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.

Delayed?

The old-fashioned term for a disability involving a low IQ used to be mental retardation. But that has connotations and is no longer allowed because it is a demeaning term. What we are left with today is mentally challenged or developmentally delayed. But it's all the same thing, and when I say retarded, I mean no disrespect. I mean that unlike the children in Lake Wobegon, Ben's IQ is decidedly below average.

Delayed ---- retarded --- slow???

Yes, medically, physically, emotionally, academically.

Persons with Down's are delayed  in almost every sense of that word, which is why I labeled this post WHAT, ME HURRY?  Ben's immune system is slow to mount in response to microorganisms. Ben may get sick with the same thing everyone else in the family has, but he will manifest symptoms later than any of us and usually be sicker, since his body is slow to register that something invaded and therefore slow to respond and by the time he responds his system has taken a serious hit. Ben is slow to register pain, if hit, burned or otherwise 'assaulted' by something that does not feel good. It is almost like he kinda registers something, gets a frown on his face, wonders what it is and then reacts... in much the same way that cartoon characters do not get affected by gravity when running out over a cliff until they actually see that they have nothing to stand on but thin air.

Ben is also slow physically. He can take half a morning to get dressed, meticulously eyeing one sock at a time, then slowly bending down to slip the sock over the toes, straightening the sock over the heel, carefully making sure there are no folds,  then up the leg with a good meticulous long-drawn out pull all the way up to the knees, then slowly lower the leg, after which he fiddles around looking for the other sock and repeats the process. You don't want to watch this, because if you are in a hurry, his process will absolutely drive you batty. If you include his need to also put on his AFOs (leg braces) over the socks, and then insert the AFOs into the shoes, to say nothing of his carefully velcro-ing his shoes at least three times per strap before he is satisfied with the position of the straps on his shoes--- from barefoot to fully shod can easily take 20 minutes for Ben.

Ditto for drying himself after a bath, getting dressed and so forth. Nothing wrong with it, but if you are a fairly fast and more than slightly impatient person like me who carefully calculates every minute of your day to get everything done as efficiently as possible... you had best look away and let Ben do his thing, HOWEVER LONG IT TAKES, because watching the process can be enough to make a grown woman wail in despair. :)

 If you cannot take it any more and you choose to step in and predict all the disasters in the world fall over his little blonde head if he does not hurry the process .... guess what??? It helps not one iota. --- Ben's epitaph is 'HE-WHO-WILL-NOT-BE-HURRIED'.

In fact, encouraging him (or threatening him within an inch of his life) to speed up the process has the opposite effect. --- And so mom is duly humbled, gets daily lessons in mastering the art of patience, and has long since learned to leave the room with a smile.

Now, the word retarded, in broader terms simply means delayed, and I would say that in terms of Down Syndrome that term does not totally fit the bill. Yes, they are slow, but that is not all. The issue (mentally speaking) is not just one of being 'delayed', since delayed sort of indicates that sooner or later one will catch up. For example, if your flight is delayed out of Chicago, you are not usually afraid that you will never get to Denver, Colorado, rather you understand delayed to mean that you will get to Denver later than you expected to get to Denver. -- However, if a person is developmentally delayed (or if we dare use the term mentally retarded), the person is not just delayed in getting to destinations or milestones of life, but there are definitely destinations that that person will never get to.

For example, in the case of my son, who is estimated to have an IQ of 45 (on the low side for Down's, but not on the extremely low side), abstractions are beyond him. For example, we can work from now till the cows come home, but he will never be able to grasp basic algebra. [At this point if I am having a conversation with another person I am often told by my conversational partner that he or she does not get algebra either, but I would maintain that that is a different story. Part of my job where I work does sometimes involve teaching college algebra to persons who plan on graduating from college, and I have yet to meet one person (of college material) who cannot get through college algebra]. In contrast, my son cannot even begin to grasp what x is or why we are looking for x. He is pretty much stuck somewhere back in the very concrete concepts of 2nd grade reading and math, unable to carry the 10s, but able to punch numbers on a calculator to assist him where his powers of abstraction fail him.

To say that he is developmentally delayed is, as I am suggesting, highly inadequate. He is equipped with less IQ points BY DESIGN, from conception, and he ain't ever gonna fully catch up. For example, while he is mentally about 8 years old, I cannot ask him hypothetical questions like "Ben, if you could ______________ ?" The subjunctive "if you could' is completely lost on him whereas most typical 8 year olds are already capable of that abstraction.  With Ben, the term 'if you....' never works. So we struggle, for example, to teach him about strangers, whether you go with them when they ask, where they are allowed to touch you. In school they try to teach safety by teaching the kids in special ed "circles" of family at home, of extended family, of friends, of people we know, of strangers. Each circle teaches what mom and dad can do to you, what strangers can and cannot do to you, but Ben cannot get the abstractions of any of those circles and what the different persons are allowed to do or not do to him. He does not understand why we do not give the technician at the optical store a hug after he adjusts our glasses,  or why we don't stand at the side of the road waiting for the school bus waving our arms and saying hi to every car that passes on the road.  HIs is a trusting, loving spirit, well-meaning, and thinking well of all. We have much to learn from that spirit, at the same time that we need to protect him from the few extremely sick people out there who would (if they could) take advantage of his willing, trusting, loving heart.

 It's not like he will in 10 years catch up to an 18 year old level of functioning. Mentally Ben functions at about 8 years of age and that is as far as he will ever get. Emotionally, emphatically and in other ways, he is more perceptive and compassionate than an 8 year old. He has a better grasp on the rules, and cares more about following them than most 8 year olds, so NO, he is not 8. He is a 17 year old boy with Down's.

So what, you may say, let him be slow. What is the big rush? Life is too speedy to start with. And I agree. I get him up plenty early in the morning for him to take as long as he likes to get himself ready, eat breakfast and go out the door at a leisurely pace, without being rushed or pushed, and it works beautifully --- most of the time.  There are just those few times where something in life requires that we hurry, and those times I do almost everything for Ben, just to get us going on time. --- And then there are those few times where hurry is necessary and Ben has to muster it, but almost can't, and those can be frustrating. Like today when we left a building down in Denver and were parked a good 5 minutes walk from the building and it was raining cats and dogs. We had no coats, no umbrella, and Ben is way beyond a size I can carry any more. He just walked at his normal leisurely pace, and by the time we got to the car, we were completely drenched.

Last when Ben's older brother Alex (aged 19) was home, when we went places, Alex, who is at a military academy and used to walking very fast everywhere, took to walking one step behind Ben and guiding him along with a flat hand against his back, the way they do in their company when they are on runs and some of their company mates are so spent they can hardly run any further. :) It's a good trick. I learned something and I have used it since when I need Ben to keep moving.

Ben is a gift. I continue taking daily lessons in patience, in sniffing the flowers along the way, in stopping to pet a dog, admire the way light interference and refraction (yes, the physicist is coming out here) in an oil spill in the parking lot.  -- Besides, what is the big hurry... there is no race. There is only right now, so take a deep breath and enjoy it!!