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

...He came unto his own, and his own received him not...

"For he shall grow up before him as a tender plant, and as a root out of a dry ground: he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him." Isaiah 53:2

http://heremembersthebarren.com/2013/01/06/my-suffering-is-a-blessing-contest-winner/

These days tolerance and open-mindedness seem to be in vogue everywhere.  At least in principle.

We've all watched Bruce Jenner in his new female form as Caitlyn trying to raise awareness for his/her plight and the alienation that persons like Caitlyn feel from much the world. The ideal, as it is espoused, is that the world should view such a transformation positively and with acceptance.

Now, I am not here to discuss trans-gender issues or gender fluidity. (I have my views, but they do not belong here and now). I am here to discuss special needs.

Now, unlike transgender people, persons with special needs -- many of them -- have little control over their differences in appearance. And many people, in public, as I have mentioned before, react strongly to persons with special needs -- especially when the special needs persons have grown into the teen and adult years.... when they -- to the rest of the world -- cease to be so very cute as they were when they were toddles. 

Those of us who live with persons with special needs and have friends among persons with special needs are so used to seeing these precious people that we don't even note their differences in appearance and behavior. 

Much of the rest of the world reacts in shock when we bring our special needs children into public. I have previously mentioned that I have heard parents on playgrounds pull their kids close and tell them they won't let my son hurt them. 

This Frankenstein syndrome is alive and well (and Mary Shelley did a great job of depicting that issue in her book). 

It is perhaps by nature that we recoil when we see something unusual like twisted torsos, spastic movements, deformed faces, and missing limbs. Combine that with a bit of drooling, loud incoherent noises, a wheel chair, or a speech device, and you have  "not normal! high alert! not sure what might come from that quarter!" resounding in people's minds. Their natural inclination is to withdraw, circle the wagons, and stay in hyper vigilant mode... just in case. 
Just in case what?? 

Persons with special needs are not particularly strong or dangerous. It's a little absurd to be so scared and vigilant, especially of persons with limited mobility and limited speech. So-called 'normal' people are FAR more dangerous.  (Kind of like when C. S. Lewis commented that our fear of dead people is entirely irrational. What kind of men would be less dangerous than dead ones?)

Back to Jenner for a moment... much as I can feel for anyone who is different who struggles to get the world to accept his or her differences -- I do feel that the emphasis on persons like Jenner is misplaced. persons like Jenner do have a lot of choice about how they want to appear before the world and the level of differences they choose to display  to the world -- all while demanding that the world accepts them as they choose to appear. (Conchita Wurst comes to mind here. A lot of CHOOSING to shock in places where Conchita KNOWS people will be shocked. There is an element of volition here on the part of Conchita.)

Persons with special needs do not have much of a choice in how they look. They are not out to shock anyone. What they are is what they are. And in a lot of ways  I feel that to revolt in horror at a handicapped person the way you may revolt if you do not like the looks of Conchita is a gross unjustice to the handicapped person!! (Not that your reaction to Conchita is necessarily 'mature' or well thought through either, but at least Conchita aimed to shock and if you bit the bait, you responded as expected). 

In contrast, these precious men and women who are born with these 'physical and mental differences' who do not fit the expectations of our  youthful beauty focused culture are treated with gross injustice when we do not check our reactions to them. They may not come across as the epitome of strength, flawless features, and genetic perfection. Many men and women with special needs display unusual body movements -- my son's head is always tilted to the left, he stutters and speaks incomprehensibly, and he drags his right leg because it is too long. He has an enormous underbite, and he makes odd noises, often at times when others would consider noise making inappropriate.  

Now, where am I going with this and why does it matter? It matters because how you receive these persons affects how they view themselves --- it affects their self esteem and long term, it may be part of determining whether they suffer depression in their adult years. 

My son in particular has a speech delay/difficulty which largely isolates him in terms of communication and in terms of being able to relate to people socially. This difference and the isolation that has come with it has caused him to develop autistic like behaviors in order to cope with the isolation, the difficulty in breaking through to communicate with others, and the difficulty in feeling part of any one group. His autistic like tendencies are not any ONE or HUNDRED persons' fault at all. I lay it at the feet of nobody, but I do just want to put it out there as part of who he is because of how he has been received in the world in general. Adolescence and not being so cute any more has been a super hard pill to swallow for him. I am not sure it has gone all the way down to be digested yet.

And frankly, I would 'fault' if I may, Down Syndrome organizations for some of this. When they feature persons with Down's on magazines or as poster children, it's the girl with Down's who became a model, or the girl with Down's who was part of the cheerleading team. It is almost always those persons with handicaps who most conforms to our society's worship of beauty and accomplishment. It is not the average, slightly overweight girl with Down's or a boy like mine with several facial and midline major asymmetries that get picked for the pamphlet or poster. The mantra is usually 'just like us', and then we smear a goodly layer of make up on the girl and say, look how pretty she can be. The mantra is rarely, this is what he or she looks like. THIS is humanity!! This is a person. We love persons, and therefore we love this human being as well. 

Many with special needs feel isolated and not included --- if they don't fall in the category of 'cute' or attractive. Or if they don't fall in the category of persons with good social and communicative skills. These persons have difficulty building social bonds with anyone but their care givers because they get so little opportunity to be included in the main stream of society, even at the most rudimentary level.  

And so, WHEN I see the Bruce Jenners of the world trying to be accepted 'for who they feel that they need to be' (or however that needs to be put to reflect their intentions most accurately), I confess, my thoughts go to people much more in need of support, in need of acceptance, in need of being loved at first sight for who they really are -- namely those who cannot fend for themselves, those who in spite of costly surgeries (I lost count of the number we have done on Ben's face alone) look a bit 'different', and whose only chance of inclusion is a friendly smile, a pad on the back, a "hello, how are you?", a "come swing with us, there is room" from the general public. 

I wish MORE energies would go in the direction of trying to remedy this social ill.
(And I thank my daughter Kirsten for the initial thoughts that went into starting this blog.)

Down Syndrome and Autism

If you are a socially awkward introvert like me, you too have experienced the trauma of the party where you only knew one person.

Think of that one year at your spouse's work's Christmas party, the year when two hundred people were milling about with stem glasses of wine and teensy paper plates with mini-quiches and meatballs. Your spouse left you for a second to discuss the January budget with the accountant who only comes in on Thursdays. But he did not introduce you to anyone, so you had nobody to talk to. Sure, the people around you were all nice, and you knew none of them were out to harm you. But standing there with your back against the window, clutching your wine glass for dear life, you knew you did not belong. You knew nobody cared whether you were there or not. It was another one of those events that were to be endured till your spouse would return and magically make you feel part of something again. Everyone else was laughing, comfortably walking about, brushing elbows, feeling welcome wherever they choose to stop to join a conversation.

Second scenario -- same party, someone walks up to talk to you. It's Joe's boss. He tries to be friendly, but you know nothing about him, except that he ruthlessly and without explanation fired Joe's cubicle mate Miranda last fall. You want to be kind, engaging, smiling, and positive -- for Joe's sake. Words fail you. 

Take these scenaria with their accompanying anxieties, and imagine that this was your day every day. That almost every encounter you had with another human would feature risks, rejections, misunderstandings, disappointed expectations. After a season, you quit trying. You prefer staying home with your favorite movie, Harry Potter 3, where every time you turn it on, there is Dobby slamming his head into Harry Potter's dresser drawer, and there is Harry, saving the day for Hog Warts. 

That may, to some extend be what life often feels like for a person with Down syndrome and autism. So much of the world makes little sense to start with. When you finally make sense of something, the world keeps changing, and it is that change, and the Downs-autistic person's inability to predict or stop the change that causes him either to check out, or to melt down.

When roughly 25%  or more of  any given day spins out of my control, my mood begins to be affected.  I'm talking mundane things like toilet overflows, a late fee shows up on my mortgage payment because the Bank web site did not work, my sitter for work suddenly fell through,  I was 30 minutes late to Ben's appointment because of traffic on I 270, etc. If that were every day, all the time, eventually, I would give up or melt down too.

Less questions, less talk, more quiet, more acceptance, no pressures ... would be nice for any of us when we are overwhelmed in a social setting.