Christmas with Ben

Christmas with Ben this year was most interesting. He did by far give the most presents, and that in itself is a feat. :)

First there was his pottery class where he spent all semester making bowls and crocks and other glazed objects which he wrapped, put under the tree and gave out for Christmas to every family member. Then there was all the money he earned for chores through the school year, which he totally spent on giving a present to each family member, and then there were all the little extras: the cards he wrote and handed to folks, and the assemble your own snow man kits which he brought from school, wrapped and gave to us al... and then there was just his general Christmas spirit which was one of giving and not one of getting.

Ben has to be one of the most generous persons I know. It is true, as I documented in blogs before, that he has no sense of how much shampoo to use in one hair wash, how much syrup to pour on one pancake, or how many donuts to take at church fellowship. He very much enjoys 'filling' things to the brim. Ask Ben to bring you a glass of water and you will get a full service job, complete with icecubes and filled to the brim. He hasn't quite figured out the fluid dynamics that further cause the contents of the water when in motion in the cup to keep moving at a constant velocity (Newton's First Law) while he comes to a screeching halt as he hands you the cup. It is a slight threat to your key board, or any other surface near or on you, which might prefer not being doused in water. Anything that he is asked to fill, he fills, but not out of greediness. It is more so out of the spirit of how fun it is to fill things up to capacity and see whether we can squeeze in one more grain of sand, drop of water, or squirt of glue. It's the process of filling that delights him. If, after pouring a gallon of syrup on a pancake you ask if you may eat his pancake, he takes the same delight in giving that he does in filling. It's yours buddy!!! He would give the shirt off his back, if he thought you wanted it... and never look back in regret.

I finally did solve the syrup, shampoo, etc pouring problem. I instituted a 1/4 cup measuring cup in the bathroom. He pours his shampoo into that (and yes, it spills over a tad, just for good measure), and that is all the shampoo ... and later bubble bath... he gets for the day. Ditto for the syrup. We have a 1/4 cup measuring cup at the breakfast table, and that suffices for the pancakes. That same principle, BTW, is applicable for Ranch dressing on salads. (Why did it take me 6 years to figure this out? I must be more developmentally delayed than I tend to give myself credit for!!)

We're ready for the new year, armed with an electric Spider-man toothbrush, new shirts and ties and pants, and mighty generous spirit which not only is great at saying thank you to everyone he comes in contact with, but which is perpetually cheerful, excepting perhaps when his two older brothers start laughing too hard, and Ben doesn't get the joke, in which case the result is a slug fest... and believe me, Ben has a mean fist :)

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.

Interacting with the Public

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do we accept our children's disabilities?

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

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

So let me qualify what I mean. 

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

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

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

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

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

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

What do I mean?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Continued Stereotypes of Down Syndrome

Ok, so I am continuing my post on stereotypes and Down Syndrome, and a couple of people (one on Facebook, and some in email) said they were looking forward to my continuation, which frankly just made me nervous. I am not sure I have anything profound to say on this. This blog is somewhat 'therapeutic' for me, in the sense that I put my thoughts down on 'paper' and it helps me solidify what I think and how I deal with the stresses and challenges of being the parent of a child (soon adult) with Down's.

But to continue the thought of people's reactions to our children with disabilities as well as people's stereotypes of our children....

.... well, as I mentioned last time, I think it is critical to view most people not as rude and mean, but as unequipped to know how to respond in a way that is affirming to the person with Down's and to his or her family members.

When I was in graduate school, I went to meet a Muslim student with a bunch of his friends at his apartment (along with a bunch of my friends-- we were all going to be cross cultural pals). I entered the apartment, reached out my hand, and the first thing this man said to me was, "I don't shake hands with women."  (A great start to a very brief relationship :P) ...

So many of our encounters with other cultures begin and end like that. How often have I been told by Danes (my native compatriots) that Americans are SO RUDE. They don't wait for the host to raise his glass and say cheers before they begin sipping the wine at a dinner, they don't bring a gift to the hostess when invited for dinner, etc.--- basically, they don't know all the European rules that one just knows when one is born and raised there. (And incidentally, after almost 30 years in the US, I forget more and more of those rules, and find out the hard way when associating with compatriots or family from Denmark).

My point is... Americans are not rude. Americans are just as well meaning and kind and friendly as anyone else, but they never had a chance to study and internalize the rule book, and it is absurd for any of us to impose expecations on other people that they have no earthly chance of meeting.

So, back to special needs. My son with Down's is kind and well meaning, but not particular mature for 17, and certainly he completely lacks in judgment in many areas. For example, he has no thought for how much icecream he takes. He just keeps piling it in his bowl until it is full... and it makes him look greedy. At school, he tends to hoard the cups from the cafeteria and brings home a stash in his backpack (we're in the process of returning them). He nabs things from other people's rooms when he decides he likes them, and at church when we have a brunch after services, he piles his plate with more donuts than he can possibly eat. --- I used to get many complaints from church, as I mentioned in another blog, "here is Ben's plate, he is not eating any more, what shall I do with this food?".  But it stopped when I sat a couple of the ladies down and explained that Ben's ability to judge about how many donuts to take is non-existent and that it is not likely to ever change, and that while I can breathe down his neck every minute, I can't both sing the venerational hymns in the choir after the service and be in line with Ben for the donuts. -- Ben has now been excused, at church, as a kid who does what he can, but who generally takes too many donuts. (I am relieved!) --- But the list of things that he does like that is enormously long, and my ability to check and prevent all of them is limited.

We have a check list in the morning (my mental check list) of what I need to remember to do and oversee for Ben in order to successfully get out the door in time to make the school bus and in time for me to get to work.

1. Check his clothes for stains and spills (he has taken off on occasion with yesterday's mustard and catsup stains running down both shirt and pants... doesn't bother him).
2. Check propriety of clothing for weather (shorts and sandals in snow, does not bother him).
3. Check propriety of clothing for occasion... he has gone to school in pjs, surgical scrubs, pirate costume, as well as one of his sister's pink shirts more than once.  (In fact, I still remember the day that Nick and Alex Ben's older brothers just about rolled on the floor in laughter in response to Kirsten's scream across the house, "NO BEN!! That is MY underwear. You can't wear that!!".
4. Check his lunch. He likes to make his own lunch out of leftovers from the fridge, but tortilla chips with catsup, covered in apple sauce, does not a complete lunch make.
5. Check his back pack that he has not taken something from someone's room that is not his, or something that he is not allowed to take to school (one day he acquired my new iPad and decided it should go to school. Last week he took my graphing calculator).
6. check mouth and cheeks... is the oatmeal from breakfast still hanging out in corners and crevices.
7. Check glasses for transparency.... they vigorously partake in consuming Ben's breakfast EVERY MORNING.
6. Hearing aids --- do they work, do they need cleaning, are batteries dead.
7. Etc for snow days, and .... miscellaneous things that school requires on different days.

I fail miserably at some of the above, and we often get a call from school about something I missed. And going out in the community, after school, grovery schooping, I keep forgetting to check Ben until I turn around in the car to make sure he is buckled, and that is when I see the chocolate veneer around his mouth, or the crusted tomato soup on his tie (Yes, he wears button up shirt and tie every day... his choice).

Many of these things are society's expectation of the hygiene and behavior of a child aged 10 and up, and I understand and I do my best to model the right routine and behavior so my son meets expectations and isn't a complete weirdo, but rushed moments, tired moments, ... it's just life, and people in the community, some, point it out, others just stare, and most, thankfully, are blessed kind thoughtful people who just take him as he comes, regardless of how many layers of food he has embalmed his shirt and pants in.

On the other hand, to come full circle, 'society' (to use a Jane Austen'ish term) is not equipped to understand what it is like to raise such a child, nor do they know the efforts parents put into helping their kids appear reasonably presentable and clean... all they see is a filthy shirt that they would NEVER have let their toddlers appear in... and given their only experience (likely one point five toddlers over a 4 year span) they don't quite understand, either why my son is such a slob, or why I don't seem to give a ¤#%¤&%¤ about it.

It's OK. The random judgment of the vast gray masses that i will never see again don't matter that much to me. Those who know us, may understand (or not) the main thing to me is that I try to do as much as I can for all of my 4 kids (3 of whom are grown) to help them be presentable to society, to not be a nuisance, and to fit in as best they choose to... and the most I can do for Ben is to fix appearances a little when I remember and not to worry about the rest because frankly, when it is all said and done, I don't want him to remember me as the person who could do nothing but correct his appearance and constantly berate his lack of ability to exercise proper hygiene, and this for a bunch of people out there whom I don't know and whom I will likely never see again.

:) So in the words of Farragout: "Damn the torpedoes. Full speed ahead!!"

Stereotypes

Ok, so I have pondered a lot about stereotypes and Down syndrome and how hard it is not to be trapped in those stereotypes.

I remember a few years back standing in line to get into the Denver Zoo. My son Ben (who happens to have Down syndrome) was standing next to me. He was probably 11 or so. In front of us was a lady with two kids somewhere between the ages of 3 and 5. The 5 year old boy kept staring at my son (probably because of his repaired cleft lip, but possibly also because kids with Down's look different). Eventually the boy moved back towards his mom, who sheltered him with her arms and said, "Don't worry; I won't let him hurt you".

Another event... one neighbor, when Ben was first born and we knew he had Down's sought to comfort me with the fact that to her, Ben didn't look like he had Down syndrome at all... as if 'looking or not looking' like Down's would matter.

Another scenario, Ben was born with cleft lip and palate, and because of his heart condition (a typical Down Syndrome heart), his cleft lip could not repaired surgically till he was about 2, whereas most infants with cleft lip get it repaired within the first two months of life. During Ben's first year, at one point, we were at the library with him in his car seat inside the stroller. He was quite a sight because he had his cleft lip (a unilateral cleft on the left side, going all the way into the nostril) as well as a feeding tube coming out his other nostril, and tape to keep his feeding tube in place. (He was wont to pull it out otherwise). Well, this lady came running up with a smile, "I gotta see the baby! I gotta see the baby!" and then when she got up to the car seat and peeked in, she turned to me and grimaced, "oooh!! What's wrong with him?" 

An elderly family member was so nervous she cracked an ugly baby joke when she first met him. 

But beyond appearances, I have also run into out and out stereotypes, in particular in the dental field, that we won't take your son as a patient because patients with Down syndrome bite. This from both orthodontists and regular dentists. I understand the stereotype. If their experience is that this is the case for the most part, and somehow they don't relish being bitten, naturally they prefer not to deal with patients who have Down's. However, in the particular case of my son, he is extremely cooperative in the dental chair, more so than most typical kids, and he does not bite. In fact, he LOVES having his teeth cleaned... LOVES IT!!! And when a dentist finally concedes to take him as a patient (this has been an issue), the comment usually is, WOW, he is more cooperative than some of my adult patients.

But my point is not to catalogue wrongs. Many of these incidents are actually funny when I reflect back, like one little girl in public who saw Ben in a park in his stroller, ran back to her mother, whispered and pointed , and then the mother pretended to casually stroll by us to sneak a peek, as if she didn't at all mean to look.  There are many silly stories like that.

As I said, this is not a litany of complaints. It's more of an illustration of how some people respond to a situation where they do not know what to do or say, or where people react to my son with their own prejudices on the forefront, rather than reacting to my son as a human being who may or may not fit their stereo typical expectations.

A relative of mine years ago described how he and his wife were visiting some historic site and a school bus of mentally handicapped teens showed up at the site and swarmed all over it. At the time, this particular relative expressed that they felt awkward with all the handicapped children around, not because they objected to them, but because they did not in any way know how to relate to some of these students and their unusual behaviors.

His story came before Ben's birth, but it always struck me as the most honest of reactions. He was not equipped by education, experience, or even the common sense to know what to do or say, and in his case, he did nothing. 

Most people DO something. They either react nervously, or they act out of curiosity. Their emotional apparatus seems to require some outlet of whatever emotional energy is pent up, and interestingly enough, it is up to those of us who have the children with special needs to normalize the situation by including the confused or emotionally upset, or curious by stander in the life of our children in such a way that our children do not suffer or feel stigmatized by the encounter.

The few times in public (and it happens to this day) where someone, adult or child, asks me "What's wrong with him?" I always say, "There is nothing wrong with him. This is Ben, and I am Lene. What's your name?"

When he was little in a stroller, I always made a point of saying hello to people who clandestinely sneaked a peek... this was for the sake of my three other kids who were 6, 3, and 18 months old. 

In fact, my daughter tells me that I so normalized Ben and Ben's condition to her that she was near  10 before she realized that he was 'different' in a lot of respects. (I did not mean to do that in the sense that I was always open about the issues we faced with Ben, but growing up with him, she just assumed that that was normal.)

To round this out... I think it's difficult to meet people who are different on their own terms. And I think it's more difficult with people who have special needs. And I think it's more difficult the older kids with Down's get. Four year olds are adorable... and four year olds with Down's no less.

When a person gets into his or her teens and is approaching adulthood, there is a pseudo-sexual switch that takes place, and we as humans start evaluating people on good looking or not good looking, and to some extent that subconsciously involves greater or lesser degrees of sexual attraction.

Young persons with disabilities are human beings and therefore sexual just like any other human being. But one major hurdle that our society suffers from is that it has no conceptual apparatus for dealing with sexuality in adolescents and adults who are mentally handicapped. We have no framework to put it in, it falls outside our own experience of attraction, because it involves persons with mental ages more so approximating that of children. And so while it is difficult conceptually to learn to engage children with mental handicaps at any age, it gets harder as they grow, and as a result we often blunder or emote when encountering such individuals.

I shall expand on this another day, I have a conference tomorrow to go to and a son to put to bed.

:) 

A Trans-parent View of Down Syndrome

Ever had one of those days when it's over 90 outside, you get up, get ready for work,  feed everyone, head them all for the car to be conveyed to their respective places, only to discover that your 16 year old son is wearing shorts, a tank top,  and camouflage colored snow boots with wooly socks? 

Ever had one of those days when you get ready to leave church and your 16 year old son took all the markers from the 2nd grade class room and stuffed them in his underwear and you have to drive back to church to return them because you did not notice until you wondered at his constricted walk up the stairs?

Ever had one of those days when a lady at church approaches you with a paper plate full of donuts covered with salsa, grapes, and cream cheese, informs you that your 16 year old took it and did not eat it and it is a waste of food, and what should she do with it? (And the devil inside you wants to answer, "I'm good, but you may eat it!")

  Down Syndrome - what is it?

 The dictionary says,

 noun Pathology .

a genetic disorder, associated with the presence of an extra chromosome 21, characterized by mild to severe mental impairment, weak muscle tone, shorter stature, and a flattened facial profile.

My 16 year old  son has this ...eh ....pathology (what an odious word that is), and it is about him and living with him that I have chosen to write this blog.  His name is Benjamin, he is a sophomore at our local high school. He is about 5 ft 1 inch, 102 pounds, and he loves to bowl, horseback ride, follow the birthdays of everyone in our family, and write letter.

He is the topic of this blog.

I named the blog 'trans-parent' --- because as the villain in Dicken's novel "Little Dorrit" says, "It is my character to be  _____" and then he lists a bunch of traits. It is MY character to be transparent. People tell me so, and it is both to my detriment and to my merit --- depending on the day and the topic. :P

Also,  hopefully my blog will connect with other parents, so the blog with go trans (across) to other parents. But I also hope to show the reality, the ups and downs (if you will pardon the trite pun) of daily life with Down's, for him, for his parent/parents, and for those who connect with our family.

The dictionary mentions the physical characteristics and medical manifestations of Down's only. That definition is what most people know about Down's, but that tells you little about what it is like to live with a person who has Down's. The joys and also at times the -not-so-much joys that accompany that person's sojourn with his family.

Before I delve in with a weekly post of curiosity, hilarity, or other tid-bits of life in the 'somewhat-slower' lane, let me dispel some myths here.

First of all, I am not planning a rosy rah-rah-you-can-do-it blog. I am not that personality, to start with (FAR FROM IT!!), and also there are other pep-rally spots out there telling  how persons with Down Syndrome are human beings with likes and dislikes just like you and me (duh!!).

I am also not writing specifically for families with babies who are just getting started. Seriously, if you have a baby with Down's, you  may not want to delve into teen and adult issues yet. Each day, each year has its own set of challenges.. I know I wasn't ready for teen issues when my son was just a baby.  I needed all the encouragement I could get just dealing with the medical, and frankly, he was plenty sick, that I had days when I did not think we would ever GET to the teen stage.

I am also not writing from the persons-with-Downs-are saints perspective. I remember one time when our family was in line for confession at church. My daughter reported to me that as Benjamin went up to confession, a lady said to her, "Oh, but I am sure he can have nothing to confess."  Well, as his sister, Kirsten could assure this lady that Benjamin had PLENTY to confess.

What I am doing is writing from the perspective of the parent of a near-adult son with Down's with all that it entails from the joys and the fun and the moving moments, to the medical, to the social, to the financial. to the emotional to ... to... to the unmentionable that nobody talks about, but which are issues or concerns that are real struggles for parents to deal with, that may curl the toes and hairs of siblings  (especially when things occur in public).

There is a whole person in that package with trisomy 21, and there is a whole person with hopes and fears and dreads and impatience and love and fatigue and elation in the momma to a person with Down's, and it is both those persons I hope to shed a little light on in this blog.

"Don't give up the ship", the dying command of James Lawrence in 1813 aboard the USS Chesapeake..... :) Life is a gift, and infinitely worth living. Even when  I sometimes mutter to myself, "I so totally did not sign up for this!!"