Labels

Ben had kind of a rough week. He was pretty much sick with sinus infection, double ear infection, bronchitis, and severe allergy problems for the past 10 days. Things are getting better though, and this morning he requested waffles with raspberries and turkey sausage (still in the frying pan as of that picture).

(And in case you wondered: Yes, he always dresses like that, even when he is home sick, unless he is so sick he cannot get out of bed.)

Ben is the type of person who likes to be neatly dressed, he keeps his room neat, he likes to put one raspberry in each square indent of his waffle, he organizes his lunch the night before school, and he lays his clothes out the night before school too.

He is a neat-nick, you may say, but then again, you may not because this blog post is about labels. Now, I am apt to offend just about everyone equally with this post, so keep in mind, this is my view of labels, not gospel, not THE_WAY_YOU_MUST_THINK, just the way I  like to think about labels.

Many people would say that I have a Down Syndrome child. I prefer not to say that. I have a child who happens to have Down Syndrome. 

Person first -- is my mantra in this case.  

That 'person first' comment usually gets me the response  that that is 'So PC'... i.e. so politically correct. The implication is that as  soon as we label something 'politically correct', we can dismiss it. Anything politically correct is necessarily something silly, over-wrought, over-sensitive, and therefore not something we need to concern ourselves with.

I disagree. Yes, it is true that some politically correct statements and sentiments may be overly sensitive to the point of being ridiculous, but that does not automatically dismiss all politically correct notions. --- For example, if it is politically correct to be kind and considerate of others, then I would proudly call myself politically correct. --- Do I still have a sense of humor? Yes, I hope so.

In the case of Down Syndrome, I know that most people see my son first and foremost, and perhaps exclusively (in some cases) as a 'Down Syndrome child'. ... and THAT is precisely the problem. If all we see is Down Syndrome, we see nothing at all. The label has obscured the person, and none of the uniqueness of Ben shines through.

It is easy to slap labels on us all. Women are moody and touchy-feely, teenagers are grumpy, the terrible twos, short-man syndnrome, and the one I always hear at work girls-are-bad-at-math.  (I dislike ALL of those labels intensely. I have known many men who are just as or MORE moody than women, my teens were not grumpy, I love two year olds and do not find the age terrible, why would we demean men who happen to be short, and worst of all... I WAS A GIRL AND I WAS NEVER BAD AT MATH!!!!!) UGH!!

One woman with a large family that I once met, introduced her tiny four year old daughter to me as, "She is my runt." Sorry, lady, but that one stuck in my mind forever. How would you like to be known as the runt of a litter of six kids.

The problem with labels are

1. they are self-fulfilling and create the problem they seek to identify. Tell your teenagers that they are always grumpy and they are likely to be so.

2. they obscure the person. (I forever remember nothing about that tiny 4 year old than the fact that her mother called her a runt.)

Aftter Ben was born, people were telling me that at least I had 3 healthy normal kids before I had Ben, as if  I had 'one to spare' by having 4, so it's OK Ben has Down's. After all, he is not my only kid, and I have two healthy strong sons before him, so it's good he is a boy, since I had boys to spare. What I particularly don't like about that attitude is that it is all about me and what *I get*, never mind the individual kids and their lives.  

(Kinda the same way that people thought it OK when my first son entered the Navy, since I had one healthy normal son left who was a still civilian,. When both my older healthy sons ended up at the Naval Academy, people thought I had made too much of a sacrifice. After all, I could not possibly spare both to the US Navy.  Again, a very 'me'-centered attitude that assumes that I can spread my kids out sort of evenly as I please. Sacrifice one for the military, one for the church, one to make the money, one to stay close to me at home in Colorado, etc. It is absurd, and it assumes kids are mine to do with as I choose, not persons in their own right who make their own decisions about their futures, one at a time, independently.) 

When we label kids we set expectations for them, and some of those expectations can scar them for life. No, we don't necessarily do so every time we slap a label on someone, but we might.  As parents, we curse and bless with our mouths, and we might to well to think about what we say: This is my messy one, this one is stingy, this one is shy, this one is a picky eater, this one is my runt, she is my funny looking one, that's my fat one, this one is the brain of the family, and that one is our musical child.

I wonder if our need to label is caused by our own desire for order in sorting out this chaotic universe. If I decide that Joanne is just messy, then I understand her and accept that. Or do I? Do I more so resent the fact and bringing it up and slapping the label on allows me to vent it on occasion. At any rate, I have her figured out. Next. 

Labels also have the aspect that if they stick, they can become a trap that a kid may not be able to move beyond. Being stubborn, fat, messy, a picky eater, a runt, the asthmatic one, ... if that stays with a kid, he may just accept that, and never try to move beyond it. --- And truly, some things kids don't outgrow. For example, being short, as I have always been, can be an issue if it is constantly pointed out. I cannot really outlive being short, but the question is, even so, is that the one and only thing I want people to remember about me. 

Heck, even if  my label is something ostensibly 'good' like being the brain of the family, it can be hurtful. Not only is the brain label an impossible legacy to live up to, but it also diminishes all the other kids in the famkily, almost as if they now have to accept that the position 'brain' has been taken, so they need no longer vie for intellectual achievements.

At any rate, for Down's labels could be of the nature of 

"They are always so happy"

"They have the stubborn gene associated with that third chromosome"

And then one that was too often applied in this family, "He doesn't eat, he just collects food on his plate." Or, "He is so generous."

Let me take those in order:

1. Happy

No, Ben is not always so happy. Most adolscents with Down's struggle with depression because of social isolation, and Ben is no exception. He THINKS he needs to be happy and when he is sad, he tends to answer that he is happy because he conceptually struggles to deal with negative emotions, almost as if he thinks if he just stays happy all will be well, but the moment he admits that he is not happy, his world will crumble. No, he is not always happy and contented. -- In public, yes, he is outgoing, friendly and appears happy because he is (if I may say so myself) well raised, polite, and he does not vent his emotions in public. (for better or for worse.)

2. Stubborn

This one really gets my ire. Kids with Down's are no more stubborn than anyone else in the world. What they are... most of the time... is compliant, easy going, and you can (if you are the type) manipulate them into agreeing to many things, including giving you their last dollar or their last piece of candy,  or their new iPod. Now, once in a while you cross a boundary with a person with Down's and then he or she will dig his or her heels in and say no. Is that stubborn? Well, it appears so to us, perhaps, because the person will not budge an inch. The person with Down Syndrome, however, does not have the verbal skills to articulate precisely why he or she will not do or say whatever it is you desire him or her to do or say, and so the person (you or I) who did not get what (you or I) wanted, labels the person with Down's stubborn. I am  sorry but not only is that a selfish cop out, it is also a refusal to respect another person's no. If a person tells you no, odds are that the person has a reason, and slapping a label on the person is a means of disrespecting his or her refusal of your (or my) request. Shame on us!!  I suppose any person who does not do what I want him or her to do is 'stubborn'???  :P

3. Collector of food

The label in our family was 'food collector' for Ben. I fought that label for years. Yes, he piles a lot on his plate, yes, he does not eat it all. But collector is not the point. Not only is it hurtful to make this comment, half in jest, half in resentment and irritation, it is inaccurate. Ben likes to pile food, which is not the same as liking to collect it. He likes to pour and scoop, and he does not have a good sense of how much to take. Not that he is greedy and wants to leave none for others. He would give it all away a second later, if asked for it. He simply does not have the ability to combine the thoughts of 'how much can I really eat' with the thought of 'is there going to be anything left for anyone else' with the thought of 'am I being modest and selfless here'. His taking and taking is a quality of living in the moment and loving what he is doing... and it has nothing to do with collection, selfishness, or greed.

4. Generous

Yes, I do believe that most of the time Ben acts very generously, ready to give the shirt off his back if someone asks for it. This is a quality and a vice at the same time. Ben has little sense of planning for the future (excepting in the rote behaviors I explained above where he makes his school lunch the night before and lays out his clothes the night before). But he does not have the ability to think, I have $30, I need $10 for bowling and a snack on Friday, I need $10 for a present for Kirsten's birthday, and that leaves me with $10. I think I will save it for whatever might come up next. Such elaborate planning is beyond a person with an IQ of 45.  If you are near him and you need $10 and you ask him for his $10, he will give it to you, plain and simple. He has never been in need of $10 and so it does not occur to him not to give it to you if you need it. Is that a virtue? I suppose it is a virtue of a mind that is not too complex, but it is also a vice. I cannot let him take his iPad in public because my guess is it would disappear somewhere, as did the old cell phone he was given that he took to school for a season.

So, to conclude on labels. As you might have suspected, I don't like them. That is not to say that I don't use them too on occasion, but persistent, emotionally laden labels that obscure the personhood, I find dangerous. Hence, my son is not a Down Syndrome person, but a person... who happens to have Down's, the same way I am a person, who happens to be female, and who happens to have a bunch of other labels that could be pasted on (mom, author, perfectionist [some say], professor, short, blonde, knitter, cat-lover). Any one label surely cannot sum up a person. Not even a collection of labels can. So let's treat them like sugar or medicine, and use them sparingly. 

And if you disagree, that is fine. And if you think in horror that you once said to someone in my hearing that I had a Down Syndrome son, please do not sweat it. I have heard it a million times, and I don't knee jerk and break out in hives. It is not that big of a deal. It is not how I prefer to introduce him or speak of him, but Down Syndrome is a part of his life, not the defining part, but definitely an influential part.

Empty Chairs and Empty Tables

:) OK, that sounds like a bit of a down title.  And perhaps it is.

The past couple of months I have had the opportunity to talk to a couple of different groups about teens with developmental disabilities becoming adults. I am by no means an expert. This is on the job training for me, and the process has been eye opening in many ways. In one group I accidentally brought some people to tears, which was far from my intent.. but I digress. Let me get back to my title.

Developmentally disabled teens experience the empty chairs and empty tables a lot.  If you don't know the song, here is a link Empty Chairs and Empty Tables from the movie Les Miserables.  In the movie, a young man laments his fallen comrades. In my analogy, I am talking about young men and women who grow up with siblings and friends, and eventually the friends and siblings move on, grow up, and they leave behind empty chairs and tables at home, at school, at church, or anywhere else where the young person with disabilities lives.

In the case of my son Ben all three of his older siblings have moved up, and only Ben is left at home. He often talks about his siblings, of late in particular of his sister, who was the last one to leave home.

A couple of weeks ago, I mentioned in some context a girlfriend of one of his brothers (because I am knitting a pair of socks for her, and one person asked me about the socks). Ben had a violent reaction, "NO," he said. "He does NOT have a girlfriend!!"  I would concur that Ben has never met this 'significant other' so to Ben, she does not exist, but more to the point, Ben knows what significant others mean, he realizes how his family has scattered over the past 5 years, and he knows that having a girlfriend will add to that phenomenon. But also, Ben goes to high school, and what he sees in public high school is lots of people who are attached in different ways. I might add, that many young people at high schools in America are not particularly subtle or modest about their relationships, in fact, I would say that relationships (however unhealthy some of them are) are a mark of status in a high school. Ben may not fully understand the nature of these relationships or what they mean, but what he does know is that he does not have a girlfriend, and that the few times he has asserted to a girl that she is his girlfriend, he has been met with gentle (and sometimes not so gentle) rejections of his assertions.  He would like to have a girlfriend, simply because it is what most other people have... and perhaps also because he has the same needs and longings as others have, and would like to be close to someone--- to belong to someone, to have exclusive 'rights' to someone, to look important and valuable---just like everyone else.

"Just like everyone else" --- I think this is the key phrase. It is so difficult to be different. We all know that from minor issues we have suffered in life where we were not just like everyone else. Could be physical, could be emotional, could be the clothes our parents allowed us to wear. The longing to fit in, belong, and be accepted is strong in all of us, sometimes even to the point where we join the wrong peer groups just to belong somewhere.

Ben's situation is so controlled for the most part, he is never likely to end up in the wrong peer group. He is monitored both at home and at school to the point where he is not likely to be assimilated in groups that would worry me. What does concern me is the difficulty he has in hanging onto friends. I remember when we first came to Colorado and he was 7. He instantly found some really really good friends. They ran and laughed together, they swang on the swing set, and I think this euphoria lasted about 6 months, perhaps a bit longer. Then the 'normal' kids discovered precisely how much there was to Ben, and they started making fun of his peculiar speech. They would get together with him on the swing set, and then whisper to each other, "Let's run away from Ben", and they would lure him  far off somewhere on the grounds and ditch him. They thought it was funny, and I don't totally fault them in that they were more or less innocently exploring their interactions with each other and with Ben, and not until an adult makes it clear how that feels can we really expect them to realize how wrong it is.

This, you may say, happened to my child too, and no doubt many of our kids (special needs or not)  have experienced this. The problem for Ben is that it happens again and again and again and again. He is mentally and socially about 6, intellectually about 8, and expressive language-wise about 2. He hooks up with kids readily because he is friendly, he is willing to do what others want him to do, and many kids who have no friends will end up seeing him about and connecting with him for a while. The problem is that most of those kids are yearning to be in an inner circle somewhere where a strong-armed leadership type of kid rules, but they can't quite get in at this point. Ben is second best, but as soon as the opening to the inner circle appears, Ben gets 'trashed', sometimes brutally by the inner circle being out and out mean to Ben, most of the time just by neglect. -- Ben will cheerfully approach the friend (usually someone around 6 or 7) and the kid just shrugs him off. He has better friends now, and there is no longer a 'need' for Ben.

Public schools try to include kids with special needs by generating circles of friends, peers who volunteer to be friends for the day, or lunch buddies or something once a week. It gives our children with special needs a way of being connected.

I recently talked to our church about this, and we are in the process of setting up some sort of "Ben's Buddies" system where different teen boys volunteer to be Ben's pal for the day on a rotating basis, like once a month (it's only about 30 minutes after the service before Sunday School). It involves eating a bagel with him, and being his pal on the playground, playing ball or frisbee or something.

No, I don't totally think there is a cure for the loneliness that many children feel. Many 'normal' kids feel ostracized and different in minute ways that become significant, even defining for them. Developmentally disabled kids feel this too---and I guess this is the gist of my post. They may not have the IQ of an Einstein, but the irony is that nobody is so 'stupid' that they don't know they are 'stupid'. We know when we are being laughed at, even when we don't get the joke. We know when we are unwanted. Person's with Down's are IQ wise somewhere between 40 and 65, but in terms of empathy (emotionally perception) they are quite high on the spectrum, perhaps higher than some of us.

All that being said, as I have mentioned before, if you meet a young adult with Down's, he or she asks very litte. Silent companionship is fine. Just sitting down with him or her with a cup of tea, or throwing a ball is all they ask. I often wonder, when I pick up my son... what communication is enough. After all, if I were in the car with my daughter or one of my older sons, we would be discussing everything and anything. But with Ben, I often just drive the car, put on some classical music (which he loves to conduct to), and I occasionally squeeze his hand. I ask 'closed-ended' questions that he can answer yes or no, so he can actually answer, rather than open ended questions where he stutters and gets frustrated because he cannot answer. -- And we have a blissful quiet but satisfying time together WITHOUT discussing ObamaCare or the War in Syria.

He also loves calendars and he loves knowing what comes next, so often we talk about tomorrow, and I will mention one thing we're doing and he will ask "what next?" and after I mention it, he will again ask "what next?", which gives him a sense that he too can direct the conversation for a while. I also ask him what he wants for dinner (I know, it seems a small thing) and he will mention very interesting foods, and if at all possible, I will get them for him... or if I can't I will mention what we have and he will choose. He loves to help me cook (in fact, we're off to make oatmeal raisin cookies in just a minute here), and I try to let him do as much of the cooking as he can. It is a wonderful way of interacting... but let me say this. Our world is so busy interacting intellectually and verbally, it is quite a transition for me to learn to interact emphatically. Point being, the world is the world, and neither he, nor I, can change it, and talking isn't going to change it. Instead, he and I interact in prayer together in the morning, doing yoga for exercise last thing before bed. We do our daily household chores as a team, always together (I rarely send him off to do things on his own), and through those tasks we affirm each other, we create a pleasant atmosphere to live in, and we affirm that life is worth living.

The rest of the world talks a lot, and Ben can't join that. The rest of the world often plays, and Ben COULD join that if the games were not too rough or too difficult. We play games at his level and we play ball at his level, and my hope and goal is that in his social interactions, I can help some of his peers to discover how to connect with this unique, wonderful, compassionate and fun person named Ben, so their lives can be enriched by all that he has to offer, and that his loneliness in the process may be alleviated a touch in the process.

Stereotypes

Ok, so I have pondered a lot about stereotypes and Down syndrome and how hard it is not to be trapped in those stereotypes.

I remember a few years back standing in line to get into the Denver Zoo. My son Ben (who happens to have Down syndrome) was standing next to me. He was probably 11 or so. In front of us was a lady with two kids somewhere between the ages of 3 and 5. The 5 year old boy kept staring at my son (probably because of his repaired cleft lip, but possibly also because kids with Down's look different). Eventually the boy moved back towards his mom, who sheltered him with her arms and said, "Don't worry; I won't let him hurt you".

Another event... one neighbor, when Ben was first born and we knew he had Down's sought to comfort me with the fact that to her, Ben didn't look like he had Down syndrome at all... as if 'looking or not looking' like Down's would matter.

Another scenario, Ben was born with cleft lip and palate, and because of his heart condition (a typical Down Syndrome heart), his cleft lip could not repaired surgically till he was about 2, whereas most infants with cleft lip get it repaired within the first two months of life. During Ben's first year, at one point, we were at the library with him in his car seat inside the stroller. He was quite a sight because he had his cleft lip (a unilateral cleft on the left side, going all the way into the nostril) as well as a feeding tube coming out his other nostril, and tape to keep his feeding tube in place. (He was wont to pull it out otherwise). Well, this lady came running up with a smile, "I gotta see the baby! I gotta see the baby!" and then when she got up to the car seat and peeked in, she turned to me and grimaced, "oooh!! What's wrong with him?" 

An elderly family member was so nervous she cracked an ugly baby joke when she first met him. 

But beyond appearances, I have also run into out and out stereotypes, in particular in the dental field, that we won't take your son as a patient because patients with Down syndrome bite. This from both orthodontists and regular dentists. I understand the stereotype. If their experience is that this is the case for the most part, and somehow they don't relish being bitten, naturally they prefer not to deal with patients who have Down's. However, in the particular case of my son, he is extremely cooperative in the dental chair, more so than most typical kids, and he does not bite. In fact, he LOVES having his teeth cleaned... LOVES IT!!! And when a dentist finally concedes to take him as a patient (this has been an issue), the comment usually is, WOW, he is more cooperative than some of my adult patients.

But my point is not to catalogue wrongs. Many of these incidents are actually funny when I reflect back, like one little girl in public who saw Ben in a park in his stroller, ran back to her mother, whispered and pointed , and then the mother pretended to casually stroll by us to sneak a peek, as if she didn't at all mean to look.  There are many silly stories like that.

As I said, this is not a litany of complaints. It's more of an illustration of how some people respond to a situation where they do not know what to do or say, or where people react to my son with their own prejudices on the forefront, rather than reacting to my son as a human being who may or may not fit their stereo typical expectations.

A relative of mine years ago described how he and his wife were visiting some historic site and a school bus of mentally handicapped teens showed up at the site and swarmed all over it. At the time, this particular relative expressed that they felt awkward with all the handicapped children around, not because they objected to them, but because they did not in any way know how to relate to some of these students and their unusual behaviors.

His story came before Ben's birth, but it always struck me as the most honest of reactions. He was not equipped by education, experience, or even the common sense to know what to do or say, and in his case, he did nothing. 

Most people DO something. They either react nervously, or they act out of curiosity. Their emotional apparatus seems to require some outlet of whatever emotional energy is pent up, and interestingly enough, it is up to those of us who have the children with special needs to normalize the situation by including the confused or emotionally upset, or curious by stander in the life of our children in such a way that our children do not suffer or feel stigmatized by the encounter.

The few times in public (and it happens to this day) where someone, adult or child, asks me "What's wrong with him?" I always say, "There is nothing wrong with him. This is Ben, and I am Lene. What's your name?"

When he was little in a stroller, I always made a point of saying hello to people who clandestinely sneaked a peek... this was for the sake of my three other kids who were 6, 3, and 18 months old. 

In fact, my daughter tells me that I so normalized Ben and Ben's condition to her that she was near  10 before she realized that he was 'different' in a lot of respects. (I did not mean to do that in the sense that I was always open about the issues we faced with Ben, but growing up with him, she just assumed that that was normal.)

To round this out... I think it's difficult to meet people who are different on their own terms. And I think it's more difficult with people who have special needs. And I think it's more difficult the older kids with Down's get. Four year olds are adorable... and four year olds with Down's no less.

When a person gets into his or her teens and is approaching adulthood, there is a pseudo-sexual switch that takes place, and we as humans start evaluating people on good looking or not good looking, and to some extent that subconsciously involves greater or lesser degrees of sexual attraction.

Young persons with disabilities are human beings and therefore sexual just like any other human being. But one major hurdle that our society suffers from is that it has no conceptual apparatus for dealing with sexuality in adolescents and adults who are mentally handicapped. We have no framework to put it in, it falls outside our own experience of attraction, because it involves persons with mental ages more so approximating that of children. And so while it is difficult conceptually to learn to engage children with mental handicaps at any age, it gets harder as they grow, and as a result we often blunder or emote when encountering such individuals.

I shall expand on this another day, I have a conference tomorrow to go to and a son to put to bed.

:)