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 Understood.org 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 Understood.org 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?

Tuesday, January 12, 2016

When Honoring Children With Special Needs, Actions Speak Louder Than Facebook Posts

[I originally wrote this in February 2014 for my About.com site, but since it's no longer available there and I still feel this way every time I see this message creep onto my Facebook feed, I thought I'd share it here in case you do too.]

Lately I've been seeing a graphic on Facebook, one of those "Let's see if you're a good enough person to share this" jobs, that's about children with special needs. Maybe you've seen it too. I refuse to re-post this sort of thing on Facebook because of a deep-seated resistance to chain letters and their ilk, but I'll share the text here to defend the quality of my heart:
KIDS WITH SPECIAL NEEDS ARE NOT WEIRD OR ODD. THEY ONLY WANT WHAT EVERYONE ELSE WANTS...TO BE ACCEPTED. CAN I MAKE A REQUEST? IS ANYONE WILLING TO POST THIS IN HONOR OF ALL CHILDREN WHO WERE MADE IN A UNIQUE WAY? LET'S SEE WHO HAS A STRONG HEART.
Now, the friends whose walls I've seen this on are kind people, are strong-hearted, are parents of kids with special needs themselves in some cases, and mean nothing but good by posting this. I get that. Certainly any show of goodwill is to be appreciated in an online world where commenters are more likely to wish our kids dead than wish them well.

And yet ... boy, you know, it's not enough, is it? I can't help but feel that it lets people off the hook in a way that I can't accept.

You want to honor all children with special needs? You want to show acceptance? Don't post those words on Facebook. Post them on your heart. Post them on your soul. Post them on your conscience. Post them on your reaction to a kid behaving inappropriately in a public place, or to a request to keep peanuts out of a public place for the safety of a child, or to an attempt at inclusion that maybe changes the way you're comfortable doing things.

Post those words on your language when you're tempted to use the R-word. Post them from your car when you bypass a handicapped space. Post them on your children when you refuse to be a bully on their behalf. Post them every time you're called upon to do something much more challenging and inconvenient and ambiguous to honor a child with special needs than just hitting a share button.

That's what makes your heart strong.

Next time that meme makes its way through your social media accounts, how about sharing this one instead?:




Wednesday, September 02, 2015

Munchausen Syndrome by Accident

Do we need a name for that thing where you take your child to the doctor but your child can't or won't talk and so you give the doctor all your observations and interpretations, and diagnoses and treatments get made based on that? Well, maybe not just on that, exactly; I'd like to believe that doctors make their own observations and can see things for themselves that we as laypeople might not necessarily know about. But it feels like we are describing our children and others are making decisions based solely on those descriptions.

It's empowering, sure, to be believed and accepted as an expert on your child. But it's also scary as hell.

Because unlike someone who is creating medical drama for a child out of some psychological need for attention, the parents I'm talking about -- well, me, specifically -- don't want to create drama. We'd like our kids to be healthy. We just want to take care of them, like any other parent. But when you have a kid who, say, doesn't feel pain like most kids, or doesn't have the kind of abstract understanding that comes in handy when articulating physical and mental and emotional health, or has language skills below what medical professionals expect and demand (leading those docs to turn their confused gazes onto you for clarification) ... what do you do?

You give your best guess, is what you do. You've been thinking about this stuff tons before that appointment. Maybe you try to coach your kid to say that thing you talked about in the car, and then maybe you just say it yourself. You hope you're right. You pray you're right. You wish you had a magic wand that, just for five minutes, would allow you to have a serious and detail-filled debriefing with your child so you'd know you're right.

And sometimes you decide to let it go, it's all in your head, you're being overprotective ... and you're wrong, wrong, wrong. Like the time I interpreted my son's vague complaints of a tummy-ache when he got home from school each day as more related to academic stress and girl trouble than any physical ailment, and it turned out to be an ulcer that would ultimately rupture and require emergency surgery. I beat myself up pretty good about missing those signs -- yet if I had brought him into the doctor earlier and claimed he was having stomach problems, and he'd been his usual inexpressive self, not answering questions or maybe denying that pain he'd already forgotten about, would the doctor have ordered tests or medication or surgery? Should a doctor act in that situation? Would even I be sure that I wasn't making all this up?

I recently had the uncomfortable experience of talking to professionals about a young person's deteriorating mental and emotional health, and the feeling that I was gaslighting the poor kid was overwhelming, even as I knew that things weren't right and crisis mode was appropriate and the afflicted one was incapable of coherent self-expression. I know so well from parenting kids with developmental differences how enormously open to interpretation behavior is, and how many different things it can mean, and how dangerous it is to assume that your interpretation is the right one. Yet my interpretation was being used to determine things like medication and hospitalization. How can that be? How can it be any other way?

It's a dilemma, and one that will continue until they invent one of those Star Trek thingies where you run a device over a person and it automatically tells you everything that's wrong. Meanwhile, the pressure will continue to be on us parents to make our guesses as educated as possible and make sure that it's not all, or in any small way, about us. Good luck with that.