Benjamin - the artist

Did you know that Ben is an artist?

Ben is 18 years old, and not only is he an artist, in many ways his life is a work of art. He has his own special style of dressing, his ties and bow ties, his shirts. He loves hats, It is very important to his self-expression and daily functioning that he wears the pieces he puts together, so he looks the way that he best feels expresses who he is.

His life is a mosaic, it consist of fragments--some with sharp corners-- of health, illness, ability, disability, joy, sorrow, comfort and pain. Some events on their own may not make sense, the pain is too intense, the loss too severe, but as a whole, when we step back and look at his life --- well, this piece of his, which I call the wheel of life, may express it best:

I ain't no art critic, but to me the balance of colors, the subtle pastels and the grays, the big fragments, the little pieces fit together in a beautiful whole that inspires hope with its beauty. I love this wheel and it hangs in our livingroom right next to Mirabel's Stair Case in Provence. Perhaps you can see why.

Ben's first major introduction to art in high school has come from a wonderful pottery course he has taken a couple of times at Broomfield High School:

We put tea candles in these and use them on our dining room table.

I think the fruit bowl is my favorite, handy, useful, and beautiful all at the same time.

We keep our Holy Water in this pottery basket.

Ben's own tea mug, It is huge.

Pandora's Box - so named by Nikolas Jaqua, who received this for Christmas last year.

The pinnacle of his pottery work -- Ben's teapot.

Watch the colors in this mosaic:

There is both storm and calm in this paint on canvas:

Colorful and large, water, sky, and tree. This one is in Ben's room.

Ben also took a graphic arts course:

Animals in the Arctic

The MOVIE poster, and ...Yes, he is ONE IN A MINION :)

The artist's self-portrait in quadruple.

Self-expression is extremely important for those who struggle to communicate with the mainstream of society. Ben has a strong need to express himself. Art is, perhaps, his most effective medium. He is meticulous with his art and can spend hours on details. He will not quit until it looks the way he wants it to look. Yes, he also has the frustrated artist's temperament that growls and throws his hands up in the air when the medium will not comply with his intents, but he sticks it out, and you see the result -- Beautifully done, thoughtful, detailed, meticulous, expressive pieces that bring out, not just the almost-non-verbal young man that most of the world smiles at but often ignores. Here is a deeply-feeling, compassionate, and alive human being whose works in clay, color, and on the screen give us a glimpse into an intricately artistic mind and soul.

Thank you, Ben!

The best shot of Ben, ever!!

[Michelle took the top and bottom pictures of Ben at school and sent them to me. I took the others with my iPad (next time, I will use my camera instead for higher quality)]

Special Needs and Church

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Interacting with the Public

The world is very welcoming to little children with Down syndrome---that is, for those of them that manage to get themselves born. (But that is another chapter for another day, perhaps, perhaps not). Toddlers with Down's are irresistibly cute (as are all little children), but when they grow up, society is uncomfortable with their teenage and adult hood bodies and minds and most people do not know how to interact with them.

Young persons with Down's often feel socially isolated. Everyone else is connecting by play, by talk or in some game that the young person with Down's does not necessarily understand enough of to participate. Nor do most people invite him to join. The person with Down's, however, likes to be around others that are playing, and what better place than to sit on the swing and swing and swing while enjoying the remote company of the kids playing in the sand or on the grass around him while he just swings on the swing set? He is there, somewhat included, and he is having a good time.

So he swings high. He puts as much effort into that swing as he possibly can. It feels exhilarating to be going through the air, up and down, the air brushing his face, and best of all, when he is really high up, he can JUMP, jump off and land on his feet. And then get back on the swing to start the process all over. What better way is there to spend a sunny fall day in November?

But, say parents of younger kids, he is too big for the swing set, and he swings too high, and he cannot look out for younger kids, and they might get in the way of his amplitude, or one of his jumps.

And then there is the issue that he hogs the swing. He gets on the swing and for the 30 or more minutes that he is there, he will just swing and swing, the same way that when he is at the pool he makes an endless series of loops to the water slide, down the slide, into the water, then crawls out, climbs the ladder, back at the top of the slide, and then the delightful 30 seconds of down, down, down, hit the water, and then up the ladder again.

Other kids may know moderation or be pressured by adults to vary their activities from the swing to the sandbox to the slide to the hopscotch. They need to try it all and they need to let other kids onto the swing. AND  most of all, as Barney the Purple Dinosaur told us all... we need to share--and that includes sharing the swing. 

What parents of typical kids often miss is that the young man with Down Syndrome has 15-19 years experience, and that experience tells him that he prefers the swing at the  playground, and that he prefers the water slide at the pool. He doesn't feel a need to TRY anything else, having already tried it all year after year for almost two decades. The swing is it. And that is where he wants to be. The swing gives him the stimulation his nervous system needs to endure the usual social isolation that he often feels--it helps him forget how hard it is to fit into the world, and how difficult it is to break through to other people who seemingly are all connected, something a young adult with Down's never feels, no matter how hard he tries.

Young adults with Down syndrome are precisely that--young adults--no longer kids--or at least on the verge of no longer being kids, just like any other 17-19 year old. 

But in the minds of the public these young adults are ---"forever kids' in the most romantic sense of that term. They are supposedly children in mind and mentality, and as such they get treated like little kids by most people, as if they fulfill people's nascent dreams of eternal innocence. As eternal children, young adults with Down's get corrected and lectured at, and they get saddled with the expectations one would have of a 6 year old kid--- or at least with the sort of talking to that we think we can get away with when a kid is 6: "It's time to let someone else on the swing, Johnny. You have had your turn."  -- That may be reasonable when you are training your 6 year old that the park is for everyone and that there are people waiting their turns, but you would never do that to an adult who was sitting on a swing, nor for that matter  would we-- (not I at least) would never-- do that to our young adult children. We would let them decide how long to do whatever they are doing (like playing Risk till 1 am). We would not interfere with other young adults at church as to how long they throw a football around, or whether they have spent the whole 30 minutes between the church service and the Sunday School playing tetherball. That is their choice. They can manage and moderate their own behaviors, preferences, and spare time.

So also, I would advocate, we need to respect the young adult who is developmentally disabled. He can manage and moderate his behavior and he needs not only his space, he needs our vote of confidence that when he is not doing something that is dangerous or in some way seriously causing discomfort to others, we need not correct his repetitive behaviors or choices. We need to respect the way he chooses to spend his time-- the way we would any other 17 year old's choices.

Some people are not comfortable having anyone that big playing around little children, but by taking that stance, they have made their own world smaller, narrower, and they have barred another human being from being able to enjoy himself the only way he knows how, simply because they do not understand him or trust him.  

I realize I am advocating for the benefits of one, instead of the benefits for the many. I realize that most people are not only uncomfortable with young adults who are developmentally disabled, but actually scared of them because they are different, because they have near adult bodies, and perhaps they have near adult urges, and perhaps they would do something untoward that we would not know how to deal with or stop.... so the thinking is 'best not to let it happen to start with'. 

But where... if I may ask ... where do these young adults (and later older adults) with developmental disabilities belong? 

Like Shylock said about Jews in "The Merchant of Venice", if you poke them do they not bleed, if you tickle them do they not laugh. 

Where do they belong? Where do any of us belong? Who decides?

Do we accept our children's disabilities?

For biological parents of children with disabilities, one of the most difficult things is to accept the child's disability--to accept the child just as he or she is.

I know this sounds cliche, and I realize that most parents would say, "Yes, I have accepted that Jimmy has Down Syndrome, of course I have. I have lived with it for 12 years. What a silly thing to write a blog post about."

So let me qualify what I mean. 

When we first get a diagnosis for our kids, the first reaction most of us have is shock. For me it was when I was 17 weeks pregnant. I went in for a routine scan of the baby. The ultrasound technician took forever with the scan. I knew something had to be wrong, since this was my fourth child, and none of the others had ever taken that long to be scanned.

Well, lo and behold, the technician called the doctor into the room. The doctor starts by saying, "Should I get your husband in here first?" And my response was, that if she had something to say to me, she had better just say it. And so she did. Cleft lip and palate was the most obvious defect. Add in, a significant heart defect, which she was not qualified to comment further on, possibly my baby had no stomach, at least none that they could see on the scan that day.

Gulp... suck in the stomach, stiff upper lip, square jaw, and I moved on ....(after a weekend of non stop weeping while I dug a vegetable garden during that dismal April 1996) . Did not call extended family... didn't want to talk to anyone.

 Further scanning the following week with a pediatric cardiologist  (who became our medical best friend for the subsequent 7 years that we remained in Michigan) showed the likelihood of Down Syndrome ... and you know the rest of the story :).

How does one live with and accept that? Well, time is the healer of most wounds. One gets used to whatever one cannot fix, obviously, and so one deals with it because one must. :)

But that is not the whole story, and I am not sure that ONE (or at least not I) totally deals with everything... or that one really can. One adjusts and copes, but one cannot always look it all square in the face and see it all. One 'dodges' and 'misses' or flat out 'refuses to see' certain things because one is overwhelmed and one filters stuff out.

What do I mean?

One huge issue that I have so not been able to take in and process has been Ben's difficulty in the area of speech. At first, I was told that Ben would never speak, not beyond the oh, and ah, and eee and other vowel sounds that he produced. Well, given that he has Down's I knew speech would be difficult, add on a hearing impairment (mild to moderate) due to dysfunctional Eustachian tubes that came with the cleft palate,  and finally add on (from the repaired cleft lip) an under-bite to the tune of a 1.5 cm protruding lower jaw (beyond the upper jaw), and you have speech issues that go above and beyond any one of his many conditions taken in isolation.

Does he speak? You bet! He has  a ton to say, and he does speak in complete sentences (as evidenced by his writing and by what those of us who understand him best know.) Problem is, very few people outside the family can understand what he says. His speech is slurred, he has little hearing in the frequency range where s's and z's are pronounced, and he cannot construct a sound like t or f .  In addition, he lives in NERD country where everyone speaks a mile a minute, and where dinner conversation is about hydrogen spectral lines and Greek participles in Thucydides. He tries to imitate our speech and the best he can do often is to produce a bunch of additive syllables to his words that sound almost like stuttering. Those random additive syllables further confuse his speech for even the most dedicated listener. Result is that 90% of the time the innocent man on the street has NO IDEA what Ben is saying.

I knew this and I know this. And for years, I thought I was being honest about it in working with school and therapists to deal with the issue. School was saying Ben needs an assistive technology device, so he could push buttons and type/spell/clarify what he is saying, and we did have such devices, but our lives are and were and will continue to run so fast, it seemed impractical to me. The device was never there when we needed it, and kids he plays with at church or at school are going so fast, nobody is going to slow down enough for him to pull out a computer, push a button and clarify what he is going to say. --- And so, in a lot of ways, none of us in the family have really supported Ben's need to communicate that way. Instead, we have limped by with his speech issues, letting him get by as well as he could. 

I pushed hard for articulation speech therapy. If only someone could help him learn to SAY those sounds properly, then everyone would understand him. If only the speech therapist had more time with him to work on this, THEN things would work out. And in the past year, I have pursued deaf and hard and hearing private therapy, and Ben has sat with that lady working on his speech, and I think Ben's Momma has finally seen the light on the speech issue... which is.... ... yes, I blush to say it... what the school has been saying all along.... Ben cannot get by without an assistive device to clarify to the rest of the world what he is trying to say.

All this (and I will write a blog post about speech another day) to say that my own blind spot in this area was my wish of how he 'ought' to communicate, orally ----which he really is not capable of doing well enough to get by or have a social interaction with hardly anyone.

Acceptance of what is, is a difficult thing in a child with disabilities. I think when our kids are born (for those of us who are biological parents) we 'accept' our children as they are, as best we can. 

But we always dream a little beyond the diagnosis we are given. I remember thinking that by sheer will power, I would make this kid the smartest kid with Down's that the world had ever seen (no, not really, but yet... YES, I WOULD!!) But reality was that the first four years, I spent most of my time just keeping him alive (that can be the topic of another blog post as well). 

As Ben developed and unfolded (after 4 grueling medical years) with what he was capable of, I started feeling comfort in random aspects that he was very good at.  Whenever he showed any trait that defied Down Syndrome, like his very strong legs, I was heartened for a bit. Today, one of the things that heartens me is that he is so organized and orderly in his routines, his attention to detail in school work, and his energy for taking on tasks and following through (most kids with Downs bounce off walls and are completely scattered and inattentive). He is so very cooperative, like in the dentist's chair, or with a medical procedure... or right now when he wears a splint to bed for his right leg--- he never balks, he just does so, consistently, on his own.

But the truth of the matter is, Down's is not a revelation that came at 17 weeks of pregnancy and then it was  all said and down and now we just live with it. 

=> => => Down's is a continuing revelation of a host of issues that keep cropping up <= <=

These issues range from spinal scoliosis, to hypothyriodism, to reflux disease, to issues with feet (flat, turning out, learning to knee and hip problems), as well as a mild persistent fear of moving into autistic behaviors, to say nothing of long term premature onset geriatric additional issues such as Alzheimers, ... the list is endless.

Not that he gets all of them or that life is one long fear of what might happen. For the most part I live with what is until an issue crops up. We don’t live in fear!! NEVER!!  

But things do crop up and continue to crop up healthwise, behavior wise, mental health wise with Down’s. Langdon Down's syndrome continues to reveal aspects of adolescent and adult life that sometimes completely takes a parent aback.  Ben’s latest has been persistent issues with his feet and joints as well as WHAT... to do with his jaw, orthodontics, skull issues long term (my project for spring and summer 2014).

Most of the time life moves on, and when something looks like it is lingering, I tend to ignore it with the mild arrogant attitude that if it is a real problem, it will surely get worse. (A tactic I learned from Ben’s first pediatrician…. That was his response to any issue that looked like it might become emergent J)

Ben is  (in the words of our beloved pediatric cardiologist from Michigan in one of his reports) a 17 year old male with Down syndrome in “no acute distress”. That is the mode we operate in most of the time, thank God!

We have accepted who he is and what the syndrome might bring next – whatever that is, but I do believe that REAL AND TOTAL acceptance in a more profound sense is not possible (at least not for me). 

Had I known, at 17 weeks pregnancy, what I would deal with, with this child, for the first 4 years, I would have collapsed in despair (another blog post). The intensity that life in the hospital with Ben required during those years, while I had an 18 month old, a 3 year old, and a 6 year old at home, was such that only my daily naive and ignorant hope that things could not get any worse held me up and got me through those days.

At a very real level, I think the ignorance we parents live under in regards to our kids, CAN be our bliss. If we knew how profoundly and incurably impossible some things are for our disabled children---and what dismal prospects the future sometimes holds, realistically speaking --- we would despair. Stark realism is not our medicine; it would be the death of our  wills to live and keep trying. We have to dream and hope and overlook, the same way we do for every other person we love --- our love covers, not only a multitude of sins, as the Bible says, but also a multitude of imperfections and shortcomings. --- in the words of St. Paul: [Love]  always protects, always trusts, always hopes, always perseveres.

It must. And so it does. Thank God!!

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!!"