Frequently Heard at Our House

Put down that cat
Why?
NO, you can't drool on the cat.
Why?
No, you may NOT spit on the floor either.
Why?
Ben, I told you, to put down that cat.
Why?
He doesn't like being carried all the time.
Why?

Ben, where are your hearing aids?

What?
Where are your hearing aids?
What?

WHERE ARE YOUR HEARING AIDS?

In my pack-pack!

Are you wearing your hearing aids?

Almost.

Did you feed the kitties?
Almost.

Are you coming?

Almost.

Ben, that is MY ...

....underwear

....money

....phone

....pen

....ipod

....toothbrush

                       ... and you can't have it.

No, you can't wear [select item of clothing]. It is [select in-congruent weather condition] outside.

That's enough _____(Fill in the blank: Syrup, Apple Sauce, ketchup, Ranch dressing, butter, sugar, pencil sharpening, shampoo, toothpaste, spending time in the bathroom, water in the tub, layers of clothing, paper usage, ... holding the cat.)

Mom, how was your day?

Fine.

Whadya do?

I went to work.

And then what?

And I taught math.

And then what? 

And then I taught a physics class.

And then what?

And then I showed my TAs how to do the lab

And then what?

[Insert 86 more 'and then what's' with their appropriate responses.]

Put down that cat
Why?
He doesn't want to be held any more.
Why?
Look, he is mewing and squirming.
Why?
Ben, just put down that cat.

OW!!!!!!! 

Mom, you OK?

Yup!

You happy?

Yup!

It's a nice day?

Yup!

I love you!

I love you too.

The Very Beginning

Today I will discuss events prior to Ben's birth.

Ben has 3 older siblings, who were born in 1990, 1993, and 1995. Ben was born in 1996.

Let me preface this with a curious story. While I was pregnant with Alex, who was born in 1995, I saw the same doctor I saw for the beginnings of my pregnancy with Ben. Around the corner, in the same building as my OB GYN's office was a small office with a little window where you could peek into a dark, windowless waiting room with brown funiture and a little box of toys in a corner. Pediatric Cardiology, it said on the door. I remember passing that door every time I walked to and from appointments when pregnant with Alex, and I remember pitying the parents and children I saw through the window. They looked worried and depressed to me. What a sad profession, I thought, and what a horrid fate for parents to have to grapple with. ...Little did I know.

My pregnancy with Ben was troubled with cramping and discomfort for the first three months. Every morning I woke up thinking I was miscarrying. Perhaps the body senses chromosomal abnormalities and tries to shed the pregnancy? I don't really know, But consider this: my pregnancy with Ben's older brother Alex (born 1995) was a nine month obstetrical nightmare (likewise with cramping). It ended in ante partum hospitalization and bed rest-- to say nothing of  a near loss of both mother and baby (with placenta abruptio at 34 weeks). To put it mildly, I wasn't really supposed to have another child. Alex was 9 months old when Ben was conceived and he was all ... eh... kinda... sorta... not really planned. But happen it did. :P

In April 1996, I went in for  a 17 week routine sonogram in order to--as the Dr. always said--make sure all the parts were there. And that of course turned out to be the most ironic thing she ever said to me.

Husband and older kids were in the exam room during  the sonogram. They were there to see their new sibling, but since it took so long (first clue that something is wrong!), the family leftto play in the waiting room while the technician finished up with me. After she  finished, she asked me, "Are you seeing a doctor today?" (Second clue that something was wrong!) The first thing the doctor said to me when she came in the door was, "We have some bad news on the sonogram, do you want me to go get your husband?"  My reaction was, "If you have something to say to me, say it right here and now!"  "Well, " she said, " the baby has a cleft lip, possibly a cleft palate too, but worse than that, the heart is not fully formed. Walls and valves are missing." She did not know whether a baby with such a heart could live. There was also a question as to whether the baby had a stomach. The technician had not seen one on the sonogram. The doctor could help no more because she knew no more.  Examinations needed to be done by a cardiologist and a perinatologist to establish exactly what was going on.

It was of course Friday afternoon at 4:30. Things like that always seem to happen late on Fridays, and nobody was available to give any more information on the topic till the following week.

That was the longest weekend of my life.

Now, lest you think me so terribly selfish that I can only speak of this from my own experience and not from the consideration of anyone else in the family, let me assure you that I really am that horribly selfish.  I don't remember anything that weekend but my own feelings. I cried, I tried to sleep, I tried to play with the kids, nothing helped, nothing mattered. I don't remember who talked to me or if anyone comforted me in person, in email, or by phone. This is not to say that there weren't others. I am sure there were many, there is a forg of memory that says they were all there, but I don't remember them I also know that this impacted my husband severely, as well as our 3 little children, but I remember nothing of discussing anything with him, and as for the kids, we must have said something to the oldest, and he must have had a reaction, but what it was, I would have to ask him, if he remembers. What I do remember is that  I dug a whole 20 ft x 7 ft vegetable garden from sodded grass in the back yard, just dug and dug and dug, and while that didn't feel GOOD, it exhausted me, and kept me near my children who played around me in the sandbox and on the swing set in the back yard.

We had only been in Kalamazoo for 2 years and were not well connected, but I do remember one person: my dear dear friend  Lorraine. She had heard from someone somewhere (perhaps me in email?) and she just stopped in at the house that Saturday morning. I sat like a zombie, trying to feed my one-year-old with a spoon, except, I wasn't really doing anything. Alex was trying to eat, but I didn't bring the spoon near. But she, practical and helpful as she always is, sat down, took over the spoon and fed Alex, while I ... I don't really know what I did. I probably just sat there. She was the biggest help anyone could ask for, really. Someone who just came and sat with me, and who filled in where she saw needs. (And I might add that she had kids the same age as mine, so she was a busy mom, but she had thoughtfully left them at home that first morning.)

Sunday we went to church and that was disastrous for me. I don't want to say anything bad about that church. Its people were very supportive later as we needed tons of child care for the older kids during hospitalizations, but at this point, their service simply did not match my emotional state well enough for me to stand it. I remember we sang (and I have hated the song [and unfairly so] ever since) "What a Friend we have in Jesus" and my head was ready to burst with protests to every piece of lyric in the song. Before the song was over, I walked out of the service. No, not angry. Not ... not really anything but numb, confused, and not in a hip-hop churchy upbeat mood to express my 'joy in the Lord'.  I felt lost, and I was angry, perhaps, that the church service at that moment failed me. HOW could they have a service that did not address the emotional needs grieving persons who came to worship? Could you only go there if you were happy? That day, I longed back to the High Mass Lutheran services I occasionally attended in my childhood.  But it wasn't this church's fault. That was just church in America. Besides, I really felt that this was God's fault. I did not understand why this baby had to be afflicted, why my family had to suffer, why we all had to feel so sad and lost and overwhelmed. My lostness --the shock of carrying a baby that might not live, that might not this, that might not that... and the awful, awful wait  of weekend-- felt unbearable, and yet unbearable is the wrong word. Of course it was bearable. I bore it. But I had a terrible sense of wanting to  run off somewhere, only the 'problem' was inside of me. There was no escape. What was this thing?? One other thing we did that weekend was give Ben his name. We knew he was a boy, and we knew that he was a person, and as such, talking about him and discussing how to love him in the future was helped by identifying him.

I might add, that that weekend, we also informed grandparents of the situation we found ourselves in, and I don't think either side had anything to add or offer that was helpful at the time. Both sides of grandparents were thousands of miles away, and I think they were frightened and overwhelmed. They had no experience with which to reach out and support us in this situation. They were grieving for us and needed time to process this.  In some ways when our grown kids are struggling, we parents can sometimes hurt so much too that if we do not have the reserves and energy and wisdom to a glimmer of hope or a  solution , we may not always be the best comforters for our grown kids. We are too emotionally vested to be able to do so.

Monday came, thank God! The appointment was not till noon, and it almost killed me waiting for it. In hindsight (now in 2014) I realize that was amazingly fast for pediatric cardiology to fit us in so quickly... but I was ignorant of the grace extended to me at the time. I should have been very very grateful to both doctors for taking what I later found out was their LUNCH periods, to check out my seemingly ill favored pregnancy.

The pediatric cardiologist was a cheerful and kind man. He did the echo/sonogram and he instantly knew what the heart issue was. He saw that sort of hearts all the time and was able to say that it could be repaired with open heart surgery with 95% success rate. He also said he was 66% sure the baby had Down Syndrome.

25-30 % of babies with Down's
are born with a heart like this-
missing atrial and ventrcular walls
 and having fused mitral and
tricuspid valves

The perinatologist was a bit more pessimistic. He thought the baby had trisomy 13 or 18, more likely. My comment to him was that I had looked all combinations of heart defect and cleft up on the Internet and that those syndromes were very severe --the baby would not live long past birth-- but also extremely rare. His tactful comment back to me was that 'he was about due for one this year, so why not me?' I should add that I since grew to adore this man who steered me through the rest of my pregnancy with kindness and skill, but at just that moment he was, perhaps, not my favorite.

The pediatric cardiologist (a man who became my 'medical best friend' for the next four years following) kindly told us that he too had a child with special needs and that of course it was not what he and his wife wanted, but that our baby could live and have a good life and that there was a life ahead to look forward to, and a future that was not as dismal as it seemed just then. --- Those words were golden, and I still remember, even more than his words, his compassionate thoughtful confident eyes looking straight into mine as he squatted in front of the chair I sat on. It was the kindness, yes... but more than that, it was his confidence that energized me and gave me hope. Never again did I feel as bad as I did the weekend before we met this man. While the mountain ahead of us was tall and steep and seemingly insurmountable, we had met someone who had scaled it, and who was extending a hand to help us do the same.   All this was done locally in our little town of Kalamazoo, Michigan.

We went for a second opinion at University of Michigan. Not sure why we did so. I was not looking to abort this baby no matter what. From childhood and up I had always felt that abortion was wrong. And no,  do not blame my parents. It was an internal thing with me. Still is. But then, I don't even like to kill flies and I cringed as a 10 year old and forever hated one of my friend's father because he drowned a whole litter of kittens one year.

Our second opinion was a carbon copy of the opinion given in Kalamazoo, and really University of Michigan did not have any additional equipment or expertise to offer that Kalamazoo did not have UNTIL this baby would need open heart surgery. Ann Arbor was a huge hospital complex then and even bigger now. My daughter had already had surgery there at 11 months, so we already knew the place. It was competent, professional but not warm and friendly and homey like Kalamazoo. (I will discuss in another blog the specifics of my visit there). So since  Ann Arbor was 90 minutes away and the little Methodist Hospital in Kalamazoo was 15 minutes away, we stayed in Kalamazoo for the duration of the pregnancy. 

Those months from April till Ben was born 5 months later in September were calm, but it was the sort of calm that is in the eye of the hurricane. Still, I am pretty good at compartmentalization, and I took the peace I could get before the onslaught of the winds. One of my strengths is preparation, and prepare I did mentally, physically, emotionally, spiritually.

It was my only pregnancy where I gained practically no weight to speak of. I was 34 years old and in good health and spirits. I had a 6 year old a 3 year old and a 1 year old and, yes,  while it was all very exhausting to deal with it was not a bad time because of the positive supports around me. I went in every month (more often towards the end) for a perinatology/cardiology visit. The pediatric cardiologist was always there, always supportive, never in a hurr, and he was very kind to my little kiddos. In fact, I would go there with my 3 older kids, 2 in a double stroller and they just sat, patiently waiting and waiting through appointment after appointment. (Good training for what they would have to do [and did amazingly well] for the coming four years).  Ben was safe during the pregnancy, it was the prognosis after birth that was overwhelming. He would, I was told, need to be born and go in the NICU. He would, I was told, also need an open heart surgery at about 3 months. He would, I was told, have to wait with all his repairs for cleft lip and palate until the heart situation was stabilized. 

It was at that point that I was completely convinced that the only way we could get through this as a family was to homeschool, so the kids could always be with me. -- Second concern in favor of homeschooling was germs. I became (as I will tell in future blogs) a bit of a germo-phobe for a while, keeping my kids isolated so they wouldn't drag home the latest fads in colds and stomach bugs. It was clear to me before Ben's birth, and it was violently demonstrated after his birth, how he was a complete magnet for every bug that came near him, and more than once did he almost perish due to biological diversity in the microscopic and submicroscopic world.

Interesting world where you start out pregnant (assuming you are a woman :) ) thinking, oh, I have two boys and a girl, another girl would be nice. Then during the sonogram you are told, it's a boy. OK, so that is fine. Who cares if it is a boy or a girl, so long as it is a healthy child?  --- OK, the child is not healthy.... what do you say next? ... so long as he lives?? OK, he might not survive any number of things ahead of him?? NOW what do you say??

Empty Chairs and Empty Tables

:) OK, that sounds like a bit of a down title.  And perhaps it is.

The past couple of months I have had the opportunity to talk to a couple of different groups about teens with developmental disabilities becoming adults. I am by no means an expert. This is on the job training for me, and the process has been eye opening in many ways. In one group I accidentally brought some people to tears, which was far from my intent.. but I digress. Let me get back to my title.

Developmentally disabled teens experience the empty chairs and empty tables a lot.  If you don't know the song, here is a link Empty Chairs and Empty Tables from the movie Les Miserables.  In the movie, a young man laments his fallen comrades. In my analogy, I am talking about young men and women who grow up with siblings and friends, and eventually the friends and siblings move on, grow up, and they leave behind empty chairs and tables at home, at school, at church, or anywhere else where the young person with disabilities lives.

In the case of my son Ben all three of his older siblings have moved up, and only Ben is left at home. He often talks about his siblings, of late in particular of his sister, who was the last one to leave home.

A couple of weeks ago, I mentioned in some context a girlfriend of one of his brothers (because I am knitting a pair of socks for her, and one person asked me about the socks). Ben had a violent reaction, "NO," he said. "He does NOT have a girlfriend!!"  I would concur that Ben has never met this 'significant other' so to Ben, she does not exist, but more to the point, Ben knows what significant others mean, he realizes how his family has scattered over the past 5 years, and he knows that having a girlfriend will add to that phenomenon. But also, Ben goes to high school, and what he sees in public high school is lots of people who are attached in different ways. I might add, that many young people at high schools in America are not particularly subtle or modest about their relationships, in fact, I would say that relationships (however unhealthy some of them are) are a mark of status in a high school. Ben may not fully understand the nature of these relationships or what they mean, but what he does know is that he does not have a girlfriend, and that the few times he has asserted to a girl that she is his girlfriend, he has been met with gentle (and sometimes not so gentle) rejections of his assertions.  He would like to have a girlfriend, simply because it is what most other people have... and perhaps also because he has the same needs and longings as others have, and would like to be close to someone--- to belong to someone, to have exclusive 'rights' to someone, to look important and valuable---just like everyone else.

"Just like everyone else" --- I think this is the key phrase. It is so difficult to be different. We all know that from minor issues we have suffered in life where we were not just like everyone else. Could be physical, could be emotional, could be the clothes our parents allowed us to wear. The longing to fit in, belong, and be accepted is strong in all of us, sometimes even to the point where we join the wrong peer groups just to belong somewhere.

Ben's situation is so controlled for the most part, he is never likely to end up in the wrong peer group. He is monitored both at home and at school to the point where he is not likely to be assimilated in groups that would worry me. What does concern me is the difficulty he has in hanging onto friends. I remember when we first came to Colorado and he was 7. He instantly found some really really good friends. They ran and laughed together, they swang on the swing set, and I think this euphoria lasted about 6 months, perhaps a bit longer. Then the 'normal' kids discovered precisely how much there was to Ben, and they started making fun of his peculiar speech. They would get together with him on the swing set, and then whisper to each other, "Let's run away from Ben", and they would lure him  far off somewhere on the grounds and ditch him. They thought it was funny, and I don't totally fault them in that they were more or less innocently exploring their interactions with each other and with Ben, and not until an adult makes it clear how that feels can we really expect them to realize how wrong it is.

This, you may say, happened to my child too, and no doubt many of our kids (special needs or not)  have experienced this. The problem for Ben is that it happens again and again and again and again. He is mentally and socially about 6, intellectually about 8, and expressive language-wise about 2. He hooks up with kids readily because he is friendly, he is willing to do what others want him to do, and many kids who have no friends will end up seeing him about and connecting with him for a while. The problem is that most of those kids are yearning to be in an inner circle somewhere where a strong-armed leadership type of kid rules, but they can't quite get in at this point. Ben is second best, but as soon as the opening to the inner circle appears, Ben gets 'trashed', sometimes brutally by the inner circle being out and out mean to Ben, most of the time just by neglect. -- Ben will cheerfully approach the friend (usually someone around 6 or 7) and the kid just shrugs him off. He has better friends now, and there is no longer a 'need' for Ben.

Public schools try to include kids with special needs by generating circles of friends, peers who volunteer to be friends for the day, or lunch buddies or something once a week. It gives our children with special needs a way of being connected.

I recently talked to our church about this, and we are in the process of setting up some sort of "Ben's Buddies" system where different teen boys volunteer to be Ben's pal for the day on a rotating basis, like once a month (it's only about 30 minutes after the service before Sunday School). It involves eating a bagel with him, and being his pal on the playground, playing ball or frisbee or something.

No, I don't totally think there is a cure for the loneliness that many children feel. Many 'normal' kids feel ostracized and different in minute ways that become significant, even defining for them. Developmentally disabled kids feel this too---and I guess this is the gist of my post. They may not have the IQ of an Einstein, but the irony is that nobody is so 'stupid' that they don't know they are 'stupid'. We know when we are being laughed at, even when we don't get the joke. We know when we are unwanted. Person's with Down's are IQ wise somewhere between 40 and 65, but in terms of empathy (emotionally perception) they are quite high on the spectrum, perhaps higher than some of us.

All that being said, as I have mentioned before, if you meet a young adult with Down's, he or she asks very litte. Silent companionship is fine. Just sitting down with him or her with a cup of tea, or throwing a ball is all they ask. I often wonder, when I pick up my son... what communication is enough. After all, if I were in the car with my daughter or one of my older sons, we would be discussing everything and anything. But with Ben, I often just drive the car, put on some classical music (which he loves to conduct to), and I occasionally squeeze his hand. I ask 'closed-ended' questions that he can answer yes or no, so he can actually answer, rather than open ended questions where he stutters and gets frustrated because he cannot answer. -- And we have a blissful quiet but satisfying time together WITHOUT discussing ObamaCare or the War in Syria.

He also loves calendars and he loves knowing what comes next, so often we talk about tomorrow, and I will mention one thing we're doing and he will ask "what next?" and after I mention it, he will again ask "what next?", which gives him a sense that he too can direct the conversation for a while. I also ask him what he wants for dinner (I know, it seems a small thing) and he will mention very interesting foods, and if at all possible, I will get them for him... or if I can't I will mention what we have and he will choose. He loves to help me cook (in fact, we're off to make oatmeal raisin cookies in just a minute here), and I try to let him do as much of the cooking as he can. It is a wonderful way of interacting... but let me say this. Our world is so busy interacting intellectually and verbally, it is quite a transition for me to learn to interact emphatically. Point being, the world is the world, and neither he, nor I, can change it, and talking isn't going to change it. Instead, he and I interact in prayer together in the morning, doing yoga for exercise last thing before bed. We do our daily household chores as a team, always together (I rarely send him off to do things on his own), and through those tasks we affirm each other, we create a pleasant atmosphere to live in, and we affirm that life is worth living.

The rest of the world talks a lot, and Ben can't join that. The rest of the world often plays, and Ben COULD join that if the games were not too rough or too difficult. We play games at his level and we play ball at his level, and my hope and goal is that in his social interactions, I can help some of his peers to discover how to connect with this unique, wonderful, compassionate and fun person named Ben, so their lives can be enriched by all that he has to offer, and that his loneliness in the process may be alleviated a touch in the process.

Thankful

There is so much to be thankful for in this dear world of ours, and it comes in unexpected packages. I remember my daughter saying just a couple of weeks ago  that so many people are so very kind to her.

Down syndrome and thankfulness -- my fear of writing a blog on this is that I will sound like PollyAnna, and while I do believe that grateful people are happier, live longer, get along better with others, etc, I am not a huge fan of PollyAnna. Her modes were a bit naive, trite, and predictable, and not entirely logical (at least not to me).

My experience with Down's was limited prior to giving birth to Ben, but I did have a neighbor who had a baby with Down's just before I left my parent's home. I remember him as a fairly placid baby, happy, content.

Most importantly, persons with Down syndrome are persons, so they have their ups and downs, just like the rest of us. The naive blissful happiness of eternal childhood, as I mentioned before, is a myth that the rest of us like to have, perhaps because it makes us feel better about the plight of persons with Down's if we think they are happy all the time. (And the trouble statistic is that teens and adults with Down's have a 10% incidence of developing autism and some 7% chance of developing depression --- both due to social isolation and a lack of control over or meaningful activities in their own lives).

But back to thankfulness, my son is a very positive person. He is cheerful and energetic every morning when he gets up. He is helpful with dishes, laundry, cooking, clean up. He is emphatically in tune with his surroundings--- in fact, I don't know a more consoling and empathizing person than him. He is outgoing and fun when we are out in the community, and he likes to greet everyone he meets, and is always ready to smile at anyone who gives him the time of day. And he is grateful for very little. A quick game of UNO, a donut, a pat on the back... anything that affords him contact with others.

I think what I am most thankful for is that he is not only thoughtful and considerate (I come home from a five minute drive dropping Kirsten off at the bus stop and he has made me tea and toast for breakfast) but that he is honest and lets me know when there is something he does not like. He is not so eager to please that he lets others bowl him over, or have others do things he thinks are wrong.

When he was born, a popular little story for new parents of children with Down's  was 'Welcome to Holland', which has a little bit of PollyAnna in it.
http://www.our-kids.org/Archives/Holland.html
The gist of the story is that you were having a baby and you find out it's a baby with Down's... and that this experience is likened to you were going to Italy on vacation, but by mistake you end up in Holland.  Holland is different-- different language, different food etc, You need to adjust. You have no choice. Italy is now out of the question.

The important 'lesson' from the story is that you can spend your days mourning your losses and never enjoy Holland, or you can adjust and make the most of it. And that is good and true, and for a new parent, who has never thought through these thoughts, *Welcome to Holland* can be an important first step in adjusting --- along with connecting with others who are also in 'Holland'.

But long term I find the issues more complex. There is a daily dying to self and dying to the reality that most other people enjoy with their 'normal kids', that the Holland analogy was never meant to answer or account for. It crops up in the little things, and some times in the big things, and quite often I find myself having a mini-mourn over another little hurdle that Down syndrome brought... and then I move on, accepting what is, celebrating what is fun, good, funny, or down right profound that parents of 'normal kids' would never enjoy or experience.

But Down's is more than Holland. Holland is a different culture and a different climate and language and so forth, compared to Italy. But Holland is not functioning with 50% less intellectual capacity, a slew of additional medical issues, along with the inability to take care of oneself or get a full-fledged participatory job in the job market.

Down's is Down's.

Analogies get one only so far, and then one has to look Down's straight in the face and realize that this is the life my child has been given, and while I would never be 'thankful' for the many  Down'sian medical components, many of them life threatening, of that life (that tiny 3rd pesky chromosome on pair 21), I am thankful for my child, AND for precisely who he is.

If it were not for Down's, he would not be who he is. And so in that sense, because I know this person, and this is who that person is, I am thankful that he has Downs or he would be someone else. And since I do not wish him in any way to go away or not be there. I am thankful for precisely who he is and how he adds to my life and to  the lives of all that I love.

And now it is time for him and me to play a round of iPad bowling before going to bed.

Tomorrow is Thanksgiving, and there is nobody more excited about holidays and birthdays than Ben. He will be by my side cooking the turkey, the gravy, the stuffing, and all. :)

Acceptance, Awareness?? All trite terms, and how do we?

I talked in my last blog about the isolation of individuals who are developmentally delayed and of how society as a whole views them and to some extent subconsciously avoids them.  And I don’t mean ‘society’ in the Jane Austen sense of ‘those we grovel at, so we get to be part of the in group’, but merely people whom we naturally rub shoulders with, like extended family, neighbors, church, sports clubs, parks, work.

Last time I also mentioned how we sometimes talk to young adults and adults with special needs as if they were six—in a sort of preachy moralizing tone that goes on and on and bears down on the individual with the aim of generating some level of shame in the individual ... and then last night I was so totally guilty of that very behavior. Ben was taking a bath, and of course we extend the same level of privacy to him that we extend to any other member of the family (or, we try to, but we don’t always succeed).

You see, the issue is that he does not have too much sense of how much shampoo and bubble bath to use (he loves bubble bath!) and we don’t really want to add weekly bottles of Ben shampoo and bubble bath to our grocery budget. So I do monitor the use of supplies by giving out appropriate amounts at the proper times. Or at least, so far, I have not found a better way to deal with this.

What do I behold when I enter, but a bathroom which evidences the remains of a massive tsunami? Totally understandable, really, when one considers that he was playing with all his Matchbox sized Cars II vehicles. :)

Well, it is not the first time I have mentioned to Ben that tsunamis in the bathroom do not come highly recommended. This time I turned up the tone in hopes of generating some empathy for my cause. Problem with us adults when we deal with six year olds is that when we are out to make an impression, we feel that we have to put the emotional stakes high enough that there is a threat/intimidation level present in our message. Once we drive that message home, we forget to quit. Instead, we go for broke—just in case--especially if the kid in question does not respond as receptively as we would expect him to.

Basically we parents don’t always know when to quit. Nor when to employ alternative creative strategies which in the long haul may be more effective. At some level I think it’s called emotional unloading. We are wrought at what we have seen perpetrated at the hands of this ‘kid’, and we need to bring ourselves down from the emotional high, and we achieve this by not shutting up in a timely fashion :P .

One time my daughter got scolded by a lady after church for sharing a laugh with another kid during a church service. My daughter was outraged because the accusation was actually inaccurate (she didn't laugh, she only smiled at the other kid). Kirsten, being my daughter, tried to argue with her, but the lady would rant nonetheless. When the lady finally left, the other girl who came from a family of five and was used to being lectured at  told Kirsten: “Just say you are very very sorry and that you will never do it again, and it will be over a whole lot sooner.” :)

And it was precisely that strategy that Ben used with me last night when I was trying to impress on him the necessity of not flooding the bathroom floor when he takes a bath. “Yes. Ok, I am sorry.” In fact, he is most agreeable, and it's precisely that strategy of "if I agree with her, she will shut up sooner."

All that to emphatically say that what I preach, I don’t always practice as well as I wish I did.

But back to my main concern and discussion about acceptance of persons with mental disabilities. It is a difficult issue, partly because so many of the persons who would be born with, f.ex. Down’s, are selectively aborted. We have effectively purged from our society about 2/3 of such individuals (my rough guess based on some statistics I heard in the Danish news) and as such, fewer of us deal with these persons, and even fewer of us begin to have a clue as to how we should best deal with such persons. (And by no means am i trying to give the impression that I have all the answers... on the contrary, I have all the questions, because I live with this all the time!)

In the 50s and 60s persons who were disabled or mentally ill were more or less incarcerated in group homes, and we saw little enough of them. Now, for the mentally ill, we see a significant number as homeless because they do not know how to deal with modern living. For the mentally disabled or developmentally delayed, we—society—do (does) have the good sense to realize that they do not have the judgment or capacity to live alone, let alone make a living, but integration is not a simple process, and as I hinted at, while we’re awesome with toddlers of whatever stripe of delays, we’re not so successful with adults.

Adults who are developmentally delayed (which is often code for permanently delayed), are ‘there’, sort of, but not really there either. We smile and greet them. We may even give them a high five. Some people (actually quite a few) laugh nervously at everything the developmentally delayed person says, as if he were a cute four year old. Let me put this strategy to rest immediately. At least for my son Ben, there is nothing he hates more than the friendly nervous laugh of a random stranger (or an acquaintance from church). In fact, most of the time Ben says, “please don’t” when people do that because he feels so not included when there is a laugh and he usually internalizes the fact of the laugh and thinks the person is laughing at him, and that hurts him.

My honest feel for what we—society—don’t get is what it means for a person with Down’s of, say 25 years of age, to be an adult. We don’t know how to talk to the person, we don’t know what the person ought to be doing. If we are in America, we also don’t know who should be paying that $150-$300 per day care for that developmentally delayed person after age 21 or 26, depending on the state ( and trust me! Neither does the devastated parents of that developmentally delayed person). But I will save the money and adult care discussion for another day and limit this solely to social interactions.

Adulthood, at least in America (I can’t speak for the rest of the world) is an earned proposition. We rise to a certain level of responsibility. We acquire independence through proving that we are capable of assuming the responsibility. Nobody takes care of us any more. We have fully arrived at adulthood. With that adulthood comes independence and with independence, the respect and the esteem that every person aims for.

How can we bestow adulthood on persons with developmental delays when we as parents can barely muster it for our own late teen and early twenty college students?

Financial independence is the one  (and greatest) measure of adulthood in America.

And yet,  since we bestow legal adulthood on anyone 18 and above, we have to think broader in terms of rendering respect, understanding, and acceptance to individuals who are 18 and over, but who do not meet the independence criterion for adult hood.

18 is an artificial legal line that has been drawn for smoking, voting, military service, and age of accountability for criminal behaviors. If financial independence is the ultimate measure, my son with Down’s will never reach an age where he will be greeted as an equal or respected in his own right. And with him go scores of other persons with disabilities, as well as a slew of college and graduate students who ostensibly could get there, but who are taking the long road to adulthood and respectability.

Can we redefine adulthood without diminishing the expectations of the average typical person to eventually (the sooner the better) reach financial independence and responsibility for his own actions?

Or can we at least define adulthood for the special needs person as having 18+ years’ experience of life in the body and mind that God gave him? And as a result of this, can we choose to try to treat that person with the respect he craves?

Remember, unlike typical adults, the person with Down’s is expecting very little of your interaction with him. He is happy to share a donut or a cup of tea, or merely to be allowed to sit next to you. He does not cringe because you have nothing to say to him. His ability to sit in emphatic silence is something the rest of us could learn from. Silence is part of his life, much of it (and especially my son who is hard of hearing and speech delayed), and so long as it is a pleasant environment, he does not always require any conversation directed neither his way, nor any conversation at all.

 When he wants to talk he will use his electronic device, write on a piece of paper, or simply try to articulate what is on his mind. He expects little of your return talk. If you receive his talk positively (and that simply implies that you listened), he is content that he made a connection. Rarely does he even require a specific response.

I am not advocating anything here that needs to be legal or enforced. I am simply looking for 'awareness' (however trite that term has become nowadays). In particular for those of us who strongly advocate that abortion of mentally challenged babies is so very wrong -- we need to carry that principle through in terms of support of parents who 'choose' (and yes, it is a choice, since Roe V. Wade) to keep their disabled children, such that society is welcoming to these disabled individuals when they become adults.  And that requires some level of re-education as to how to interact with these 'NOT perpetual children-neither in mind nor in body' individuals.