Be kind, for everyone you meet is fighting a hard battle

It is estimated that up to 50% of persons with Down syndrome have acquired some sort of depression, anxiety, or some other mental disorders by which they cope with the loneliness that often comes with their intellectual disabilities. (Mental Health Issues and Down Syndrome, National Down Syndrome Society) 

It is also estimated that during a 12 month period, as much as 10 % and perhaps all the way up to 26% of the population of the United States likewise suffer mentally in some fashion. (Understanding the Root Cause of Anxiety and Depression, Animals in Research and Teaching, University of Wisconsin ) That should give us pause to think about the people that cross our paths. Note in particular that ages 18-25 are the most prone. I often wonder, in my college classes, how many of the precious men and women who struggle through some of my gen ed classes are already on overload.

Ben is 18. He is in that category, and he has suffered significantly more with finding his purpose, identity and sense of belonging, since growing up and watching his siblings move out. (See my blog about Empty Chairs and Empty Tables).  

Most specialists we consulted this year, as his mental health deteriorated, thought  Ben was autistic -- certainly he had the circular, self-stim, self-talk, rigid approach to life,  transitions, and change that one would expect from an autistic individual. All evals placed him on the autistic spectrum, except the last eval -- the augmentative speech evaluation. 

The only psychologist in the state who specializes in Down Syndrome (and thank God for her!) established  after 6 months of  WAY too many appointments that Ben has OCD, obsessive compulsive disorder. 

Because Ben has Down syndrome and because Down syndrome comes with its own peculiar coping mechanisms, OCD in Ben  walks, talks, and quacks like autism. He obsesses over numbers, calendars, getting out the door on time, birthdays. Anything where he thinks he knows how it ought to go frustrates him when it's changed. Today when I bought pair of running shoes at the store, he was upset all the way out the door because the lid didn't properly fit on the shoe box (I had thrown the shoes in rather sloppily). We had to stop and readjust, and all became happy face :). 

[Incidentally, the joke at my work-- as well as from my children-- has often been that I am/have OCD because of my meticulous labeling of my files, my orderly desk, my tendency to work ahead, and my never leaving my office or my lab without straightening it up first. I WILL NEVER consent to that label again, after witnessing how truly dysfunctional and debilitating OCD can be. It's a joke, I know, but those of us who are anal and get a lot done may be obsessive, but it's a functional obsessive -- not a compulsion.]

Ben is not autistic. Ben is social, he wants to connect, in fact, he loves people, but his limited expressive speech skills trap most of his thoughts inside his head. When in conversation, or when people ask him questions and expect him to reciprocate, he gets incredibly anxious trying to get the words out of his mouth (remember cleft lip and palate and an unusually large Down's tongue!) because most of the time the conversation has moved on and he never got one word in.

This year in the spring, I was called to his Sunday School which consists of a cool group of 6th grade kids. Suddenly in the middle of the class he just laid his head down on the table and wept because he could not keep up with the conversation.

Ben's coping mechanisms are self-talk and imaginary conversations in "Ben language" which is largely unintelligible to the general public. He has a stuffed bear named Ben who is a best friend and he processes stuff with Ben the bear. Ben is patient (Ben my son) but he does sometimes melt down. When his every attempt to talk results in nobody getting what he meant, he can go on overload like a circuit board. The switch just flips. In fact, when *I* misunderstand him, he gets down right angry. "NO, YOU'RE WRONG," he yells. But usually I cannot make amends right then and there because he needs time to process his anxious body down to its more normal state.

Ben's normal mode is to have chronic anxiety when out with people. After a misunderstanding -- if it is bad enough -- he will collapse quietly and withdraw to a safe spot, which is a good strategy. The problem arises mostly when folks insist that he stay and deal with the situation. That is when he may make a scene. The scene is simply signaling for people to back off and let him recover his energies as only he knows how. 

I shared Ben's recent diagnosis with a wise Ukrainian lady from our church, and her comment was this --- that for every Ben out there, struggling to connect socially as he grows older, there are 10, perhaps 50 kids that walk and quack "normally" (whatever that means) who suffer the same degrees of social anxiety. Some of those kids grow up to suffer as adults too. It just breaks my heart, and it reminds me to be kind to kids, even kids who are difficult to love!!

Kids will act out and let you know they suffer. Adults do not. They hide, and Ben who is now an adult hides with them. He hides with movies, he hides by obsessively writing calendars that go all the way through 2019. On those calendars he writes birthday after birthday, his own, his mom's, his dad's, his brothers', his sister's, his teachers', his class mates' -- anyone he can think of -- and if he does not know your particular birthday, he might just make one up for you and give you one of his hand made cards anyways.

Birthdays are happy, they are safe. Everyone is accommodating on birthdays. They -- along with Christmas and Pascha (Orthodox Easter) -- are the safest, coziest, most loving days he can think of.  So he creates them daily by writing calendars, imagining birthdays for his stuffed animals, and writing scores and scores and scores of birthday notes to all family members and friends.

Or as in this case, mimicking his sister's graduation by writing his own graduation invitations:

Ben goes through an amazing amount of paper during one afternoon when left to himself. He also plays Yatzee or does iPad bowling while meticulously recording each score for each roll. It is a world he can control, he feels safe, and he feels productive (even if he really isn't). But this is OK. It's one way for him to cope, and cope we all must. 

I derail his circular behavior when it has gone on long enough, or when -- as is not infrequently the case -- it interferes with his getting ready for school, going to bed, or with his general self care. 

For the school year, Ben and I operate with schedules. They do on the one hand feed his OCD --- but on the other hand they add to his functionality... i.e. he is productive when following them, so unlike his other dysfunctions (like consulting 4 calendars to make sure tomorrow is really Sunday, and really the 25th) which slow him down and get him stuck in circles, these PEC schedules help him get through his day.

Imagine you have OCD.  Your social anxiety causes you to obsess: "This person is asking me a question, I know what I want to say, but my tongue won't let me say it... I stutter.... why can't I say it? I WANT to say it!!  I can't. I am a failure. Nobody understands. It's too painful. Forget people. But I am lonely, so I create my own routines for feeling befriended and loved." And for a season, they suffice. Until I have this great need to connect again. --

[More sophisticated, perhaps, but we are all socially anxious at some level. We don't stutter perhaps. But we have encounters with people, and then we go home and obsess: "I shouldn't have told him that. I was too transparent. Or I dominated the conversation and I bored him. . Or what I said about my daughter sounded like I was judging the way he raised his own kids. Or when I said that I didn't care about that one issue, I didn't mean to come across callous. Or I never addressed what he said about this issue. He probably thinks I don't care.... etc."]

The good news is that knowing Ben has OCD, I am beginning to see his actions in light of that diagnosis, AND I am going to behavior therapy (me more than Ben it seems!!) to be equipped with strategies for helping Ben weather his days with less storms on the horizon. Not all days are good, but more days are good than used to be. 

There is nothing so sacred we cannot joke about it, however. :)

So in the case of Ben, when you meet him, make sure to recognize him, perhaps compliment him on being such a snazzy dresser,

but don't converse in a way that puts pressure on him to recall answers, unless you have paper and pen and are willing to stand there and exchange notes -- or unless you have a lot of time to spare, engage him in a game of Sorry, Monopoly Jr, Uno, Yahtzee, Memory, or Jenga:

Or if you decide to sit down and watch Phantom of the Opera or Les Mis with him. :) When dealing with him, and with people who are depressed, and perhaps with all of us --- the more time you can generously invest in him, the more responsive, he will be.

There is hope,when we remember to be kind, and remember that most people's battles are ones we cannot know of or even see.

“To love another person is to see the face of God.”

― Victor Hugo, Les Misérables

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. 

Continued Stereotypes of Down Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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