Despite the apparent forcefulness of last Tuesday’s rant on the Robert Ethan Saylor case, I struggled with the decision to post about it. The story picked up a lot of steam following the grand jury’s decision not to indict, but I’d been watching the case for weeks. In fact, I had a draft written several weeks ago that I discarded, and even after the grand jury findings were released, I wanted to lay low.
Like Courtney of Pudge and Biggs, I think the case is murkier than the outrage in our community would have us believe, and in many ways I’m willing to accept that it’s “just” an unfortunate tragedy. But there is enough doubt in my mind – based on our society’s attitude toward disability in general and Down syndrome in particular – that I also can’t wholly accept that the officers weren’t responsible. Which brings me around to a subject that’s been bugging me for some time.
We want to be treated like everyone else…except when we don’t.
A lot of the outrage in the Saylor case is about how the deputies should have received training in dealing with individuals with special needs, while also focusing on the alleged violations of standard protocols of restraint (i.e., cuffing him while he was face down on the floor). I have to ask: if it’s wrong to cuff someone when he’s face down on the floor, what difference does it make that he had Down syndrome? There are other questions, of course, but I want to move on from those for today and ask a different one.
Is it right for the special needs community to expect special treatment?
I wanted Sarah Kate to be able to enjoy softball and I didn’t think she would if she played 10U, so we asked for an exception for her to play down in 8U for another year. She hits, fields, and practices like all of the other girls on her team, and she’s the same size as the average 8U girl, so she doesn’t look older. I want her to be treated like the other girls, and she is…except for that one big rule that applied before she even showed up for the draft.
Because she’s different and she needs special treatment.
Then there’s Nathan. I enrolled him in private preschool last year because I wanted him to learn and play alongside typical peers, just as he will be expected to do for years to come. The preschool welcomed him with open arms, no questions asked and no concerns expressed (not everyone with special kids is so lucky). But then I brought them a cheat sheet of sign language, and I asked if the Early Intervention therapists could come observe and work with him in class, and the therapists asked the teacher if she could do X, Y, and Z with him when he’s there.
Because he’s different and he needs special treatment.
And then there’s me. I say I’m just like other moms, but I’m not. I don’t have a lot of patience for people who complain about things that, in my opinion, don’t matter. I don’t want to hear that a mom was “devastated” that her baby was a boy and not a girl, because what I hear is “spoiled and ungrateful.” Is that fair? Probably not, but there it is. And if we are to be friends, you’ve got to remove the r-word from your vocabulary. A slip up or two I might let slide, but beyond that I’m done.
Because I’m different and I expect special treatment.
It’s a fine line to walk, and as I mulled over the Saylor case, I felt like a hypocrite. Are my children (and I) entitled to special treatment because they have things a little tougher than the typical crowd? It felt icky to think of it in those terms.
But the more I thought about it, the more I realized that I’m right back where I was when I was a female working in a male-dominated field. Back then, I didn’t try to be like the men, and I didn’t expect special treatment. Sometimes my femaleness meant I got the shaft, but other times it gave me a leg up. All I wanted then was to feel confident that the people I worked for and with acted in good faith.
I stand by what I said last week about the Saylor case, not because I think that Ethan Saylor should have been given special treatment due to his Down syndrome, but because I’m not convinced that all of the people involved – the theater lackey, the off-duty deputies, the bystanders, and the grand jury – acted in good faith.
Either everyone’s special or nobody is – there’s no such thing as ‘one size fits all’, no matter your array (or not) of labels.
Yes, this is a murky fine line but it really boils down to the humanity of each person. Our kids’ needs stand out b/c they are great and generally quite visible and different. But, don’t we also need to look at “typical” kids’ individual needs? Sure, they’re usually easier and cheaper to meet. Yes, I agree with the weirdness of inclusion and wanting to be like everyone else while still needing something different. Thanks for articulating this much better than I am at the moment.
I agree with with Considerer. I have a hard time with people complaining that families with kids with special needs are asking for special treatment. We all want special treatment for our kids in one way or another. My special treatment for my kid might not look like the special treatment you ask for your kid, but aren’t we all just trying to get our children the resources we can to make them the most successful? Whether it’s a kid who is reading well above grade level or a kid struggling with math or a kid who needs OT, or whatever, my thought is if you’re a parent and you’re doing it right, you’re paying attention to what your kids’ individual needs are and trying to meet them.
I think the problem lies not in that we are trying to seek resources for kids with special needs, but that the mindset has to change that kids with special needs (and adults for that matter) are WORTHY of the same level of attention we demand for our “typical” kids. If my daughter is struggling in math, we talk to the teacher and come up with strategies to help. A tutor, something. If my daughter had DS, then (some) people argue why bother she’ll never learn it anyway. It goes back to what you said about changing how people see “special needs” and think “less than”.
I’m off to a meeting, hopefully this makes sense.
Here’s your best line:
“I think the problem lies not in that we are trying to seek resources for kids with special needs, but that the mindset has to change that kids with special needs (and adults for that matter) are WORTHY of the same level of attention we demand for our “typical” kids.”
And therein lies the problem…and why I posted such a strong reaction to the Saylor case.
Here’s the question: You have mentioned that Sarah Kate is in the gifted program. Have you found it easier or harder to get the extra enrichment she needs compared with getting remedial help?
Great question! Fortunately for us, neither have been difficult because we have a strong school system in a small town. Not only are the schools administratively willing to help, but the teachers and administration know the families in our town, so they are personally willing to help. I know not all special families are so lucky, and I am thankful. Our experience with the schools with respect to Nathan is in its infancy, but so far, so good there, as well.
BUT…I will say a couple of things thing re: gifted education. The number of kids in the gifted program here is HUGE. Like…I have my doubts about the validity of the screening process huge. I won’t say anything much beyond that, but it does give me pause. I’ve also read comments on a local newspaper message board about how money should be transferred from special ed to gifted ed…because, of course, the gifted kids are the ones who’ll “amount to something,” not the ones in special ed. Yes, it did make my blood boil. I added a comment of my own inquiring what should be done about my both gifted and challenged daughter.
I would unfortunately venture a guess that they would argue that “we don’t mean kids like SK with PHYSICAL needs but intellectually gifted.” It makes people feel icky to say it but they mean kids with intellectual disabilities, and I would argue for them to define “amount to something.” Because one person places a premium on someone becoming a doctor or a lawyer, don’t we all amount to something? If we’re bagging groceries at the store or sweeping the floor at Starbucks, isn’t that something? What if we’re not working but by our very existence helping people become more compassionate and understanding. A job doesn’t make you human.
Problem is everyone wants their kid to be “gifted.” But this ticks me off to no end because I truly believe everyone has a gift. You can fail to see it, but that doesn’t mean it doesn’t exist. Man I’d have a hard time not blasting those folks on your local message board.
I am a teacher and not every child is gifted, sorry. That doesn’t mean every child is without a gift. The gifted program deserves special treatment too.
Andi, as usual I enjoyed your writings and food for thought. Thanks.
“I don’t want to hear that a mom was “devastated” that her baby was a boy and not a girl, because what I hear is “spoiled and ungrateful.””
Amen to that. I worked with a woman who was absolutely shocked and heartbroken when she found out the much longed for girl she was a carrying was *gasp* a boy. She said things like “It hasn’t really sunk in yet” and one of our coworkers said she almost felt like saying “I’m so sorry” when she found out but it seemed sick to say I’m sorry when she was pregnant with a healthy child. One of our other coworkers struggled for years with infertility to get a seriously ill child, so she was furious. I have no children and would be delighted to get a boy, girl, down syndrome or dwarf. Po is a selfish, spoiled, ungrateful brat for daring to be disappointed for one second that her healthy boy was the wrong gender and frankly doesn’t deserve him.
What’s wrong with meeting PEOPLE no matter what the age, or ability, where they are? Why is basic respect: please, thank you, excuse me So hard? It’s a little awkward at first, but honestly, effort counts.
I am a stare-er. Partly a cp related “look” I may not be looking at what it seems like I am looking at. Sometimes , as a mom, I try to walk in the caregiver’s shoes in that moment-
I guess I am trying to say is don’t judge eachother. Show some grace no matter which side of the ability line you stand.
I loved this post. I’ve thought a lot about this contradiction. Part of the way I’ve reconciled it is that the world we live in (schools, etc.) is designed to meet the needs/strengths/skills of ‘typical’ kids. We just finished my daughter’s IEP. A good chunk of the assistance she needs is a function of the fact that she learns differently than most children. The extras that she receives are mostly because of this mismatch. Even that said, watching my daughter in her inclusive preschool for the past 4 years has also been a reminder of how most ‘typical’ children still have a lot of quirks! It was often the case that many typical children required just as much extra assistance as did my daughter.
“…the world we live in (schools, etc.) is designed to meet the needs/strengths/skills of ‘typical’ kids…”
That’s such a great point, Pam, and I’m ashamed I haven’t thought of it before. That’s the case with so many things – I have always said that “cars aren’t built for short people” because they aren’t. I had two backing accidents in my first vehicle – a 1978 Oldsmobile Cutlass Supreme! – because I couldn’t see very well out of the back windows. My dad suggested I drive sitting on a pillow, which (being a teenager) I flatly refused. Fast forward um, a lot of years later 🙂 and the car I drive now has power seats, which thankfully raise up, but I’m still too close to the steering wheel.
It’s kinda the same thing, wouldn’t you say?
Definitely! Really enjoy your blog.
I’ve been thinking about this a lot the past day or so. And it’s funny, because I have a son who by all measures is exceedingly bright. But he’s had some major struggles in school. For a stretch after Christmas break he was crying every. single. day. in class. His teacher and my wife and I had to develop some strategies for dealing with this, and getting to the root of the behavior. At another point he was leaving class to use the restroom no less than 5 times a day. Most often because he was bored or because the first time he attempted to use the restroom there was a spider or the door wouldn’t lock or SOMETHING. And again the teacher and I and my wife had to develop strategies to curb this (as Pam above mentioned) quirky behavior. Again, it’s all about meeting our kids needs, regardless of what they are.
Andi,
Thank you for your most thoughtful posts. We’ve raised two children, one who has CP (now 25) and one with EI, both adopted as infants. I have many reasons to be interested in your posts, including the fact that I’m thinking about becoming an advocate for other families. I had my head down for a long time just getting the job down on my own, yet I know there are many others who face similar issues. I appreciate how your questions challenge social attitudes and institutional inadequacies.
I am a mom of a special needs boy and I definitely relate to your blog post. My question is why do you keep referring to the theater employee as a “lackey”? It is an insulting word choice and I’m wondering if it was intentional.
Because I’m not inclined to be very forgiving of someone who felt a young man with a disability who didn’t want to leave the movie theater warranted a call to three off duty sheriff’s deputies. Is that fair? Probably not. Am I being judgmental? Probably so.
As hard as I am trying to understand the points of view of all involved, the wound is still raw. I wouldn’t say that word was “intentionally intentional” 🙂 but everything I right here is intentional so I can’t claim a slip up, either.
I do apologize for being offensive.