Monday, September 15, 2008

A Little Chat

"Are you funny?" she asked me with a degree of seriousness that made the question seem like scientific enquiry. She was as cute as it's possible for a little girl to be, she had leveled her gaze at me the moment she'd seen me. I was sitting outside the apartment building while Joe was getting the car. She and her brother had been staying with people in the building for the weekend and her parents had just arrived to pick them up. Her mother was sitting on the bench beside me, keeping an eye on her while chatting with her friend from the building, her father was off chasing after her brother who was suprisingly light of foot.

When she asked me if I was funny, I didn't know how to take it. That word means so many different things. So I simply said, "What do you mean?" She clarified by saying, "There is a boy at school who is in a chair like that. He's really funny. Are you funny too?" Hmmmmm, this is kind of cool. She's experienced a kid at school with a disability, found that he had a quality she liked and now she wanted to know if that was an individual trait or a group trait. This integration thing works the way it's supposed to work I'd guess.

"Sometimes I can be funny," I said.

"There's another boy in class and he's different too."


"He looks like this..." Then she did things with her eyes and ears and I was able to guess ... "You mean he has Down Syndrome," I said.

Over the next couple of minutes I learn that she and the others haven't been told about this boy's disability. They've only been told that he's 'just like them' and that they aren't supposed to notice. This has made her both highly curious and highly suspicious of him. What could be so wrong with a kid that you couldn't talk about it. She's decided that its probably best to just stay away from him even though he seems nice.

I told her that all Down Syndrome meant was that he would have more difficulty learning. That right now it doesn't mean so much but as he gets older it will mean a little more. She wanted to know why they couldn't talk about it, I told her I didn't know, but there was no shame in having Down Syndrome and that she should give him chance.

"Do you think I should tell the teacher?" she asked.

"I think you should tell the teacher that being different is ok and that everyone should be proud of who they are, even the boy you don't talk about."

Just as we were finishing up she was called away by her mother, she smiled at me, "You really aren't very funny."

Everyone's a critic.

There is much I'd like to say about a little boy being placed into that situation. A disability denied. But I'm going to restrain myself and listen to you instead.


Glee said...

G'day Dave,

I denied, well, played down really, my disability for my whole life while I was a wobbly walker and just "kept up" with my abloid friends. Shockingly enough, even though I had been "friends" with some for a couple of decades I found they didn't come my way when I couldn't go their way anymore. What I mean is their houses had steps and inaccessible toilets but they didn't then visit me when I couldn't visit them anymore. Guess who ain't my "friends" anymore.

I don't play down my limitations anymore. You talked about what your mum did to you a couple of blogs ago. My mum did similar but in a mild trying to be helpful way. But it was she that taught me to minimise how I affect others. After 6 years of psychotherapy I learned to push the "mum monkey" off my shoulder when it started whispering that sort of shit in my ear. You might like to try it. I just say "Off you go" to it (in my head) and give a little shrug and flick sideways with my head. Then I carry on sans the bullshit.


Anonymous said...

I think that that is mostly the biggest problem in society. Children are innocent and will naturally ask questions. Those questions should be answered in the most honest possible way. In doing so, we are creating a generation with compassion for other's difficulties. We need to change the perception that disability is something to be ashamed of. That teacher had a very good opportunity to teach those children about Down syndrome and create an awareness that everyone is not able to do everyting. And that that is ok too. She has a wonderful opportunity to make that little boy feel welcome and teach the rest of the kids compassion. I hope the little girl goes back to school with that message.

Penny L. Richards said...

In my son's first early intervention program, there was a lot of openness--I knew the basic diagnosis for most of the kids there, and it felt so accepting, I got to know the other families and felt like part of a community. And I learned how to talk about my son's stuff in an honest, positive way, because the teachers modeled that so well.

We moved. The next place would never, ever discuss such matters, even when asked, even in the vaguest terms. Message received: this is information I'm supposed to be completely secretive about, and it's only for the "experts" to know.

Good thing I already knew better.

FAB said...

It's as though we are afraid people's feelings will be hurt if we dance around the obvious, the whole time the problem is that we see the obvious as a "problem" when it isn't! So we teach kids not to talk about, not to address it, "you're just the same as all othe kids," Meanwhile all the other kids are afraid to even look at you because they become afraid of what they don't know, and as parents, often instead of answering questions, we shush our kids tell them to be polite and not say anything.

I learned long ago that this doesn't work, but not until my son taught me that. I used to do this to him. WHen he was first diagnosed with early onset bipolar disorder, I warned him not to tell the other kids. I warned that they might think bad things, or thier parents would because there is such a stigma attached to mental illness. I warned that he shouldn't be judged because of that and praised him for being such a wonderful little boy...but what was I really saying to him? Worse yet, I was worried about what people would think of me and our family. There is such a backlash against the medical community and families of kids with mental health disorders. I was riddled with shame, when none of us had anything to feel shameful about!

Needless to say, we don't do this anymore. My son can and does tell whomever he wants, he also tells them he has sexy hair and his mom's a big nerd and his sister drives him up the wall...

Anonymous said...

As someone who grew up with alopecia, I found I was teased *more* in environments where my baldness (and the fact that I wore a wig) was treated with secrecy. Whereas, if I discussed it with my peers openly, then there was no teasing. Other people might still be uncomfortable with it or not know what to say or how to respond, but at least there wouldn't be any teasing, or any behind-my-back rumors that I must clearly have cancer and was about to die.

I think the summer camps I went to where they tried to keep information about my baldness and my wig confidential from the other participants had the best of intentions at heart, but in hindsight I wish they had discussed with me the option of simply allowing me to announce and explain my alopecia at the start of the program instead of pretending that it was even POSSIBLE to keep that kind of thing a secret for long, in an environment where I would eventually need to take my wig off to sleep! I think the secrecy just created more problems than it prevented.

Also, this kind of secrecy is apparently very commonplace with many hard of hearing kids. Parents sometimes assume that bringing "attention" to the hearing problem will somehow automatically lead the child to underestimate themselves. So they think the answer is to pretend that the child is entirely "normal." So even the hard of hearing child might have no clue that there is anything wrong with the way they hear until they're much older. And other people in their lives know even less.

But guess what? Sooner or later they flunk normalacy: someone calls their name, and they don't respond. Or someone tells them one thing, and they understand another. Then everyone reacts with incredulity when the mis-match in comprehension becomes obvious: How could you not have understood when I explained it so clearly?

So the hard of hearing child grows up assuming that they must be really stupid, or confused, or inattentive, or too lazy to listen. They grow up convinced that they must surely be able to do better if they just tried. And if they haven't succeeded yet, then that must mean they aren't trying hard enough. So they keep trying harder and harder, then hating themselves because it still just isn't enough.

This is the destruction that the wrong kind of secrecy can bring. Better to be open about the disability; explain clearly what kind of limitations it can create; how to work around those limitations; what kind of strengths can come with the disability; and what kind of skills are NOT affected by the disability.

If done right, they'll grow up with very high expectations for themselves (I was, as a deaf girl raised by parents who discussed my deafness with complete openness). I think, if anything, their self expectations will end up much *higher* than without the secrecy, because then they'll understand better exactly what causes the limitations and how to work around them.

As a general rule, I tend to believe that openness and honesty is best. There is no truth so harsh that it isn't dealt with more effectively, and in a more healthy way, out in the open. Secrets tend to reinforce, or even create, stigma and misunderstanding.

Shan said...

I think this is a case of adult discomfort being projected onto children. It's like when little kids ask each other "Are you a boy or a girl?" and it's totally fine. The older you get, the more society imprints, and the less fine it is.

Anonymous said...

I have a young daughter with Down syndrome and I have a slightly different perspective on why people may not want to talk about it. I agree with all the comments about why it's best to be open and honest about disabilities, including Down syndrome. But I find that I sometimes shy away from specifically talking about DS in the context of my daughter.

There are a couple of reasons for this. First, my daughter is, of course, much more than Down syndrome. But if I explain her special shoes, or speech delay or the shape of her face as a result of Down syndrome, it seems at some level to deny that she's a person apart from that. Also, attitudes about Down syndrome have changed significantly over the last few decades - and hopefully are continuing to change. Even though it's obvious that she has Down syndrome (and not admitting talking about it obviously doesn't hide that she has DS), there's a part of me that's really scared that once we rely on labels, the old stereotypes will be applied to my daughter. I want people to expect a lot from her - as much as other kids as long as that's appropriate - rather than writing her off because she has Down syndrome.

I guess it comes down to the fact that labels feel so one dimensional. I want my daughter to be treated as a complete, complex, multi-dimensional person. Not just as the girl who has Down syndrome.

I'm curious what other's who read this post think about this.

Kei said...

In my son's school there has been no avoidance in discussing his disability. To the kids, he is simply, William. Since preschool, the kids have learned sign language with Signing Time, so they could communicate better with William. The kids have been taught different ways of learning things in addition to the usual way because the teachers thought that the ways that are helping William learn can help the other kids in the class as well. In kindergarten the teacher explained some of what makes William different, but reiterated that he is more like them than he is different, and that he may learn a little more slowly.

So often on the Down syndrome boards I belong to, parents talk of writing a letter to the parents of the students, or making a book to share with them about their child w/Down syndrome. What the child likes, dislikes, the commonalities they share.

Perhaps in the classroom of the little girl you met, the teacher is unsure how much the parents of the little boy would like the teacher to share about Down syndrome. Or perhaps the teacher was asked to downplay it.

Anonymous said...

susan, I think there is a big difference between the kind of behavior involved in the game some parents and teachers play of, "Let's pretend that we're all exactly the same even though we're very obviously NOT all the same" and the kind of thing you're talking about, which sounds more like a moment-to-moment judgement call, in which you decide, "No, I'm not hiding the Downs Syndrome, but is it really relevant right this second to this other thing, or is it a minor detail that I can pass over just because there's something else more relevant to say?"

Those moment-to-moment judgment calls are often murkier, with more room for disagreement. But if you get it wrong once in a while, then there's more chance to fix it because the way you handle these more minor details have more to do with the *degree* to which you highlight or explain Down's Syndrome and the degree to which other things are given more precedence.

Anonymous said...

My little girl isn't in school yet, so I am just faced with this issue in the community. The quizzical looks, and that feeling in the air when I can tell someone is wondering, is trying to figure it out, is afraid to ask. And so I usually just casually insert something into the conversation about Down syndrome, and let the conversation go back to whatever it was really about.

I don't do this because I value the label, or because I want to give them space to latch on to the label. Instead, I guess I figure that if I drop it in as a normal, non-traumatizing part of life, just another casual aspect of my curly haired, gregarious two-year-old, I am sort of advocating on the sly. Giving them a chance to see that down syndrome hasn't ruined my life, doesn't rule who my daughter is.

This tends to put people at ease enough that if they have any questions about ds they ask them. I would WAY rather have the opportunity to answer questions in person than have the curious go home and google for lord knows what kind of information.

I have some time before my girl is in school, but I would hope that the teachers would handle the situation with similar casualness and delicacy, not making an issue of it when it isn't one for the kids in the class, but watching out for moments when some sort of explanation might clear the air.

Kids are aware of so much more than we sometimes give them credit for. It is our job to give them enough info to sort out the mysteries.

dlw920 said...

Reminds me of when my ds was a little guy and went to a day care run by a local Cerebral Palsy agency. Only a some of the kids had disabilities the rest where kids that lived in the neighborhood or whose parents worked there. One of his friends Seth was the son of a woman who worked in another part of the agency and whose husband worked with me at still another program. One day their son came home and said at dinner that my ds was his best friend and he wanted him to come over to play. He further added that ds liked to throw toys some times and that was okay with him and that he would throw them with him if he wanted. Ds has Down Syndrome and Autism and 14 years later that story still makes me cry. You can't get better friends then that.

Here's wishing all of us have friends like Seth in our lives.

Anonymous said...

I think that by hiding the truth about whatever differences we have only encourages feelings of shame. It makes the child who has the differences (and don't we all have them?) think this is so bad it can't even be talked about. If you think your kid doesn't pick up on this you are wrong. Kids are pretty sharp and yes, that includes those children with learning challenges. I know these things because I have observed my daughter for twenty-nine years.

rickismom said...

When Ricki was in play group for two year olds, some of them picked up. Usually until about 5, kids accept differences as just that, and if treated matter-of-fact (NOT avoided if the topic arrises, I don't think you need an "Intro".
From about the age of first grade, people "classify" others (by race, etc.), and it is imparitive for the matter to be brought up.

ntmjbmom said...

I, too, have a son with early onset bipolar.
It's such a balancing act, for me, of keeping his "private info private" and yet not playing into the whole stigma that mh diagnosis have.
He looks "normal" to the outside world, and doesn't have the identifying characteristics of a disability as my daughter did with Down Syndrome, or my son with CP..but when people see him acting oddly or acting out, they assume it's poor parenting or that my son is a class A jerk.
He's so self-conscious, as all 13 year olds tend to be, and doesn't want everyone knowing he takes med and has's so hard to know how to handle it.
I generally write a letter, at the beginning of the school year, to his teachers to let them know the situation and of his IEP..but his general classmates are not aware.

What to do?!

I'm not sure how best to handle it sometimes..sometimes I want to wear a sign around my neck, when he is going through a bad time that says, "Stop child has mental health issues and is going through a meds adjustment". Just to stop the condemning stares.

I think people that try to act as though my other child that has disabilities (that are obvious) is "just like the other kids" is they are trying to be "nice" and tell their kids that he is just like other kids underneath it all..but it does him and their children a disservice by not being up front with what is going on and answering their honest questions with more candidness.

I know a lot has been said about the "R" word, but I've heard people refer to "bad" people as "boy he is mentally ill" and that is hard to swallow. Yes, many people that act out may have some mental health issues, but it comes off more as a slam. Like it's wrong and bad to have a mental health dx.

so the stigma lives on.

That was a bit of a ramble,


FAB said...

Thank you so much! your sentiments are so similar to the situations faced within our family. It was nice to hear someone else's perspective, I tried to visit your blog, but you don't have one, so I am leaving this comment here with the hope that you will see it.
Your comment meant a lot to me!

Ettina said...

I think there's a bit of a difference between talking more generally about the disability a child has and giving the specific 'label'. I think it's important, if the subject comes up, to explain features of the disability (for example: 'she learns slowly' for a DS child, or 'he has a lot of really strong feelings that he can't control' for a bipolar child), and not doing that causes problems, but you don't necessarily need to say what their actual diagnosis is.
For example, I often say say 'I have a poor sense of time', 'I am a picky eater', 'I have unusually sensitive hearing', etc if it becomes relevant, just because if I didn't say that my needs would not be met or I would be considered rude or whatever. I feel like I should explain these things somewhat. But I only tell them I'm autistic if I feel like it.
Now, in telling the disabled child, I think it's important to give them a name for their difference, because it makes the idea that they aren't the only one more tangible. And if they want to tell others what their diagnosis is, they can. But the other children, and adults who aren't actually in a caregiving role, don't need to know their diagnosis (caregivers such as teachers usually do need to know).