JUST LIKE US?

Persons with Down's are 'Just like us', yes... and no. 

In the past 40 years, since we stopped institutionalizing persons with Down's and started educating them, they live on the average 30 years longer than they used to, and they have on the average increased their IQs by 20 percent because we started allowing persons with Down's into the public schools. Those are marvelous strides, and I think the 'just like us' strategy has worked well to bring this about.

In other ways NOT just like us.  My daughter likes to shock her professors in college by saying stuff like "I can't meet then. I have to go home and get my 17 year old brother off the school bus". She enjoys the funny looks she gets, and she milks the awkward pause for all it's worth before explaining the situation. Once explained, the professor understands. A person with an IQ somewhere between 40 and 65 is not 'just like the rest of us'. It is a person who can learn to live with support. It is a person--in the case of my son--who does not have the judgment to get off the bus, walk home, and stay at home alone. It is a person who should be respected and loved, but it is also a person who needs a guardian, who needs to be protected for his own good, physically, emotionally, financially, etc. And that is precisely why persons with Down's are 'not exactly like us in all respects'. 

A lot is written about Down Syndrome and childhood, and many cute pictures of adorable babies are posted, as different parents, teachers, schools, associations and advocates tell us how these individuals are 'just like us'. I agree. All persons with Down Syndrome are first and foremost human beings. They can be sweet, they can be stubborn, they get angry, they like to play games, they do sports, they love their families and friends, etc.  

However, whenever we self-consciously try to convince ourselves that these persons with Down's are 'just like us', the effort we have to muster to be  convincing is the proof that they are NOT 'just like us' in all respects. If they were, nobody would need any convincing.

Chromosomally, persons with Down syndrome have an extra chromosome on pair 21. In short, it is a miracle in a lot of respects that persons who have Down Syndrome live and function and are as normal as they are, given that in every heart cell, in every kidney cell, in every skin cell, indeed in every single hair on their heads, their genetic make up is different from that of typical human beings. They have 47 chromosomes in every cell, and typical human beings have only 46. Down syndrome is genetically amazing! Or at least, it is amazing that you can have that much genetic material present without having more differences between those with 46 and those with 47.

But before I get carried away with the scientific wonder of the situation, let's get back to the topic "just like us". I do want to minimize the differences in terms of people's humanity and people's rights to be treated equitably, and I do want to help stop discrimination against Down syndrome whenever possible, so I don't want to highlight the differences with the aim of making discrimination worse.  

What I will say though is that there are enough differences that it is a task to raise a kid with Down's, and even when they are adults, they still need supervision and 'raising' where regular kids do not.

 I have 4 children who are now all adults. One has Down Syndrome, the other three do not. The three without Down's each have close to triple or more the IQ points that the person with Down's has.  At 18, all three kids without Down's were capable of moving out, driving cars, getting jobs, and going to college. The kid with Down's is not.

Clearly there are differences, and I think the current 'campaign' of showing the sameness, in some respects make society blind to the needs of parents of kids with Down's as well as those kids themselves as they grow. There are HUGE adult needs for persons with Down's, and when we play this 'just like us' game, we shoot ourselves in the foot, minimize the needs, and do not get the political clout and attention to deal with the issues that need to be brought to the forefront.

One comment I read was that a mother said she thought it was nothing to raise her 7 year old with Downs. After all, she had a teenage daughter who was much worse. Well, let me mourn with the mother who has the difficult teen daughter, since I have been blessed with teens that did not give me trouble. But let me also assure her that as her 7 year old with Down's grows into teen and adulthood, she will have many more issues to deal with IN EVERY RESPECT for her offspring with Downs--- many more problems than the average teenager will ever give her on her worst day. After all, you don't have to find a sitter for most 18 year olds when you want to go out for the evening. 

Another aspect of normalizing Down's that bothers me is that those pictures we see in magazines and books--in typical western world style--are almost always of the prettiest persons with Down's and most often they are pictures of very young kids with Downs. (The same way that we rarely see ugly or old women as news anchors in this country).   I just prefer pictures of real people -- all people -- not fashion models. All people are in essence beautiful for their humanity, so why do pictures in the media usually sport the young, the slim, the pretty? Truth is that most adolescents with Down syndrome are obese and struggle with their complexion. We hardly ever see obese persons on those poster-style pictures. It would be good to simply capture people as they really are rather than cater to our media-developed craving for 'beautiful people'. My son with Down's has an uneven face and he also has cleft lip and palate, hearing aids, and eye alignment issues. I still think he is beautiful, but not fashion - model beautiful. 


I will end with this blog, written by a mother of a child with special needs. I thought of it in light of 'not exactly just like us'... she has 10 reasons why she hates being a special needs mother and trust me, she is spot on with each one. Days like hers are not your typical mom's days. http://insidiousglamour.hubpages.com/hub/Top-Ten-Reasons-Why-I-Hate-Being-a-Special-Needs-Mother

My mantra on some days when I have had enough is "I SO did not sign up for this."  Yes, most days are a blessing, but even the days that are a blessing are a different sort of day, a different sort of work, a life most people don't live: flossing the braces on the teeth of your 18 year old, shaving your 18 year old, checking his underwear and sending him back to his room because he is wearing 4 pair on top of each other under his jeans (don't ask me, I have no idea why), checking his backpack before he leaves the house to make sure he didn't take something from someone's room, checking his wallet that he did not take any extra money from someone, reminding him to be good and not grumpy. Checking feet for blisters from the leg supports at night, rehearsing every morning how his day will go, so he is not surprised and goes into uncooperative mode because he did not expect the new thing he does not want to do, securing a sitter for night meetings at work, scheduling and attending 2-4 doctor's appointments per month.  Hooking your kid up to Oxygen at night...  explaining YET to another person at church what your child is capable of, and why he does not behave as that particular individual would like him to, etc. 

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.