A more Accurate Portrait of Down's

I recently was surfing the Internet with the search terms Down Syndrome, Adult, Mental Health. Such searches usually occur to me after times when my son has been exhibiting a series of behaviors which are more challenging than his normal-but-still-challenging behaviors. (In the past three weeks we have had to deal with multiple behavior issues at day programs, including, but not limited to, running away, throwing things, hitting people, wiping an entire piece of speech software off his iPad,  turning off his GPS watch -- and very cleverly done on the day when he later ran,so we couldn't locate him.)

Never a dull moment. 

(There is still relatively little written on the Internet and in books about the life of adults with Down's and even less on mental health issues; however I did procure the only published book in the US on that topic and I am happily reading along now.)

But that is not what I wanted to talk about here, what I really wanted to talk about is the 'face of Down's' that so frequently shows up on the Internet. 

Most searches about parenting a child with Down's will bring you to blogs by mothers of cute toddlers and preschoolers with Down's who write hyper-positive blogs about how their kids are just like any other kids. And that claim is both true and not true; it all depends on the angle you take.

Yes, your son or daughter with Down's needs to go to the doctor on the same schedule as your other kids and he or she will need shots just like your other kids. He or she needs clothing, boots for winter, food, and yes, love and quality time, just like the others do --- persons with Down's to paraphrase the Jew in Merchant of Venice: they laugh when you tickle them, they bleed when you poke them with a sharp object... Etc. In short, they are human.

So, where is my 'but'??... You knew it was coming. 

The 'but' is this --- yes, you take your son or daughter with Down's to the doctor regularly just like you would any other child.But in the cases of a reasonably large percentage of kids with Down's you as the parent will become best friends with the pediatrician, the endocrinologist, the cardiologist, the orthopedic surgeon, the ophthalmologist, to say nothing of the otolaryngologist. Kids with Down's have more health problems -- on the average-- than typical kids. That is time-consuming, all those times in waiting rooms, all those times in the emergency room (for some of us), all those therapies and extra check ups. It is NOT just like having an ordinary kid.It is kid ++, the deluxe needy model.

Yes, kids with Down's still need education and they are going to school just like other kids --- but that learning they do in school is much slower, and every piece of learning they acquire tends to be concrete, needs to be broken into teensy bits for them to comprehend it, and it also often requires special education and one-on-one in order for learning to take place.  Again Kid ++, more time consuming, less intellectual yield. 

Is my son with Down's just like my other three kids?? Yes, he is human, he looks like them, he has likes and dislikes... But also an emphatic no. All three of my older kids are financially independent, one is in grad school, one is a newly minted officer in the Marine Corps, and one is finishing his last year before getting his bachelor's in physics. My son with Down's will never get a bachelor's degree. He will never become fully independent.

I would even go so far as to say this, that the early years with Down syndrome (in spite of all the medical stuff --- and we had way more of that than most families with a kid with Down's get to have) -- the early years were easy, real easy compared to late teen and early adult years. The transformation into adulthood has been rough. My son has seen his siblings go and gain their independence and he struggles with the knowledge that he cannot do the same and never will. It depresses him.

People and their reactions to him have changed and I think that has been the hardest part. When he was little and cute, people loved to affirm him and let him know how cute he was, and let me know how he 'really was just like everyone else' (which by the mere need to mention that tells you that they really did not believe what they were saying).  Once Ben got to be about 15 or so and started looking like a teen, grew past 5ft, that changed.Cute was gone and left was a somewhat awkward looking teen with Down's with the requisite teen complexion issues off and on, a teen who cannot speak, whose lower jaw protrudes 1.5 cm beyond the upper lip, and whose features say Down's all over them. 

People -- the general public -- are moderately 'scared' of him, as in, they do not know how to address or greet him, and if he acts strange, like gets upset when a crowd is laughing because he thinks they are laughing at him, they retreat awkwardly away from him, or they actively worry that he might hurt someone or something and they may come across a slight bit aggressive because they worry that somehow they have to defend themselves against this strange boy with Down's.  Benjamin is nothing, if not emphatic.He immediately senses the estrangement and it produces anxiety in him, extremely high anxiety. That causes him to talk to his stuffed dog, or to the wall, or both.At any rate,the more nervous he is the more he self talks and the more agitated he is when he self talks. 

Down syndrome is more than cute kids growing up to near-normal perfection where one almost 'cannot even tell that they have Down's'.

I suppose these hopeful myths are told in an attempt to soothe brand new parents. Perhaps, also, a certain subset of the population labeled 'parents with kids with Down's'  crave that assertion of normality for their new babies with Down's,  even if deep inside we all know that it is not true at all. To raise a kid with Down's is to raise a kid who likely will have more health issues, who likely will be significantly slower in learning material in school, and who likely will never get past simple concrete cognitive skills. It is to raise a kid who likely will always be dependent on someone else to handle his or her finances, health, and living expenses and situation. 

It is not a picnic, folks.And given that close to 50% (if I got this right) of persons with Down's acquire some mental health diagnosis during late teen early adult years, the job of parenting a teen or adult with Down syndrome can at times be extremely time consuming and also exhausting. 

Why this more accurate portrait? Well, I recently acquired "Bright-sided:  How Positive Thinking is Undermining America". Positive thinking to the point of not acknowledging how difficult it can be to raise and live with a person with Down's can leave you thinking, when you get into the teen years, that there is something wrong either with the way YOU are raising YOUR kid, or perhaps something wrong with your kid with Down's. I found it challenging and completely unexpected to have a mental health diagnosis added to an already impressive list of diagnoses for my son, not to mention I was SO unprepared for such a turn of events because everything I had read, all the positive parents I met, did not squarely face their issues publicly. 

We are conditioned in America to only talk positively, so there are few enough places where one can be honest about how things really can be on some days, and the result is isolation  and inability to know how to deal with the issue. 

It is not easy to raise a kid with Down's--- not even in the toddler years. It is even more difficult in the teen years because of the many natural 'teen' issues that are difficult with typical adolescents which are then even more difficult with teens with Down's because you don't know how to deal with them, the person with Down's doesn't know how to deal with those issues, and worst of all THE WORLD does not want to acknowledge the physical, emotional, and least of all sexual maturity of persons with Down's (who appear in the image of the unwashed masses FOREVER CHILDREN). 

I am not trying to spell doom and gloom, but I am trying to spell reality out here. The cute toddler is gone,  the 'almost like us' grade school kid is gone. What is there now is a young adult, yearning to have his own place, yearning to make his own decision, yearning to have a girl friend and move far away from his parents like his other siblings have done --- but unable to do so.

Navigating the waters of young adulthood, finding the balance between either cracking down on immature (8 year old) behaviors in a person with 20 years experience or letting that 20 year old be an adult in his own right, that is like untying the Gordian knot (and no, I do not recommend using a sword!!).  It takes the wisdom of a Solomon and the patience of a Saint.

I am neither. 

I am the mom of the kid who hit your kid....

 The kid who throws things, the kid who gets out of control upset and does not know how to self calm.

Am I embarrassed? blushing? Do I feel terrible? Did I raise him wrong? Does he do this at home? Do others at home hit him or does he hit others at home? 

Hmmmmm? Yes? No? Maybe?

My son has Down syndrome. He also has OCD, obsessive compulsive disorder, a disorder that 5% of teens and adults with Down syndrome suffer from. The way the OCD expresses itself in my son is that he displays autistic like behaviors that sometimes results in aggressive behavior because he gets so anxious when he is in an over stimulating environment that he lashes out in order to get control of the situation. -- And it works. When he slugs, everyone stops whatever they are doing, he is pulled to order, put in a time out or sat down somewhere where he can cool his head and breathe deeply until the anxious feelings leave his system.

He gets anxious in big crowds where people are laughing. He thinks they are laughing at him. He gets anxious and overstimulated  on the dance floor where everyone is hyped, and he most of all. He gets anxious around people, and he seeks relief.

Should he be hitting your child? No! And I am terribly sorry, and I honestly would do anything I could for that not to happen, but I don't know what I can do, other than advice those in charge of him. 

I am not there when it happens. It is in school or in big day programs, and I don't think the people in charge see it till it happens, whereas we in his family see it coming and ask him to take a time out and calm down. He does not want a time out, but he needs one, and people in charge around him need to help him take a break before he gets to the point where he lashes out. He needs to breathe, calm down, get a drink, sit until his heart stops racing, until his breath is under control, and then and only then should he get back into whatever activity he is in (dancing, water sports, ball games, races). 

Does he do this at home? No. He doesn't need to. Home is a very quiet environment, not super stimulating. I am in charge and he knows and respects that, and the environment is also extremely predictable and routined. 

Ok, so at church when my kid is there (19 year old son with Down syndrome, looks like he is 13) and other kids are there -- my son wants to be part of the group, he likes the toys the 8 year olds have, he loves to swing, he loves to slide, he loves to run in a crowd while yelling loudly, just for the sake of doing so. But he cannot. It is scary to other kids, he is too big, and he has too little control of his own limbs. So is he included? No. It seems more and more impossible to actually include him in anything. Since the diagnosis of OCD (and more importantly the persistent behaviors that indicate OCD) he is limiting the social interactions and fun he wants to have more and more by behaving in ways that exclude him from the fun things he loves most. 

There is a tragedy associated with disabilities and in particular with persons who struggle with mental health issues. Not only do they not fit. When they try to fit, or when we try to fit them in they behave in ways that quickly exclude them from the activities they would like to join, and in the case of my son, while he knows right from wrong and knows he should not hit, he also has very little self control over his emotions when he gets sufficiently riled up.

Ok, I am not mentioning this so anyone will feel sorry for us. But keep this in mind when a seemingly 'normal' kid -- out of control -- crosses your path. You cannot tell by looking at the 'packaging' the face, the hair, the body size, whether that kid is fully in command of his own emotions.  In the case of my son, the stereotype is that kids with Down's are so mellow and always happy and sweet. Well... Maybe so, but not he.

A Confession

(Inspired by a writing exercise in my special needs writing group.)

 

Domestic pain can be searing and it is usually what does us in. It is almost indigestible. ~ Anne Lamott

Dear God, 

Hear my confession! I was here last month. Same story, second verse, much the same, an not much worse. But not much better either. 

"Sign the book," Ben demands in his non-verbal way by putting it on top of my bowl of oatmeal, pen attached. 

"No," I repeat. "Ms. K. Said she was out Thursday and Friday. Today is Friday, there will not be anything to sign. Put the communication book back in your backpack, we need to go, or you will miss the school bus." I push the book across the dining-room table. 

He pushes the book back towards me. 

"Ben," I says, "it is time to go." I shove the book in his backpack, yank up the zipper. Then I guide his reluctant footsteps out the door, down the stairs, and into the car -- his face, downcast, scowling, refusing to look at me. 

"It's the OCD, it's the Down's", I think to myself. "Every morning has its routine. One of the routines is for me to sign the school communications book during breakfast, then I hand it to him, he reads what I write to this teacher, nods with a smile, and puts the book in his backpack -- but not this morning..." 

We wait at the school-bus stop in silence. No hugs, no "I love you"s or goodbyes when the bus pulls up. 

"Poor sub in his class room today," I think to myself as I drive down the road towards Lakewood. But... Why did I pick this battle? I could have just signed the #@%& book. I could have written anything in there, even if the teacher did not write any notes to me yesterday. If I had done so, our morning would have turned out differently. Why didn't that even occur to me? 

And then... the usual conflict in my mind -- the familiar spat where half of me wants to accommodate his OCD habits and the other half of me wants to stretch his flexibility -- begins to run in its familiar grooves. When to push, when to yield? For the next twenty-three minutes, as I stop-go-stop- go down Wadsworth Parkway, I feel like a louse. As Anne Lamott says, "Domestic pain can be searing and it usually is what does us in." 

Fast forward to Saturday night ... Ben opens his backback after a weekend sleep-over, and the first thing he hands me is the $#@$& communications book. 

I sigh, but this time I am prepared to sign. After all, it really doesn't matter, does it?

Ben flips through to the very last page, and holds it up to my face -- close, very close. I grab my reading glasses and pull the book out till I can focus.  

Entry -- Thursday: Ben had a great day, we made muffins. Signed Ms. Miller (substitute teacher).  

Entry -- Friday: Ben enjoyed frisbee and a math sheet. Signed Ms. Larson (substitute teacher).

Yes, my son has OCD and he has Down syndrome. He likes routines. But ... He is so much more, and I do not always believe or remember that. When Ben acts, sometimes I see OCD acting, or I see Down syndrome acting. 

When he looks at me, what syndrome does he see? What label can explain my inflexibility, my blindness?  

God have mercy on me, and help me 'see' -- really see -- so I don't inadvertently inflict pain where none is needed, not for him, and not for me.   

--- Amen. 

 

Art is Ben

It has been a while since I blogged. Benjamin is finishing high school tomorrow, and subsequent to this, all art from this school year came home this afternoon. 

I loved what he did in his painting class this year:

Splashes of color, some abstract, some drawing. Here is his master piece on canvas "Under the Sea":

Then there is a bit of nature:

... and some favorite cartoon characters, including ANGER from "Inside Out":

Mosaics and abstracts,

And here is the artist -

Meaningful Activity for the Developmentally Disabled

What constitutes meaningful activity for a person with disabilities?

A friend of mine reported coming home to his disabled son. My friend greeted his son, cooked dinner, and then kicked his feet up with a book to relax. The disabled son just sat on the couch and stared at Dad until Dad was done reading and ready to entertain.

Meaningful activity is difficult for many of us to engage in. How many so-called typical teen boys get out of school and spend the rest of the day on video games? How many of us waste untold hours on Facebook, Twitter, or just browsing the web? How many of us watch poorly written formulaic TV comedies or crime dramas after work, just to kill time?

Well, time is the only thing we really own that is our own precious commodity, and we are all – so long as we are alive -- given the same 24 hours per day, regardless of our social status, income, health, intelligence or emotional IQ. 

What constitutes time well spent? What constitutes meaningful activity?

Well, our adult sons and daughters with developmental disabilities or mental health diagnoses struggle even more to fill their lives with meaningful activities. Whatever they are capable of, so many of them need active support from another human being to be able to do work, and when that support is not available, they have few choices left – namely watching a movie, listening to music, playing on the iPad, all entertainment-style options.Well, not really true. But the above options are easy. Just hand junior an iPad and you may just have purchased peace for the rest of the day. 

My son likes to color, do math problems, play board games, help in the kitchen, fold laundry, and many other things, but when I am home and I am busy working, if he can resort to a movie on the iPad, that would almost always be his top choice.

I have experienced the situation I mentioned above where I sit and read a book, and suddenly a pair of eyes are staring at me, just staring and staring while I try to read. They will keep staring, either till I chase them away, or till I drop my book and engage with the person. (It feels much like eating at the dining-room table while your hungry dog sits at attention with his most intelligent look, staring right at your mouth, following with his eyes every chewing motion your jaw undertakes until you throw him a bite. In short, it is annoying and unnerving and it is hard to continue what you are doing with such vigilant eyes on you.)  -- And while I sympathize with my son waiting and waiting for me to do something to entertain him (much like 5 year olds would), I also feel a need to carve out a minimum of minutes per day where I can recharge and relax on my own without being ‘on’ all day --- first at work, and second at home taking care of my disabled son.

So, when you picture parents or caretakers of persons with disabilities, picture persons who are almost always ‘on’, either at work or at home, being ‘with’ their persons with disabilities, engaging with them, instructing them, or keeping them safe. “Meaningful activity”  is, in my view, whatever keeps Ben engaged, happy, and for some amounts of time, also intellectually and emotionally and physically stimulated. That involves physical exercise, fun and games with family members and friends (bowling, board games, conversation), it involves self care and home maker skills – personal hygiene, taking care of possessions, learning to be safe in public, learning to get along with others, as well as cooking, doing dishes, doing laundry, cleaning one’s room, cleaning the bathroom, etc. It also involves some job training for skills and also academic pieces, as in continuing education. Job training and part time jobs with support will be available to Ben if I can figure out the transportation piece of getting him from day care to some part time job on a regular basis while keeping a full time job myself. The academic piece is not available after public school ends, so that one I will have to bring to Ben myself by what I choose to do with him at home, and that will involve continuing the 3 Rs.

What is meaningful activity for Ben at Church? Well, the service ‘feeds’ him. He likes to sing and pray, and we go to a liturgical church, and the routine suits him very well, since he knows what comes next and enjoys the routine. Outside the service, in Sunday School, there is no meaningful activity for him unless I or generous friends who care about Ben try to design it. He does not fit with the kids, he does not fit with the adults for the free time of fellowship. He does not fit in Sunday School anywhere, and it is times like that, (along with ‘dead time’ at home when I need to get stuff done that he cannot participate in) that caused me to reflect and think about writing this blog.

So often our adult children with special needs are warehoused (are kept warm, fed, and safe). Often they are simply there. Yes, they are ‘included’ in the sense that they are allowed in the room, but there is nothing for them to do other than to sit there and stare at those who are actually doing something. Sadly, at least in the case of my 19 year old son Ben, he struggles to think up his own things to do. He is not, generally speaking, a self starter any more than most five year olds are. Think of him as your typical five year old who reports to you that he is bored, and then he stands there and stares at you until you find something for him to do. He is not lazy, but he has learned, over the years that the things he can do, he cannot do as well as most people can, and therefore he is happy to stand back, passively, and let others do.When he does attempt something, he often fails as he tries to recall in his mind how he saw someone else do a certain task. That repeated failure is unpleasant, and therefore he avoids those things which he struggles with (just like we all tend to avoid things that bring repeated failure).

Meaningful activities – For special needs it costs a lot of money and a lot of time, in attendant care, in modifications of equipment, jobs, and entertainment, to generate it at a level that the developmentally disabled can participate with.  It is crucial that our developmentally disabled do have meaningful activities. Everyone wants to be useful, and the developmentally disabled no less than any of the rest of us.

Merry Christmas

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."
Isaiah 53:2 

It goes, perhaps, without saying that the special needs community (persons with special needs, their families, friends, and service providers) is as diverse as the rest of the world, and as such, the views on how to include, what to include, where to include, etc are as varied as the number of people in the community. 

But it is not just our political, cultural, and religious backgrounds that cause us to differ in our approaches to inclusion, it also has a  lot to do with what sorts of special needs we are dealing with.

My son Ben has Down Syndrome plus. (My nomenclature, offered without apology). His cleft lip and palate, severe heard defect along with various co-morbidities that accompany such physical diagnoses, affect his abilities to hear and to speak. His speech and hearing have over time isolated him enough from even the typical peer interactions that more healthy youths with Down syndrome are able to enjoy, that he has acquired the additional label of Obsessive Compulsive Disorder.

Now, all this to explain where I fall on the special needs spectrum in terms of how my approach to disabilities came about.

I do not have one of those "YOU CAN DO IT IN SPITE OF DOWN's" sons. My son will not lose 60 lbs and suddenly become a handsome body builder with Down's. He will not, through my "Asian mom-style" teaching suddenly become the only kid with Down's in his high school to pass a non-modified consumer math class. Nor will he take a small speaking part in the school play to "prove" that he is really just like the rest of the kids in high school.

It may feel good and natural for parents with extraordinarily talented Trisomy 21 kids to have their daughter with Down's be a cheerleader, or have a son sing the national anthem at a big sports event. I am not discounting the pleasure of such an exhibit (for the disabled person, his or her family, and his or her friends). Some may even find such feats inspiring, and if so... why not enjoy the inspiration?

For me, however, and perhaps, also, for others who are dealing with a more severe and complicated battery of challenges, this 'just like us' mentality, which is demonstrated by getting one exceptional person with Down's to do or act the way typical peers act, is not only discouraging, it is out of reach. 

Not only is it out of reach, the 'just like us' mentality can also, without meaning to, devalue persons with disabilities who will never achieve such a 'just like us' moment. The humanity of a person with special needs cannot/should not be measured by (parent, school, services)'s therapeutic abilities to support a disabled person to perform at near-typical levels in one isolated splinter skill. Not only does such an achievement not 'typicalize' the person with disabilities, over-valuing narrow therapeutic foci runs the danger of only valuing persons with disabilities when they overcome a deficit. It also runs the danger of devaluing other persons with the same disabilities who cannot attain that one splinter skill at the same levels of performance. 

My humanity cannot, indeed should not, be evaluated based on the skills sets I have been fortunate enough to acquire, given my physical, emotional, intellectual, and spiritual gifts in life. Any one of my gifts can be 'snuffed' out in a moment of misfortune, no matter how gifted I might have been at birth and on.

My humanity, your humanity, the humanity of all persons, including those who -- to a greater degree than most of us-- struggle with physical, intellectual, developmental, and emotional challenges lie in their being born human. Our respect for the value of all human lives must begin and end there, regardless of whether they can walk or talk, regardless of whether they can regulate their emotions, count to 100, or feed themselves.  

Life matters, and yes, we all matter, but some of us are more at risk for not mattering, namely those who have been mistreated, misunderstood, ignored, and devalued. 

He came to us as a little child, humble and helpless. There was 'no room' for him at the Inn. He was not valued, welcomed, or noticed.... because ....

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."

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