Special Needs and Public School

My son Benjamin who will be 21 in September just finished school ... like ... forever!! HEEELP!!

It is OK. We have wonderful plans for him, which I will talk about options for in another post. I want to talk about his school experience and how public school works with special needs in this post.

Now, there are many students who fall under the label special needs. I am restricting my comments to the special needs that I know and understand a little bit about, which is developmentally disabled students, students with mental health issues, and perhaps a little bit less, physically disabled. My son encompasses a little bit of all three. He has Down syndrome, he has obsessive compulsive disorder, and he also has chronic health issues, though they do not prevent him from being ambulatory.

Now, I homeschooled Benjamin till he was 10, partly because I homeschooled my other chidren (initially because of Ben's health) but also because he spent his first seven years with significant health problems that led to scores of hospitalizations with infectious diseases, and also to scores of surgeries.

At age 10 he presented as pretty healthy and also as utterly bored with homeschooling. I had his three older siblings who were reading Shakespeare, doing algebra, and working on their Latin verbs, and Ben, while the other kids took turns teaching him math, reading, and writing, was bored enough one day to take a red sharpie marker and mark off our entire main floor bathroom (walls, doors, tub, commode, sink, and mirror) with little red tic marks -- thousands of them.  Add to that another day where he tried to see how much dog food he could flush down the commode in one flush -- the next thing he knew, public school was on his daily schedule.

We started him in fourth grade at the local elementary school. 

The school was more or less flabbergasted to get him enrolled. They clearly rolled their eyes at first, wondering why this mom shows up with a kiddo of age 10, and I think they expected he had no skills and that he would have suffered academically from utter neglect. (Perhaps they had experienced kids coming in like that in the past.)

At any rate, we had a series of meetings and established what services Benjamin would benefit from in terms of speech, physical therapy, occupational therapy, hearing impaired services. The teacher was a young enthusiastic woman with a sunny bright smile and a large heart. Ben instantly took to her, and for two years we walked him back and forth to elementary school.

He loved the activities and attention and other kids at school so much that the week after he started school, on a Saturday, we were woken up by the doorbell ringing. Outside stood a 10 year old girl holding Ben's hand. Apparently Ben had gotten up, decided it was time for school, walked over there and nobody had been there. This girl had been out, she knew Ben from class, so she walked him home. -- 

And so we had to have the talk about what it means that "it is Saturday." -- Local school keeps kids like Ben safe because everyone in the neighborhood knows him, and the few times he has been lost, people already knew him and walked him home. 


I won't detail all of Ben's years in school, but I will mention that as he grew into his teen years and became 'less cute' and more suspected as a growing-larger teen boy, while his heart was still with the 6 year olds on the playground, the one singular place outside home where he was unconditionally accepted was in the public schools he attended. Always welcomed enthusiastically by teachers, para-professionals, other students with special needs, as well as by regular students at the school. 

It is thanks to public school teachers who worked hard to connect us parents (via monthly Saturday morning breakfasts and occasional dinners associated with school plays) with other parents that I even after Ben is out of school have a strong parent support network consisting of two different groups that meet monthly. It is thanks to those teachers and that community at school that Ben fostered friendships outside the special needs classroom with students who were his regular lunch buddies in his "circle of friends", students he is still in touch with, students whose parents are still my friends. 

But more than that, public school helped Ben in so many ways. Apart from just helping him learn to read and write (on top of what my daughter achieved in homeschooling), having amazing math programs that Ben just adored (he still works through 1st and 2nd grade mathbooks just for fun in his spare time), in addition to the hearing impaired support, the PT, the OT, the speech therapy that helped us get him an excellent communication device, in addition to all this, school helped Ben

1. work well and hard in projects he was capable of contributing to

• greeting card making
• setting up and taking down dinners for school staff
• landscaping
• paper shredding
• food teams (sandwich making, cookie making -- hygienically!!)
• walking dogs for Humane society

2. School got Ben out in the community on a weekly basis, exposing the community to these students in a positive well regulated way, and helping our special needs students be active and confident in the community

• museums
• zoos 
• bowling
• parks and recreation centers
• grocery shopping
• restaurants
• Christmas shopping for parents and siblings

3. School has helped Ben regulate his emotions when he gets anxious not only by therapy and psychological intervention but by working with me, finding a strategy for de-escalation, and for giving Ben simple coping mechanisms (safe place, coloring activity, etc) that help him get through his day with a minimum of emotional upset, and a maximum of functional hours.

4. School has also accepted Ben in spite of his deficiencies, his flaws, and his -- let's face it -- utter lack of value in a free-market competitive economy. Public school has that attribute that it MUST accept all students, and it has welcomed Ben, worked within the federal law regarding special needs, and done a world of good for my son.

Is it perfect? No! I do have friends who are parents of students with special needs who have not gotten from the schools what they had hoped for their students. I will not discuss their cares here, since they are not mine.

My hope with school for Ben was that he would find a community where he could learn and grow, where he was accepted, and where he would enjoy being.

Same hope I have now for the new adult programs that Ben is going to be in starting June 1st. I want him learning, growing, accepted, and happy. If he can, as I hope he will, hold down some part time (paid or unpaid) employment with group support, that too, I hope is in his future for a few hours per week. (He calls it his new school, and that is the highest compliment Ben can bestow on anything).

In conclusion, I cannot say enough good about all the ways in which Ben was affirmed and loved by super-energetic teachers who personally cared for him and his (sometimes difficult) emotional and academic well being.  And it takes quite a person (or two) to teach those who are not only developmentally and cognitively challenged, but who, as is the case with my son, also has a mental health component that can totally lock him up and have him stuck, impossible to deal with because of his anxiety and inability to move onto the next task. 

School to Ben has not ever been 'a chore', nor was it ever something he wished would go away so he can go into summer vacation. On the contrary, he has always dreaded summer and wished it away so he could get back to school, where he is loved, affirmed, challenged, employed in meaningful activity -- where he is among friends, peers, and professionals who honestly care for him and want to be with him --- unlike, for example, church, which is a mixed bag where some accept him (bless them!!) some avoid him, and some actively can be frustrated with who he is, what he does (or what I let him do) even if they try not to mention it too much. 

Not so with school. In high school Ben  has marched triumphantly through the hallways during breaks or lunch, getting multiple HIGH FIVES or fist bumps from scores of students, most of whom are pleased to give him 5 seconds of their time, students who may not all achieve so highly themselves, but who thanks to integrated high schools have been blessed with the smiley presence of my son Ben daily. 

Our public schools serve ALL students of ALL needs, and I think this is an important point to make. In many cases there is no other place for them. The more severe and specialized the special needs, the less likely that the needs can be met at a private or a charter school. 

During the 2013-14 school year, 6.5 million students—13 percent of the public-school population—received an IEP.

Some things may be able to be run better when they are run by business men or in a business manner with competition in the marketplace, but special needs are not one of them. Special needs COST us, the tax payers, but it is what we do because we care about each other and we care that each and every citizen (rich or poor) finds a meaningful place in our society.

 "(S)pecial-education programs are costly and provide few tangible benefits for school districts. School districts are rewarded for giving high-achieving kids ... Good students raise test scores, increase the ranking of the school, and keep property values high. Special-education students are red marks on the ledger."

https://www.theatlantic.com/education/archive/2017/01/is-the-bar-too-low-for-special-education/514241/

Turning 18

Ben turned 18 in September, and the list of paperwork to take care of since then as been staggering and it is far from over.

I am hoping that this laundry list of things to do might help someone else who is not quite where I am yet. And for those of you who read this blog for entertainment or interest or awareness or out of sympathy... I wonder if you will make it to the end of it.

Before I go into details of my list, let me say a few words about fatigue related to expectations when it comes to special needs. It is not necessarily the processes or the applications for this or that that tire a person. Ben needs long term care, he needs medicaid, I need to have guardianship of him, and it would be really nice if he gets Supplemental Security Income. All those things are GOOD once they are in place. -- I think for me it's accepting the reality of all the things that Ben cannot do and never will do (now that he is 18) combined with a life long expectation (from the time I was probably 12) that once my kids were all out of the nest, I would be done with all the caring for and providing for persons, and actually more autonomously looking towards another 15-20 years of work and then a comfortable retirement with travel and interesting things to do before ending life.

The prospect of having a person to care for ever, always, until one dies can feel daunting. And I am not saying it to get sympathy or to complain, but simply because this territory is unknown, one is getting older and more easily tired, and the 'endless school summer vacation' that is in store for Ben as he finishes high school feels both scary and tiresome... and I am not even really in it yet.

Looking at Ben as a dependent is something one can accept because I see daily all the things he cannot do for himself. I cannot even describe the process of guardianship to him in any way that he could possibly understand the concept of filing papers with the court, let alone what responsibility for him entails, or what it means for me in terms of authority if I do not have that guardianship. All those concepts are forever beyond him. --- Heck, I cannot even drop him off across the street from school and let him cross the street on his own since he is not aware enough to cross a residential street with care. He cannot be trusted with a house key, he can never be home alone, not even for a short time. I have tried it, and if I am gone 5 minutes, there is no telling where he might be when I return.

Now, I have to do the following for him now that he has turned 18 (in addition to the usual stuff I do, including doctors and orthodontics appointments, taking him to school, providing care for him any time I am not with him.)

1. Apply for guardianship for Ben
2. Apply for medicaid for Ben
3. Apply for Supplemental Security Income for Ben
4. Finish process of getting long term custodial care Medicaid Waiver for Ben (He is approved, but the meetings and the processing of all the info is a long trip yet to be completed)

The goal is that by next March or so I should be done with all the paperwork, meetings, petitions, etc and should be settling down to 3 reports per year to 3 different authorities who have to hear annually from me on how Ben is doing.

Guardianship

Many of us with children who are developmentally disabled need guardianship or some arrangement of authority of our kids after they turn 18. Techincally, once they are 18 they are autonomous, and where I have run into issues (and it's only been 1 month) is in getting access to his records (medical, school, SSI application, ANYTHING!) If there is no permission from Ben on record, saying I can look at his stuff, I just can't.

I paid $125 to go to a class to learn how to file for guardianship. I figured it was cheaper than an attorney, and it came recommended from many sources. As it turned out, it was a waste of money, first of all because the lady who was giving the 3 hour seminar was 1 hour late and talked really fast to cover 3 hours worth of materials in 2 hours. Secondly because the material is readily available on the state web site with a clearer 'how to' instruction set than what the Guardianship Alliance provided in their 2 hour (3 hour) talk.

State of Colorado, Probate Forms - scroll down for guardianship

In addition, I have paid $164 to the court to file, and I expect to pay another $300 or so for a court visitor to come to my home in the next month or so to inspect me and my home to make sure it is a suitable place for Ben to live in.

I will write more after the hearing in the Probate Court, which I am waiting for the court to call me back to schedule.

Medicaid

Ben qualifies for Medicaid at 18, ... the kind of medicaid that is for health insurance. However, it takes 2-3 months to process (thanks to the Federal Government of the United States, it is impossible to apply so the Medicaid is in effect on his 18th birthday. You apply after his birthday, usually in conjunction with Supplemental Security Income and the process requires an in person interview, letters from doctors, etc.  It is a chore to pull together the documentation for this to fall into place.

Apply for medicaid here.

Long-term Care

Long-term care is care for Ben after he is done with school (when the eternal summer vacation sets in), and I still have to go to work. He has been offered two different waivers by the state of Colorado, one for his physical disabilities and also one for persons with developmental disabilities. We will go with the latter since I need custodial care more than I need a nurse in the home to care for his physical disabilities.

Next week we are doing the SIS evaluation for the long term care. It is a 2-4 hour question and answer assessment meeting where I go with Ben and as many persons as I want along to help assess, to the county intake office to sit and answer a seemingly interminable list of questions about every possible need he might have. This link explains it.
Supports Intensive Scale

This assessment is done once for all and is in place in Colorado for him until he dies. It is extrememly important that this assessment be done well and be done properly. The hints I get is 'think of his very worst day' and answer according to that. Once the SIS number defines the 'level of need' he has, that establishes how much money the state will cough up for him each year, and that is the money that will be used annually for his long term care .

After the SIS assessment, IF the Medicaid has been approved (2-3 months, remember??) we do an assessment that determines what his actual daily needs are for custodial care, and then we contact service providers which will get paid directly by the state (not by me) to do the care taking of Ben. That might involve a day program that is somewhat academic on some days, it might involve some supported employment on other days. And on some days it may simply involve someone coming to the home to watch Ben if I am away. -- What I hear from other people is that it is difficult, even with the long term care waiver, to find providers who will work for the wages that the state offers on its long term care waiver. I have yet to test that for myself, so we shall see what it looks like in the spring when all is approved and we are selecting service providers.

Once that is in place (waiver come through, paperwork filed, service providers selected), I have to file paperwork each year for an annual eval for long term care to make sure that the services in place work for him each year.

Ben  might get comprehensive long term care (some group home where he lives apart from me) when he is closer to 40 (he is on the wait list for that) at which point I might be of an age where I can no longer take care of him myself, or where I don't want to. ... or not, who knows?

All this takes a tremendous amount of time, and funny enough, all these state and federal agencies, while they speak well enough with each other to know whether Ben has been approved for Medicaid health care, they don't speak well enough to each other to share any other document, so filing something in one place does not at all mean that it is accessible to anyone else.

I am deeply grateful, I should say as I end, that he has long term care. Just a year ago, the waiting list for long term care was 7 years or so, and this year it is whittled away as more money has been allocated to take care of the developmentally disabled in Colorado. That is wonderful.

What isn't quite as wonderful is the combination of endless summer vacation and endless paperwork ahead, along with the endless dependent care. I do confess that somewhere in my little brain of much fluff, the hardest thing to adjust to is knowing that one will always have a dependent.

Now, I will end with this very different thought. Ben is very definitely a dependent, and through no fault of his own he CANNOT take care of himself, and I am happy to do so. But as I have matured over the years in my 'growing up' with Ben, I find myself very narrowminded and intolerant of fully grown adults of normal intelligence who have made themselves dependent on either other people who support them financially or on the government.  It has been such a battle to get for Ben what Ben needs, and yet Ben has such a drive for independence in him and such a desire to do things for himself. For example this morning, he put on shoes with laces and rather than wait around for me to tie them, he spent about 10 minutes trying to arrange the laces in such a way that he did not need me to tie them for him (becaus he really cannot tie shoes himself). -- He TRIES so hard, and he works so hard to not have to ask... and I think, if  little man like Ben can so much try not to bother others and not to lean on others when he has so obvious needs, it seems shameful to me that some of us adults have grown up in a spirit of dependency, never emancipating ourselves fully, always dependent on someone else to pay, to get us out of whatever messes we have gotten ourselves into. What a waste of ability and good intelligence when someone like Ben would have been so happy to have had those abilities but just had the misfortune not to be born with them.

Labels

Ben had kind of a rough week. He was pretty much sick with sinus infection, double ear infection, bronchitis, and severe allergy problems for the past 10 days. Things are getting better though, and this morning he requested waffles with raspberries and turkey sausage (still in the frying pan as of that picture).

(And in case you wondered: Yes, he always dresses like that, even when he is home sick, unless he is so sick he cannot get out of bed.)

Ben is the type of person who likes to be neatly dressed, he keeps his room neat, he likes to put one raspberry in each square indent of his waffle, he organizes his lunch the night before school, and he lays his clothes out the night before school too.

He is a neat-nick, you may say, but then again, you may not because this blog post is about labels. Now, I am apt to offend just about everyone equally with this post, so keep in mind, this is my view of labels, not gospel, not THE_WAY_YOU_MUST_THINK, just the way I  like to think about labels.

Many people would say that I have a Down Syndrome child. I prefer not to say that. I have a child who happens to have Down Syndrome. 

Person first -- is my mantra in this case.  

That 'person first' comment usually gets me the response  that that is 'So PC'... i.e. so politically correct. The implication is that as  soon as we label something 'politically correct', we can dismiss it. Anything politically correct is necessarily something silly, over-wrought, over-sensitive, and therefore not something we need to concern ourselves with.

I disagree. Yes, it is true that some politically correct statements and sentiments may be overly sensitive to the point of being ridiculous, but that does not automatically dismiss all politically correct notions. --- For example, if it is politically correct to be kind and considerate of others, then I would proudly call myself politically correct. --- Do I still have a sense of humor? Yes, I hope so.

In the case of Down Syndrome, I know that most people see my son first and foremost, and perhaps exclusively (in some cases) as a 'Down Syndrome child'. ... and THAT is precisely the problem. If all we see is Down Syndrome, we see nothing at all. The label has obscured the person, and none of the uniqueness of Ben shines through.

It is easy to slap labels on us all. Women are moody and touchy-feely, teenagers are grumpy, the terrible twos, short-man syndnrome, and the one I always hear at work girls-are-bad-at-math.  (I dislike ALL of those labels intensely. I have known many men who are just as or MORE moody than women, my teens were not grumpy, I love two year olds and do not find the age terrible, why would we demean men who happen to be short, and worst of all... I WAS A GIRL AND I WAS NEVER BAD AT MATH!!!!!) UGH!!

One woman with a large family that I once met, introduced her tiny four year old daughter to me as, "She is my runt." Sorry, lady, but that one stuck in my mind forever. How would you like to be known as the runt of a litter of six kids.

The problem with labels are

1. they are self-fulfilling and create the problem they seek to identify. Tell your teenagers that they are always grumpy and they are likely to be so.

2. they obscure the person. (I forever remember nothing about that tiny 4 year old than the fact that her mother called her a runt.)

Aftter Ben was born, people were telling me that at least I had 3 healthy normal kids before I had Ben, as if  I had 'one to spare' by having 4, so it's OK Ben has Down's. After all, he is not my only kid, and I have two healthy strong sons before him, so it's good he is a boy, since I had boys to spare. What I particularly don't like about that attitude is that it is all about me and what *I get*, never mind the individual kids and their lives.  

(Kinda the same way that people thought it OK when my first son entered the Navy, since I had one healthy normal son left who was a still civilian,. When both my older healthy sons ended up at the Naval Academy, people thought I had made too much of a sacrifice. After all, I could not possibly spare both to the US Navy.  Again, a very 'me'-centered attitude that assumes that I can spread my kids out sort of evenly as I please. Sacrifice one for the military, one for the church, one to make the money, one to stay close to me at home in Colorado, etc. It is absurd, and it assumes kids are mine to do with as I choose, not persons in their own right who make their own decisions about their futures, one at a time, independently.) 

When we label kids we set expectations for them, and some of those expectations can scar them for life. No, we don't necessarily do so every time we slap a label on someone, but we might.  As parents, we curse and bless with our mouths, and we might to well to think about what we say: This is my messy one, this one is stingy, this one is shy, this one is a picky eater, this one is my runt, she is my funny looking one, that's my fat one, this one is the brain of the family, and that one is our musical child.

I wonder if our need to label is caused by our own desire for order in sorting out this chaotic universe. If I decide that Joanne is just messy, then I understand her and accept that. Or do I? Do I more so resent the fact and bringing it up and slapping the label on allows me to vent it on occasion. At any rate, I have her figured out. Next. 

Labels also have the aspect that if they stick, they can become a trap that a kid may not be able to move beyond. Being stubborn, fat, messy, a picky eater, a runt, the asthmatic one, ... if that stays with a kid, he may just accept that, and never try to move beyond it. --- And truly, some things kids don't outgrow. For example, being short, as I have always been, can be an issue if it is constantly pointed out. I cannot really outlive being short, but the question is, even so, is that the one and only thing I want people to remember about me. 

Heck, even if  my label is something ostensibly 'good' like being the brain of the family, it can be hurtful. Not only is the brain label an impossible legacy to live up to, but it also diminishes all the other kids in the famkily, almost as if they now have to accept that the position 'brain' has been taken, so they need no longer vie for intellectual achievements.

At any rate, for Down's labels could be of the nature of 

"They are always so happy"

"They have the stubborn gene associated with that third chromosome"

And then one that was too often applied in this family, "He doesn't eat, he just collects food on his plate." Or, "He is so generous."

Let me take those in order:

1. Happy

No, Ben is not always so happy. Most adolscents with Down's struggle with depression because of social isolation, and Ben is no exception. He THINKS he needs to be happy and when he is sad, he tends to answer that he is happy because he conceptually struggles to deal with negative emotions, almost as if he thinks if he just stays happy all will be well, but the moment he admits that he is not happy, his world will crumble. No, he is not always happy and contented. -- In public, yes, he is outgoing, friendly and appears happy because he is (if I may say so myself) well raised, polite, and he does not vent his emotions in public. (for better or for worse.)

2. Stubborn

This one really gets my ire. Kids with Down's are no more stubborn than anyone else in the world. What they are... most of the time... is compliant, easy going, and you can (if you are the type) manipulate them into agreeing to many things, including giving you their last dollar or their last piece of candy,  or their new iPod. Now, once in a while you cross a boundary with a person with Down's and then he or she will dig his or her heels in and say no. Is that stubborn? Well, it appears so to us, perhaps, because the person will not budge an inch. The person with Down Syndrome, however, does not have the verbal skills to articulate precisely why he or she will not do or say whatever it is you desire him or her to do or say, and so the person (you or I) who did not get what (you or I) wanted, labels the person with Down's stubborn. I am  sorry but not only is that a selfish cop out, it is also a refusal to respect another person's no. If a person tells you no, odds are that the person has a reason, and slapping a label on the person is a means of disrespecting his or her refusal of your (or my) request. Shame on us!!  I suppose any person who does not do what I want him or her to do is 'stubborn'???  :P

3. Collector of food

The label in our family was 'food collector' for Ben. I fought that label for years. Yes, he piles a lot on his plate, yes, he does not eat it all. But collector is not the point. Not only is it hurtful to make this comment, half in jest, half in resentment and irritation, it is inaccurate. Ben likes to pile food, which is not the same as liking to collect it. He likes to pour and scoop, and he does not have a good sense of how much to take. Not that he is greedy and wants to leave none for others. He would give it all away a second later, if asked for it. He simply does not have the ability to combine the thoughts of 'how much can I really eat' with the thought of 'is there going to be anything left for anyone else' with the thought of 'am I being modest and selfless here'. His taking and taking is a quality of living in the moment and loving what he is doing... and it has nothing to do with collection, selfishness, or greed.

4. Generous

Yes, I do believe that most of the time Ben acts very generously, ready to give the shirt off his back if someone asks for it. This is a quality and a vice at the same time. Ben has little sense of planning for the future (excepting in the rote behaviors I explained above where he makes his school lunch the night before and lays out his clothes the night before). But he does not have the ability to think, I have $30, I need $10 for bowling and a snack on Friday, I need $10 for a present for Kirsten's birthday, and that leaves me with $10. I think I will save it for whatever might come up next. Such elaborate planning is beyond a person with an IQ of 45.  If you are near him and you need $10 and you ask him for his $10, he will give it to you, plain and simple. He has never been in need of $10 and so it does not occur to him not to give it to you if you need it. Is that a virtue? I suppose it is a virtue of a mind that is not too complex, but it is also a vice. I cannot let him take his iPad in public because my guess is it would disappear somewhere, as did the old cell phone he was given that he took to school for a season.

So, to conclude on labels. As you might have suspected, I don't like them. That is not to say that I don't use them too on occasion, but persistent, emotionally laden labels that obscure the personhood, I find dangerous. Hence, my son is not a Down Syndrome person, but a person... who happens to have Down's, the same way I am a person, who happens to be female, and who happens to have a bunch of other labels that could be pasted on (mom, author, perfectionist [some say], professor, short, blonde, knitter, cat-lover). Any one label surely cannot sum up a person. Not even a collection of labels can. So let's treat them like sugar or medicine, and use them sparingly. 

And if you disagree, that is fine. And if you think in horror that you once said to someone in my hearing that I had a Down Syndrome son, please do not sweat it. I have heard it a million times, and I don't knee jerk and break out in hives. It is not that big of a deal. It is not how I prefer to introduce him or speak of him, but Down Syndrome is a part of his life, not the defining part, but definitely an influential part.

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!!"