As Down Syndrome Awareness Month 2012 winds to a close, I wanted to share some final, sort of random thoughts – things that have been floating around in my mind that I had hoped to find the time to delve into more deeply during the month, but . . . alas.
For what it’s worth.
The same but different. The whole “More Alike Than Different” campaign has always sort of rubbed me the wrong way. Yes, it’s true that kids/people with Down syndrome are kids/people first, and because of that, they share universal human traits, both physical and emotional. However, kids with Down syndrome are different from their typical peers: the first thing most people notice is that they have a pretty distinctive, recognizable appearance; they sound different from their typical peers, they learn and retain information differently than their typical peers, and they often have health issues that are not as prevalent in the general population. To deny these fundamental differences, or even to play them down, I think does a disservice both to the general population and to the Down syndrome community. The tendency when advocating to focus on the positive, while completely understandable – none of us wants to feel like what we present might play into any expectant parent’s decision to terminate upon receiving a prenatal diagnosis of Ds, and we all want our kids to be accepted and treated with respect and compassion – I think misses the point of advocating in the first place. At least for me. My goal is not to get anyone to see Finn “as close to typical or normal as possible,” but rather, to acknowledge his differences and not be afraid of them. To embrace diversity, you first have to acknowledge and accept differences.
Difference is all around us. There is a little person who works at our local Target. My friend Robin mentioned her in her guest post here recently (and it’s interesting, because apparently, October is also Dwarfism Awareness Month). I happened to be at Target this past weekend (okay, I’m there, like, every other day it seems), and had Kevin and Annabelle with me. When we walked in, this little person, who is probably no more than four feet tall, was stopping everyone who came in to tell them about a Red Card promotion, and she stopped us as well. Later, Annabelle said to me, “Mommy, you know that lady who talked to us when we came in?” “Yes,” I said. “Did you notice?” Annabelle said. I braced myself for some blunt, uncensored reference to her small size from my 8-year old. “Notice what?” I asked. “Her name tag said ‘Mimi,’ so that’s her name. I like that name.” I was actually sort of dumbfounded. That’s what Annabelle noticed – her name. Or at least that’s what was most notable in Annabelle’s mind. And I thought to myself, “Cool. Very, very cool.”
No, they’re not always happy. Or sweet. Or loving. I’m not exactly sure where this particular stereotype came from. Perhaps as they grow older and their intellectual impairments become more manifest, they seem – and perhaps actually are – relatively unfettered by the typical frustrations and stress factors that most of us who don’t have developmental disabilities experience; I really can’t say. What I can say is that (a) the stereotype, even though “positive,” reduces people with Down syndrome to one-dimensional, cookie-cutter caricatures rather than real people, and (b) speaking purely from my own perspective, Finn is most definitely not any more happy, loving, or sweet than any of my other kids have been. He experiences and expresses fear, and anger, and frustration, and sadness. He can be stubborn, obstinate, and yes, even bratty and obnoxious. Our biggest challenge with him at this point is tantrums; he’s been in a very tantrumy phase for several months now. When he is frustrated or doesn’t get his way or, really, is displeased in any way, he responds by screaming and yelling repeatedly at the top of his lungs. I have no doubt that this behavior has very much to do with his limited language skills; although he is making great strides in attaining more and more expressive language, it’s still not his go-to mode of communication, especially when he’s upset. Instead, he acts out and responds emotionally and viscerally, and I’ll be honest – it’s taxing.
I don’t care how smart your kid is. I’m tired of all the emphasis on intelligence and achievement. Competitive parenting is everywhere, even in the Down syndrome community. It’s great to be proud of your child’s accomplishments, but I think that too many parents, whether they are conscious of it or not, see their kids’ achievements as proof that they are at the top of the Parenting Game, or that by rising above so-called mediocrity, they are elevated to some upper echelon of parenting, and their kids to some upper echelon of kids. So much of intelligence and ability and aptitude is pre-determined by genetics and is out of our hands; we can and should provide our kids with opportunities, and we can and should challenge them, but not every kid is gifted, and you can’t make a kid into a genius – not with all the flashcards and tutoring and enrichment activities in the world – and smart and accomplished don’t equal success and happiness, anyway. Especially within the Down syndrome parenting community, I hate seeing this, the focus on smarts and achievement. I get that we’re trying to overcome old ideas about Down syndrome, but isn’t one of the big, beautiful epiphanies we’re all supposed to have is that everyone is valuable no matter how intelligent or talented they may or may not be?
Inclusion is ideal, and yet . . . It’s hard to achieve. I’ve seen most of the strides Finn has made over the four years of his life thus far come mostly through inclusion in regular family activities (his siblings treat him no differently than they treat each other, and this has served him very well), and now, preschool. The preschool he attends two days a week (I wish it were three days a week, but it isn’t cheap!) is awesome. It’s a “lab school” at our local community college, which means that it serves both as a preschool for young children, and a classroom for college students taking Child Development classes. It is a “typical” preschool that is committed to diversity and inclusion, and this makes me happy for two reasons: (1) because they welcome Finn, and (2) because the college students who are exposed to Finn and other kids with differences will benefit from that exposure. Finn is learning all kinds of wonderful things just by virtue of being included with typically developing peers. However, it only works because the powers that be are willing to make it work; they’re willing to see Finn as a whole person and not just a set of deficiencies; they’re willing to make accommodations for him (for instance, allowing him to come to school in Pull-Ups even though, officially, kids are supposed to be potty-trained to attend). Inclusion is an ideal that I believe is worth striving for, but it’s certainly not a given. It only works when all parties are willing and when appropriate accommodations are made, and unfortunately, this isn’t always possible, or in any event, it’s certainly not often the reality. And although I love Finn’s preschool and am grateful beyond words that the opportunity to enroll him there basically fell into our laps, I’m already stressing out about next year, and about kindergarten. I don’t think we’ll enroll him in kindergarten before he’s six, which means another year of preschool after this year, but in all honesty, I think he’s going to need something more than what his present preschool has to offer in order to get him ready for kindergarten. And I’m afraid that any other typical preschool that is a little more academically geared than his present preschool isn’t going to welcome him the way his present preschool has, and I know that we’re going to have a major battle on our hands to get him enrolled in typical kindergarten at our neighborhood public school in a couple years.
“Retard” is going the way of “idiot.” As much as I despise Ann Coulter and the garbage that issues forth from her, she’s right about something: “idiot,” “moron,” and “imbecile” were all, once upon a time, terms used to describe, in clinical terms, people with developmental disabilities. It’s been so long, at least in western society, however, since those words were used in clinical terminology, that they’ve become pretty far-removed from their original definitions. Such is the evolution of words. As a result, most people use them freely now and think nothing of it; they’re not considered slurs by a long shot, even by parents of kids with developmental disabilities, even though, like “retarded,” they all have their roots in the same exact place. Personally, I don’t like “idiot,” “moron,” or “imbecile” any more than I like “retard” for this very reason; it doesn’t feel right to me to disavow one while accepting the others, so I don’t use any of them, I don’t allow my kids to use any of them, and I cringe whenever I hear other people use them. But guess what – “retard” and “retarded” are headed in the same exact direction, thanks to Rosa’s Law. Although well-intended, it doesn’t serve to change people’s attitudes towards those with developmental disabilities – which is at the crux of disparaging language to begin with – it only serves to change the words. And so, because of this, in another few years, “retard” will be exactly the same in people’s minds as “idiot”: so far removed from its original meaning that saying it describes the developmentally disabled won’t even hold water anymore. So, I guess my point is just that I think about this a lot, and it kind of makes the fight against the R-word feel that much more hopeless. And that they’re all ugly words when you get right down to it, and there are dozens of alternative, handy words available to express what we want to express without making reference to entire classes of people who have been marginalized forever and a day. And also that I think the key is focusing on attitudes and perceptions.
And that pretty much wraps up Down Syndrome Awareness Month for me. In truth, though, every day is Down Syndrome Awareness Month in our house . . . and yet, at the same time, Down syndrome really isn’t very often center stage in our house. We advocate by including Finn as a whole, valuable person in our family, and by being open about what Down syndrome looks like in our family. And it’s gratifying to know that at least a few people’s perceptions have been changed because of this.
Tomorrow, hopefully, photos of Finn in his Halloween costume. Fingers crossed!
I have to confess that I was a little surprised by the general reaction to my last post about Ryan Langston attending a special school for children with Down syndrome rather than attending whatever typical school I assume his brother attends. I had sort of expected more outrage by like-minded parents, and not necessarily the “Wait a second, let’s look at the benefits of Special Education” that the post instead generated.
So I started wondering: am I naive and idealistic? Yes, I very well may be.
Nevertheless, inclusion is what I want for Finn, and it’s what I believe in my heart of hearts should be the goal for society as a whole.
I understand that there are lots of anecdotal instances where families can say with absolute conviction that their child is/was better off in a separate, special ed setting. I have to believe, however, that these instances are only true because true inclusion – or “authentic inclusion” as blogger/writer/activist Lisa Jo Rudy calls it – has not been achieved. Placing a child with special needs in a typical classroom in which there is a lack or absence of the necessary attitudes and supports necessary to make inclusion work is almost certainly not going to go well. And the truth is that true or authentic inclusion very likely is difficult to achieve. It takes committment and genuine willingness on the part of the powers-that-be (i.e., the school/school district staff), it takes money to provide the resources, support and modifications necessary for the student to succeed, and I would venture to guess that both of these factors are rarely achieved simultaneously and continuously. So what we see time and time again is so-called inclusion, which isn’t authentic inclusion at all, which often fails. Which leaves a lot of parents feeling like their child will be better served in a separate, special ed setting.
And what happens to a child who grows up segregated in a special ed setting? Does he grow up with a feeling of belonging and equality with his peers? Does he grow up equipped to function in society? Or is he forever instilled with a feeling of otherness and ineptitude?
There are some wonderful articles out there on inclusion. Here are a couple:
The Need to Belong: Rediscovering Maslow’s Hierarchy of Needs by Norman Kunc (thank you, Alison, for introducing me to him!)
The Moral Imperative of Inclusion by Kathie Snow
Maybe I am naive and idealistic. And there is no doubt that true inclusion is not an easy thing to achieve. But isn’t it what we should strive for?
Many of we parents in the Down syndrome community waited eagerly for the segment that was to air this evening on NBC Nightly News with Brian Williams: a piece about the suddenly famous Ryan Langston, the little boy with Down syndrome in the recent Target and Nordstrom ads that have been a hot topic on blogs, Facebook, and elsewhere.
I caught the segment on the internet after it had aired. I, like so many other people, had anticipated a wholly moving and inspiring piece, a glimpse into this wondrous but average little boy’s life. And on the surface, that’s what we got.
To some, to many, any press is good press. And I wondered, as I watched and felt something like a stone sink in the pit of my stomach, “Am I overreacting? Am I being nitpicky? Am I the only one who’s watching this and feels like crying?”
Ryan Langston is a beautiful little boy with lots of energy, a mop of blond hair, lots of talent and a sense of humor, two parents who adore him, a twin brother (who does not have Ds), and a penchant for knowing exactly what to do for a camera. And this news segment was going to highlight the very normalcy of a little boy with Down syndrome. So what about this whole thing could possibly be getting me down?
Here, you watch:
Did you pick up on it? The part where Anne Thompson informs us that Ryan “attends a school for Down syndrome children . . . .”?
Why is it so difficult for People First Language to take hold for folks? I would like to think that a news outfit like NBC would do their homework before scripting a newscast that is meant to be an advocacy piece. How could a simple thing like appropriate terminology be overlooked?
But even more disheartening was hearing that this talented, smart little boy, who, as the news piece pointed out, can do so many of the things that most “average” kids his age can do – and some things most cannot do, like rock a Nordstrom ad – does not attend a regular school like most kids – like his twin brother – but instead, a separate school. A special school. A school for Down syndrome children.
I make no judgment against Ryan’s parents. I do not claim to know the circumstances that led to Ryan’s enrollment in a separate special ed school. It was just a very strange juxtaposition: a celebration of a child who is showing the world that Down syndrome is not so different, but a child who is separated, segregated nonetheless.
It hurts my heart. I don’t want that for Finn. I want Finn, and all children and people with Down syndrome to be fully accepted, embraced, and included. I want them to be welcomed to live and play and work and walk – and, yes, learn – alongside everyone else.
Is that ever going to happen?
Facebook and blogs have been abuzz with talk of the recently run ads by mega retailers Nordstrom and Target featuring a boy with Down syndrome. The most notable thing, possibly, is that neither company made a big deal about it, and that, my friends, says a lot. It says that he’s just a kid in their eyes, and they didn’t set out to capitalize on what sets him apart from the typical models they use.
This actually isn’t the first time Target has run an ad featuring a child with Down syndrome. Check this one out:
Here’s an old McDonald’s commercial – I actually remember this being run!
Here’s an article I found about another child model who happens to have Down syndrome:
It’s all about inclusion. In every aspect of life. Inclusion is good for everyone. Opening doors and providing opportunities to people with Down syndrome allows them to achieve things that in years past we never dreamed possible. And being exposed to people with differences in everyday situations tears down walls and promotes acceptance.
And that’s the truth.
Like The Shape of the Eye, The Politics of Down Syndrome examines how Down syndrome has been treated by the medical profession and society historically, and how our attitudes today are still very much shaped by old prejudices and outdated ideas about Down syndrome. While the author has a young daughter who has Down syndrome and he does say in the book that having her has definitely influenced his own evolving views, this is not a memoir. It’s more a sociological study . . . .
Read the rest of my review here for a chance to get your hands on a copy of this book.
Also, check this out: On Prenatal Screenings, Down Syndrome, and Being Pro-Choice was picked up by Yahoo! Voices. Please share it!
This morning Michael and I, along with Finn, visited the special ed preschool class in which Finn’s IEP “team” (sans parents; I use the term “team” extremely loosely since there has been no collaborative effort from day 1 of this process) recommends he be placed, post-haste.
It’s true that, for a variety of reasons, we have already decided that we are leaning against placing Finn in any preschool program at this time, and it’s also true that we (or at least I, maybe more so than Michael) have our hackles up about a segregated special ed program. That said, I really wanted and attempted to go into this morning’s visit with an open mind.
Finn’s IEP “team,” in their last communication with us (see here), offered to make arrangements for us to visit the preschool program they are recommending for Finn. Given the adversarial nature of our relationship to date, however, I didn’t want to make the arrangements through the “team,” and figured we were pretty capable of contacting the school and making the arrangements ourselves. So a couple weeks ago I contacted the school, a Title 1 school, and was put in touch with the school psychologist to arrange to visit the preschool class.
In an interesting turn of events, it turns out that this particular school psychologist has replaced the psychologist originally on Finn’s IEP “team” (I know, it’s irritating seeing those quotes around “team” all the time, but I will keep using them until the “team” actually starts being a team that values us, Finn’s parents, as members), and she is the mother of a classmate/friend of Joey’s. I don’t know at this point if this is a good or a bad thing (or meaningless), but I did think it might be worth some name-dropping this morning when we met with her.
Anyway, she was nice enough (maybe friendlier, knowing that her son and our son are friends/classmates?). She oohed and ahhed over Finn (I’ve gotten used to this, but still rarely know how to take it) and took us over to the special ed preschool classroom.
My initial internal reaction was, “Well, this doesn’t seem so bad.” In a lot of ways, it looked like a typical preschool classroom, with lots of artwork on the walls, toys and books and little tables and chairs. There were twelve children in the class, ranging in age from 3 to 5, and there was one teacher and two aides. There was a section of tables and chairs in the center of the classroom where most of the children were sitting, each engaged in a different activity: one was painting, one was playing with a puzzle, one was banging some kind of toy on the table, one was looking at a book, etc. Two children at a time were pulled from the group and taken to “stations” at the periphery of the classroom where they received specialized instruction in 10-15 minute segments (I believe one of them was receiving speech therapy, and the other station involved a computer). I could see that two of the children had Down syndrome; the rest of the children appeared to have varying diagnoses. There were no “typical” children in the class.
It took a few minutes of being there to start getting a sense of what I didn’t like about it:
- There are no typical children in the class; no typically developing peer models.
- There did not seem to be a real sense of cohesiveness to the class. Because there are varying diagnoses/needs/ability levels/behavior issues among the children, to a large degree it seemed like the teacher and aides were engaging in crowd control (not that it’s a big crowd; it is a small class, which is a plus), trying to keep each child occupied and on task. But each child was engaged in a different activity, I assume based on that child’s IEP (??). We were only there for a half hour, but we didn’t see any group activities or any interaction between the children.
- Neither the teacher nor the aides seemed particularly warm, and in fact, seemed a little harsh at times. I saw the teacher and one of the aides, at different times, grab different children’s hands, say “Hands down!” sternly, and rather roughly move their hands away from whatever it was they weren’t supposed to be touching. Frankly, I’m not at all keen on my kid being manhandled like that.
- This is a five-days-a week, five-plus-hours-a-day preschool program. All the children in the class attend full-time. There doesn’t seem to be an option for fewer days or hours of attendance.
Look, I know from a purely clinical standpoint, there is truth to this theory. But I hate this line of thinking more and more all the time, for so many reasons. First of all, it seems like every “expert” who has tried to sell us on this “fact” has come by their “expertise” by training and not by first-hand observation and experience as a parent of a child with Down syndrome. The same way that obstetricians are trained to believe that highly interventive hospital births are by and large the safest option for having babies, SLPs are trained to believe that formal speech therapy from infancy is the best way to overcome speech issues, physical therapists are trained to believe that if not for their intervention, children with Down syndrome would come by their gross motor skills much later, and in the wrong way, and special ed teachers are trained to believe that kids with developmental delays of all varieties belong in special ed classrooms promptly at age 3. I just can’t buy into this wholeheartedly. Sure, this is true for some kids in some situations, but it’s not a one-size fits all proposition. And it overlooks the value of organic learning that comes from just being loved and cared for and fully included in a family and that family’s experiences.
Also, this line of thinking promulgates the whole cultural belief that kids like Finn are a set of problems and issues to be addressed and fixed. He is a human being, not a problem that I want a lifetime spent on trying to fix, or make as “normal” as possible. Frankly, “normal” is an ideal that I don’t think he should have to spend his life trying to achieve; it only sets him up for failure and promotes the attitude that he’s defective. This is not to say that certain supports at certain times throughout his life won’t benefit him, but I’m just weary of this whole notion that speech therapy is going to fix his speech, and occupational therapy is going to fix his fine motor skills and physical therapy is going to fix his gross motor skills, and special ed is going to . . . what? He’s always going to have Down syndrome, and this means certain things that can’t be changed. I accept that, with all my heart. It seems like it’s everyone else who can’t accept that. Let’s try to improve him. Let’s try to fix him. Let’s try to make him as close to “normal” as possible, and then maybe, just maybe, he will be more acceptable.
I digress. Obviously, this is an emotionally charged issue for me. And I guess it goes without saying that I’m not sure. Of course I’m not. This whole thing would not be such a struggle for me if I were sure about everything. Am I selling Finn short? Am I overshooting? In my heart of hearts, I don’t know.
Anyway. The school psychologist explained to us that there is actually another special ed preschool class that is categorized as “mild to moderate” (this one, the one recommended for Finn, is “moderate to severe”), and the main differences between the two are that: (1) the kids in the “mild to moderate” class are fairly verbal, (2) they are toilet trained, and (3) there are more kids in the class and only one teacher and one aide, so a higher student-to-teacher ratio. This explains why the IEP “team” wants Finn placed in the “moderate to severe” class: he’s not toilet trained (truth be told, we have not even attempted it yet, but I am psyching myself up to tackle it in the near future), and he has little speech (though, I have to say, he is picking up words left and right lately, it’s been pretty amazing to see just how verbal he has become in the last couple of months – and with no speech therapy! Imagine that.).
She also told us that the goal is to have the kids “mainstreamed” by kindergarten (and in special ed, kindergarten starts promptly at age 5, period; the powers that be see no benefit in some parents perhaps wanting to delay kindergarten for a year as many parents of typically developing kids do). Now, for those of you who may be under a widely held misconception, “mainstreaming” and “inclusion” are two entirely different animals. “Inclusion” means that the child is in a regular classroom with regular, typically developing peers, full-time. They may have an aide, and they may get pulled out of class for things like speech therapy and the like, but they are enrolled in a regular classroom. A lot of lay people think this is “mainstreaming,” but it’s not. “Mainstreaming” is when a child is enrolled in a separate, special ed class, and is allowed to spend limited periods of time each day or each week with the typical kids. The school psychologist told us today that for this particular preschool program, the goal is to have them “mainstreamed” by kindergarten, which she explained specifically to mean that in kindergarten they spend 30 minutes a day (or less) with their typically developing peers.
Sigh. So where does all of this leave us? Good question. What I can say is that what we saw today, and what the school psychologist explained to us about how his future education might look through the eyes of the school district is just not what I envision – or would like to envision – for Finn. We visited the preschool program today so that we could go to the next meeting with the IEP “team” and be able to articulate our thoughts about their recommendations. I’m not in favor of this placement for Finn; I think it is very possible, and not unrealistic or unreasonable to think that he could start preschool in a year at some type of preschool with typical peer models, perhaps do two years of preschool, and maybe start kindergarten, fully included in a regular kinder classroom at our home school, by the time he’s 6.
As it stands right now, we have been waiting two weeks to hear back from the IEP “team” about scheduling a meeting.
And that’s all I have to say about that. For now.
One of my commenters recently shared a link to this article:
In all honesty, I’m not sure I understand all the outrage. I mean, I do – I do understand the hurt feelings and the disappointment being experienced by this teen and his family – but I guess I don’t actually agree with it.
You know what my first thought was when I read the article? Probably not what you might expect it would be from a parent of a child with Down syndrome. My first thought was, “This kid never should have been on the football team in the first place.”
See, here’s the thing: I don’t want my kid to be anybody’s mascot. These feel-good stories you come across from time to time about the kid with Down syndrome being on the high school water polo team, or being crowned Homecoming King . . . those stories always make me wonder. And they always leave a slightly unpleasant taste in my mouth.
The article in question says, “. . . a student with Down Syndrome who would suit up and cheer during every varsity game, eventually earning the right to lead the team onto the field and run a touchdown play after every game. He even scored one official touchdown in a game.” Wow. He even scored one official touchdown in a game! That’s so great. It’s so heartwarming how the community gets to feel like such do-gooders over this kid, isn’t it?
Yeah, well, no thanks. To me, this represents another form of marginalization and dehumanization. If my kid is going to be in the club, or on the team, I want it to be on his own merits and abilities – not as some charity case of inclusion that affords everyone around him an opportunity to give themselves a collective pat on the back for being so big that they can get past the fact that he has Down syndrome (gasp!).
And the truth is, the fact that he has Down syndrome will necessarily preclude him from being able to do certain things. I can accept that, and I’d like to think that my husband and I are raising all of our kids with realistic expectations – lofty goals, yes, but also the ability to accept whatever limitations they might have (and they all have limitations – we all do) and deal with them with grace and dignity. I do not want Finn to grow up receiving or expecting all kinds of special treatment just because he has Down syndrome. This is a separate issue, in my mind, from making accommodations for him to receive an equal education with his typical peers. Yes, I want to see him fully included in a typical public school so that he can received the same education his brothers and sisters are receiving, and so he can benefit from non-disabled role models, but I don’t want him to be the token disabled kid, included in extracurricular activities as an act of charity.
Whether this kid on the football team should be allowed to continue as a “full-fledged” (ha! he was never really a full-fledged team member, now was he?) team member, I can’t say. It seems to me, from the article, anyway, that the school is between a rock and a hard place, and that it has attempted to handle the situation as sensitively as possible. Part of me thinks, well, yeah, if the kid is still actually enrolled as a high school senior, then the age limit shouldn’t apply. On the other hand, because of his age, he gets to do things – like vote (yes, a person with Down syndrome can vote) – that his underage classmates cannot do. It is a slippery slope when the rules are bent to accommodate people with special needs like this as a matter of charity, and I, for one, am not completely in favor of it. I want my kid to be respected and valued for who he is as a person. When he starts being treated “special,” that’s just another form of discrimination.