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.

I Could not Do What You are Doing . --- Are you kidding?? Neither can I!!!

A certain number of people have told me that off and on, and it is a kindness and a kind compliment, and I certainly take it as such... but let me say this. Take me back before September 1996 before Ben was born. Give me a run down of those next 18 years with Ben (and God only knows what lies ahead of us yet here in 2014), tell me this will be my future life... and I would have run away faster than Jonah ran from God. And likely some sea creature would have swallowed me up and spit me out on some foreign shores to face my problems :)

There is NO way, absolutely NO WAY apart from having Ben and his health and mental issues thrust upon me ignorantly, that you would have ever gotten me to say that "Oh, sure, I can handle this. Not a problem."

Ben was born after (get this!!) 50+ hours of labor. I went into labor on September 6th at 2 pm, a Friday afternoon. I remember that first pang distinctly. Kids with Down's tend to be slightly early, and he was 36 weeks and a little more. Ben was born at 1 am on September 9th. It was not grueling labor, it was all very uneven, did not go anywhere and because of his heart condition, he was a c-section Baby.

His apgars were 4 and then 6 at 5 minutes. He immediately was put on oxygen, whisked into the NICU and stayed there for (I am losing count of these details) I think 23 days. He was of course not eating because with his cleft lip and palate he could form no suction by which to take in nourishment, so he had a naso-gastric tube inserted through his nose into his stomach, and it stayed there till he was 8 months old when we had a permanent G tube placed surgically (that is another story). I need to back up on that. The naso- gastric tube was taped to the side of his face. He often pulled it out and I learned to be a pro at inserting it  into his stomach and listening with a stethoscope at his stomach for the woosh when I pushed air in :) Also the latex tube hardens with the stomach acid, so it needs to be replaced regularly. Ben was syringe fed around the clock every 2-3 hours for the first 3 months of his life. (Yes, I slept in 1 hour shifts, then up to pump breast milk, fortify it with formula, pump it into Ben, then sleep... etc.)  How did I do it? I HAVE NO IDEA.

I had 3 older kids ages 18 months, 3 years, and 6 years old. That time until 3 months when Ben had his first open heart surgery is rather foggy. And somehow I still got up in the morning, dealt with the other kids, drove to appointments.

The week Ben got home from the hospital my daughter Kirsten who was 3 decided to have a major allergic reaction to something, and no matter what we did to treat her it would not go away. She was speckled in little red dots from head to toe, the worst rash I have ever seen, and we spent weeks trying to clear her up, so in addition to Ben going to Cardiology, new born visits, gastroenterology, sick fever visits, nutrition visits, endocrinology visits, ear nose throat, plastic surgeon (for cleft stuff) as well as orthodontics for his cleft palate... I had to cart a 3 year old who looked like she had a bad case of measles to dermatology.  Kirsten eventually cleared up by being put in all cotton, special diet, no contact with any surface that was not 100% natural cotton etc, and life settled down with her, which was good because Ben continued to be an interesting challenge. He had a heart monitor at night (my request so I could sleep soundly unless it beeped or UNTIL the alarm woke me up for the next feeding) He developed some interesting food intolerances resulting in intestinal bleedings and ended up tolerating only baby formulas that were broken down to their constituent amino acid forms. Did you know that amino acids really really stink?? I mean baby formula does not smell that great but amino acids are awful. Who cares, it all goes in the tube and down in his stomach, he never has to taste it, so no harm done.  The tube from his nose down was another interesting challenge because it left his sphincter muscle  always open from the stomach to the esophagus (we paid for that issue 2 years later with a fundoplication procedure) and he quickly developed acid reflux and refluxed himself into a couple of lying down aspiration pneumonias as well as a bright red lower esophagus . We paid dearly for that ng tube later, and always wondered why nobody talked to us about placing a permanent G tube in his stomach much earlier to lessen his reflux issues. But never mind, it was so busy, probably everyone thought someone else had talked to me about this issue.

Ben's morning meds were such a dose that quite frankly he was full just with the mini syringes of digoxin, lasix, aldactone, propulsid, ... I forget the others, but at one point I remember counting 15 little syringes I had to pull up for him in the morning. And quite often they came back the way they were sent down as Ben must have been so nauseated by the meds he could not keep it down. And after meds filling him up somewhat, he was not able to keep down any formula I syringed into him via the ng tube either. Those were precarious days, always on the brink of hospital admission, and quite often in the hospital.

I honestly don't know how we got him to 3 months and open heart surgery. I think back and I remember meds, I remember being busy, I don't remember the other kids much, though they were there, but I don't remember being stressed either. It was more of a , OK if this is what we have to do. This is what we will do. And I was hyper conscious that a calm me meant  calm kids and calm baby. So lots of laughs. NO expectations of any day, other than the prayer for survival for all.

From the time Ben was discharged from NICU till he went for his first open heart surgery, we went to cardiology at least weekly, many days daily. Ben was born with a heart with no walls, and the valves (tricuspid and mitral valves) were fused together into one dysfunctional valve. So he basically had one big heart chamber which simultaneously squeezed blood in all directions to his body at the same time, rather than our ordered normal hearts which differentiate oxygenated blood from blood returning to the heart that needs to go to the lungs to become oxygenated. HIs heart was highly inefficient. I think it is a small miracle that any person can live with a heart like that.

As a result, he was rather bluish and his oxygen saturations were poor all the time. The surgeons always waited till 3 months if they could, to operate on these hearts because the outcomes would be better if the heart was bigger. And so, also with Ben, in spite of his fluid gain in all his limbs (He looked fat but it was all water) and his poor functioning, no energy to swallow, hardly any energy to cry, he got to wait for 3 months for this all important surgery.

During that time he was mostly tired from this poorly functioning heart which took all his energies away, and he mostly slept, and if he were awake and had the energy he mostly cried because of his red esophagus that really hurt him rather badly. Any time we needed an echocardiogram to make sure his heart was not getting worse (and that was about once a week) he had to be sedated because he would scream so badly with the cold gel and the transponder  moving around on his chest that they could not see anything on the echo, otherwise. My older kids were as home in the cardiology waiting room as they were at home in our living room, it seemed. And the kind people in the office always played movies for the older kids so the procedures were not too odious for them to get through.

Open heart surgery, what can I say. It was Ben's first surgery, because he was too frail to have any of the other things he needed done, until the heart was stable. We had already had our  daughter Kirsten in a minor operation before, ditto for our son Nikolas, and I had had 4 c-sections, so we were veterans... or so we thought.

But no. Open heart surgery is above and beyond. Come the day before. Do tons of blood work, talk to a million specialists. Be told all the terrible things that can go wrong. Get canceled either because your kid is too this or that, and reschedule, or get canceled and rescheduled because a kid is born with hypo-plastic left heart the night before-- a syndrome that cannot wait, while my kid could wait.

When you finally surrender your kid to open heart surgery, you wait an eternity. I think we turned Ben over at 6 am, and I think he came out around 2 pm... or at least, we were allowed to see him again at 2 pm-- in the cardio-thoracic intensive care unit, where he is on a ventilator, hooked up with what seems like a million leads, and completely unresponsive to anyone. It is a rather heart wrenching sight to see a kid in that condition, let alone your own baby, but you get used to it.  And you hang there for another 5-10 days before your kid finally goes home, but back up. Cardio-thoracic intensive care was at that point at CS Mott, one big room or two, where there was a nurse for every 2 patients, unless your kid needed more intensive care. Result--- any time any kid was in crisis, the whole unit shut down and all parents were kicked out, so I spent a lot of time not allowed to see my kid even when he was doing OK. (I am not saying this resentfully, believe me, I felt for the parents who had a kid who was struggling,but the arrangement was difficult to live with.)

The first big step is getting your kid off the ventilator and letting him breathe on his own. The first try with Ben did not work, and they had to put him back on the ventilator.  It is stressful to witness this and be so helpless. You just sit and pray. Those first 3 days after open heart surgery are tenuous, you want to fast forward, but of course you can't and time moves like frozen molasses. I want to add here that at the time I was not an experienced hospital parent as I became later. I did not realize how long it takes for a specialist to show up, or how normal it is for things ordered to show up HOURS after they were asked for. It took me all of school year 1996-1997 fall and spring to develop my hospital patience and having my hospital bag ready at all times, where you bring all sorts of things to entertain yourself while your kid is on a ventilator: computer, book (and yes, I was one of the few people with a big clunky cell phone back then. Big enough to serve, also as an instrument of self defense, if needed :). This is when I got back in to the habit of knitting, a hobby I had dropped in 1990 when Nikolas was born, and ever since Nick there had been a baby to lay claim to my lap, so no knitting had really been possible. Well, with Ben in ICU on a vent, and mamma in a rocker next to his bed, why not knit? So I took up sock knitting because they are small and portable, and I have been knitting socks ever since.

Well, we survived (both Ben and me and the whole family) open heart surgery, and I won't bore everyone with the details, but we came home  from the hospital just before Christmas 1996, and Ben screamed and screamed day in and day out, and did not settle down and all through Christmas 1996 into the new year we were at the cardiologist's or in the ER or in the hospital with this kiddo who just did not seem to come out of that surgery as well as every one had thought he ought. He had pericarditis (inflammation of the area around the heart) and then as that settled, the fevers started spiking and the diagnosis was endocarditis (and infection inside the heart) and then pneumonia from all of the above and who knows what else, and ended up with a second open heart surgery to repair a heart which was damaged because of the infection.

In short, complications, the sort only 5% coming out from that procedure tend to have. But Ben with his cleft lip and palate, kidney reflux, GI reflux, chronic ear infections, gastro intestinal intolerances, etc seemed to go with the 5% always, never with the 95% who fared well. The joke became 'what else can be wrong with this kid?" ... a morbid joke, to be sure, but you either laugh or cry, and my solution is that laughter is the preferred path.

Ben and I became best friends with a number of doctors, from cardiology to pediatrics to GI to urology to the nutritionist, and had the fun experience of having the nurses fight over who got Ben, when he was re admitted and re admitted and re admitted onto the floors both at CS Mott's and also at our local Bronson hospital in Kalamazoo.

I have fond memories of sitting up late in hospital rooms, chatting with our favorite nurses, having doctors save Ben's room for last on the round and then sitting down to chat about everything and anything and of course about Ben late into the night, sometimes past midnight, if the doc was there anyways on call all night. I remember being in the hospital for Easter, Mother's Day, Thanksgiving, Christmas, and having different people popping in with flowers, chocolate, gifts, jokes (and I am not talking family and friends here, though they did it too, I am talking doctors and nurses).

One of the best experiences of having a really sick kid like what was the camaraderie, the sense of being part of a team, where every last person was doing his or her best to help Ben survive (and survival was 4-5 times really the issue--- would he get through the surgery, or get over the infection?) I remember living off of crackers and little else one time because I forgot my wallet at home. Somehow a doctor found out and he insisted on giving me a $  50 bill and refused repayment... just so I could get something to eat until my family would show up again.  -- At one point at CS Mott's I was so run down and sick myself, Ben's one doctor took a look at me and prescribed an antibiotic. I had no time to go off campus and home to see my own doctor 100 miles away.  -- I have had people clear broom closets and set up a cot so I could sleep there. One nurse let me sleep next to be in the ICU for a couple of nights because I had nowhere to go (a no no). I have also, of course, slept many a night in  a Ronald McDonald House when they had an available room, and whenever I go through McDonald's to this day, if I have cash, I do a donation to the  Ronald McDonald house.

I met many wonderful parents in crisis while in the hospital with Ben. During my longest stint in 1998 in the spring, a dear lady and I were like best friends all that spring as her daughter was in forever as well, and we would roll our babies in strollers out into the indoor play land in the middle of the cardio floor and sit and chat for hours while our babies slept in their strollers.

Apart from making Ben well, and supporting him again and again as he sported an infection or needed yet another procedure (he had over 20 procedures his first 2 years), the hospitals (Bronson and CS Mott's) were wonderful places where I learned patience as well as  a strange solidarity with fellow parents with suffering kids. A few parents were bitter, angry and touchy (and I understand why), but most of us were positive, hopeful, supported and grateful.

Ben had a lot of brushes with 'bad luck', a couple of honest mistakes, and one situation I would term malpractice. But I would say this. Yes, the 'honest mistake' was life threatening, but..... Basically they were placing a feeding tube in his  stomach and they missed the stomach, which generally does not happen, but it happened to Ben. As a result, for about 12 hours we were feeding him formula straight into the cavity that holds the stomach and all the lower organs. Once they figured out what was happening (he was already inpatient for other reasons) he went straight into the operating room, and I was told very honestly that they did not know if he would survive. I wasn't even angry or suit-happy. All I wanted to do was to pray that Ben would survive. The surgeon who made the mistake did not do anything that anyone else wouldn't do. Nobody knew that Ben's unusual canal for placing the tube would act strangely and collapse as it did. It was not the surgeon's fault. And more to the point, in my grieved and bewildered state I recognized that he owned his mistake and did not try to paw it off on other circumstances.

To wrap up. The hospital years were strange, intense, scary at times, but they were also immensely positive in other ways. I learned so much about myself, my own lack of patience, and about what really matters when lives are on the line. I look back at those years with fondness and many wonderful memories with doctors, nurses, and fellow parents of patients. There were moments of tears and fears, but the people that surrounded me (and I was usually alone 100 miles from home) were professional but also human and supportive and caring, and funny, and real, and sometimes angry and frustrated. It was a very real time. I wouldn't trade it.

But to those who say (and they are many!) they could not do what I am doing or what I did: Seriously, neither can I. There is something very real about the urgency of a situation one cannot help. You are thrust in it. You do it. Because you must. Not because you are particularly gifted. Not because you can. But because it IS.

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!!

Special Needs and Church

This is a difficult post to write because there are so many aspects to special needs and also so many aspects to church.

Let me start with the beginning. We went to a very supportive church in Kalamazoo, Michigan which went above and beyond the first few years while Ben was in and out of the hospital. So many people took our three older kids in (kids ages 2,4, and 7 at first) ...for the day... overnight... etc.

Ben got well enough, around age 3 or 4, to actually come to church when it was not flu season, and he was in the toddler nursery and they loved him there.

When we moved to Colorado Ben was 7, and the church we ended up in was/is liturgical, which was an excellent fit for Ben. The routine of the liturgy is amazingly soothing for him. The sermon/homily is not as long, so he sits through that just fine, and all the bells and whistles (incense, icons, prostrations) -- worshipping with all 5 senses-- works really well for him too. He can be part of so much of it, and he likes it. Ben also is an altar boy now, has been since 2009, and he does very well at it, and likes working behind the altar, carrying candles, helping with communion, handing out blessed bread. It is all a great fit, and I am grateful for a church that does not require his intellectual articulation of his faith in order for him to be baptized or have communion.

Fellowship and him being within the church was also easy when he was little and cute. He was there, playing with whatever group of kids were of his age and mentality, and it worked. I did mention, previously in this blog, that kids have grown up past him and that he has gone through many mini-generations of friends at church, but at least he had friends.

I believe our church really wants to love and include Ben. The biggest problem is that nobody (including me) really knows what that looks like.

As Ben has grown older and looks older (he has to shave now, about once a month or so) he is not so cute in the eyes of people, and for those at church who did not 'grow up' with him over the past 10 years that we have been there, they are not so sure about him --- not on the playground with 'littler' kids, and not in general as to his responses, or lack of responses, nor just with his trying to fit in and hang out.

It's not just church, it's just the world in general, but I find it most painful to deal with at church, perhaps because one has high expectations of the Body of Christ, and so one thinks that people 'ought' to understand or have some enlightened sense of compassion for Ben, which most of the time people don't. They have their own little worlds and they operate in those worlds, and when Ben is in the way or seems not to fit, they mark their boundaries-- most of the time to the exclusion of Ben.

I think society explains Down Syndrome as basically a mental delay, so that Ben is understood to be mentally about 5-8 years of age, with 5-8 year old emotions, and so the impression most people have is that he can be treated like he is 5-8, he can be expected to obey, share, etc... and I have mentioned all that before.

For Ben (and I cannot speak for other teens with Down's) that does not really work. He is 17, not 5. He has more complex emotions than a 5 year old and he understands the rules and knows the behavior expected of him better than a 5 year old. What he has is a mental processing deficit that doesn't make connections that sometimes even 5 year olds would make.

In addition he has a huge disadvantage in that when he gets in conflict with a person, he cannot verbalize his position, his emotions, or his anger because his expressive language skills -- due to cleft lip and palate, due to a moderate hearing impairment, and due to Down Syndrome -- are about at a two year old level.

As a result, when he is in a situation of conflict (like someone telling him he is too old to play on the playground, though he knows he has a special permission to be exempt from the playground rule) he will resist because he knows he is right, but he cannot say why, and usually he will lose because the person who is telling him  ______________(to leave, or to return an item that is thought not to be his, or otherwise to comply with a request) wins the verbal combat. He then gets upset, and he has hit people in frustration, though most of the time he just runs and hides somewhere in a corner where nobody can see him.

I understand the frustration of an adult who is trying to keep order somewhere, who doesn't know how to relate to a kid with special needs, that is hard. What I do not understand is escalating a situation with such a kid when the kid is not really doing anything that is immediately harmful or threatening to anyone. (Of course if there is immediate risk or harm, intervene at all costs).

With a kid with special needs... when in doubt, show mercy. (I would almost use that as a guideline for dealing with all kids, but  CERTAINLY, I would use that for kids with special needs.) Why would I want to risk upsetting a child whose emotional apparatus I do not comprehend? In that case, why not call the parent and get a little help on the issue, rather than risk a situation you don't know how to manage on your own... or risk a relationship with a kid you don't know well enough to really engage with to start with.

That would be my biggest frustration with church --- the number of people who are willing to engage in unpleasantries with a kid with special needs, merely in order to enforce a rule or uphold what they find to be a 'higher principle' -- and who do not think of the emotional consequences for the kid.

I think that is worse in church than it is 'on the street', simply because church so often becomes this high-minded quest for all the correct principles, for the perfect ideology, and once that ideology has been fleshed out in detail, all one has to do is follow it --- and to 'hell' (pardon my French) with persons.

Persons with special needs do not fit all these neat boxes we can set up for what kids (or for that matter) people) OUGHT TO DO: For every box you have, be it an age box, a noise limitation box, a no-squirming in the pew box, a MUST STAND at certain times box, a don't take too much food box, a don't hog the swing box, and worst of all, the no hitting box... all these things that we OUGHT to be able to do, the kid with special needs and even the adult with special needs will not always be able to fold up and crawl into the box.  And when he fails to fit in the box, the social cost to him is high as there is great disapproval from the majority of people, and with that disapproval comes the sense that ' this is a simple box to get into, even HE ought to be able to do this .'

And then there is the parent -- and that is me.  The parent does not always take it well when you decide to take on her child---especially not when he was doing no harm. Mom's attitude is that any time he is not harming something or someone, and if he is otherwise having a good time, -- pardon me, but 'screw the rules!!'.

 Momma Bear comes out.at you--especially if her kid ran off and hid after you decided to escalate an encounter with him.

Remember ... and I just read this in a book called Special Needs and the Church.... remember Mom spends all her time fighting the school system, the social services, the right for junior to participate in all sorts of age segregated stuff, so when she finds junior thwarted at Church, she goes on auto-pilot and brings out all her fighting skills that she uses for him in the rest of the world. Yes, she OUGHT to do better in church. Yes, she ought to be patient and kind and understanding... but she too is exhausted, tired of the same old same old ever fighting for her child's rights to live and breathe around other human beings, tired of always being on 24/7 call because unless she is near junior most of the time, something will happen, and someone will think junior ought to be able to do something he cannot do, and as a result, she will WISH she had been there and not taken that ten minutes to herself to chat with a friend while junior ran off.

No, it's not usually that bad all the time, but these things come in seasons, and they come with certain personality types who for one reason or another think that mom isn't doing enough to keep junior reeled in. You know it with typical kids as well. There are always people who think you don't do what you ought with your kids. Multiply that by 10 when it comes to a developmentally disabled kid who might slug another person (yes, I agree it's unacceptable, but it happens) or who might accidentally expose him or herself because his social skills and sense of where to scratch what is not particularly heightened.

Mercy !! And I will end with this diagram (Carolyn Vance's) .Text is from Shakespeare's Merchant of Venice.

Thankful

There is so much to be thankful for in this dear world of ours, and it comes in unexpected packages. I remember my daughter saying just a couple of weeks ago  that so many people are so very kind to her.

Down syndrome and thankfulness -- my fear of writing a blog on this is that I will sound like PollyAnna, and while I do believe that grateful people are happier, live longer, get along better with others, etc, I am not a huge fan of PollyAnna. Her modes were a bit naive, trite, and predictable, and not entirely logical (at least not to me).

My experience with Down's was limited prior to giving birth to Ben, but I did have a neighbor who had a baby with Down's just before I left my parent's home. I remember him as a fairly placid baby, happy, content.

Most importantly, persons with Down syndrome are persons, so they have their ups and downs, just like the rest of us. The naive blissful happiness of eternal childhood, as I mentioned before, is a myth that the rest of us like to have, perhaps because it makes us feel better about the plight of persons with Down's if we think they are happy all the time. (And the trouble statistic is that teens and adults with Down's have a 10% incidence of developing autism and some 7% chance of developing depression --- both due to social isolation and a lack of control over or meaningful activities in their own lives).

But back to thankfulness, my son is a very positive person. He is cheerful and energetic every morning when he gets up. He is helpful with dishes, laundry, cooking, clean up. He is emphatically in tune with his surroundings--- in fact, I don't know a more consoling and empathizing person than him. He is outgoing and fun when we are out in the community, and he likes to greet everyone he meets, and is always ready to smile at anyone who gives him the time of day. And he is grateful for very little. A quick game of UNO, a donut, a pat on the back... anything that affords him contact with others.

I think what I am most thankful for is that he is not only thoughtful and considerate (I come home from a five minute drive dropping Kirsten off at the bus stop and he has made me tea and toast for breakfast) but that he is honest and lets me know when there is something he does not like. He is not so eager to please that he lets others bowl him over, or have others do things he thinks are wrong.

When he was born, a popular little story for new parents of children with Down's  was 'Welcome to Holland', which has a little bit of PollyAnna in it.
http://www.our-kids.org/Archives/Holland.html
The gist of the story is that you were having a baby and you find out it's a baby with Down's... and that this experience is likened to you were going to Italy on vacation, but by mistake you end up in Holland.  Holland is different-- different language, different food etc, You need to adjust. You have no choice. Italy is now out of the question.

The important 'lesson' from the story is that you can spend your days mourning your losses and never enjoy Holland, or you can adjust and make the most of it. And that is good and true, and for a new parent, who has never thought through these thoughts, *Welcome to Holland* can be an important first step in adjusting --- along with connecting with others who are also in 'Holland'.

But long term I find the issues more complex. There is a daily dying to self and dying to the reality that most other people enjoy with their 'normal kids', that the Holland analogy was never meant to answer or account for. It crops up in the little things, and some times in the big things, and quite often I find myself having a mini-mourn over another little hurdle that Down syndrome brought... and then I move on, accepting what is, celebrating what is fun, good, funny, or down right profound that parents of 'normal kids' would never enjoy or experience.

But Down's is more than Holland. Holland is a different culture and a different climate and language and so forth, compared to Italy. But Holland is not functioning with 50% less intellectual capacity, a slew of additional medical issues, along with the inability to take care of oneself or get a full-fledged participatory job in the job market.

Down's is Down's.

Analogies get one only so far, and then one has to look Down's straight in the face and realize that this is the life my child has been given, and while I would never be 'thankful' for the many  Down'sian medical components, many of them life threatening, of that life (that tiny 3rd pesky chromosome on pair 21), I am thankful for my child, AND for precisely who he is.

If it were not for Down's, he would not be who he is. And so in that sense, because I know this person, and this is who that person is, I am thankful that he has Downs or he would be someone else. And since I do not wish him in any way to go away or not be there. I am thankful for precisely who he is and how he adds to my life and to  the lives of all that I love.

And now it is time for him and me to play a round of iPad bowling before going to bed.

Tomorrow is Thanksgiving, and there is nobody more excited about holidays and birthdays than Ben. He will be by my side cooking the turkey, the gravy, the stuffing, and all. :)

Acceptance, Awareness?? All trite terms, and how do we?

I talked in my last blog about the isolation of individuals who are developmentally delayed and of how society as a whole views them and to some extent subconsciously avoids them.  And I don’t mean ‘society’ in the Jane Austen sense of ‘those we grovel at, so we get to be part of the in group’, but merely people whom we naturally rub shoulders with, like extended family, neighbors, church, sports clubs, parks, work.

Last time I also mentioned how we sometimes talk to young adults and adults with special needs as if they were six—in a sort of preachy moralizing tone that goes on and on and bears down on the individual with the aim of generating some level of shame in the individual ... and then last night I was so totally guilty of that very behavior. Ben was taking a bath, and of course we extend the same level of privacy to him that we extend to any other member of the family (or, we try to, but we don’t always succeed).

You see, the issue is that he does not have too much sense of how much shampoo and bubble bath to use (he loves bubble bath!) and we don’t really want to add weekly bottles of Ben shampoo and bubble bath to our grocery budget. So I do monitor the use of supplies by giving out appropriate amounts at the proper times. Or at least, so far, I have not found a better way to deal with this.

What do I behold when I enter, but a bathroom which evidences the remains of a massive tsunami? Totally understandable, really, when one considers that he was playing with all his Matchbox sized Cars II vehicles. :)

Well, it is not the first time I have mentioned to Ben that tsunamis in the bathroom do not come highly recommended. This time I turned up the tone in hopes of generating some empathy for my cause. Problem with us adults when we deal with six year olds is that when we are out to make an impression, we feel that we have to put the emotional stakes high enough that there is a threat/intimidation level present in our message. Once we drive that message home, we forget to quit. Instead, we go for broke—just in case--especially if the kid in question does not respond as receptively as we would expect him to.

Basically we parents don’t always know when to quit. Nor when to employ alternative creative strategies which in the long haul may be more effective. At some level I think it’s called emotional unloading. We are wrought at what we have seen perpetrated at the hands of this ‘kid’, and we need to bring ourselves down from the emotional high, and we achieve this by not shutting up in a timely fashion :P .

One time my daughter got scolded by a lady after church for sharing a laugh with another kid during a church service. My daughter was outraged because the accusation was actually inaccurate (she didn't laugh, she only smiled at the other kid). Kirsten, being my daughter, tried to argue with her, but the lady would rant nonetheless. When the lady finally left, the other girl who came from a family of five and was used to being lectured at  told Kirsten: “Just say you are very very sorry and that you will never do it again, and it will be over a whole lot sooner.” :)

And it was precisely that strategy that Ben used with me last night when I was trying to impress on him the necessity of not flooding the bathroom floor when he takes a bath. “Yes. Ok, I am sorry.” In fact, he is most agreeable, and it's precisely that strategy of "if I agree with her, she will shut up sooner."

All that to emphatically say that what I preach, I don’t always practice as well as I wish I did.

But back to my main concern and discussion about acceptance of persons with mental disabilities. It is a difficult issue, partly because so many of the persons who would be born with, f.ex. Down’s, are selectively aborted. We have effectively purged from our society about 2/3 of such individuals (my rough guess based on some statistics I heard in the Danish news) and as such, fewer of us deal with these persons, and even fewer of us begin to have a clue as to how we should best deal with such persons. (And by no means am i trying to give the impression that I have all the answers... on the contrary, I have all the questions, because I live with this all the time!)

In the 50s and 60s persons who were disabled or mentally ill were more or less incarcerated in group homes, and we saw little enough of them. Now, for the mentally ill, we see a significant number as homeless because they do not know how to deal with modern living. For the mentally disabled or developmentally delayed, we—society—do (does) have the good sense to realize that they do not have the judgment or capacity to live alone, let alone make a living, but integration is not a simple process, and as I hinted at, while we’re awesome with toddlers of whatever stripe of delays, we’re not so successful with adults.

Adults who are developmentally delayed (which is often code for permanently delayed), are ‘there’, sort of, but not really there either. We smile and greet them. We may even give them a high five. Some people (actually quite a few) laugh nervously at everything the developmentally delayed person says, as if he were a cute four year old. Let me put this strategy to rest immediately. At least for my son Ben, there is nothing he hates more than the friendly nervous laugh of a random stranger (or an acquaintance from church). In fact, most of the time Ben says, “please don’t” when people do that because he feels so not included when there is a laugh and he usually internalizes the fact of the laugh and thinks the person is laughing at him, and that hurts him.

My honest feel for what we—society—don’t get is what it means for a person with Down’s of, say 25 years of age, to be an adult. We don’t know how to talk to the person, we don’t know what the person ought to be doing. If we are in America, we also don’t know who should be paying that $150-$300 per day care for that developmentally delayed person after age 21 or 26, depending on the state ( and trust me! Neither does the devastated parents of that developmentally delayed person). But I will save the money and adult care discussion for another day and limit this solely to social interactions.

Adulthood, at least in America (I can’t speak for the rest of the world) is an earned proposition. We rise to a certain level of responsibility. We acquire independence through proving that we are capable of assuming the responsibility. Nobody takes care of us any more. We have fully arrived at adulthood. With that adulthood comes independence and with independence, the respect and the esteem that every person aims for.

How can we bestow adulthood on persons with developmental delays when we as parents can barely muster it for our own late teen and early twenty college students?

Financial independence is the one  (and greatest) measure of adulthood in America.

And yet,  since we bestow legal adulthood on anyone 18 and above, we have to think broader in terms of rendering respect, understanding, and acceptance to individuals who are 18 and over, but who do not meet the independence criterion for adult hood.

18 is an artificial legal line that has been drawn for smoking, voting, military service, and age of accountability for criminal behaviors. If financial independence is the ultimate measure, my son with Down’s will never reach an age where he will be greeted as an equal or respected in his own right. And with him go scores of other persons with disabilities, as well as a slew of college and graduate students who ostensibly could get there, but who are taking the long road to adulthood and respectability.

Can we redefine adulthood without diminishing the expectations of the average typical person to eventually (the sooner the better) reach financial independence and responsibility for his own actions?

Or can we at least define adulthood for the special needs person as having 18+ years’ experience of life in the body and mind that God gave him? And as a result of this, can we choose to try to treat that person with the respect he craves?

Remember, unlike typical adults, the person with Down’s is expecting very little of your interaction with him. He is happy to share a donut or a cup of tea, or merely to be allowed to sit next to you. He does not cringe because you have nothing to say to him. His ability to sit in emphatic silence is something the rest of us could learn from. Silence is part of his life, much of it (and especially my son who is hard of hearing and speech delayed), and so long as it is a pleasant environment, he does not always require any conversation directed neither his way, nor any conversation at all.

 When he wants to talk he will use his electronic device, write on a piece of paper, or simply try to articulate what is on his mind. He expects little of your return talk. If you receive his talk positively (and that simply implies that you listened), he is content that he made a connection. Rarely does he even require a specific response.

I am not advocating anything here that needs to be legal or enforced. I am simply looking for 'awareness' (however trite that term has become nowadays). In particular for those of us who strongly advocate that abortion of mentally challenged babies is so very wrong -- we need to carry that principle through in terms of support of parents who 'choose' (and yes, it is a choice, since Roe V. Wade) to keep their disabled children, such that society is welcoming to these disabled individuals when they become adults.  And that requires some level of re-education as to how to interact with these 'NOT perpetual children-neither in mind nor in body' individuals.