room or away at snack time, or to give everybody else a treat but not them, or to have them bring their own treat while others enjoy the pretty pretty cupcakes. Because, children, it's not okay to make someone feel different or unwanted, unless that someone might keep you from eating a peanut-butter cup at snack time, and then all bets are off.

Now, I know there are some parents of kids with special needs who have a legitimate beef with banning certain foods from school, because their children have issues of their own that limit what they are willing to eat. That is a rights vs. rights issue that is meaningful and difficult and requires addressing on a case-by-case basis. Please understand that I am not ranting at y'all here.

What I am ranting at is the idea that "the rights of the many vs. the rights of the few" applies even in situations where the rights on either side of the equation are of nowhere near the same magnitude. The question of, say, whose needs get met in the allocation of school funding is one where the many vs. the few has some significance. But honestly: The right to eat whatever you want for lunch and the right to a public education are not equal things. The right to have a particular treat at a class party and the right of a child to feel safe and welcome in her own classroom are not equal things. (And don't get me started on the right to eat one out of a million possible snacks while airborne and the right to travel freely. Stop pretending those are within a million air miles of each other.)

If we can't make these distinctions in an area in which they fairly straightforward, how will we ever make them in areas where they're hugely, heartbreakingly complicated? If parents dig in about putting something different in the lunchbox, how will they ever agree to change the entire structure of their children's education to accommodate a new vision of schooling? If administrators can't develop a policy to keep classroom parties of all things from becoming either lethal or exclusionary, how will they ever manage the personnel and parent protests over true and complicated and expensive and disruptive inclusion?

There seems to be a school of thought that food allergies are made up, and to change everything just to suit a particular kid's finickiness is recklessly indulgent. But what would you call saying to your child, "Your classmate probably won't really die. It's more important that you get to eat exactly what you want"? There's such an amazing opportunity here to practice what we preach about bullying, to mean it when we say it's not okay to make people feel different or unwanted, to introduce the idea of sacrificing a little of your own comfort for the good of another. Aren't those things we still want kids to learn? They're sure as heck things that will need to be in place for inclusion to work. As inclusion proponents, we'd like to believe that having all different types of learner in a classroom is good for everyone, that there are intangibles that typical kids gain from being with their differently abled peers. The apparent inability to find value in the fairly easy accommodation of food allergies does not fill me with confidence that anybody's going to be feelin' it with kids whose needs are more complex.

At this point, I am mercifully out of the school inclusion business. My kids made it through their years of FAPE mostly failed by inclusion. I had the opportunity to observe firsthand the many, many ways inclusion can be done in name only, by people who don't believe in it, to mollify the whining parents on all sides of the issue. Now, when I hear true believers talking like all we have to do is join hands and wish with all our might and shinyhappyinclusion will be the law of all the land, I can't help but be grinchy.

If people won't even change their ways to keep kids alive at school, why do we think they'll inconvenience themselves to give everybody a shot at something so abstract as an education?

Saturday, February 06, 2016

Questions You'll REALLY Want to Ask at the IEP Meeting

My Parenting Roundabout colleague Amanda Morin recently published a very helpful article on called "Questions to Ask Before and During an IEP Team Meeting," which will guide parents who are perhaps new to the IEP process or don't feel they've participated in it as fully as they should to be the best advocates they can be. Seriously, we all need more of that stuff, and Amanda and the folks produce a lot of great tools.

However, when you've got a bunch of IEPs under your belt, you realize that the proper questions, while useful, so very very often don't get straight answers—or get you that "this is what happens when parents learn to use the Internet" eye-roll. Schools may say they want informed, educated, proactive parents (just kidding, they don't say that), but what they really want is parents who believe what they say and shut up and sign the papers.

I always had lots of questions before and during an IEP team meeting. But I'm afraid they weren't of the productive sort. Just off the top of my head, here's 20 questions you'll really want to ask:

  1. Are you #$%@ing kidding me?
  2. Am I in the wrong meeting?
  3. What happened to the team members I met with last time?
  4. Why isn't the regular-ed teacher here?
  5. Why is the substitute teacher who doesn't actually know what an IEP is here?
  6. Why do you schedule a 90-minute meeting for a time when you only have 15 minutes to spare?
  7. If you know my child better than I do, how come you don't have the right name and gender in the IEP?
  8. How many trees did you kill to put all this stuff together?
  9. Do you ever think about how what you're saying sounds to someone who loves this child?
  10. How quickly would you smack someone who said that about your kid?
  11. Can I copy-edit this IEP?
  12. In which filing cabinet do you stash all the hopes and dreams you steal from parents?
  13. Is this seriously the best office the school could find for you?
  14. Can I give a report as the behavior consultant, since you're always asking me to solve school behavior problems?
  15. Would you say that if my child was sitting right here? 
  16. Why would you say that when my child is sitting right here?
  17. Why do I know more about special-education law than you do?
  18. Why do I know more about teaching than you do?
  19. Why did you ever, ever go into this line of work?
  20. Why are you offering me a pen? I can sign using the blood from all these stab wounds.

Got more? Add them in the comments, or tweet them to me @mamatude.

Friday, January 29, 2016

8 Ways to Make Parents of Children With Special Needs STOP Listening to You

Hey, educators! Doctors! Folks with an opinion on the Internet! You have so much you want to say to parents of kids with special needs -- about their parenting, about their expectations, about their insistence on putting their children in a position to annoy you -- and yet you're having a hard time getting through. What's the problem? Maybe you've taken one of the approaches here that puts our attention on hold.

1. Act like you know more about my child than I do.

Maybe you’ve got a fancy medical degree. Maybe you have decades of teaching experience. Maybe you have a diagnosis similar to my child’s. That’s groovy, and I sure want to get the benefit of your experience. But I have a PhD in my specific, unique, natured and nurtured child, in the context of our home and our family and our community and our world, and the moment you state that you know everything about my experience because of your experience — and more so, that your general experience is more important and meaningful than my specific experience — is the moment I stick cotton balls in my ears.

2. Treat third-hand information like it’s more meaningful than first-person experience.

Speaking of experience … you know that thing that your sister’s co-worker’s beautician told her about my child’s disability? That thing you’re pretty sure will solve all my problems, or show me how wrong I’ve been in what I’ve done thus far? Yeah, I don’t want to hear it. And I won’t hear it, because I will be turning up the volume on my imaginary iPod and listening to my favorite songs. La la la, I can’t hear you!

3. Use the words, “You’ve got to understand.”

You’ve got to understand, I understand more than you could possibly understand, and whether you’re using that introductory phrase to explain something to me that I already understand all too well, or you’re using it to ease into something you think I’ve somehow failed to understand despite it’s obviousness to you, please understand that I will be understanding nothing because I am setting my internal speakers to mute.

4. Give me boilerplate gobbledygook.

I might have appreciated that as superior wisdom when I was new to this parenting gig and everything was unfamiliar and scary. I might not have recognized that kind of "placate the mom" talk. You hear it often enough, though, and it begins to stick out, and seem insincere, and sometimes wrong, and certainly not engaged and personal. Whadya got for me that I couldn't get off reputable websites and out of reputable books? Whadya got that is related to the child you see right in front of you at this moment, who is anything but textbook?

5. Feel sorry for me.

Okay, if I'm asking for pity, as I may now and then, feel free to pat my back and make sympathetic noises. But if I'm not, DON'T. Insisting that I must feel pathetic and pitiable even when I'm quite clear that that's not my feeling and that's not my life means you are not listening to me, and you therefore are unlikely to be saying anything I want or need to hear. See #8.

6. Assume that if you’ve met one parent of a child with special needs, you’ve met them all.

Because one mother believes one thing does not mean I believe the same. Because one mother makes certain mistakes does not mean I make the same ones. Because one mother does something you don't approve of doesn't mean I've done that or will do that or want to do that, or necessarily haven't or won't or don't. I'm always interested in information that can help in my specific situation, with my specific child, in my specific school or community or church or one very much like it. But talk to me like I'm someone else, and I'm tuning out.

7. Know less than me about something you’re supposed to be an expert in.

Educators, if you act like you've never heard of, say, differentiated instruction, that's a problem. Doctor, if you're giving me information I know from reputable sources is outdated thinking, why am I paying you? Just because I want us to work as a collaborative team on behalf of my child and value my opinion and experience doesn't mean I don't want you to pull your expert weight. If I know more than you, why do I need to listen to you again?

8. Stop listening to me.

Talk at me, talk down to me, talk over my head, talk behind my back, talk when I'm talking, and generally display a lack of belief that I could have a single thing to say that you want to hear, and you'll prove to me that you don't have a single thing to say that I want to hear. Because what you're telling me has to apply to what I'm living and seeing and knowing and feeling, the circumstances of my specific self and family and child and home, and how're you going to know that? Telepathy?