Continued Stereotypes of Down Syndrome

Ok, so I am continuing my post on stereotypes and Down Syndrome, and a couple of people (one on Facebook, and some in email) said they were looking forward to my continuation, which frankly just made me nervous. I am not sure I have anything profound to say on this. This blog is somewhat 'therapeutic' for me, in the sense that I put my thoughts down on 'paper' and it helps me solidify what I think and how I deal with the stresses and challenges of being the parent of a child (soon adult) with Down's.

But to continue the thought of people's reactions to our children with disabilities as well as people's stereotypes of our children....

.... well, as I mentioned last time, I think it is critical to view most people not as rude and mean, but as unequipped to know how to respond in a way that is affirming to the person with Down's and to his or her family members.

When I was in graduate school, I went to meet a Muslim student with a bunch of his friends at his apartment (along with a bunch of my friends-- we were all going to be cross cultural pals). I entered the apartment, reached out my hand, and the first thing this man said to me was, "I don't shake hands with women."  (A great start to a very brief relationship :P) ...

So many of our encounters with other cultures begin and end like that. How often have I been told by Danes (my native compatriots) that Americans are SO RUDE. They don't wait for the host to raise his glass and say cheers before they begin sipping the wine at a dinner, they don't bring a gift to the hostess when invited for dinner, etc.--- basically, they don't know all the European rules that one just knows when one is born and raised there. (And incidentally, after almost 30 years in the US, I forget more and more of those rules, and find out the hard way when associating with compatriots or family from Denmark).

My point is... Americans are not rude. Americans are just as well meaning and kind and friendly as anyone else, but they never had a chance to study and internalize the rule book, and it is absurd for any of us to impose expecations on other people that they have no earthly chance of meeting.

So, back to special needs. My son with Down's is kind and well meaning, but not particular mature for 17, and certainly he completely lacks in judgment in many areas. For example, he has no thought for how much icecream he takes. He just keeps piling it in his bowl until it is full... and it makes him look greedy. At school, he tends to hoard the cups from the cafeteria and brings home a stash in his backpack (we're in the process of returning them). He nabs things from other people's rooms when he decides he likes them, and at church when we have a brunch after services, he piles his plate with more donuts than he can possibly eat. --- I used to get many complaints from church, as I mentioned in another blog, "here is Ben's plate, he is not eating any more, what shall I do with this food?".  But it stopped when I sat a couple of the ladies down and explained that Ben's ability to judge about how many donuts to take is non-existent and that it is not likely to ever change, and that while I can breathe down his neck every minute, I can't both sing the venerational hymns in the choir after the service and be in line with Ben for the donuts. -- Ben has now been excused, at church, as a kid who does what he can, but who generally takes too many donuts. (I am relieved!) --- But the list of things that he does like that is enormously long, and my ability to check and prevent all of them is limited.

We have a check list in the morning (my mental check list) of what I need to remember to do and oversee for Ben in order to successfully get out the door in time to make the school bus and in time for me to get to work.

1. Check his clothes for stains and spills (he has taken off on occasion with yesterday's mustard and catsup stains running down both shirt and pants... doesn't bother him).
2. Check propriety of clothing for weather (shorts and sandals in snow, does not bother him).
3. Check propriety of clothing for occasion... he has gone to school in pjs, surgical scrubs, pirate costume, as well as one of his sister's pink shirts more than once.  (In fact, I still remember the day that Nick and Alex Ben's older brothers just about rolled on the floor in laughter in response to Kirsten's scream across the house, "NO BEN!! That is MY underwear. You can't wear that!!".
4. Check his lunch. He likes to make his own lunch out of leftovers from the fridge, but tortilla chips with catsup, covered in apple sauce, does not a complete lunch make.
5. Check his back pack that he has not taken something from someone's room that is not his, or something that he is not allowed to take to school (one day he acquired my new iPad and decided it should go to school. Last week he took my graphing calculator).
6. check mouth and cheeks... is the oatmeal from breakfast still hanging out in corners and crevices.
7. Check glasses for transparency.... they vigorously partake in consuming Ben's breakfast EVERY MORNING.
6. Hearing aids --- do they work, do they need cleaning, are batteries dead.
7. Etc for snow days, and .... miscellaneous things that school requires on different days.

I fail miserably at some of the above, and we often get a call from school about something I missed. And going out in the community, after school, grovery schooping, I keep forgetting to check Ben until I turn around in the car to make sure he is buckled, and that is when I see the chocolate veneer around his mouth, or the crusted tomato soup on his tie (Yes, he wears button up shirt and tie every day... his choice).

Many of these things are society's expectation of the hygiene and behavior of a child aged 10 and up, and I understand and I do my best to model the right routine and behavior so my son meets expectations and isn't a complete weirdo, but rushed moments, tired moments, ... it's just life, and people in the community, some, point it out, others just stare, and most, thankfully, are blessed kind thoughtful people who just take him as he comes, regardless of how many layers of food he has embalmed his shirt and pants in.

On the other hand, to come full circle, 'society' (to use a Jane Austen'ish term) is not equipped to understand what it is like to raise such a child, nor do they know the efforts parents put into helping their kids appear reasonably presentable and clean... all they see is a filthy shirt that they would NEVER have let their toddlers appear in... and given their only experience (likely one point five toddlers over a 4 year span) they don't quite understand, either why my son is such a slob, or why I don't seem to give a ¤#%¤&%¤ about it.

It's OK. The random judgment of the vast gray masses that i will never see again don't matter that much to me. Those who know us, may understand (or not) the main thing to me is that I try to do as much as I can for all of my 4 kids (3 of whom are grown) to help them be presentable to society, to not be a nuisance, and to fit in as best they choose to... and the most I can do for Ben is to fix appearances a little when I remember and not to worry about the rest because frankly, when it is all said and done, I don't want him to remember me as the person who could do nothing but correct his appearance and constantly berate his lack of ability to exercise proper hygiene, and this for a bunch of people out there whom I don't know and whom I will likely never see again.

:) So in the words of Farragout: "Damn the torpedoes. Full speed ahead!!"

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.

:)