Judgment

Don't judge, lest you be judged. 

Perhaps that is what my title inspires you to think. Perhaps not.  

This is a blog about special needs, and it is in that light that I write about judgment. 

We all know that my judgment about what it is right for my child to do and how much risk he is allowed to assume and how soon he may mow the grass in the backyard on his own, is not going to be yours. Thank God for that! I am free, and therefore I am free to judge myself, my own actions, and my future plans.

What I am talking about in this blog is two aspects of judgment: 

1. the judgment that others pass on persons with special needs 

2. the judgment that persons with developmental disabilities have (or as is often the case, do not have).

Judgment, however bad a rep it gets in society when misapplied, is an essential skill in life. I need to be able to judge not only how long it will take me to get up in the morning, get dressed, eat, get my kids off to school, and drive to work, but I also need to be able to judge how much longer it will take me to get to work on a given day, given errands I have to run, weather conditions, and so forth. 

I am constantly exercising judgment when I decide how much and what I want to eat or buy or watch. I judge how late I want to go to bed, how much entertainment, exercise, and work I want to engage in daily/weekly/monthly in order to live the life I think is good for me to life. I make those same judgments on the parts of my minor children.  And then they grow up and they have to judge for themselves how to live.

I exercise judgment when I decide not to share a piece of news with a person who in my opinion is not privy to this information. I exercise judgment when I email a colleague at work to inquire what happened to our joint letter, which I sent him two weeks ago, but which he has yet to send back to me. I judge what to say, how to say it, when to say it, and by which medium to send the communication.

You get my point. 

We exercise judgment all the time, both in routine events that are not so hard to decide about, as well as in delicate situations that require forethought, consideration, seeing the other person's point of view, as well as in situations where we have other persons' welfare in our hands and can hire and fire them. 

JUDGMENT IS AN ESSENTIAL SKILL in a life successfully lived. Many folks live miserably because of failed judgments they made.

Judgment--lack of sound judgment-- is the sole, most important, most difficult sticky point with a person with developmental disabilities. 

[Note that when society says that someone is 'developmentally disabled' the label refers to the person's intellect only, not to any physical impairments he or she might have. So a developmentally disabled person is -- to put it in a good oldfashioned no-longer-acceptable words, retarded. In other words, low IQ. ]

Judgment is not forthcoming in great quantity in persons with low IQ. They simply are not capable of looking at all the aspects of a situation, seeing all the nuances and making a strong and wise decision. And that lack of judgment is both wonderful in that it allows them to be guileless, innocent and forthright. But it also gets them into big trouble on every front, with every family member, stranger, and friend as well as foe. AND THEY CANNOT HELP IT!

This summer both of Ben's brothers came home for a 3-4 week stretch each (not at the same time.) Each brother is military, and each brother stays in the lower bunk in Ben's room when he is home. They both tend to come home, dump their sea bags on the floor and they don't care too much about the messes they create while home, partially because we don't have much room, so there is not much room for them to store their stuff in, partly because they don't mind being slobs while they are home.

Well, during both visits, IN FACT at several points during EACH visit, I would suddenly hear an older brother's voice of panic: "Oh no! BEN!! You cleaned the room." You see, Ben likes his room reasonably neat, and when someone else makes a mess in what is his territory, he does not really have the verbal skills to articulate his need for order, so once a brother would be out for an evening, Ben would take that time to organize that brother's stuff. This resulted in long interrogations of : where did you put my computer mouse? Where are my keys? Where did you put my book? Where is my flash drive? etc.  Some of these, Ben was able to answer. In other cases you simply had to think logically of where Ben most likely would have put stuff, and in other cases again, the stuff was simply lost. Oh well!!

Almost every case of Ben's lack of complete common sense judgment on an issue goes like that. Good intentions - Bad judgment. There is a reason for everything Ben does, but he is not capable of keeping the entire picture in mind. 

Of course, I won't embarrass anyone with my story about the vegetable section at the grocery store recently :) . Those of us who live with Ben have learned to laugh in spite of other people's shocking outrage at some of the things Ben has said or done in public from time to time.

Ben's intentions are usually good, but he is also lacking in judgment when it comes to moods. He can be  grumpy, especially when -- as was the case this morning -- he doesn't get to go where he was planning, hoping, or used to going on a particular day.  This morning the usual destination would have been church, but Ben's brother was flying back to Annapolis, hence, a trip to the airport was in the cards instead. Ben was grumpy, and when grumpy his mood may randomly spill out on persons, we  meet. Ben will refuse to greet someone or refusing to comply with requests they make of him. When Ben is grumpy, he feels it, he thinks the whole world feels the same way, and he does not differentiate as to who suffers from his ill humor. Thankfully it is usually short lived, not vindictive, never violent, and mostly quiet, so not much harm is done.  It simply  must be forgiven -- one must consider the source.

I have in the past on this blog mentioned his lack of judgment in how much ketchup to pour, how much shampoo to use in one shower session, what to wear--given the weather. But that sort of judgment is difficult to inspire in a  person who cannot keep three things in his mind at once, and who in and of himself does not have many purposes to his day. 

Ben is mostly cared for, and in that capacity, he is trying to spend his time on things he likes. I can easily distract him, as I will when this blog is done, with having him help me cook dinner, fold laundry, or with me playing a game with him. But there are many hours in Ben's day, especially in the summer, where he must entertain himself. He just does whatever comes to mind. This is a low energy thing, like games on an iPad or a movie. My job is to structure his day so that he doesn't get a steady diet of media and no exercise at all. 

Now to us normal folks...

Likewise, many persons of normal intelligence have no judgment about Ben. Ben is, to them, a freak and an inconvenience, though they would never put it like that. Ben will play and have a good time when out in the community or at church, but I get called so often by people who are concerned about what he is doing, and who expect me to moderate how fast, loud, vigorous he 'does --- whatever it is he does'. 

That is fine. I much prefer getting called to having people try to deal with Ben themselves, since they inevitably scare him, and then he may shut down and run off and hide or in some what refuse to communicate or deal with anyone. 

What is, perhaps, not so easy, is that usually what others deem 'safe' for Ben is way less than what I think Ben capable of, or what I deem OK for Ben to engage in. To others he swings too high, he bounces too abruptly and hard on the slide. OR he is too loud, ... he is just  ... too.... too.... too.   I struggle to diplomatically  settle this issue to the satisfaction of all and Often I lack judgment.

What has been my conclusion in the last 3 years [since Ben got BIG and suddenly UN-cute] is that this is the battle that he and I must continually fight till the end of our days. 

There will always be another person somewhere  who thinks Ben ought NOT DO this or that. No matter how many people I 'school' in Ben and win over, there will always be another one who does not know. The 'poor' (in money, in heart, in spirit, in mind, in everything) we will always have with us. [And they are us too].

Explaining and justifying Ben's existence will be done and redone 70 x 7 times or more, henceforth and forever more. 

And what makes it tricky is this:  I have  never met a person who would not admit to the idea of being inclusive and accepting of persons with Down syndrome -- in principle, THAT IS. 

None of us think of ourselves as intolerant. We accept all races, male and female, kids, elderly, all creeds. We are all raised for democracy and for minority rights, and we are not out to squash anyone's right to BE HERE -- in principle. We believe ourselves to be kind --- and worse, we all believe ourselves to be of sound judgment. :P People are embarrassed to complain about Ben, they tell me, but their better judgment tells them they must because of this or that standard or fear or concern.  

In practice, we are all prejudiced. I am not talking racism here, but that we are prejudiced on  just about any topic we are not familiar with. 

We think we know how society ought to work and what duties each of us has towards others. We were raised with those values, and they are important to us.

When we encounter  an 'otherness' in someone like Ben, our values and judgments are challenged. And most of the time we still stick to our guns. We KNOW have good judgment, we know how to behave. It is this "otherness' that does not know what decency is. 

If we are fortunate enough to have the OTHERNESS explained to us well enough to realize that this disabled person can be no other than what he is, we may grown an inch in judgment and wisdom. But it is rare. 

Such is the case if we encounter a person (perhaps Ben) who in the middle of the grocery store (perhaps in the vegetable section) feels an itch and decides (with the best judgment he can muster) that it needs to be scratched. If that itch happens to occur in a somewhat remote and inaccessible spot on the body, there is no telling what we might be exposed to.

But need we react with shock? Is it so very shocking that human bodies have human body parts? -- Or is it shocking that more remote spots on the human body contain usually concealed human body parts?  -- Is it the end of the world, or the end of all decency, or even the end of anything at all, except our own dignity and compassion when we choose to react?? 

The person (perhaps Ben) is not the slightest bit uncomfortable scratching where it itches --- even if we are uncomfortable for having caught a glimpse of the action while reaching for the  tomatoes?

[Don't get me wrong. I am not suggesting that we all expose ourselves in Safeway near the tomatoes. I am merely suggesting that those who accidentally do so, and who know no better, do not merit a reaction from us. We simply don't see them, and we move on, like Miss Manners would.]

Recently at church, someone had forgotten to blow some candles out at a spot near the altar. Ben happened to be in that vicinity at church on that particular day precisely because the adult in charge of the swing set had decided that Ben was too 'dangerous' on the swings -- so she had removed all the swings, and nobody can swing on the swing set any more. 

As a result Ben was looking for a diversion, so he went exploring. That is when he decided to blow out the candles that someone had forgotten to blow out.  In the process, Ben encountered one of the many persons who do not understand him very well. That person (like the person in the grocery store) was outraged at Ben's action (blowing out candles --- surely a felony on the FBI's top 10 most heinous list).  

I admit, Ben's judgment was not sterling in going behind the altar. (Incidentally, Ben's mom's judgment of not  being within 5 ft of him at all times was also called into question)... but I feel that the judgment of the person who could see nothing but sacrilege in Ben's blowing out the candles is perhaps also impaired a touch. 

Life is bigger than  a couple of candles, even if the candles are near or behind the altar of a sacramental church. 

Perhaps we are asked in the Gospel to "judge not lest we be judged", not so much because we too are guilty of much, but because [like everyone else] we understand so litte and rarely ever have the entire picture.  

It is mostly elderly persons who are consistently bothered by Ben's being around and 'doing stuff'. I myself know so little of what they suffer in body and mind, what their fears are, or how they struggle with loud noises, sudden movements, or the fear that someone might break something somewhere.

Lord Have Mercy. 

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.

Finding .... no, not Nemo, but ... Ben

Where's cross-out-Waldo-and-Insert Ben is the subtitle of this blog, I suppose. It is a game, but it's harder than the Waldo game because I rarely remember what he is wearing. Waldo usually has that same hat and those same colors on.

One of the most interesting aspects of dealing with almost non-verbal persons with special needs is an acute lack of communication.

DUH, you say, I am sure. And DUH is right.

If I had a dime for every time I have run around frantically looking for Ben .... :)

Let's see the most intense time ever was when Ben was somewhere around 7 - 9 years of age, we were staying late after church to set up for a special event, and Ben was nowhere to be found. Nowhere. We enlisted every person who was still at church, about 30 persons or so, men, women, and children. We looked in the parking lot. We looked down the road in the old barn. We looked in the temple, in the parish hall, in all the restrooms, and in the Sunday School rooms. We made double circles around the entire building. No Ben. I was just short of calling the police in case of kidnapping or in case, Ben was walking down the very busy highway just outside the church. A dear friend grabbed my hand and said, "It's high time we prayed." And so she and I walked into the temple, kneeled down, prayed, and didn't get more than 3 minutes into the prayer when a bunch of children burst into the temple. "We've found Ben!"

Where was he? Where had he been?

Well, in order to find Ben, you have to think like Ben. You see, he loved Mrs. L. And he had wanted to go home with Mrs. L and play at her house, something he had done in the past. Mrs. L. had not locked her car. And what better way to make it clear that he wanted to go home with Mrs. L than to sit in her car and let her know when she and her kids would get ready to go home. Well, Ben did not know that we were staying late at church to set up for a special dinner, so while sitting in Mrs. L's minivan, he had gotten tired, laid down on the back seat and fallen asleep. --- and now you know the rest of the story.

On a similar note, just a couple of years ago, we had gone to church to a concert, rather than for a service. I helped in the kitchen with some desserts we were setting out for the singers after the concert. Just as the singing was about to begin, I could not find Ben. I spent half the concert looking for Ben in the church buillding, then I decided to go outside. I prayed hard as I circled the building, and then I caught a glimpse through one of the windows at the back of the altar where someone was moving. There should be noone behind the altar at this time, so the answer to my riddle was solved. Ben was back there, fully robed as an altar boy, waiting for the service to start.

I won't continue with the details. Ben has come home with the police after wandering out of our house, I have lost him in stores, in parks, school has lost him. He is never far, and to find him, you have to think like Ben.

In a like manner, when things disappear from this household, one is tempted (one, meaning all the rest of us) to think that Ben has taken it. It's a difficult situation to be in because some times it is true, but often it is not true. A few weeks ago, I could not find my daughter's cell phone. I was supposed to mail it to Greece for her. I did not accuse Ben out loud, I just had a sneaking suspicion in my mind. I combed through his room, but alas, I was wrong. I found the phone. Ben had nothing to do with it.

Not so with the time my new iPad was lost. I really could not find it, until school called and told me Ben had brought an iPad to school, did I really want him to do that?

Then there was that one afternoon when Ben told me he wanted a hot lunch for Friday's school lunch. We do hot lunches sometimes, but for the most part we don't. I told him no. We pack our lunches. Well, apparently he decided he was going to have a hot lunch, and he knew where I kept money, and he took what he thought was $3, so he could buy a hot lunch at school. -- Only, it turned out to be $300, not $3.

Last week, he tried to wear his 23 year old brother's leather jacket to school.

Ben is not a thief, or at least I do not see him as such. He has (and I wish they would change the way they have money open in a basket) taken money from the candle basket at church (where people put coins and take a candle to light).

OK, I know that is not a good thing, but Ben has no clue. He looks at a basket with money, and he has learned that the green stuff can buy you a hamburger or a new shirt or a game. Every week that basket just sits there with green stuff. Why doesn't anyone do anything with it?  And so at one point, he took some. His pockets were full. He was asked to return it, and he was somewhat landed on, and as far as I know, he emphatically (though not logically) understands that he may not take that money. (Ditto for my money at home. I sent a strong emphatic message that he may not take my money...but I also moved my petty cash to a new location and I keep less of it at home).

Telling mom or anyone where he is going is an issue. Asking before taking is another issue.

In both cases communication is minimal. For one thing, if he declares, as he has in the past, that he is going to so-and-so's house because that is where he wants to go, what does that get him? Not much, most of the time, since most of the time his wishes do not coordinate with everyone's schedules, and so what he wants does not happen, so what's easier than just trying to do it on your own?

Ditto for stuff. He has asked and he can ask, and I do try hard to honor his wishes, but at times the answer is no. When the answer is no, there are a million reasons why Ben would want to argue with me about the issue, but he has not the verbal command to do so, not even close. The most he can do is get in a yes-no-yes-no-yes-no battle, and that does not work with any person who is in authority over him. So... what is easier than just taking what you want on your own. Most of the time it probably works, and when it doesn't, you learn something new

Finding Nemo... finding Ben... finding stuff  that may or may not be there, which may or may not be Ben's fault.  The worst is accusing someone of having taken something and finding that the 'someone' did not take it... you misplaced it all by yourself. I have raised 4 kids, and I HATE accusing when I am not sure, so generally I don't. Perhaps that results in Ben getting away with stuff. I am not sure.

Again, I would say, Ben is not a thief. He would give you his shirt off his back, if you asked. He would give you his last piece of candy, even if it meant that he didn't get any himself. He does like to collect stuff, but not hoard it. He is very generous, perhaps so generous that he assumes that other people hold as loosely to their stuff as he holds his own stuff. So it's no big deal to him... stuff isn't.

Interacting with the Public

The world is very welcoming to little children with Down syndrome---that is, for those of them that manage to get themselves born. (But that is another chapter for another day, perhaps, perhaps not). Toddlers with Down's are irresistibly cute (as are all little children), but when they grow up, society is uncomfortable with their teenage and adult hood bodies and minds and most people do not know how to interact with them.

Young persons with Down's often feel socially isolated. Everyone else is connecting by play, by talk or in some game that the young person with Down's does not necessarily understand enough of to participate. Nor do most people invite him to join. The person with Down's, however, likes to be around others that are playing, and what better place than to sit on the swing and swing and swing while enjoying the remote company of the kids playing in the sand or on the grass around him while he just swings on the swing set? He is there, somewhat included, and he is having a good time.

So he swings high. He puts as much effort into that swing as he possibly can. It feels exhilarating to be going through the air, up and down, the air brushing his face, and best of all, when he is really high up, he can JUMP, jump off and land on his feet. And then get back on the swing to start the process all over. What better way is there to spend a sunny fall day in November?

But, say parents of younger kids, he is too big for the swing set, and he swings too high, and he cannot look out for younger kids, and they might get in the way of his amplitude, or one of his jumps.

And then there is the issue that he hogs the swing. He gets on the swing and for the 30 or more minutes that he is there, he will just swing and swing, the same way that when he is at the pool he makes an endless series of loops to the water slide, down the slide, into the water, then crawls out, climbs the ladder, back at the top of the slide, and then the delightful 30 seconds of down, down, down, hit the water, and then up the ladder again.

Other kids may know moderation or be pressured by adults to vary their activities from the swing to the sandbox to the slide to the hopscotch. They need to try it all and they need to let other kids onto the swing. AND  most of all, as Barney the Purple Dinosaur told us all... we need to share--and that includes sharing the swing. 

What parents of typical kids often miss is that the young man with Down Syndrome has 15-19 years experience, and that experience tells him that he prefers the swing at the  playground, and that he prefers the water slide at the pool. He doesn't feel a need to TRY anything else, having already tried it all year after year for almost two decades. The swing is it. And that is where he wants to be. The swing gives him the stimulation his nervous system needs to endure the usual social isolation that he often feels--it helps him forget how hard it is to fit into the world, and how difficult it is to break through to other people who seemingly are all connected, something a young adult with Down's never feels, no matter how hard he tries.

Young adults with Down syndrome are precisely that--young adults--no longer kids--or at least on the verge of no longer being kids, just like any other 17-19 year old. 

But in the minds of the public these young adults are ---"forever kids' in the most romantic sense of that term. They are supposedly children in mind and mentality, and as such they get treated like little kids by most people, as if they fulfill people's nascent dreams of eternal innocence. As eternal children, young adults with Down's get corrected and lectured at, and they get saddled with the expectations one would have of a 6 year old kid--- or at least with the sort of talking to that we think we can get away with when a kid is 6: "It's time to let someone else on the swing, Johnny. You have had your turn."  -- That may be reasonable when you are training your 6 year old that the park is for everyone and that there are people waiting their turns, but you would never do that to an adult who was sitting on a swing, nor for that matter  would we-- (not I at least) would never-- do that to our young adult children. We would let them decide how long to do whatever they are doing (like playing Risk till 1 am). We would not interfere with other young adults at church as to how long they throw a football around, or whether they have spent the whole 30 minutes between the church service and the Sunday School playing tetherball. That is their choice. They can manage and moderate their own behaviors, preferences, and spare time.

So also, I would advocate, we need to respect the young adult who is developmentally disabled. He can manage and moderate his behavior and he needs not only his space, he needs our vote of confidence that when he is not doing something that is dangerous or in some way seriously causing discomfort to others, we need not correct his repetitive behaviors or choices. We need to respect the way he chooses to spend his time-- the way we would any other 17 year old's choices.

Some people are not comfortable having anyone that big playing around little children, but by taking that stance, they have made their own world smaller, narrower, and they have barred another human being from being able to enjoy himself the only way he knows how, simply because they do not understand him or trust him.  

I realize I am advocating for the benefits of one, instead of the benefits for the many. I realize that most people are not only uncomfortable with young adults who are developmentally disabled, but actually scared of them because they are different, because they have near adult bodies, and perhaps they have near adult urges, and perhaps they would do something untoward that we would not know how to deal with or stop.... so the thinking is 'best not to let it happen to start with'. 

But where... if I may ask ... where do these young adults (and later older adults) with developmental disabilities belong? 

Like Shylock said about Jews in "The Merchant of Venice", if you poke them do they not bleed, if you tickle them do they not laugh. 

Where do they belong? Where do any of us belong? Who decides?