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

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

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

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

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

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

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

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

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

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

Learning to Say, “That Sucks”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who Tells Your Story

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

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

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

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

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

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

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

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

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

Inclusion's Chris Traeger Problem

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

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

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

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

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

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

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

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

Our Parenting Roundabout Oscars 2016 Live-Tweet

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

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?

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.

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?

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?:

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.

For When You Need a Good Cry

Had fun putting this Songs That Make Us Cry (and Songs to Cry To) playlist on YouTube in conjunction with our Parenting Roundabout podcast episode on things that make us cry. I find that country story songs are the ones that really jerk my tears — "Christmas Shoes," of course, which is the musical equivalent of a crowbar to the tear ducts, but "Don't Take the Girl" and "He Didn't Have to Be" both legitimately made me teary. I was kind of amused to see how a couple of sad songs from the old days, "Sylvia's Mother" and "Operator," are pretty obsolete because no one goes to an operator for information anymore or gets nagged by one to put in forty cents more for the next three minutes. Ah, memories.

Anyway, enjoy a listen and a weep — there are both happy and sad cry songs — and let me know in the comments what songs should be added on.

The Parenting Roundabout Oscars Live-Tweet

Or, how we managed to stay awake through five hours of gowns and golden statues. Listen to the Parenting Roundabout Podcast at parentingroundabout.com.

The Mauro 10-Point Comfort Scale for Oscar Dresses

Over my years as a parent—and maybe particularly as the parent of kids with special needs, one of whom I regularly had to get down on the floor with as he was growing up, even at parties, even at church—I've come to value comfort and practicality in outfits over fanciness and sleekness and cleavage and slits and highness of heel. And while I appreciate that your average starlet can't exactly wear sweats to the Oscars (I'd be among those dinging her if she did), I still look at some of those super-fancy dresses and wince at how uncomfortable and potentially disastrous they will be over the hours that these women will be sitting there waiting to win, lose, or present.

In the interest, then, of rewarding those who do manage to be both comfortable and stunning, and to penalize those who have sacrificed their own comfort for a bit of red-carpet flash, I am submitting my official version of the Mauro 10-Point Comfort Scale, on which I will be rating dresses at the Oscar shebang. Join me, won't you? And add your own suggestions and specifications in the comments.

The Mauro 10-Point Comfort Scale

by Terri Mauro

Award one point for each yes answer to these questions:

1. Cleavage: Can she sneeze or slouch without risking a wardrobe malfunction?
2. Slit: Can she cross her legs without flashing a worldwide audience?
3. Hemline: Can she cross her legs at all?
4. Tightness: Can she sit for three hours without passing out or sustaining serious bruising to the midsection?
5. Frills: Will she have direct back-and-ass seat contact without having to sit on a peplum, huge bow, or scratchy petticoat?
6. Simplicity: Is it conceivable that she could use the restroom without having assistants along to undress and dress her?
7. Bareness: Is her back covered enough to avoid pattern rash from a fabric-covered auditorium seat, or sweat from a leather- or plastic-covered one?
8. Shoes: Can she walk to the stage to accept an award without risking a heel caught in a skirt or a twisted ankle?
9. Train: Can she move freely without worrying about somebody constantly straightening out the back of her skirt (or what’s getting caught up in it)?
10. Accessories: Do the earrings and hairstyle look like they could be worn for hours without giving her a headache?

Then subtract one point for each yes answer to these questions:

1. Does this look like a particularly nice mother-of-the-bride dress?
2. If that color looked that way on you, would your mother have told you not to wear it?
3. Does it look like something she just had hanging out in her closet? Or you might have in yours?
4. Is there a regrettable accessory? (See especially: belt)
5. Is it just, somehow, not appropriate to the occasion? (Can range from a too-short skirt to, say, a swan costume.)

Loving 'Parks and Rec'

This post is a bit off the parenting topic, except to say that any show that can hold my attention amongst all my personal chaos of family and freelancing has something pretty special going for it, and Parks and Recreation has been that sort of recreation for me, one of the few Mom Things that everybody knows to stay out of the way of. I've been thinking of putting together a list of my ten favorite episodes for the upcoming ending of the show (sob!), but since there are too many I thought I'd narrow it down by making it a Valentine's Day-inspired list of romance-related episodes. For me, that mostly means Leslie and Ben, because they're adorable and their relationship makes me happy. A few other couples, platonic and otherwise, do make it in, though. My unofficial list:

1. "Flu Season" (Season 3, Episode 3). Because this was my first episode of Parks and Rec, and the one that made me fall in love with it, and the one where Ben fell for Leslie. Amazon | Hulu
2. "Indianapolis" (Season 3, Episode 6). Because the idea that it is possible for a nice and positive person to break up with you in a way that is so nice and positive that you don't realize you're broken up with is both funny and sweet, and Leslie's litany of the times she's been broken up with is just funny. ("Skywriting isn't always positive.") Amazon | Hulu
3. "Fancy Party" (Season 3, Episode 9). Because what other sitcom would allow such a completely impromptu, un-thought-out, unnecessary wedding between two main characters, where no one was pregnant or drunk or the victim of a wacky misunderstanding, and actually go through with it? The fact that Andy and April remained crazy about each other and crazy in general for the rest of the series is awesomesauce. Amazon | Hulu
4. "I’m Leslie Knope" (Season 4, Episode 1). Because even when they're breaking up, Leslie and Ben are adorable. Love that the box Ben uses when he reveals he knows that they have to break up (to keep from torpedo-ing her City Council bid, since he's technically her boss and their dating is against the rules) ends up having a recurring role in their romance. Amazon | Hulu
5. "End of the World" (Season 4, Episode 6). Because of Leslie's scene with Ron, where she confesses that if the world was really ending, she'd want to be with Ben, and Ron points out that unfortunately, it's really not; and because of the very sweet friendship moments underlying all the bluster and buffoonery of Tom and Jean-Ralphio's End of the World (and the money) party. Amazon | Hulu
6. "The Treaty" (Season 4, Episode 7). Because Leslie and Ben's attempt to just be friends runs so hilariously amok into global war, and oh, c'mon, you crazy kids, just get back together. And because it's the middle of a perfect trio of episodes making just that happen. Amazon | Hulu
7. "Smallest Park" (Season 4, Episode 8). Because after it's clear that not only can't they be exes and friends, they can't even be co-workers, Leslie finally respectfully asks if Ben would be willing to say "screw it," resume their romance, and accept the consequences. (Spoiler: He would.) Amazon | Hulu
8. "The Trial of Leslie Knope" (Season 4, Episode 9). Because of the ending, with the nerdiest but most perfect declarations of love that completely fit these two. Amazon | Hulu
9. "Halloween Surprise" (Season 5, Episode 5). Because when you get a surprise marriage proposal, it's not at all unreasonable to request a few moments because you "need to remember every little thing about how perfect my life is right now." Amazon | Hulu
10. "Leslie and Ben" (Season 5, Episode 14). Because although this was a much more traditional wedding episode than "Fancy Party," with all sorts of obstacles and hijinks, the ceremony was beautiful and sweet and perfect. Parks and Rec, I love you and I like you. Amazon | Hulu

You can hear me discuss these episodes and more Valentine's themed entertainment on this week's Parenting Roundabout: Round 2 podcast. [UPDATE 2/14/16: And for more Parks and Rec goodness, join Catherine and I for our current Round 2 Parks and Recreation marathon.]

How 'Cougar Town' Restored My Faith in Comedy

As the parent of a young adult with Fetal Alcohol Syndrome, I'll admit, I can be pretty humorless about the topic of alcohol use during pregnancy. I have no patience for anyone who wants to split hairs. This is a 100 percent preventable birth defect. We know exactly how to avoid it. News reports about how maybe this much is okay, maybe that much is okay, just make steam come out of my ears. You might be able to smash your baby's head against the wall a few times before causing permanent brain damage too, but why in the world would you?

Still, our society and our entertainment is pretty heavily invested in the idea that abstaining from drink is a fate worse than death. That's certainly the worldview of Cougar Town, a show that revolves around a group of friends in a Florida cul-de-sac whose most common communal pastime is polishing off bottles of wine. Jokes have revolved around the size of the container Courteney Cox's character uses as a wineglass. Funny jokes. I love the show, despite the fact that I gave up alcohol not too long after adopting my son when it became tough to relax and enjoy a substance that broke my kid's brain. (It's not like I was ever much of a drinker anyway. The line between feeling good and feeling sick was always pretty thin. No way could I keep up with the cul-de-sac crew.)

Cougar Town is one of those rare good-natured comedies — like Parks and Recreation — that just leaves me feeling happy, like I've spent some good time with fun friends. But I'll admit, I was worried when at the end of last season, one of the wine-swilling characters turned out to be pregnant. I wasn't looking for the show to turn into a crusade against drinking during pregnancy or anything; it's not that kind of show, and shouldn't be. But these are characters one might reasonably expect to be among the hair-splitters on the topic of fetal alcohol exposure. If the season resumed with Laurie explaining how she had determined how many glasses of wine she could safely swig, or grandma-to-be Jules laughing about how she drank when she was pregnant and her son turned out OK, I'd never be able to watch the show again, or with the same pleasure. And I would miss it.

So huge thanks and kudos to the Cougar Town writers for, in the usual amiable way of the show, just ambling right around the issue. The season picked up with Laurie late in pregnancy and lamenting her inability to drink. Her friends tried abstaining with her and were unable to, but there was no suggestion that she should join in (or preaching that she shouldn't). In the second episode, she had the baby, keeping this from being a season-long concern. Maybe I should worry about whether she's going to drink while breast-feeding, but you know what? I'm going to let that slide.

I'm just going to be happy that, at a time when those with serious concerns about special needs are regularly admonished not to hold comedy to any standards at all, Cougar Town has shown that you can avoid issue-baiting and still be funny. Turns out it's not that hard to avoid pissing people off.

[I also talked about this on the Parenting Roundabout Podcast: Round 2 this week, along with Snowpocalypse, the Super Bowl, Oscar scheduling, and books I may or may not have read. Listen in, and subscribe on iTunes for weekly episodes on parenting and entertainment.]

Brain Damage Does Not Make for Fun Link Bait. No. It Does Not.

Well, I made myself a New Year's Resolution this year that I wouldn't let myself get all furious and grumbly and foot-stomping about stuff I read on the Internet, and I was doing pretty well until this afternoon, when I came upon this on my Google+ feed:

And that's when the top of my head blew off. Steam out of the ears. It's hard to imagine a post so thoroughly designed to turn my outrage knob to 11. I shared it and added this comment:

OMG, are they kidding me? Is it April Fool's Day already? Drink alcohol during pregnancy to guarantee yourself a well-behaved kid? I think those of us raising kiddos with fetal alcohol spectrum disorder would beg to differ. This is an incredibly irresponsible way to report on a "study" that basically involved asking moms if their kids are well-behaved. Based on that, you feel comfortable saying "Attention Pregnant Women. Want well behaved kids? Maybe you should pick up that bottle of wine," CBS Atlanta? Shame on you!

and took a bunch of deep breaths, but ... GAH! Bad enough the study was done, bad enough it's reported on misleadingly, bad enough the headline completely misrepresents, but whoever is responsible for the message that accompanied it on Google+ needs some serious education on FASD and what it means and why it's really really really not OK to turn this into a flip little "Hey moms!" link-bait come-on.

Games for My Friend, the King of New Jersey

These links to games on the Internet are listed here for V.M., but anyone else who wants to follow them to somewhere fun is welcome to.

• Dance Mat Typing
• JacksonPollock.org (move mouse to splash paint, click to change color, refresh page for new)
• Ken's Virtual DrumKit (move mouse around the drums to make them play)
• PBSKids
• Math Cats
• SeussVille
• Thisissand (click or double-click to drop sand, click lines in top left corner for instructions)
• Tonematrix (click squares to make a melody, refresh page to try again)

The Truth, and Nothing But the ... Wait, What?: I'm having my head spun around this week by a couple of kids with fetal alcohol syndrome and the sort of fluid relationship they have with the truth. One I've caught in a relatively harmless lie, but it puts into question whether any of the stories she's told are real. (Many I would be happy to find out are not.) The other changes stories so quickly when challenged that it's impossible to know how to follow up -- I've sent him with instructions before to make something right only to find out there was never anything wrong. A fun thing about the "crazy lying" kids with FASD do is that, while their peers might lie to get themselves out of trouble for which they're responsible, these kids lie in a way that gets them into trouble they had nothing to do with, so it's impossible to know the right reaction. If I could be sure there was one cold hard truth I could get to with questioning, that would be great, but that particular ice cube has melted, and the kid holding it in his hand doesn't even remember what shape it used to have.