Merry Christmas

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."
Isaiah 53:2 

It goes, perhaps, without saying that the special needs community (persons with special needs, their families, friends, and service providers) is as diverse as the rest of the world, and as such, the views on how to include, what to include, where to include, etc are as varied as the number of people in the community. 

But it is not just our political, cultural, and religious backgrounds that cause us to differ in our approaches to inclusion, it also has a  lot to do with what sorts of special needs we are dealing with.

My son Ben has Down Syndrome plus. (My nomenclature, offered without apology). His cleft lip and palate, severe heard defect along with various co-morbidities that accompany such physical diagnoses, affect his abilities to hear and to speak. His speech and hearing have over time isolated him enough from even the typical peer interactions that more healthy youths with Down syndrome are able to enjoy, that he has acquired the additional label of Obsessive Compulsive Disorder.

Now, all this to explain where I fall on the special needs spectrum in terms of how my approach to disabilities came about.

I do not have one of those "YOU CAN DO IT IN SPITE OF DOWN's" sons. My son will not lose 60 lbs and suddenly become a handsome body builder with Down's. He will not, through my "Asian mom-style" teaching suddenly become the only kid with Down's in his high school to pass a non-modified consumer math class. Nor will he take a small speaking part in the school play to "prove" that he is really just like the rest of the kids in high school.

It may feel good and natural for parents with extraordinarily talented Trisomy 21 kids to have their daughter with Down's be a cheerleader, or have a son sing the national anthem at a big sports event. I am not discounting the pleasure of such an exhibit (for the disabled person, his or her family, and his or her friends). Some may even find such feats inspiring, and if so... why not enjoy the inspiration?

For me, however, and perhaps, also, for others who are dealing with a more severe and complicated battery of challenges, this 'just like us' mentality, which is demonstrated by getting one exceptional person with Down's to do or act the way typical peers act, is not only discouraging, it is out of reach. 

Not only is it out of reach, the 'just like us' mentality can also, without meaning to, devalue persons with disabilities who will never achieve such a 'just like us' moment. The humanity of a person with special needs cannot/should not be measured by (parent, school, services)'s therapeutic abilities to support a disabled person to perform at near-typical levels in one isolated splinter skill. Not only does such an achievement not 'typicalize' the person with disabilities, over-valuing narrow therapeutic foci runs the danger of only valuing persons with disabilities when they overcome a deficit. It also runs the danger of devaluing other persons with the same disabilities who cannot attain that one splinter skill at the same levels of performance. 

My humanity cannot, indeed should not, be evaluated based on the skills sets I have been fortunate enough to acquire, given my physical, emotional, intellectual, and spiritual gifts in life. Any one of my gifts can be 'snuffed' out in a moment of misfortune, no matter how gifted I might have been at birth and on.

My humanity, your humanity, the humanity of all persons, including those who -- to a greater degree than most of us-- struggle with physical, intellectual, developmental, and emotional challenges lie in their being born human. Our respect for the value of all human lives must begin and end there, regardless of whether they can walk or talk, regardless of whether they can regulate their emotions, count to 100, or feed themselves.  

Life matters, and yes, we all matter, but some of us are more at risk for not mattering, namely those who have been mistreated, misunderstood, ignored, and devalued. 

He came to us as a little child, humble and helpless. There was 'no room' for him at the Inn. He was not valued, welcomed, or noticed.... because ....

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."

Be kind, for everyone you meet is fighting a hard battle

It is estimated that up to 50% of persons with Down syndrome have acquired some sort of depression, anxiety, or some other mental disorders by which they cope with the loneliness that often comes with their intellectual disabilities. (Mental Health Issues and Down Syndrome, National Down Syndrome Society) 

It is also estimated that during a 12 month period, as much as 10 % and perhaps all the way up to 26% of the population of the United States likewise suffer mentally in some fashion. (Understanding the Root Cause of Anxiety and Depression, Animals in Research and Teaching, University of Wisconsin ) That should give us pause to think about the people that cross our paths. Note in particular that ages 18-25 are the most prone. I often wonder, in my college classes, how many of the precious men and women who struggle through some of my gen ed classes are already on overload.

Ben is 18. He is in that category, and he has suffered significantly more with finding his purpose, identity and sense of belonging, since growing up and watching his siblings move out. (See my blog about Empty Chairs and Empty Tables).  

Most specialists we consulted this year, as his mental health deteriorated, thought  Ben was autistic -- certainly he had the circular, self-stim, self-talk, rigid approach to life,  transitions, and change that one would expect from an autistic individual. All evals placed him on the autistic spectrum, except the last eval -- the augmentative speech evaluation. 

The only psychologist in the state who specializes in Down Syndrome (and thank God for her!) established  after 6 months of  WAY too many appointments that Ben has OCD, obsessive compulsive disorder. 

Because Ben has Down syndrome and because Down syndrome comes with its own peculiar coping mechanisms, OCD in Ben  walks, talks, and quacks like autism. He obsesses over numbers, calendars, getting out the door on time, birthdays. Anything where he thinks he knows how it ought to go frustrates him when it's changed. Today when I bought pair of running shoes at the store, he was upset all the way out the door because the lid didn't properly fit on the shoe box (I had thrown the shoes in rather sloppily). We had to stop and readjust, and all became happy face :). 

[Incidentally, the joke at my work-- as well as from my children-- has often been that I am/have OCD because of my meticulous labeling of my files, my orderly desk, my tendency to work ahead, and my never leaving my office or my lab without straightening it up first. I WILL NEVER consent to that label again, after witnessing how truly dysfunctional and debilitating OCD can be. It's a joke, I know, but those of us who are anal and get a lot done may be obsessive, but it's a functional obsessive -- not a compulsion.]

Ben is not autistic. Ben is social, he wants to connect, in fact, he loves people, but his limited expressive speech skills trap most of his thoughts inside his head. When in conversation, or when people ask him questions and expect him to reciprocate, he gets incredibly anxious trying to get the words out of his mouth (remember cleft lip and palate and an unusually large Down's tongue!) because most of the time the conversation has moved on and he never got one word in.

This year in the spring, I was called to his Sunday School which consists of a cool group of 6th grade kids. Suddenly in the middle of the class he just laid his head down on the table and wept because he could not keep up with the conversation.

Ben's coping mechanisms are self-talk and imaginary conversations in "Ben language" which is largely unintelligible to the general public. He has a stuffed bear named Ben who is a best friend and he processes stuff with Ben the bear. Ben is patient (Ben my son) but he does sometimes melt down. When his every attempt to talk results in nobody getting what he meant, he can go on overload like a circuit board. The switch just flips. In fact, when *I* misunderstand him, he gets down right angry. "NO, YOU'RE WRONG," he yells. But usually I cannot make amends right then and there because he needs time to process his anxious body down to its more normal state.

Ben's normal mode is to have chronic anxiety when out with people. After a misunderstanding -- if it is bad enough -- he will collapse quietly and withdraw to a safe spot, which is a good strategy. The problem arises mostly when folks insist that he stay and deal with the situation. That is when he may make a scene. The scene is simply signaling for people to back off and let him recover his energies as only he knows how. 

I shared Ben's recent diagnosis with a wise Ukrainian lady from our church, and her comment was this --- that for every Ben out there, struggling to connect socially as he grows older, there are 10, perhaps 50 kids that walk and quack "normally" (whatever that means) who suffer the same degrees of social anxiety. Some of those kids grow up to suffer as adults too. It just breaks my heart, and it reminds me to be kind to kids, even kids who are difficult to love!!

Kids will act out and let you know they suffer. Adults do not. They hide, and Ben who is now an adult hides with them. He hides with movies, he hides by obsessively writing calendars that go all the way through 2019. On those calendars he writes birthday after birthday, his own, his mom's, his dad's, his brothers', his sister's, his teachers', his class mates' -- anyone he can think of -- and if he does not know your particular birthday, he might just make one up for you and give you one of his hand made cards anyways.

Birthdays are happy, they are safe. Everyone is accommodating on birthdays. They -- along with Christmas and Pascha (Orthodox Easter) -- are the safest, coziest, most loving days he can think of.  So he creates them daily by writing calendars, imagining birthdays for his stuffed animals, and writing scores and scores and scores of birthday notes to all family members and friends.

Or as in this case, mimicking his sister's graduation by writing his own graduation invitations:

Ben goes through an amazing amount of paper during one afternoon when left to himself. He also plays Yatzee or does iPad bowling while meticulously recording each score for each roll. It is a world he can control, he feels safe, and he feels productive (even if he really isn't). But this is OK. It's one way for him to cope, and cope we all must. 

I derail his circular behavior when it has gone on long enough, or when -- as is not infrequently the case -- it interferes with his getting ready for school, going to bed, or with his general self care. 

For the school year, Ben and I operate with schedules. They do on the one hand feed his OCD --- but on the other hand they add to his functionality... i.e. he is productive when following them, so unlike his other dysfunctions (like consulting 4 calendars to make sure tomorrow is really Sunday, and really the 25th) which slow him down and get him stuck in circles, these PEC schedules help him get through his day.

Imagine you have OCD.  Your social anxiety causes you to obsess: "This person is asking me a question, I know what I want to say, but my tongue won't let me say it... I stutter.... why can't I say it? I WANT to say it!!  I can't. I am a failure. Nobody understands. It's too painful. Forget people. But I am lonely, so I create my own routines for feeling befriended and loved." And for a season, they suffice. Until I have this great need to connect again. --

[More sophisticated, perhaps, but we are all socially anxious at some level. We don't stutter perhaps. But we have encounters with people, and then we go home and obsess: "I shouldn't have told him that. I was too transparent. Or I dominated the conversation and I bored him. . Or what I said about my daughter sounded like I was judging the way he raised his own kids. Or when I said that I didn't care about that one issue, I didn't mean to come across callous. Or I never addressed what he said about this issue. He probably thinks I don't care.... etc."]

The good news is that knowing Ben has OCD, I am beginning to see his actions in light of that diagnosis, AND I am going to behavior therapy (me more than Ben it seems!!) to be equipped with strategies for helping Ben weather his days with less storms on the horizon. Not all days are good, but more days are good than used to be. 

There is nothing so sacred we cannot joke about it, however. :)

So in the case of Ben, when you meet him, make sure to recognize him, perhaps compliment him on being such a snazzy dresser,

but don't converse in a way that puts pressure on him to recall answers, unless you have paper and pen and are willing to stand there and exchange notes -- or unless you have a lot of time to spare, engage him in a game of Sorry, Monopoly Jr, Uno, Yahtzee, Memory, or Jenga:

Or if you decide to sit down and watch Phantom of the Opera or Les Mis with him. :) When dealing with him, and with people who are depressed, and perhaps with all of us --- the more time you can generously invest in him, the more responsive, he will be.

There is hope,when we remember to be kind, and remember that most people's battles are ones we cannot know of or even see.

“To love another person is to see the face of God.”

― Victor Hugo, Les Misérables

...He came unto his own, and his own received him not...

"For he shall grow up before him as a tender plant, and as a root out of a dry ground: he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him." Isaiah 53:2

http://heremembersthebarren.com/2013/01/06/my-suffering-is-a-blessing-contest-winner/

These days tolerance and open-mindedness seem to be in vogue everywhere.  At least in principle.

We've all watched Bruce Jenner in his new female form as Caitlyn trying to raise awareness for his/her plight and the alienation that persons like Caitlyn feel from much the world. The ideal, as it is espoused, is that the world should view such a transformation positively and with acceptance.

Now, I am not here to discuss trans-gender issues or gender fluidity. (I have my views, but they do not belong here and now). I am here to discuss special needs.

Now, unlike transgender people, persons with special needs -- many of them -- have little control over their differences in appearance. And many people, in public, as I have mentioned before, react strongly to persons with special needs -- especially when the special needs persons have grown into the teen and adult years.... when they -- to the rest of the world -- cease to be so very cute as they were when they were toddles. 

Those of us who live with persons with special needs and have friends among persons with special needs are so used to seeing these precious people that we don't even note their differences in appearance and behavior. 

Much of the rest of the world reacts in shock when we bring our special needs children into public. I have previously mentioned that I have heard parents on playgrounds pull their kids close and tell them they won't let my son hurt them. 

This Frankenstein syndrome is alive and well (and Mary Shelley did a great job of depicting that issue in her book). 

It is perhaps by nature that we recoil when we see something unusual like twisted torsos, spastic movements, deformed faces, and missing limbs. Combine that with a bit of drooling, loud incoherent noises, a wheel chair, or a speech device, and you have  "not normal! high alert! not sure what might come from that quarter!" resounding in people's minds. Their natural inclination is to withdraw, circle the wagons, and stay in hyper vigilant mode... just in case. 
Just in case what?? 

Persons with special needs are not particularly strong or dangerous. It's a little absurd to be so scared and vigilant, especially of persons with limited mobility and limited speech. So-called 'normal' people are FAR more dangerous.  (Kind of like when C. S. Lewis commented that our fear of dead people is entirely irrational. What kind of men would be less dangerous than dead ones?)

Back to Jenner for a moment... much as I can feel for anyone who is different who struggles to get the world to accept his or her differences -- I do feel that the emphasis on persons like Jenner is misplaced. persons like Jenner do have a lot of choice about how they want to appear before the world and the level of differences they choose to display  to the world -- all while demanding that the world accepts them as they choose to appear. (Conchita Wurst comes to mind here. A lot of CHOOSING to shock in places where Conchita KNOWS people will be shocked. There is an element of volition here on the part of Conchita.)

Persons with special needs do not have much of a choice in how they look. They are not out to shock anyone. What they are is what they are. And in a lot of ways  I feel that to revolt in horror at a handicapped person the way you may revolt if you do not like the looks of Conchita is a gross unjustice to the handicapped person!! (Not that your reaction to Conchita is necessarily 'mature' or well thought through either, but at least Conchita aimed to shock and if you bit the bait, you responded as expected). 

In contrast, these precious men and women who are born with these 'physical and mental differences' who do not fit the expectations of our  youthful beauty focused culture are treated with gross injustice when we do not check our reactions to them. They may not come across as the epitome of strength, flawless features, and genetic perfection. Many men and women with special needs display unusual body movements -- my son's head is always tilted to the left, he stutters and speaks incomprehensibly, and he drags his right leg because it is too long. He has an enormous underbite, and he makes odd noises, often at times when others would consider noise making inappropriate.  

Now, where am I going with this and why does it matter? It matters because how you receive these persons affects how they view themselves --- it affects their self esteem and long term, it may be part of determining whether they suffer depression in their adult years. 

My son in particular has a speech delay/difficulty which largely isolates him in terms of communication and in terms of being able to relate to people socially. This difference and the isolation that has come with it has caused him to develop autistic like behaviors in order to cope with the isolation, the difficulty in breaking through to communicate with others, and the difficulty in feeling part of any one group. His autistic like tendencies are not any ONE or HUNDRED persons' fault at all. I lay it at the feet of nobody, but I do just want to put it out there as part of who he is because of how he has been received in the world in general. Adolescence and not being so cute any more has been a super hard pill to swallow for him. I am not sure it has gone all the way down to be digested yet.

And frankly, I would 'fault' if I may, Down Syndrome organizations for some of this. When they feature persons with Down's on magazines or as poster children, it's the girl with Down's who became a model, or the girl with Down's who was part of the cheerleading team. It is almost always those persons with handicaps who most conforms to our society's worship of beauty and accomplishment. It is not the average, slightly overweight girl with Down's or a boy like mine with several facial and midline major asymmetries that get picked for the pamphlet or poster. The mantra is usually 'just like us', and then we smear a goodly layer of make up on the girl and say, look how pretty she can be. The mantra is rarely, this is what he or she looks like. THIS is humanity!! This is a person. We love persons, and therefore we love this human being as well. 

Many with special needs feel isolated and not included --- if they don't fall in the category of 'cute' or attractive. Or if they don't fall in the category of persons with good social and communicative skills. These persons have difficulty building social bonds with anyone but their care givers because they get so little opportunity to be included in the main stream of society, even at the most rudimentary level.  

And so, WHEN I see the Bruce Jenners of the world trying to be accepted 'for who they feel that they need to be' (or however that needs to be put to reflect their intentions most accurately), I confess, my thoughts go to people much more in need of support, in need of acceptance, in need of being loved at first sight for who they really are -- namely those who cannot fend for themselves, those who in spite of costly surgeries (I lost count of the number we have done on Ben's face alone) look a bit 'different', and whose only chance of inclusion is a friendly smile, a pad on the back, a "hello, how are you?", a "come swing with us, there is room" from the general public. 

I wish MORE energies would go in the direction of trying to remedy this social ill.
(And I thank my daughter Kirsten for the initial thoughts that went into starting this blog.)

Down Syndrome and Autism

If you are a socially awkward introvert like me, you too have experienced the trauma of the party where you only knew one person.

Think of that one year at your spouse's work's Christmas party, the year when two hundred people were milling about with stem glasses of wine and teensy paper plates with mini-quiches and meatballs. Your spouse left you for a second to discuss the January budget with the accountant who only comes in on Thursdays. But he did not introduce you to anyone, so you had nobody to talk to. Sure, the people around you were all nice, and you knew none of them were out to harm you. But standing there with your back against the window, clutching your wine glass for dear life, you knew you did not belong. You knew nobody cared whether you were there or not. It was another one of those events that were to be endured till your spouse would return and magically make you feel part of something again. Everyone else was laughing, comfortably walking about, brushing elbows, feeling welcome wherever they choose to stop to join a conversation.

Second scenario -- same party, someone walks up to talk to you. It's Joe's boss. He tries to be friendly, but you know nothing about him, except that he ruthlessly and without explanation fired Joe's cubicle mate Miranda last fall. You want to be kind, engaging, smiling, and positive -- for Joe's sake. Words fail you. 

Take these scenaria with their accompanying anxieties, and imagine that this was your day every day. That almost every encounter you had with another human would feature risks, rejections, misunderstandings, disappointed expectations. After a season, you quit trying. You prefer staying home with your favorite movie, Harry Potter 3, where every time you turn it on, there is Dobby slamming his head into Harry Potter's dresser drawer, and there is Harry, saving the day for Hog Warts. 

That may, to some extend be what life often feels like for a person with Down syndrome and autism. So much of the world makes little sense to start with. When you finally make sense of something, the world keeps changing, and it is that change, and the Downs-autistic person's inability to predict or stop the change that causes him either to check out, or to melt down.

When roughly 25%  or more of  any given day spins out of my control, my mood begins to be affected.  I'm talking mundane things like toilet overflows, a late fee shows up on my mortgage payment because the Bank web site did not work, my sitter for work suddenly fell through,  I was 30 minutes late to Ben's appointment because of traffic on I 270, etc. If that were every day, all the time, eventually, I would give up or melt down too.

Less questions, less talk, more quiet, more acceptance, no pressures ... would be nice for any of us when we are overwhelmed in a social setting.

Coping with Special Needs - One mom's journey

What absolutely broadsided me after becoming a special needs mom was dealing with other special needs parents. Doctors and nurses kindly connected me with a Down syndrome support group, and I went a time or two and fizzled.

Support Groups

No, I am not against support groups, and I have been supported by many wonderful people over my son’s 18 years, but I would say that there is no one way of dealing with this, and I would add that our differences in dealing with these stresses majorly divide parents of special needs, who to the rest of the world SEEM to have so much in common.

I was introduced to the Down syndrome community in Kalamazoo, Michigan first. My son has Down’s but that was the least of my problems. He also had a severe heart defect, cleft lip and palate, digestive issues, respiratory issues, etc. 

My real first support group consisted of parents --not with children with Down's-- but with severely ill children who might not make it. Most kids with Down’s have one or two medical issues that gets repaired, after which junior grows up on a Down’s growth chart, with a Down’s developmental schedule, he reads, he talks, he moves about, and he generally turns into a congenial, fairly easy-going fun kid. My son was near-comatose the first year, and then screamed the second. Theses parents had concerns about sitting and walking, I had concerns about survival. 

Ben spent four years being so critically ill, that he seemed like a minor miracle every time he turned the corner on the latest threat (bacterial, cardiac, pulmonary) and came through strong.  He is largely unintelligible today (though we do have communication devices and paper and pencil to clarify), and he shows traits of inflexible, rote, autistic-like behaviors, which result in quiet, inward-turning melt downs when his world becomes over-stimulating or too unpredictable for him. He has Down's, yes, but that is not the biggest issues in helping him cope with life productively.

Alone

But, even when I find, as I have, communities with kids who are in-one-aspect like Ben, we each walk this path alone. Our children do, and we do. But alone is OK. Alone can strengthen you.

Note – I am not knocking support groups or friends. I don’t know what I would do without folks who can relate to a particular struggle with a Medicaid refusal on needed equipment. What I am saying is that special needs and how we deal with the challenges is fundamentally related to our basic coping mechanisms, many of which we bring with us from our childhood homes. 

For example, when I was pregnant with Ben, I was determined not to abort, though we knew from 17 weeks that he had significant heart issues, clefts, and Down’s. I went to appointments at University of Michigan Hospitals, and time and again, a doctor would encourage me to consider abortion. I was mildly annoyed and found the suggestions inappropriate, but I have always been a somewhat independent person (I moved 7,000 miles from my family at age 22).

When I would mention these encounters to friends, my friends would have tears well up in their eyes at the thought that a doctor could suggest that I should destroy Ben. And I thought, .. huh?? This is MY kid, and you are crying... and I am not?? 

Call me Mr. Spock … but the idea of destroying Ben was a non-issue, since the ‘choice’ to do so was entirely in my power and I knew I would not allow that. I don't get emotionally upset at potentialities. Good grief, he was so sick, and there were so many unknowns. If I had mentally chased every bunny trail of what could have gone wrong, I would be neurotic by now. 

Venting

Another event I remember involved a short-term friend C., whom I met when Ben had his second heart surgery and managed to stay in the hospital for almost four weeks due to post-operative complications. 

C.’s son was in the same intensive care unit as Ben, and when C.’s son’s recovery was complicated by pneumos, she freaked out and spit nails at doctors and nurses right and left right there in the cardio-thoracic ICU. She was acting out of raw fear – her fear that her son would not recover.  She was fit to be tied, and the nurse exited inconspicuously while nodding to me that this was my friend and I would be the best person to talk her down to size. 

Nothing wrong with C's reaction, and she was a chill gal most of the time, and she needed to let it out. That was not me-- at least not in public. I was raised to be a polite inconspicuous Scandinavian who tries hard not to inconvenience others. At times when my son's life was threatened, I'd either move into action (if there were something  I could do) or I would internalize it, or try to process it by discussing the details with the cardiologist. Somehow understanding the scientific details engaged me in intellectual pursuits which somehow dulled my fears and gave me an illusion of control. 

Then there are the long-term threats, like the realities of what my kid will actually be able to do or not able to do in life.  Parents of special needs have a variety of coping mechanisms there too.

When your kid is really really sick, like mine was, you tend adapt what I call the total-parent-child-bond, where this kiddo is the only thing that matters to you, and caring for him trumps anything else you do. 

This backfires....

... when he gets well (or if he dies) you have no life left, and no friends either – doctors, nurses, surgeons, nutritionists, respiratory therapists, the medical supply delivery truck driver, and your friendly Walgreen's pharmacist were your only friends -- all paid friends. – I kid you not, when we moved from Michigan to Colorado, we got a SIGNED CARD from everyone on staff at our local pharmacy at Walgreen's in Portage, Michigan to tell us good bye. We had teary eyed goodbyes and hugs with pediatrics and cardiology, especially.

I was in the total-parent-child-bond for about six years because Ben was so sick, and I think it is a dangerous place to be because it is not-sustainable. Your kid will get better, or your kid may die, and you will come out on the other side, having missed happenings in the rest of the world -- you forgot Aunt Ethel's birthday  ten years in a row and she is miffed. you don't see your neighbors, your church doesn't remember your family any more, and the people you thought WOULD be there for you when you are finally out of the medical tunnel have gotten new friends and have busy lives that have moved on. 

Medical Friends

As examples of my sheltered existence for those six years, I have no recollections of the second Clinton presidency – what he did or did not do, whether the economy was good or bad, what happened in the rest of the world during those years.  That pretty much translates to Kosovo and the Balkans  did not happen in my little universe of medics, oxygen tanks, G-tubes, and feeding pumps.  

I have heard that some moms get so dependent on Medical-ville in this stage that when their child is about to get better they develop Munchhausen-by-proxy syndrome and actually physically MAKE their kid ill just so they can come back to the hospital... so they can stay in the world they feel loved in – kinda like a recently released convict who commits a crime so he can go back to prison because he does not know how to function in the real world.

I was  not like that. I was relieved when the pressure let up and every morning was not a game of dice where the options were ER, doctor's office, inpatient, surgery, or stay home and tube feed.

I always the one who did everything for Ben in the early years. -- Not healthy -- I saw other parents of special needs children who were seriously ill, who took turns in the hospital, who shared the care of the child, who took turns being up at night, and I think that is a healthier mode than what I ended up in. When my son was three, I was offered the chance to go to a silent retreat, and I realized that nobody else in my household was capable of taking care of Ben, so in effect I could not leave without training folks, getting nursing support, etc. And I did make that change, untied myself a bit from that leash, and left for 2 glorious days of simple foods, quiet evenings with candle light, the woods, a few girlfriends and some much needed rest.

Blame

One of the more toxic coping mechanism for us parents of chronically ill children is: ‘whose fault is this?’. 

I had friends who had a great need to blame someone. Not that anyone blamed anyone for a kid being born with a specific syndrome, but when something went wrong with that kid, when a doctor failed to notice a condition, or to take it seriously soon enough, all the negative energy pent up (from the frustration of having a child with a chromosomal abnormality and all the side effects ensuing from such a condition) could then be targeted at that one physician who made that one mistake on that one day. 

It’s kinda akin to kicking the dog after you have had a bad day at work.  He is the next thing that crosses your path, you have had it up to here and then some, and he just happens to be in the wrong place at the wrong time. I think we all do that, at times, and hopefully we ask forgiveness and restore relationships, but the danger comes in when that becomes a life obsession – always trying to find someone to blame when something goes terribly wrong.

Anger

I have met many parents of kids with special needs who at the root are very angry people. They are angry at school, at all that school should be doing for their kiddo, but isn't. They are angry at doctors who didn't catch certain symptoms, or who chose the wrong treatment. A good example of this is the crowd of parents who band together to blame their child’s autism on the MMR vaccine – a claim that cannot be substantiated scientifically, and in fact, one that has been refuted thoroughly by the medical community (http://www.immunize.org/catg.d/p4026.pdf) . They feel angry. They are dealing with what they do not want to deal with, and they are profoundly disappointed in the issues that their child has. Life has thrown a curved ball, and they cope by finding someone to blame, someone outside the family, and they unleash their anger by joining the anti-vaccine community and spreading its message.

Not to elevate myself beyond the reach of anger. I have had many angry moments, moments where I felt trapped by having to care for this medically complicated person. I gave up a career in nuclear physics research, I was much removed (for a season) from my three older kids because I had to take care of Ben, and now that Ben is an adult, there are still times where I fear the future in terms of how I am going to manage to work and have Ben in adequate care that I can spend my 40-50 hours per week on my job.  When things go ‘wrong’… like chromosomes divide incorrectly and a child is born with a ‘syndrome’, there are a host of feelings to deal with: anger, fear, frustration are the chief ones, and we parents of these kids are changed forever as we deal with those emotions through the rest of our lives and through the rest of our children’s lives.

Many of my friends have become advocates for special needs and sit on councils and in committees, or get jobs in  the special needs care  industry. They know every law, everything their kiddo is entitled to and they are super resource centers for new parents and ignorant parents like myself.

Breaking Free

When Ben “finally” got better—somewhere around 2003 when he turned seven, we happened to move to Colorado. I saw this as my big break. I wanted out of Medical-ville SO BADLY. And since I was leaving behind Dr. Page, Dr. Loker, Teresa the audiologist, Jan our nutritionist, so say nothing of Dr. Sommers, and the whole cleft team at C. S. Motts. Since I was going to a place where nurses would not fight over who got Ben, to a place where the receptionist in cardiology would not beam at me and discuss knitting with me when I walked in, I decided to redefine my life.

In Colorado we put Ben in school, and I started writing books, getting more involved with Church, and amazingly Ben’s health was super (for the most part, apart from that once a year pneumonia and that annual surgery or two). – I actually became SO IGNORANT of special needs issues as I focused on the classics, started knitting socks, and reading the Aeneid in Latin with my older kids, that when Ben turned 16 I found out that I had missed – by two years—the time to sign him up on the long wait list for adult long term Medicaid.  

HAH!! Ignorance is not always bliss.

I did not join another support group till Fall 2014, just in time to get on board with Ben’s guardianship, etc. which I have spent many other blog posts outlining. Neglect, perhaps. I needed a break. And in the meantime, I have a job now, a life, a church, friends, and I also have a corner of my life which is dedicated to special needs.  – 

My life is more balanced now.

But, life with special needs is a roller-coaster, perhaps just like the rest of life, only more severe in the ups and downs, and in the turns. There is never a day where I can just drop everything and go somewhere. I always need to find care before making plans (just like you did when your kids were under 8).   - How do we cope?  We just do -- because we have to. This is the hand God has dealt me. It is the hand I must play. Best to do it cheerfully whenever I can. (Which is -- some of the time.)

Special Needs in Worship

Ben became an acolyte in 2009, when he turned 13.

Who is here?

The word 'liturgy' means 'work of the people' and in worship we 'work as a people' in prayer and in singing God's praises. We sing, on key, off key, on beat, off beat, and somewhere between here and heaven, angels filter the noises and stream them into pure hosannas and hallelujahs. 

Some of us can already hear that pure angelic sound, the rest of us are still trying to tune our minds and hearts and bodies, so that some day, we too may be able to worship with purity of heart. 

We are easily distracted, and perhaps that is why worship services need to be so long? It takes us that long to tune in and really HEAR, not only the angels, but also God's voice.

It is easier to tune in with the middle-aged lady who sings off key, or with the dad who spends the entire service whispering answers to his three year old's loud questions. Better yet,  it is more entertaining to observe the annoyed elderly lady who is glaring at the three year old. 

Of course you may also find entertainment in observing the ten year old who is kicking your seat, or sigh at people like me who sing too loudly. Your mind may wander to  the harried wife in the back row--is her marriage falling apart, or to the young mom with the baby--is she married?

 Up in the balcony, another kid is pacing the pews. Why doesn't his mother tell him to sit down? And the squealy eighteen month old, whose mother never takes her out, no matter how loud she gets.

And then somewhere towards the left in the back is that  special needs kid, the one who always sits by the aisle, the one who absolutely cannot carry a tune, but who loudly and joyously praises God, partly with his hyper-nasal grunts, and partly with his arm motions, You see, he is pretending that he is directing the the choir from fifty feet back.

By Diane E. Berry

The Ethics of Church

How many noises is a toddler allowed to make, and at what intensity, before his father or mother or grandmother is obliged to take him out of the worship into the hallway or the cry room? And that grumpy teen who did not want to come, the one who doesn't stand when everyone else does, the one who slouches and scowls, shouldn't he be MADE to stand up out of respect?  Or what about the mother who brings cheerios for her baby, and when they leave the pew is strewn with crushed cheerios, which get under your skirt as you slide out of your pew? And did you notice the teen with the mini skirt who goes to the bathroom three times during a 90 minute service?

And then somewhere towards the left in the back is that  special needs kid, the one who always sits by the aisle ... shouldn't he be able to 1. be more quiet 2. keep his hands to himself 3. not say OH NO when he drops his hymnal 4. not push in the communion line?

Tolerance in Church

In church we are all special needs. We are all noisy, wiggly, and our behavior--no matter who we are--will annoy someone. Yes, even if you are the practically-perfect-in-every-way lady, who subtly glowers at the three year old or at the teenager -- your curse is the expectation of perfection, which in God's House -- a hospital for all souls -- is only achieved by the gift of oblivion... oblivion to all but the liturgy. That three year old and the special needs child with autism are your path to sanctification, just as you are theirs.

Special Needs in Worship 

I have been blessed by so many people in church, people who tell me that my son's enthusiastic singing of "For HIS m-uh-uh-uh-uh-ceee en DU-reth forEVer, Alle-LU-i-ah!", or that his waving his arms or the eagerness with which he rushes up to get communion is a zeal for God that inspires them to be equally single-minded and hungry for God.

Our church, as I mentioned above, is liturgical, and while I am not out to bring everyone to attend a high church liturgy at all, I will observe the following things about our particular church that enables my son to stay through the service.

Liturgies have a lot of components that repeat Sunday after Sunday, or that repeat during the liturgical year, like certain songs at Christmas, certain stuff at Easter, etc.  The standard responses at the reading of the epistle and the gospel, the sounds surrounding communion, BEN knows them forwards and backwards and he loves to sing them.

We light candles, we burn incense, we ring bells. There is motion, there is sitting still, there is standing up, there is kneeling down, there is going round and round in procession. We light candles. And then of course there is communion, anointing the sick with oil, waving palm branches, sprinkling with water, etc.  In addition to that there is also the reading of the Bible and the sermon. Those parts are a little more cerebral, but the over-all tenor of the service is that it is for the baby, the toddler, the kid, the teen, the adult, the elderly -- it is for everyone, and as such the service is varied, yet predictable, long, yet with many bright points of expectation for Ben of ... this is when we get to walk up. This is when we get to touch the robe... this is when we get the blessed bread, this is when we process out.   

Ben feels in control because there  is a clear beginning, middle, and end to the service. 

Ben knows the service better than just about anyone else. 

He knows when to say "Christ is Risen", and to respond "Indeed he is risen". He also knows that at Christmas, we say "Christ is born", and "Glorify him". And he knows that on regular days we say "Christ is in our midst", and the response is, "He is and ever shall be". 

Some people are not fond of ritual services. They fear that the meaning goes out of a ritual because it can become rote.  BUT REMEMBER THIS .... for persons like Ben, those little rituals are KEY!! 

Not only can he participate on an even level with anyone else, he actually  participates more than anyone else. And his joy in doing it, brings blessing and meaning to all around him.

At Easter, he says "Christ is risen" to everyone he meets, and it gives him great joy that they respond "Indeed he is risen!" every time!! Here is finally a conversation he can initiate and complete, and it makes him feel part of the community. 

Ben is (I am bragging) perhaps the best, calmest, most obedient and in cue acolyte. HE loves to carry the candles and help the priests, and he does it well, without distraction, because this is what he is all about -- being part of the liturgy -- the great work of the people who worship God. 

In short

In past blogs I have spoken of our difficulties with special needs in church, but I should modify that. We have had issues with Ben and other people during fellowship times.

WE have not had issues with Ben during worship times. 

Yes, there may be some who glare at him--probably are--I used to notice them and feel hurt. I don't any more, at least I try not to. When I can I turn a blind eye to folks who may be annoyed at my son. (After all, they are poor souls who struggle with distractions.) Just like I don't really hear babies screaming (I am just glad they are not mine to deal with :)). I choose to only hear from people who bless Ben, and they are many... very many. 

I never tire of hearing folks tell me how Ben's joy in the service is such an inspiration to them.   

Guardianship - today was the day

Today was the day--the big day in court. I dreaded it. Not sure why. Perhaps it is the same way that I feel guilty if I am driving down the road and the police is right behind me? Perhaps it has something to do with coming to terms with reality yet again?

Reality always hits. Often I prefer to ignore it and live in my own world -- that  slightly nicer, more pampered, and more me-centered world. 

Getting guardianship of my 18 year old multiply disabled child was another slap across the cheek, courtesy of reality.  

The journey with special needs is always one of acceptance -- acceptance of what is, of what must be -- NOT OFTEN of what we would like to see. 

So good bye Captain Kirk and the legendary Enterprise, along with his luck quotient which defies all odds. 

Good bye to what I thought I really wanted, and what I dreamed of.

Hello to reality.

When a child is born with special needs--for many of us--our first tendency is to think that we will just exert ourselves and become the super-parents who overcome all odds by sheer will power. We will press through with therapy, interventions, and SUPERIOR parenting, and our child will be the most brilliant  and accomplished child with Downs or autism or cerebral palsy that ever lived.

Then,  month after month, year after year, we are confronted with:  He didn't sit till he was 12 months. He did not walk till he was over two, he didn't get potty-trained till he was 13, he didn't speak till he was .... wait?? ... speech?? What speech??

There is wisdom, as St Francis says, in changing what we can change, accepting what we can't change, and knowing the difference.

The journey with special needs is all about figuring out that difference. Vive la difference!! But it is so hard to TELL the difference.

The difference more so comes with time, as we try, realize it's a lost cause (like speech, for Ben) and then we ACCEPT the Ben that is . And we learn to do so without sinking into depression or despair for each hurdle that we recognize as insurmountable. 

Accepting what is is hard, and after that, what is even harder is  learning to find the beauty, meaning, and depth in  our own acceptance, in our child, and in LIFE.  Then somewhere down the road, we grow beyond looking for beauty and meaning, and we learn to LOVE the life we have with our special child, in fact, we want it to be no other way than what it is. 

But it's not that simple and pretty. 

The cycle I described above of struggling, accepting, finding meaning, and finally loving WHAT IS, is a cycle we enter over and over again with each 'issue', sometimes each day, and some days each minute.  Like finding the humor on Wednesday morning when I handed Ben some DayQuil for his cold, and he swirled it around in his mouth and dramatically spit it out in the kitchen sink. Last year when he got braces, I spent MONTHS teaching him not to drink dental rinse. He GOT that part.... hallelujah... but this wasn't dental rinse... :) 

My child is disabled, multiply disabled, physically and mentally both, and he will remain so for the rest of his life. There will be no third naval officer in my string of sons, no summa cum laude Benjamin graduating from the University of Colorado. Acceptance, yes! Grief? Sometimes.  

I have known all that about Ben since I was 17 weeks pregnant when we named him while he was still in the womb. 

And yet there are days, hours, minutes, when the thought of living with an adult with special needs--and all that his care demands of me and my time and resources--feels so overwhelming and stressful and impossible, I simply do not want to dwell on it. 

There are other days, when I wake up to conquer a the real world that very much includes Ben and all his needs. In fact, on some days that world looks so bright and dazzling that I would not trade it with any of you for your most brilliant, compassionate, and accomplished young adult child.  

In short, my days are like yours, some up, some down, only my days have that 'enhanced Ben-ness' feature that I paid a little extra for. The rest of you just got the standard version. 

Today was one of those overwhelming days, as Ben and I got up and went to the local district court house to sit at the hearing where the judge was appointing me to be Ben's guardian.

You see, last September Ben turned 18, and I filed  that month the paperwork to become guardian for Ben. 

If you are near this process with your disabled child or with an elderly or incapacitated relative,  here are a few tips. And after that I will round out with my thoughts after court.

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Your State Judicial Branch should have all the paperwork online. Just Google " 'state name' Judicial Branch". 

Here is the link for Colorado Guardianship. 

Look for self help forms, click on Probate (not to be confused with 'probation'), click on 'guardianship'. There should be both papers to fill in and instructions on how to fill them in, along with an FAQ. I filled in all the pdfs online, then printed them. It was a lot of work, but it was not difficult work. 

Some people hire a lawyer. I would not recommend that. The process is easy, and it already costs about $800 total. Why add lawyer expenses unless your case is contested by someone and you need to fight?

In addition to filling in all the paperwork with the court, which took me almost a day (between filling it all in and getting it notarized and making copies), I had to do the following. 


1. Notify all interested persons  in the case with copies of all documents filed with the court.  I mailed them all at the post office with delivery confirmation.

2. Get Ben served with court papers to notify him of the impending action. 
I had to inconvenience a friend with this and that friend had to serve Ben the papers, sign to that effect and have her signature notarized at the bank. Then she had to send her signature to the court by mail. Ben had no clue what she was giving him. He took it home, and it is in a stack among his picture books. One of these days when I clean his room, I will file it somewhere. 

3. Get the primary care physician to write a letter documenting Ben's incapacities. Well, guess what? Doctors love writing those, it's so much fun. I basically sat down, listed all disabilities from emotional to physical to mental, wrote a paragraph about each. I wanted to make sure that I sounded 'doctor-like' enough, so I went to  a website to get all the proper diagnosis codes. put it in a document with doctor's name and address, and printed it. Where I was unsure of how to sound doctor-like enough,  and made an appointment. He signed after glancing over it and thanked me for doing all the work for him.

4. Pay for a court visitor to inspect you, your home, and your intentions. Ours was nice, but pricey. She charges by the hour, and she talked a lot about herself, which irritated me because she was doing it on my dime.  Other counties in Colorado don't do it by the hour, they have a flat feel, like $100, whereas I paid several hundred for her services. She wrote a good report, though.
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So this morning, Ben and I show up in court. This was his handsome outfit for the day.

We sit down, judge comes in,  we stand up again. Judge asks almost no questions (it's all in the report). I was so grateful that he did not ask me to list (as I have umpteen times before) the multiple deficits that Ben has. All that was in the report, which the judge had read ahead of time. It was pretty much a slam-dunk case, and all is done. I have my guardianship papers, and really nothing changes. We keep on living the way we already are.

Those of you who know me know that I am not often given to melancholic indulgence, but I did feel a sudden rush of sadness come over me when the process was over. The whole event, somehow, lacked a certain ceremony that might have made it feel whole or solemn. 

We walked out after saying 'bye and have a nice day' to the  judge, and it felt like ... 'so what?'  It was that institutional feeling that you have just been run through a papermill,  and Ben had just become another number among people that the state keeps its eye on. And so he is.

So, 'what now?' Well, nothing, really. Go home, proceed as always. And let's not forget to file my annual reports on Ben's birthday.

My son is 18, he has (according to the court) Down syndrome, low IQ, and significant medical needs. Based on that, he will never be an adult in his own right. He will always need someone to administer his money, provide his food and shelter, and make all his decisions for him (or most, or many, or some ...??). That someone is me. And I must accept it, find meaning in it, and learn to love it. By God's grace, I pray I do it well, compassionately, thoughtfully, and selflessly -- for Ben's sake.

And tomorrow, we will be back to normal. :)