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!!