A blessing in disguise

Okay, I'm back (in case anyone missed me). Boy, it has been a busy-beyond-belief six months. So much to say (get over yourself, dude), so little time to say it. So, let's dive right in.

As of the last post, I was less than happy, and more than a little worried and stressed-out about where my boy would go for kindergarten. Because public schools in my town are largely selected by lottery, there was no guarantee that we'd get into the seemingly excellent neighborhood school. As luck (or fate) would have it, however, we won the lottery. I can't say it was just luck-- we made my boy's IEP was written to emphasize the importance of the local school and to preview the shit-storm we would cause if assigned to a school that was not up to snuff. (an IEP, or Individual Education Plan, is the document negotiated with the school district that specifies the services needed for any child entitled to "special education").

So, it is now more than two months into the school year and I could hardly be more pleased. Let's start with the IEP meeting itself, which was over the Summer. I have read many horror stories by parents who had to fight tooth and nail for even the most basic services. Especially in the midst of a budget crisis, school districts often cut corners and limit services as much as possible. The IEP that came out of this meeting would be the blueprint for a year, and can be hard to change. So, we went in loaded for bear. I decided I would fight like hell for everything my boy might need. It really isn't a lot, but it is a constant throughout the day.

His needs are purely physical. For example, he needs someone to transfer him from his powerchair to the rug on the floor, or his low cube chair, for morning circle. He needs help to pick up markers or pencils, to reach things that he can't access, and to open his lunch box. I also wanted to have a "para-professional," as they are called, available for safety -- to make sure he doesn't fall over when sitting on the floor -- and to make necessary adaptations -- with writing utensils or with objects that have to be manipulated as part of a lesson, for example. It is little things, but lots of little things throughout the day. So I was hell-bent on getting him "100% designated adult support"--in other words, making sure that a paraprofessional was always available as needed for the entire school day. This, I understood from my research, was the brass ring that is entirely justified for kids with SMA, but is as elusive as a rent-controlled apartment on the Upper East Side in Manhattan.

So, I headed to the IEP with extensive notes and prepared for a tussle. I was not, however, prepared for what actually happened. The principal announced that my boy would get 100% designated adult support before we even asked for it. Not only that, he proclaimed that the school district would renovate the bathroom next to my boy's classroom to add an accessible stall. Otherwise, he explained, they would no longer be able to count on all the good press they get from him (he's a superstar principal who has been written up not only in the local paper, but also major national newspapers).

Wow. It is hard to express how wonderful this was. Not just because we got the support needed to provide the educational setting my boy needs (and that he and every other child deserves), but also because it showed the he was welcome at this school. The tone set by the principal was the exact opposite of the message we got from the head of school at the private school we pay an insane amount of money for my girl to attend.

Okay, so far so good, I thought. But, would there be follow-through? Wasn't this too good to be true? Apparently not. We just had our first parent-teacher conference and the only real issue with the support my boy gets is that one of the team of paraprofessionals does a bit too much for him--intervening when he really can do something for himself, even if a bit difficult. I must say, that's a good problem to have. Still important to address because he needs to be pushed to do all he can and not use his physical limitations as an excuse for the easy way out, but nonetheless a far better problem to have than neglect, lack of support, and miserly and begrudging "services."

So, the private school's decision was a blessing in disguise. They were not prepared to do it right, so better that they didn't try. I still don't like the way the message was delivered and was offended by the attitude and ignorance demonstrated by the head of school, but it worked out just as it needed to.

It’s the hypocrisy that bothers me

So I live in a city where few things are more stressful or difficult than getting your kids into school. Due to a long history of segregation, public school assignments are not based on neighborhood, but on some black-box formula that ends up using parental education as a proxy. So, my daughter got assigned to a failing school located across from an open-air drug market. It’s a system with good, laudable motivations that ends up not solving the problem at all and, in fact, exacerbating racial and social divisions. When my daughter was applying for Kindergarten (first, how screwed up is it that you have to “apply” for Kindergarten?), she did not get into the excellent public school that is literally a block from our house. But, she did get into one of the most coveted private schools in the city—a school we loved for its inclusive philosophy and professed commitment to diversity and difference. I really wanted to send her to that school because not just because it would be great for her, but also because I thought it would be a welcoming place for our family and for my boy when it came time for him to go to Kindergarten.

The school’s website lauds its dedication to a diverse community and a “diverse learning environment,” and speaks of commitment to “an awareness that we each have distinct power” and emphasizes that “community members represent a diversity that encompasses differences in the human experience.” Pretty cool, huh? I thought how wonderful not just for my able-bodied daughter, but also for my boy. At the school tour, the P.E. teacher even talked about tailoring physical education to each student’s abilities and recognizing the difference in physical attributes among the community of students. Wow, how cool. How inspiring. How encouraging.

What crap.

My boy is going to Kindergarten in the Fall, so we opened a dialog with my girl’s school about it. We were very open about our concerns, recognized the investment the school would have to make to commit to true inclusion, and I assumed my boy would be welcomed. I assumed that this elite private school with the great philosophy would realize what my boy’s preschool had realized—that not-insignificant, but not massive adaptations are all that he needs and that he adds so much to any community that welcomes him. That the “burden” of helping him open his lunchbox, transferring him from powerchair to floor, and even assisting with toileting is minimal in comparison to what he brings to the community. Not just because of the benefit of a community replete with diversity, but also because he is so sweet, so smart, and so damn witty/funny. The able-bodied students are enriched, the teachers are enriched, the whole god-damned community is bettered. And, it’s easy. My boy has his physical challenges, but he is not burdened with behavioral or cognitive challenges. He makes it easy for a school to achieve its “diversity” commitment with just a few simple adaptations—rearrange the tables to there’s a bit more space to accommodate his powerchair, commit to some physical assistance, take some extra care that he doesn’t tumble over while sitting on a chair or the floor.

So, when my wife and I were summoned to a meeting with the head of school and director of admissions, I imagined it was so they could reassure us that they will do what is needed to meaningfully include him in the class and that they couldn’t wait for him to join the community. I actually expected that they were going to sell us on why we could trust them with our boy. How naïve was I? I imagine it’s obvious by now that they did not assure us of anything. Instead, they told us that the school is “just not right” for my boy.

Obviously, that was a disappointment. But, that’s not what really sticks in my craw. Certainly, I’m not happy that they were so limited in their thinking that they could not see the benefits the school would get by welcoming my boy. But what really bothers me is the way they delivered the message. In my view, they were dishonest and hypocritical. They could have said that accepting and including my boy was a commitment they just are not prepared to undertake. They could have explained that they worried about limited resources they have for “special needs” students, and that they just are not set up to address those needs and don’t want to make the effort to do so. That would have been honest. Disappointing, but honest.

Instead, they fell into bureaucrat and apologist mode. Telling us how “special” our boy is, how wonderful and smart, but he just “would not get what he needs” in their program. Theirs is a very “hands on” learning environment, they said (rather condescendingly). Okay, but (1) my boy does have hands, and (2) its Kindergarten for god’s sake…”hands on learning” is sort of the definition of such early education, right? No, they explained, they just worried that my boy couldn’t participate in everything, so (again) he wouldn’t get what he needs. Well, (1) his life is and will always be a life of not being able to participate in everything an able-bodied person can do…at least not in the traditional, typical way…but that’s okay. He doesn’t need to run to understand what running is. And, (2), I will decide what my boy “needs” and what is right for him, thank you very much…at least until he is old enough to make those decisions himself. How dare you tell me what is and is not “right” for him. And, if you “compliment” him one more time while delivering this message that he is unwelcome, I’ll scream.

I didn’t scream. But, I did say that their rejection, no matter how “considered,” was really just bigotry. And, I made the point that throughout history much has been done to oppress the powerless under the guise of acting “for their own good.”

I don’t think I’ll be invited to join the board of directors of the school anytime soon…

So, where does this leave my boy? Luckily, this rant has a happy ending. He got into the local public elementary school. It is absolutely the best result, and even if he had gotten accepted at the private school, we would have sent him to the public school. The public school principal is a rockstar, who has already been more welcoming, friendly, and interested in our family than the head of a school to which we pay an obscene amount of money in tuition every year. The public school is so close to our house that my boy can roll on up the street to get there every morning—providing a significant level of independence (not to mention ease). And, the public school has a legal duty to do all the things that any school should want to do on its own to provide a meaningfully inclusive learning environment.

In the end, what still bothers me is not the result, but the disheartening dishonesty displayed by the private school. I expected much more. Their fucking loss.

Make a Wish

I never thought I'd ever know a kid who qualified for one of those wishes from Make a Wish Foundation. Now, I not only know a bunch of kids who do, I happen to be the father of one. Boy, that was a real kick-in-the-teeth when I realized that. My little boy is considered to have such a "life-threatening" condition that good-hearted people would smile a little smile to see him meet a sports hero or ride in a racecar, or do whatever thing he wishes. What is behind those smiles? Certainly compassion, good wishes, caring. But also, I'm sure, a healthy dose of "thank god it's not me or my son." I get it, and I'm sure I used to feel that way too. But, I don't want to delve into that issue now.

Instead, I'm thinking of Make a Wish because of a Moth story I heard. If you haven't discovered The Moth, check it out. It is a storytelling series -- true stories told live on stage without notes. The podcasts are free on iTunes. It's amazing. The stories range from laugh-your-ass-off to choke-back-tears...and everything in between.

Anyway, the other week, I was listening to a Moth story told by the guy who played "Steve" in the kids t.v. show Blue's Clues. His real name is actually Steve. It was a pretty funny story. One aside to the main narrative was that Steve occassionally does work with Make a Wish. A kid with, say, brain cancer will say his wish is to meet Steve from Blue's Clues and Steve will fly to Dallas or Des Moines or wherever to make the kid's wish come true. The thing Steve said he notices, though, is that even though the kids are the ones who chose their wishes, they really chose it for their parents...that time and time again when these kids who are facing disease or disability or whatever have a chance to do something purely self-indulgent, the thing they really want to do is make their parents happy, to ease their worry, to make them smile. Wow.

I guess that doesn't surprise me. Kids are smart and understand a whole lot more than we give them credit.

Does my boy know that my wife and I stay up at night worrying about him when he has a cold? Does he know how much worry and concern we put into deciding where to send him to Kindergarten? Can he tell that there are moments that we just want to scream and jump out of our skin at the unfairness of his physical limitations? God, I hope not. We try to keep that hidden. But, he's pretty damn smart.

I don't think of him as a "wish" kid. But, if he has a wish, I hope that it is his and his alone.

Most people

Okay, so there are the people like those chronicled in my last post, but most people really are lovely.

Like the physical therapist we ran into a few days ago, who was so interested in my boy's Permobil Koala powerchair. My defenses were up, but it turned out her interest was for the children who are clients of hers and could use a chair as cool, kid-friendly, and powerful as my boy's "red racer." She was just lovely.

Like the balloon man who made both my kids great balloon animals and asked for nothing. He didn't treat my boy as a poor kid who needed a lift, rather the vibe I got was that he just thought both my kids were cute and could use a balloon. Just lovely.

Like the airport baggage handler who so appreciated the laminated direction-sheet I had hung on my boy's Koala in a purely self-serving attempt to prevent damage. He said he wished everyone did that and stuck around to meet my boy. Just lovely.

Like the train conductor who made sure my boy and his Koala got good seats on an old historic (1920's) tourist train, and checked in to make sure we didn't miss a thing. Just lovely.

Like the young couple traveling cross-country who offered to take a picture of the entire family, and even help us traverse some challenging terrain. Just lovely.

Like all the people we encounter everyday who simply greet my boy just like any other kid...or look right past us as they would any other family traveling down the same sidewalk.

And, like all you wonderful readers who have sent me such lovely, thoughtful (and thought-provoking) comments about my last post.

"Thank you for taking care of him"

Can you believe it? In the middle of a restaurant parking lot, some bozo calls me over after my boy has driven up into the van and ends up spouting the sentence in the title of this post. Followed, of course, with a "God bless you." (and I didn't even sneeze!)

As Paul Harvey would say, here's the rest of the story...

The family and I had just finished a very good lunch on a beautiful day and were just generally having a great time. Everyone loads into the minivan (my boy does so, of course, by driving up the ramp that has been deployed from the side of the van). I go into the van to transfer him from his powerchair to his car seat, then attach the tie-downs to the Koala and close the side door/ramp. As I walk around to the driver's side, I notice someone in a white pickup truck motioning in a way that a police report would decribe as "furtively." I thought it was probably some tourist who needed directions. So, I walk over and here is the conversation with the driver, whose 12-or-so-year-old son was sitting next to him silently. My inner, unspoken thoughts are in [brackets]:

Driver: "I don't mean to get real personal, but [oh boy, here it goes, what now?] what's wrong with your son?"

Me: "Nothing [and **** you, you ****]"

Driver: "Can he walk? [really, you just saw him drive a powerchair out of a restaurant and you're asking this stupid question, d-***?]"

Me: "No, but that doesn't mean there's anything wrong with him, there's not..."

Driver (interrupting): "Oh, I wasn't saying that. [yes you were, you creep, and why the hell did I come over here in the first place?]."

Me: "He's a perfectly happy, smart, mischevious, wonderful kid who happens to use a wheelchair to get around, there's nothing 'wrong.'"

Driver: "Yeah, he does really look happy. [unlike your sullen kid sitting next to you thinking "please shut up, Dad"]. I just want to say thank you for taking care of him. [and **** you for being such an ignorant bigot]"

Me: (rather flabergasted as this is a comment I've not heard before): "What? What do you mean? What in the world else would I do? [you sack of ****]. My son, my family live a full, happy, wonderful life..."

Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."

Me: [And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your kid, and he certainly has a better role model for a father...and I don't want or need blessings from someone as close-minded as you].

I said nothing else, I just turned and walked away, not even acknowledging his last sentence.

Two things: First, I know he wasn't trying to be a close-minded, offensive bigot. But that doesn't change the fact that he is. Second, I wish I had not been so gob-smacked, so shocked, so nearly speechless. If I face this sort of situation again, I won't say the bracketed obscenities, but I hope it will go more like this:

Driver: "I don't mean to get real personal, but what's wrong with your son?"

Me: "There's nothing at all wrong with him. He's perfect, but I can't say the same for some people's attitudes and discomfort with disability."

Driver: "Can he walk?"

Me: "If he could walk, don't you think he'd be walking? He does use a wheelchair to get around, but that doesn't mean there's anything wrong with him, and frankly it's offensive to assume that a mobility challenge means there is something 'wrong.'"

Driver (interrupting): "Oh, I wasn't saying that."

Me: "Actually, you were. I think you probably did not mean to cause offense, but it is deeply offensive to assume that people living with disabilities are somehow 'broken' or 'imperfect' or less happy or well-adjusted than anyone else. I don't define my son by his abilities or disabilities, my son doesn't define himself in that way, and you shouldn't either. We all have different challenges, abilities, and disabilities. His happens to be physical and pretty obvious. But that doesn't mean he doesn't live a full, happy, magical life. He does -- he's actually pretty darn lucky compared to most people on the planet."

Driver: "Yeah, he does really look happy. I just want to say thank you for taking care of him."

Me: "Okay, now I think you probably again didn't mean any disrespect, but that comment is so deeply offensive on so many levels. First, he's my son and what would you expect any parent to do? Second, it's not your place to thank me for anything. You don't know my son, you don't know me, you don't know his needs, you don't know everything he adds to my life, you honestly don't know anything at all about this situation, except that you saw a four-year-old leave a restaurant on wheels. What gives you the right to call me over and make a comment like that? Third, that comment assumes that I am somehow burdened rather than blessed by my son. And, not only is that ignorant and wrong, but how dare you make that assumption? Thank you for not abandoning your son by the side of the road the first time he threw a tantrum at 2, or the time he broke one of your favorite things, or whenever something happened that required some parenting."

Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."

Me: "And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your son sitting here. He is not so limited by his disability -- the real limitations come from an attitude by others that he is somehow less-than, or broken, or unhappy, or unlucky, or what have you. I ask you to please consider your attitude and why it has so offended me. And, it's not your place to 'bless' me. You don't know me, and, frankly, I don't want or need your blessings. I have plenty already. Three of them -- my two kids and my wife -- are sitting right there in that van and I'd rather be with them than talking to you in this parking lot, so I'll say goodbye and ask you to please just google disability blogs and read a few thoughts from the perspective of adults and teens living with disabilities. I really think you might find it eye-opening."

Okay, I know that's a fantasy conversation, but it's my fantasy so I'm sticking with it. I do think, though, that since anything that doesn't kill you helps you, I can use this pretty disquieting experience to improve my discussion of disability with ignorant and prejudiced strangers who regularly feel entitled to comment on my boy.

A tale of two businesses

Okay, first off, I realize how ridiculously long it has been since I've posted anything. I expect that if there are any regular readers, they're thinking what the ----? And, quickly deciding to forget about my little ramblings. Okay, I'll try to do better. I have a lot of in-progress posts and will strive to get them all posted soon.

With that preface, on to the topic at hand. Accessibile shopping.

I live in a wonderful city that is generally pretty aware of the need to make things wheelchair-accessible. But, it is a city with many old (pre-ADA) buildings, many of which are very...quirky...and not necessarily easy to adapt as needed to permit shoppers on wheels to frequent them. This, I have discovered, will be a constant issue for me as I go through my city--whether with or without my boy at my side (or up in front of me, or dawdling several paces behind, or wherever that sometimes-naughty four-year-old decides to travel). You see, I sort of see the world differently now. Where before I never noticed the little step or stoop here or there, now I see them all as if they were six feet high. After all, any rise more than a few inches might as well be a few feet for purposes of my boy's powerchair being able to overcome it.

With that backgound (I promise to not start every other paragraph with a "With that" caveat), on with the story. Some weeks ago, I was preparing for my son's fourth birthday party. At his request, I had agreed to perform some magic at the party. I once dabbled in magic in a long-ago mini-career, but had not done much magic in many years (at least not the needle-through-the-baloon type of magic...I think there's lots of other magic that happens every day, but that's another topic for another post).

Despite living in a metropolitan area with several million people, there is only one real brick-and-mortar magic shop around. And, it has a step. Just one, right out front from the street into the door. And, it's tall enough to be an insurmountable barrier. I've encountered shops with steps like this before and been pleasantly surprised that they had a portable ramp in a back closet that they gladly brought out to allow entry. Pretty low-tech, cheap, and simple, but immensely effective and a just-perfect solution for a small business. But, this magic shop? No such luck. I knew this, but I really, really wanted to go there to get some supplies for the party. So I called and spoke with the owner.

I very nicely explained my situation--that I'd love to come shop there, but can't get through the door because of the step and would he please get a simple ramp or something so I can become a regular customer. Okay, so I said I was the wheelchair-user because it was much simpler than explaining I wanted my son to be able to come in, even though he wouldn't actually accompany me until later, etc., etc. The point is that I don't want to frequent a business that does not welcome my boy. No more than I'd want to go to a restaurant that serves me, but not my African-American family members.

Naive me, I figured the owner would immediately say "oh, I never thought about that and yes, indeed, I can get a ramp on Tuesday, see you on Wednesday." Not so. He was outright hostile. Basically said too bad, he doesn't particularly care that I can't get in. Couldn't be bothered to even look into the cost of a ramp, and essentially couldn't give a shit. Wow. That was shocking and infuriating. And, pretty profoundly upsetting. This wasn't just a case of some ignorant person staring at my boy, this was someone saying he does not want to be bothered with him. Needless to say, I bought my magic supplies on-line.

Depressing and infuriating.

Flash forward a week or so and I decide to go to a great old bookstore that I've been to hundreds of times. I know the entry is no problem. I know that even though there is an upstairs section, the children's section is on the ground level so I can take my kids there and get them some books. We arrive, with my boy leading the charge, and find out the store has rearranged the sections and now the childrens' books are up on the other side of four stairs. It's an old, quirky building crammed with books...one of those great semi-musty bookshops that has been around for decades. A real landmark. But, all of a sudden, unwelcoming to my family.

So, I ask at the counter to talk to the manager. Soon two men come to see me--the co-owners of the shop. I explain the predicament and ask if there is some way they can install a ramp up those four steps so my boy can grow up going to this great shop instead of just Borders or Barnes & Noble. The owners are very thoughtful about it, tell me they struggled with the fact that some of their shop is not wheelchair acessible, and have tried to do what they can with the physical space they have. They looked into a ramp, they say, but it just won't work in the space. And, I can actually see their point. There just isn't enough room in this quirky 100-ish year old building. They explain that they will do anything they can to accomodate...even bringing an entire section worth of books down to a customer who uses a wheelchair. And, I can tell they are serious and not just feeding me bullshit excuses. We have a good talk and I explain how much I was looking forward to my kids growing up and going to this bookstore (totally sincere and true). They get it. They give me their contact information. They explain they're having a meeting with the third owner next week and they will all discuss it again.

Then, a week later, I get a call from one of them. He tells me they did meet and did look into the feasibility of a ramp again, but that it just won't fit. I explain that maybe they can try a lift--not an elevator but a simple, fairly inexpensive (as these things go) platform lift that would enable someone to wheel onto it, raise it, and wheel off on the top of these four steps. He gets on the web as I'm describing this device and sees it and says they'll look into it. And I believe they will. And, even if it ends up not working out, I feel that they really will try. Because their building is so old, I think it is exempt from ADA requirements to some extent (although these experiences remind me I really need to learn the details of that law), so they don't need to do anything at all. But it's clear that they want to if they can. I'm left feeling like they don't hold my boy ini contempt like the magic shop ass. No, they respect him and his mobility needs. It's a world of difference and restores some faith in people for me.

So, that's my tale of two businesses. I guess the moral is that what you do, although very important, isn't as important as how you do it. Simply caring, and recognizing everyone's need for respect and dignity can go a long, long way to creating a less-imperfect world.

Public property

I remember when my wife was first pregnant reading the baby book warnings that once pregnant you become public property. That strangers will comment on the big belly, and even touch a pregnant's woman stomach. I thought how odd. What would possess a stranger to have the audacity to do that to a stranger, pregnant or not. I did see a smidgen of that sort of thing during my wife's pregnancies--especially when she was carrying my boy (he was a really big baby...9+ pounds...and my bride's belly reflected that fact). But, all in all, there was no real public property effect from pregnancy.

I've also lived overseas in a country where white people were the minority--and rarely seen in very rural areas that I visited at times. At times, kids would be fascinated by the foreigner--and his hairy forearms. So, that was a bit of an experience in being public property.

But, neither of those experiences approach the public-property aspect that comes with being my boy, or with my boy. Simply put, it's impossible to go anywhere without receiving at least some stares and comments. Usually they're good-natured. The stares are most-commonly from curious people who are (1) amazed that a 3-1/2 year old can control a powerchair so deftly; (2) taken by how damn cute my boy is; or (3) impressed at how cool my boy's "red-racer" is (thanks to permobil for making a great-looking pediatric powerchair). These good-natured looks don't bother me. They are momentary and they come from a not-bad place.

But, then there are the two types of stares that make me want to rip people's faces off. First, the open-mouthed gape. These are the folks who glare and don't look away after a second or two. In fact, don't look away even after a mother-bear or papa-bear glare back. These are the people who turn their heads...sometimes their bodies...to keep staring. Really pretty unbelievable. Rare, but enraging.

Second, the "oh, how sad" puppy dog stare. It's when you just know the brain behind those eyes is thinking "poor little boy" or "poor family." It makes me want to say "save your goddamned pity for someone who needs it--we sure don't." What the puppy-dog starer doesn't know is that my boy is not sad, or unfortunate, or an object worthy of pity. He's a happy, funny, and deeply-loved kid. And, our family neither needs nor wants anyone's pity. We're happy as hell. As my wife said to me the other day -- we dance. We fucking dance! In every possible way. It's what we do. And, if you can't dance, well, you know the rest... (thanks for that one, Emma G).

So, those are the looks. But, public property manifests itself verbally and not just visually. The comments, too, fall into several categories, but that is a topic for a future post.