Finding .... no, not Nemo, but ... Ben

Where's cross-out-Waldo-and-Insert Ben is the subtitle of this blog, I suppose. It is a game, but it's harder than the Waldo game because I rarely remember what he is wearing. Waldo usually has that same hat and those same colors on.

One of the most interesting aspects of dealing with almost non-verbal persons with special needs is an acute lack of communication.

DUH, you say, I am sure. And DUH is right.

If I had a dime for every time I have run around frantically looking for Ben .... :)

Let's see the most intense time ever was when Ben was somewhere around 7 - 9 years of age, we were staying late after church to set up for a special event, and Ben was nowhere to be found. Nowhere. We enlisted every person who was still at church, about 30 persons or so, men, women, and children. We looked in the parking lot. We looked down the road in the old barn. We looked in the temple, in the parish hall, in all the restrooms, and in the Sunday School rooms. We made double circles around the entire building. No Ben. I was just short of calling the police in case of kidnapping or in case, Ben was walking down the very busy highway just outside the church. A dear friend grabbed my hand and said, "It's high time we prayed." And so she and I walked into the temple, kneeled down, prayed, and didn't get more than 3 minutes into the prayer when a bunch of children burst into the temple. "We've found Ben!"

Where was he? Where had he been?

Well, in order to find Ben, you have to think like Ben. You see, he loved Mrs. L. And he had wanted to go home with Mrs. L and play at her house, something he had done in the past. Mrs. L. had not locked her car. And what better way to make it clear that he wanted to go home with Mrs. L than to sit in her car and let her know when she and her kids would get ready to go home. Well, Ben did not know that we were staying late at church to set up for a special dinner, so while sitting in Mrs. L's minivan, he had gotten tired, laid down on the back seat and fallen asleep. --- and now you know the rest of the story.

On a similar note, just a couple of years ago, we had gone to church to a concert, rather than for a service. I helped in the kitchen with some desserts we were setting out for the singers after the concert. Just as the singing was about to begin, I could not find Ben. I spent half the concert looking for Ben in the church buillding, then I decided to go outside. I prayed hard as I circled the building, and then I caught a glimpse through one of the windows at the back of the altar where someone was moving. There should be noone behind the altar at this time, so the answer to my riddle was solved. Ben was back there, fully robed as an altar boy, waiting for the service to start.

I won't continue with the details. Ben has come home with the police after wandering out of our house, I have lost him in stores, in parks, school has lost him. He is never far, and to find him, you have to think like Ben.

In a like manner, when things disappear from this household, one is tempted (one, meaning all the rest of us) to think that Ben has taken it. It's a difficult situation to be in because some times it is true, but often it is not true. A few weeks ago, I could not find my daughter's cell phone. I was supposed to mail it to Greece for her. I did not accuse Ben out loud, I just had a sneaking suspicion in my mind. I combed through his room, but alas, I was wrong. I found the phone. Ben had nothing to do with it.

Not so with the time my new iPad was lost. I really could not find it, until school called and told me Ben had brought an iPad to school, did I really want him to do that?

Then there was that one afternoon when Ben told me he wanted a hot lunch for Friday's school lunch. We do hot lunches sometimes, but for the most part we don't. I told him no. We pack our lunches. Well, apparently he decided he was going to have a hot lunch, and he knew where I kept money, and he took what he thought was $3, so he could buy a hot lunch at school. -- Only, it turned out to be $300, not $3.

Last week, he tried to wear his 23 year old brother's leather jacket to school.

Ben is not a thief, or at least I do not see him as such. He has (and I wish they would change the way they have money open in a basket) taken money from the candle basket at church (where people put coins and take a candle to light).

OK, I know that is not a good thing, but Ben has no clue. He looks at a basket with money, and he has learned that the green stuff can buy you a hamburger or a new shirt or a game. Every week that basket just sits there with green stuff. Why doesn't anyone do anything with it?  And so at one point, he took some. His pockets were full. He was asked to return it, and he was somewhat landed on, and as far as I know, he emphatically (though not logically) understands that he may not take that money. (Ditto for my money at home. I sent a strong emphatic message that he may not take my money...but I also moved my petty cash to a new location and I keep less of it at home).

Telling mom or anyone where he is going is an issue. Asking before taking is another issue.

In both cases communication is minimal. For one thing, if he declares, as he has in the past, that he is going to so-and-so's house because that is where he wants to go, what does that get him? Not much, most of the time, since most of the time his wishes do not coordinate with everyone's schedules, and so what he wants does not happen, so what's easier than just trying to do it on your own?

Ditto for stuff. He has asked and he can ask, and I do try hard to honor his wishes, but at times the answer is no. When the answer is no, there are a million reasons why Ben would want to argue with me about the issue, but he has not the verbal command to do so, not even close. The most he can do is get in a yes-no-yes-no-yes-no battle, and that does not work with any person who is in authority over him. So... what is easier than just taking what you want on your own. Most of the time it probably works, and when it doesn't, you learn something new

Finding Nemo... finding Ben... finding stuff  that may or may not be there, which may or may not be Ben's fault.  The worst is accusing someone of having taken something and finding that the 'someone' did not take it... you misplaced it all by yourself. I have raised 4 kids, and I HATE accusing when I am not sure, so generally I don't. Perhaps that results in Ben getting away with stuff. I am not sure.

Again, I would say, Ben is not a thief. He would give you his shirt off his back, if you asked. He would give you his last piece of candy, even if it meant that he didn't get any himself. He does like to collect stuff, but not hoard it. He is very generous, perhaps so generous that he assumes that other people hold as loosely to their stuff as he holds his own stuff. So it's no big deal to him... stuff isn't.

Special Needs and Church

This is a difficult post to write because there are so many aspects to special needs and also so many aspects to church.

Let me start with the beginning. We went to a very supportive church in Kalamazoo, Michigan which went above and beyond the first few years while Ben was in and out of the hospital. So many people took our three older kids in (kids ages 2,4, and 7 at first) ...for the day... overnight... etc.

Ben got well enough, around age 3 or 4, to actually come to church when it was not flu season, and he was in the toddler nursery and they loved him there.

When we moved to Colorado Ben was 7, and the church we ended up in was/is liturgical, which was an excellent fit for Ben. The routine of the liturgy is amazingly soothing for him. The sermon/homily is not as long, so he sits through that just fine, and all the bells and whistles (incense, icons, prostrations) -- worshipping with all 5 senses-- works really well for him too. He can be part of so much of it, and he likes it. Ben also is an altar boy now, has been since 2009, and he does very well at it, and likes working behind the altar, carrying candles, helping with communion, handing out blessed bread. It is all a great fit, and I am grateful for a church that does not require his intellectual articulation of his faith in order for him to be baptized or have communion.

Fellowship and him being within the church was also easy when he was little and cute. He was there, playing with whatever group of kids were of his age and mentality, and it worked. I did mention, previously in this blog, that kids have grown up past him and that he has gone through many mini-generations of friends at church, but at least he had friends.

I believe our church really wants to love and include Ben. The biggest problem is that nobody (including me) really knows what that looks like.

As Ben has grown older and looks older (he has to shave now, about once a month or so) he is not so cute in the eyes of people, and for those at church who did not 'grow up' with him over the past 10 years that we have been there, they are not so sure about him --- not on the playground with 'littler' kids, and not in general as to his responses, or lack of responses, nor just with his trying to fit in and hang out.

It's not just church, it's just the world in general, but I find it most painful to deal with at church, perhaps because one has high expectations of the Body of Christ, and so one thinks that people 'ought' to understand or have some enlightened sense of compassion for Ben, which most of the time people don't. They have their own little worlds and they operate in those worlds, and when Ben is in the way or seems not to fit, they mark their boundaries-- most of the time to the exclusion of Ben.

I think society explains Down Syndrome as basically a mental delay, so that Ben is understood to be mentally about 5-8 years of age, with 5-8 year old emotions, and so the impression most people have is that he can be treated like he is 5-8, he can be expected to obey, share, etc... and I have mentioned all that before.

For Ben (and I cannot speak for other teens with Down's) that does not really work. He is 17, not 5. He has more complex emotions than a 5 year old and he understands the rules and knows the behavior expected of him better than a 5 year old. What he has is a mental processing deficit that doesn't make connections that sometimes even 5 year olds would make.

In addition he has a huge disadvantage in that when he gets in conflict with a person, he cannot verbalize his position, his emotions, or his anger because his expressive language skills -- due to cleft lip and palate, due to a moderate hearing impairment, and due to Down Syndrome -- are about at a two year old level.

As a result, when he is in a situation of conflict (like someone telling him he is too old to play on the playground, though he knows he has a special permission to be exempt from the playground rule) he will resist because he knows he is right, but he cannot say why, and usually he will lose because the person who is telling him  ______________(to leave, or to return an item that is thought not to be his, or otherwise to comply with a request) wins the verbal combat. He then gets upset, and he has hit people in frustration, though most of the time he just runs and hides somewhere in a corner where nobody can see him.

I understand the frustration of an adult who is trying to keep order somewhere, who doesn't know how to relate to a kid with special needs, that is hard. What I do not understand is escalating a situation with such a kid when the kid is not really doing anything that is immediately harmful or threatening to anyone. (Of course if there is immediate risk or harm, intervene at all costs).

With a kid with special needs... when in doubt, show mercy. (I would almost use that as a guideline for dealing with all kids, but  CERTAINLY, I would use that for kids with special needs.) Why would I want to risk upsetting a child whose emotional apparatus I do not comprehend? In that case, why not call the parent and get a little help on the issue, rather than risk a situation you don't know how to manage on your own... or risk a relationship with a kid you don't know well enough to really engage with to start with.

That would be my biggest frustration with church --- the number of people who are willing to engage in unpleasantries with a kid with special needs, merely in order to enforce a rule or uphold what they find to be a 'higher principle' -- and who do not think of the emotional consequences for the kid.

I think that is worse in church than it is 'on the street', simply because church so often becomes this high-minded quest for all the correct principles, for the perfect ideology, and once that ideology has been fleshed out in detail, all one has to do is follow it --- and to 'hell' (pardon my French) with persons.

Persons with special needs do not fit all these neat boxes we can set up for what kids (or for that matter) people) OUGHT TO DO: For every box you have, be it an age box, a noise limitation box, a no-squirming in the pew box, a MUST STAND at certain times box, a don't take too much food box, a don't hog the swing box, and worst of all, the no hitting box... all these things that we OUGHT to be able to do, the kid with special needs and even the adult with special needs will not always be able to fold up and crawl into the box.  And when he fails to fit in the box, the social cost to him is high as there is great disapproval from the majority of people, and with that disapproval comes the sense that ' this is a simple box to get into, even HE ought to be able to do this .'

And then there is the parent -- and that is me.  The parent does not always take it well when you decide to take on her child---especially not when he was doing no harm. Mom's attitude is that any time he is not harming something or someone, and if he is otherwise having a good time, -- pardon me, but 'screw the rules!!'.

 Momma Bear comes out.at you--especially if her kid ran off and hid after you decided to escalate an encounter with him.

Remember ... and I just read this in a book called Special Needs and the Church.... remember Mom spends all her time fighting the school system, the social services, the right for junior to participate in all sorts of age segregated stuff, so when she finds junior thwarted at Church, she goes on auto-pilot and brings out all her fighting skills that she uses for him in the rest of the world. Yes, she OUGHT to do better in church. Yes, she ought to be patient and kind and understanding... but she too is exhausted, tired of the same old same old ever fighting for her child's rights to live and breathe around other human beings, tired of always being on 24/7 call because unless she is near junior most of the time, something will happen, and someone will think junior ought to be able to do something he cannot do, and as a result, she will WISH she had been there and not taken that ten minutes to herself to chat with a friend while junior ran off.

No, it's not usually that bad all the time, but these things come in seasons, and they come with certain personality types who for one reason or another think that mom isn't doing enough to keep junior reeled in. You know it with typical kids as well. There are always people who think you don't do what you ought with your kids. Multiply that by 10 when it comes to a developmentally disabled kid who might slug another person (yes, I agree it's unacceptable, but it happens) or who might accidentally expose him or herself because his social skills and sense of where to scratch what is not particularly heightened.

Mercy !! And I will end with this diagram (Carolyn Vance's) .Text is from Shakespeare's Merchant of Venice.

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!!