Coping with Special Needs - One mom's journey

What absolutely broadsided me after becoming a special needs mom was dealing with other special needs parents. Doctors and nurses kindly connected me with a Down syndrome support group, and I went a time or two and fizzled.

Support Groups

No, I am not against support groups, and I have been supported by many wonderful people over my son’s 18 years, but I would say that there is no one way of dealing with this, and I would add that our differences in dealing with these stresses majorly divide parents of special needs, who to the rest of the world SEEM to have so much in common.

I was introduced to the Down syndrome community in Kalamazoo, Michigan first. My son has Down’s but that was the least of my problems. He also had a severe heart defect, cleft lip and palate, digestive issues, respiratory issues, etc. 

My real first support group consisted of parents --not with children with Down's-- but with severely ill children who might not make it. Most kids with Down’s have one or two medical issues that gets repaired, after which junior grows up on a Down’s growth chart, with a Down’s developmental schedule, he reads, he talks, he moves about, and he generally turns into a congenial, fairly easy-going fun kid. My son was near-comatose the first year, and then screamed the second. Theses parents had concerns about sitting and walking, I had concerns about survival. 

Ben spent four years being so critically ill, that he seemed like a minor miracle every time he turned the corner on the latest threat (bacterial, cardiac, pulmonary) and came through strong.  He is largely unintelligible today (though we do have communication devices and paper and pencil to clarify), and he shows traits of inflexible, rote, autistic-like behaviors, which result in quiet, inward-turning melt downs when his world becomes over-stimulating or too unpredictable for him. He has Down's, yes, but that is not the biggest issues in helping him cope with life productively.

Alone

But, even when I find, as I have, communities with kids who are in-one-aspect like Ben, we each walk this path alone. Our children do, and we do. But alone is OK. Alone can strengthen you.

Note – I am not knocking support groups or friends. I don’t know what I would do without folks who can relate to a particular struggle with a Medicaid refusal on needed equipment. What I am saying is that special needs and how we deal with the challenges is fundamentally related to our basic coping mechanisms, many of which we bring with us from our childhood homes. 

For example, when I was pregnant with Ben, I was determined not to abort, though we knew from 17 weeks that he had significant heart issues, clefts, and Down’s. I went to appointments at University of Michigan Hospitals, and time and again, a doctor would encourage me to consider abortion. I was mildly annoyed and found the suggestions inappropriate, but I have always been a somewhat independent person (I moved 7,000 miles from my family at age 22).

When I would mention these encounters to friends, my friends would have tears well up in their eyes at the thought that a doctor could suggest that I should destroy Ben. And I thought, .. huh?? This is MY kid, and you are crying... and I am not?? 

Call me Mr. Spock … but the idea of destroying Ben was a non-issue, since the ‘choice’ to do so was entirely in my power and I knew I would not allow that. I don't get emotionally upset at potentialities. Good grief, he was so sick, and there were so many unknowns. If I had mentally chased every bunny trail of what could have gone wrong, I would be neurotic by now. 

Venting

Another event I remember involved a short-term friend C., whom I met when Ben had his second heart surgery and managed to stay in the hospital for almost four weeks due to post-operative complications. 

C.’s son was in the same intensive care unit as Ben, and when C.’s son’s recovery was complicated by pneumos, she freaked out and spit nails at doctors and nurses right and left right there in the cardio-thoracic ICU. She was acting out of raw fear – her fear that her son would not recover.  She was fit to be tied, and the nurse exited inconspicuously while nodding to me that this was my friend and I would be the best person to talk her down to size. 

Nothing wrong with C's reaction, and she was a chill gal most of the time, and she needed to let it out. That was not me-- at least not in public. I was raised to be a polite inconspicuous Scandinavian who tries hard not to inconvenience others. At times when my son's life was threatened, I'd either move into action (if there were something  I could do) or I would internalize it, or try to process it by discussing the details with the cardiologist. Somehow understanding the scientific details engaged me in intellectual pursuits which somehow dulled my fears and gave me an illusion of control. 

Then there are the long-term threats, like the realities of what my kid will actually be able to do or not able to do in life.  Parents of special needs have a variety of coping mechanisms there too.

When your kid is really really sick, like mine was, you tend adapt what I call the total-parent-child-bond, where this kiddo is the only thing that matters to you, and caring for him trumps anything else you do. 

This backfires....

... when he gets well (or if he dies) you have no life left, and no friends either – doctors, nurses, surgeons, nutritionists, respiratory therapists, the medical supply delivery truck driver, and your friendly Walgreen's pharmacist were your only friends -- all paid friends. – I kid you not, when we moved from Michigan to Colorado, we got a SIGNED CARD from everyone on staff at our local pharmacy at Walgreen's in Portage, Michigan to tell us good bye. We had teary eyed goodbyes and hugs with pediatrics and cardiology, especially.

I was in the total-parent-child-bond for about six years because Ben was so sick, and I think it is a dangerous place to be because it is not-sustainable. Your kid will get better, or your kid may die, and you will come out on the other side, having missed happenings in the rest of the world -- you forgot Aunt Ethel's birthday  ten years in a row and she is miffed. you don't see your neighbors, your church doesn't remember your family any more, and the people you thought WOULD be there for you when you are finally out of the medical tunnel have gotten new friends and have busy lives that have moved on. 

Medical Friends

As examples of my sheltered existence for those six years, I have no recollections of the second Clinton presidency – what he did or did not do, whether the economy was good or bad, what happened in the rest of the world during those years.  That pretty much translates to Kosovo and the Balkans  did not happen in my little universe of medics, oxygen tanks, G-tubes, and feeding pumps.  

I have heard that some moms get so dependent on Medical-ville in this stage that when their child is about to get better they develop Munchhausen-by-proxy syndrome and actually physically MAKE their kid ill just so they can come back to the hospital... so they can stay in the world they feel loved in – kinda like a recently released convict who commits a crime so he can go back to prison because he does not know how to function in the real world.

I was  not like that. I was relieved when the pressure let up and every morning was not a game of dice where the options were ER, doctor's office, inpatient, surgery, or stay home and tube feed.

I always the one who did everything for Ben in the early years. -- Not healthy -- I saw other parents of special needs children who were seriously ill, who took turns in the hospital, who shared the care of the child, who took turns being up at night, and I think that is a healthier mode than what I ended up in. When my son was three, I was offered the chance to go to a silent retreat, and I realized that nobody else in my household was capable of taking care of Ben, so in effect I could not leave without training folks, getting nursing support, etc. And I did make that change, untied myself a bit from that leash, and left for 2 glorious days of simple foods, quiet evenings with candle light, the woods, a few girlfriends and some much needed rest.

Blame

One of the more toxic coping mechanism for us parents of chronically ill children is: ‘whose fault is this?’. 

I had friends who had a great need to blame someone. Not that anyone blamed anyone for a kid being born with a specific syndrome, but when something went wrong with that kid, when a doctor failed to notice a condition, or to take it seriously soon enough, all the negative energy pent up (from the frustration of having a child with a chromosomal abnormality and all the side effects ensuing from such a condition) could then be targeted at that one physician who made that one mistake on that one day. 

It’s kinda akin to kicking the dog after you have had a bad day at work.  He is the next thing that crosses your path, you have had it up to here and then some, and he just happens to be in the wrong place at the wrong time. I think we all do that, at times, and hopefully we ask forgiveness and restore relationships, but the danger comes in when that becomes a life obsession – always trying to find someone to blame when something goes terribly wrong.

Anger

I have met many parents of kids with special needs who at the root are very angry people. They are angry at school, at all that school should be doing for their kiddo, but isn't. They are angry at doctors who didn't catch certain symptoms, or who chose the wrong treatment. A good example of this is the crowd of parents who band together to blame their child’s autism on the MMR vaccine – a claim that cannot be substantiated scientifically, and in fact, one that has been refuted thoroughly by the medical community (http://www.immunize.org/catg.d/p4026.pdf) . They feel angry. They are dealing with what they do not want to deal with, and they are profoundly disappointed in the issues that their child has. Life has thrown a curved ball, and they cope by finding someone to blame, someone outside the family, and they unleash their anger by joining the anti-vaccine community and spreading its message.

Not to elevate myself beyond the reach of anger. I have had many angry moments, moments where I felt trapped by having to care for this medically complicated person. I gave up a career in nuclear physics research, I was much removed (for a season) from my three older kids because I had to take care of Ben, and now that Ben is an adult, there are still times where I fear the future in terms of how I am going to manage to work and have Ben in adequate care that I can spend my 40-50 hours per week on my job.  When things go ‘wrong’… like chromosomes divide incorrectly and a child is born with a ‘syndrome’, there are a host of feelings to deal with: anger, fear, frustration are the chief ones, and we parents of these kids are changed forever as we deal with those emotions through the rest of our lives and through the rest of our children’s lives.

Many of my friends have become advocates for special needs and sit on councils and in committees, or get jobs in  the special needs care  industry. They know every law, everything their kiddo is entitled to and they are super resource centers for new parents and ignorant parents like myself.

Breaking Free

When Ben “finally” got better—somewhere around 2003 when he turned seven, we happened to move to Colorado. I saw this as my big break. I wanted out of Medical-ville SO BADLY. And since I was leaving behind Dr. Page, Dr. Loker, Teresa the audiologist, Jan our nutritionist, so say nothing of Dr. Sommers, and the whole cleft team at C. S. Motts. Since I was going to a place where nurses would not fight over who got Ben, to a place where the receptionist in cardiology would not beam at me and discuss knitting with me when I walked in, I decided to redefine my life.

In Colorado we put Ben in school, and I started writing books, getting more involved with Church, and amazingly Ben’s health was super (for the most part, apart from that once a year pneumonia and that annual surgery or two). – I actually became SO IGNORANT of special needs issues as I focused on the classics, started knitting socks, and reading the Aeneid in Latin with my older kids, that when Ben turned 16 I found out that I had missed – by two years—the time to sign him up on the long wait list for adult long term Medicaid.  

HAH!! Ignorance is not always bliss.

I did not join another support group till Fall 2014, just in time to get on board with Ben’s guardianship, etc. which I have spent many other blog posts outlining. Neglect, perhaps. I needed a break. And in the meantime, I have a job now, a life, a church, friends, and I also have a corner of my life which is dedicated to special needs.  – 

My life is more balanced now.

But, life with special needs is a roller-coaster, perhaps just like the rest of life, only more severe in the ups and downs, and in the turns. There is never a day where I can just drop everything and go somewhere. I always need to find care before making plans (just like you did when your kids were under 8).   - How do we cope?  We just do -- because we have to. This is the hand God has dealt me. It is the hand I must play. Best to do it cheerfully whenever I can. (Which is -- some of the time.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!!"