The Death of Dreams -- the Hope of Other Dreams

My guess is that every biological mother who gave birth to a child who happened to have special needs would readily confess that this is not the child she originally had set her heart on. 

And yet, once that child is born, whatever his or her 'differences' might be, we -- as mothers -- would never want that child to be any different than he or she is -- or that child would not be our child.

I am the mother of four children, and I remember each birth, but more than anything I remember my 4th labor, an arduous 52 hour labor that started Friday afternoon and ended in an early Monday morning (2 am). A labor which became a strange metaphor of my life with that particular child. This was the  birth of my son Benjamin, a 6 lbs 5 oz son who could barely breathe, who was whisked off to NICU immediately, leaving me feeling empty as I proceeded through maternity recovery without a baby to justify my bodily pain and suffering.

I remember Benjamin's first year as an endless series of "what next"- events, seemingly endless emergency room visits, visits to the cardiologist, surgeries, all followed by interminal hospital stays trapped by every imaginable surgical complication. Yet, we all (parents, doctors, nurses, therapists, friends and family) did all we could to keep Benjamin alive -- Benjamin, this  frail baby with Down syndrome -- this mysterious gift from God -- who somehow, I was not sure why, was meant to be kept alive. Truthfully, I was never sure of anything during that first year, or during the second or third year either, other than "Dear God, keep him alive. Spare him!!" 

I pray you'll be our eyes

And watch us where we go

And help us to be wise

In times when we don't know

Let this be our prayer

When we lose our way

Lead us to a place

Guide us with your grace

To a place where we'll be safe

The Prayer - David Foster

Sung by Sissel

One of the greatest blessings as a special needs parents is reaching into the special needs community. You get to connect with some of the most awesome, some of the most loving parents the world has ever seen. 

I have amazing friends who intensely love their sons and daughters with autism, parents with kids who suffer the daily trials of schizophrenia or bipolar disease, parents whose love for their kids is incomparable.

I have witnessed Naval Academy parents (other than myself) and their dedicated love and pride for the accomplishments of their own talented sons and daughters, and it is all delightful and inspiring. However, it compares not with the fierce and dedicated love  that special needs parents feel for their children. It can't, simply because the dedication of a special needs parent is not rooted in the performance of the child. Our parental dedication is rooted  in nothing less than life itself, in survival, something Naval Academy parents need not concern themselves with until their children deploy in the fleet or in the Corps.

In my special needs groups, I have met parents whose wisdom and perspective on life has been my regular reality check. Where these people have connected with me, is where life has felt  most real, and where my pain, my fatigue, and my utter defeat as a special needs mom has intersected with the pain, fatigue, and defeat of others. Somehow in that intersection we have together found the strength and purpose to move on.

As for myself, my continued strength in being a special needs mom of a 21 year old son with Downs has been fortified monthly by these moms of adult special needs dependents. Meeting with other moms who share the daily, often petty, struggle  with both physical, developmental, and mental health challenges of facilitating a meaningful life for my son with special needs helps me laugh. I cannot discount friends who normalize my daily challenges -- a kid who cannot leave the house unless he completes emptying the dishwasher, a kid who cannot start a task and not finish it (however insignificant!)  without throwing a fit. 

Benjamin 

It is not even that we face the same challenges, but more so that we all -- as a group -- expect the unexpected (whatever that looks like???), and just knowing that others maybe understand, somehow makes it OK to have my 21 year old freak out every time he goes near a pine tree, or makes it OK every morning, that he, once again, pretends that one of his stuffed animals -- all of whom are named Benjamin-- once again, surprise!!! has a birthday. In fact, Ben the baby, this week, was 72 on Tuesday, 8 on Thursday, and then again 14 on Saturday. This requires singing "Happy Birthday" every STINKING day, it requires CANDLES every day. DO YOU ever get tired of birthdays?  Well, frankly, my dear, I do!!!!!! (and yes, I don't feel good about it.)

My son loves birthdays because they speak to him of appreciation and love. Birthdays celebrate, they honor -- birthdays are safe. Nothing bad happens on birthdays. Nothing is ever ugly on a birthday, so every day, in quest of beauty, in quest of joy, and in quest of love, he pretends that one of his stuffed creatures -- from Ben the elephant to Ben the cougar -- has a birthday. That birthday is cause for celebration and so the appreciation and love that my son so desperately seeks (and often does not get in public, often does not even get at church!!!), the affirmation and admiration that he craves every day, is formally requested with the simple declaration that Ben the bear has a birthday today -- he is 996. OK, here we go. Hmmmm?? I wonder how I will swing the 996 candles. Ben is obsessed with the number 9 because his birthday is  09-09-1996.

And this all sounds sweet and wonderful, and I am sure you can imagine yourself hugging Ben, lighting some candles (though perhaps not 996 candles, but perhaps 13 candles) and singing happy birthday. but imagine this happening -- as it does -- every single day. YAY!! this is SO FUN. NOT!!

And yet, would you do it?? 

I do. 

And my dearest friends do too -- when we go to their house for dinner every week. And I am eternally grateful for their patience and love for Ben.

Now, imagine, your twenty-one year old son is at the zoo watching the sea lion show. But instead of watching the show, he is obsessively anxious about all the people pressing in around him --- their clapping, their laughing -- it makes him nervous. Are they laughing at him? Why are they clapping? He does not get it.

In fact,  your son  is way too anxious to even look at the sea lion show -- Now, knowing that, would you enjoy the sea lions, or would you be upset right along with your son, anxiously hoping FOR ONCE that he would actually have a good time at the zoo?

Well, he won't ever really have a good time at the zoo. Well, he will say he had a good time when he comes home, but for the time you are at the zoo together, the multitudes, the loudness, the activities around him lead him to be  ever anxious --- and that  is the best he can do. 

So, what about you? Would you move beyond his anxiety, would you be able to enjoy life (at the zoo or elsewhere) in spite of your persistent awareness of his ever anxious feelings? Or would you be trapped forever, hostage to your child's ever anguished emotions, hostage to his experiences, ever trapped in his frustrations? His are chiefly frustrations of being left out. Frustrations that the rest of humanity never quite resonates with  nor understands how he feels? Frustrations that he will always be alone, no matter how hard you try to include him.

 Which parent would you be? The one trapped in your child's experiences,  or are you the one  who is truly free rejoicing  even when your child cannot?

I always wonder where that line lies between the enabler and the truly free parent of the special needs kid. Between the parent who can truly empathize with the child -- at the same time that he or she is truly his or her own person with a life full of joy in the midst of pain-- or is the latter even possible?

Where can my son and I be, where we can truly be us -- he can be him and  I can be me -- and both of us content??  What would that even look like?

There's a place for us -- Sissel

I look at Benjamin, I look at his struggles, his eternal (sometimes-- to me -- infernal) birthdays, and I wonder if he and I, with time, will find that new way of living. Will he ever forgive me all the times I brushed over another birthday with his stuffed animals-- because DAMMIT!! I did not want to light a candle or sing "Happy Birthday".  Will he forgive me all the times where I  just moved on with my morning routine  anxiously to get to work to deliver that kinematics lecture on projectile motion or that lecture on L'Hopital's rule in my calculus class?

There will always be much guilt to go around. Mom-guilt to be sure, and for special needs moms -- an extra dose of guilt.  

No, it is not all that dark. It is not hopeless. Life with special needs in not all impossible and frustrating. What it is, generally speaking is exhausting. It is exhausting because it requires vigilance, because it requires doing things you never dreamt of doing, like telling a 21 year old to wash his mouth after dinner because food is stuck on his chin and upper lip. It requires shaving a 21 year old who has matured physically, but who does not, like most 21 year olds, know how to keep facial hairs at bay. It requires reminding your 21 year old not to strip down and change all his clothes in front of other people -- and that despite the fact that you have told him that umpteen times, but his day program just called you and asked your support on this one detail because they tried and they have failed at impressing on your son, the importance of personal hygiene and modesty.

At other times, it is triumph as your son gets dropped somewhere on the bus, nobody is answering the door, and your son has the bright idea of calling the person on his phone, and because he does so, all is well --- and you are proud for a whole week afterwards and you tell everyone about it TWICE, whether they want to hear it or not.

Special needs is an odd journey, like ENHANCED life. More joy and also more pain and grief.

And where will it all end? I do not know. It keeps on plugging on. 

When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then I am still and wait here in the silence
Until you come and sit awhile with me

You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be

There is no life, no life without its hunger
Each restless heart beats so imperfectly
But when you come and I am filled with wonder
Sometimes I think I glimpse eternity

You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be

You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be
You raise me up to more than I can be

- Sissel

Welcoming Persons with Special Needs in Church - Part I Youth Groups

Ben on the banks of the Severn River, USNA, 2013.

Have you ever been alone, really, really alone in a HUGE CROWD of people who are having a blast? Many persons with special needs live like this every day, feel like this, no matter where they are at, even in Church youth groups.

I have been musing for a long time on what it means for the church to include persons with special needs – or for that matter, what it REALLY means for the Church youth group to include everyone.

This is not an indictment of my church, which does as well as any other church on this issue. This is a commentary from the 'inside' to people on the outside as to a few ideas of how churches can include special needs persons in their activities without singling them out for an annual 'special needs event'. 

(Special needs events, while useful as fund raisers and for raising awareness, are in my opinion sometimes even damaging. They give people who attend a sense that they -- compared to others -- have 'done' something for special needs, but when the event is over, they, along with most everyone else at the event go home, FEELING GOOD, while persons with special needs are just as segregated and ignored as ever).

Today’s church is very segregated. We have age-segregated Sunday School, and then we have support groups for singles, for married couples, for college students, for young professionals, for young moms, for the elderly, or for those recovering from addiction, gambling, divorce, illnesses, etc. Much like businesses do it, churches ‘target’subgroups of the population and then ‘sell themselves’ to that group. That is how churches grow, by appealing to splinter groups with needs in society.

Nothing wrong with finding ways to get people to go to church, don’t get me wrong, I am all for that.

The problem with the age, ability, interest group mentality is that it often leaves out persons with special needs, who often when it is all said and done are so uniquely alone that they would comprise an interest group of ONE.

Some churches do successfully reach out to persons with special needs and do adult special needs events or youth special needs events, and that usually works for subgroups like persons with Down’s who are at about the same ability, or other persons who comprise a decent sized group, who have the same abilities roughly.

But for most developmentally young persons or adults with special needs, not only are there not enough of them at most churches to do a class or an event just for them,  more to the point, they are SO segregated most of their lives that what they really yearn for is not another once a year special needs event where they are center stage for a few minutes. They really just want to be part of a larger group. They don’t ask much; they just want to be included – i.e. recognized as human beings, the same way anyone else would.

My son, for example, LOVES to be included in everything, but because he has ‘needs’ that are … ahem… ‘special’, there are many things he cannot participate in either because they are too mentally or physically demanding and he does not have the capacity to keep up, or because they are too loud and too stimulating for his ‘autistic tendencies’. Recently he darted out of such an event at lightening speed. Something triggered him in the midst of the excitement of the young people around him --- something told him that everyone else was loud and laughing and having a good time and that he was SO not part of it, he just had to get out of there.

So what does it look like to include persons with special needs in our churches? 

1.    Less age segregation, more integration of everyone from the 90 year old with the walker to the 3 year old who can just about play Candyland with some proficiency.

2.    Center an ALL inclusive activity around

a.    Eating, and letting the person with special needs bring something he can share or serve to some of the people there.

b.    Simple dancing  (like Greek line dances) in a way that wheelchairs  or persons in chairs can feel part of too

c.    Fun singing (everone can sing)

d.    Various games, some of which anyone can play.
(Uno, Bingo, sack races, Monopoly Jr., Sorry) (Not super competitive loud games)

e.    Prayer time with candles and a quiet atmosphere

f.    throwing balls (big, soft, easy to catch balls)

g.    writing with chalk on a sidewalk

h.    baking cookies for college students far away

i.     writing cards of thank you or of encouragement.

j.    Clean up projects

k.     Raking leaves in the neighborhood

l.     Christmas caroling

m.  A simple nature walk

n.    Serving at the local food bank

o.    going to a G rated movie

And stay away from really competitive acitivities that get kids hyped and make kids who cannot keep up feel left out. Focus more on caring and compassion, on making room for those who do not ‘naturally’ fit in as well, and challenge the more gifted young persons of the congregation to ‘invent’ ways of including those who don’t naturally fit.

Make it structured (youth with limited communication skills are often lost in a group, and even more so if they perceive that everything around them is loud and chaotic).      

Try to find ways for the youths with special needs to ‘lead’ once in a while, be that showing everyone the way to where they are going, serving part of the food, or calling everyone to order with a big whistle.

Make it short enough that there is a clear end point to the activity, where youth with short endurance can leave without feeling that they were pulled out in the middle of something that everyone else got to continue in. Once they are gone,  typical youth can linger longer as they choose.

And one thing Ben’s teacher  at high school recently suggested to me: ‘front load’ the youth with special needs. I.e. tell him and his caregivers in advance what the topic for the evening is, so the caregivers can help the youth with special needs participate and feel included right from the beginning of the event. For example, if a person, like my son, communicates through a communication device, the device can be programmed in advance with 2-3 things he is going to say about the topic, so that he actually has a living chance to feel like he is talking with the rest of the group.

Youths with special needs BELONG in our churches, and if they belong, we need to make room for them. 

Making that room is difficult because it requires forethought. It is not enough simply to assert that Ben is welcome there 'any time', when the fact is that most activities are not inclusive enough for him to participate in, and also, he cannot be there without a support person to help navigate his emotional mayhem if things get loud and he does not understand what is going on.

In order for Ben to even begin to function in a group setting, we/I/the leadership have to make sure that nobody is too loud (or he runs away and hides), that we have ways of making him feel that he contributes to the group (or he will think that every time anyone laughs, they are laughing at him), and finally, I have to pick only events where there is no overt competition or hype, or he simply cannot handle the experience. (This of course means that he cannot come every time, but perhaps we can have a few events every year that are closer to his needs where he can come and join the group as an equal participant). 

Ben does best when all ages are included, that is, when the atmosphere is collective and collaborative, not competitive. And seriously, I think that is more so what the church is about than it is about competition. (IN fact, WHEN should church ever be about competition?)

I wonder, for every Ben who cannot function in a competitive environment, how many young and otherwise ‘normal’ boys and girls likewise sit and cringe because they feel left out, and frankly embarrassed at their inability to fully participate in the games and activities  that are super fast and super loud.

The Church is a house of prayer where we worship God corporately, be we young, old, big, small, able or not able. That corporate spirit should permeate every activity the church undertakes – that sense that we are all here, we are all welcome,  and there is something for all of us to do to feel part of this family. 

It is not enough for me to SAY that someone is welcome. If a person is on my doorstep and I tell him he is welcome to walk in, but I don’t gesture, open the door wide, show him a seat, and offer him, at a minimum, a drink, my actions are in fact belying my words. He is not really welcome because I have not made room for him.

 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.' Matthew 25:40

Special Needs and Worship will be the next installment.

Judgment

Don't judge, lest you be judged. 

Perhaps that is what my title inspires you to think. Perhaps not.  

This is a blog about special needs, and it is in that light that I write about judgment. 

We all know that my judgment about what it is right for my child to do and how much risk he is allowed to assume and how soon he may mow the grass in the backyard on his own, is not going to be yours. Thank God for that! I am free, and therefore I am free to judge myself, my own actions, and my future plans.

What I am talking about in this blog is two aspects of judgment: 

1. the judgment that others pass on persons with special needs 

2. the judgment that persons with developmental disabilities have (or as is often the case, do not have).

Judgment, however bad a rep it gets in society when misapplied, is an essential skill in life. I need to be able to judge not only how long it will take me to get up in the morning, get dressed, eat, get my kids off to school, and drive to work, but I also need to be able to judge how much longer it will take me to get to work on a given day, given errands I have to run, weather conditions, and so forth. 

I am constantly exercising judgment when I decide how much and what I want to eat or buy or watch. I judge how late I want to go to bed, how much entertainment, exercise, and work I want to engage in daily/weekly/monthly in order to live the life I think is good for me to life. I make those same judgments on the parts of my minor children.  And then they grow up and they have to judge for themselves how to live.

I exercise judgment when I decide not to share a piece of news with a person who in my opinion is not privy to this information. I exercise judgment when I email a colleague at work to inquire what happened to our joint letter, which I sent him two weeks ago, but which he has yet to send back to me. I judge what to say, how to say it, when to say it, and by which medium to send the communication.

You get my point. 

We exercise judgment all the time, both in routine events that are not so hard to decide about, as well as in delicate situations that require forethought, consideration, seeing the other person's point of view, as well as in situations where we have other persons' welfare in our hands and can hire and fire them. 

JUDGMENT IS AN ESSENTIAL SKILL in a life successfully lived. Many folks live miserably because of failed judgments they made.

Judgment--lack of sound judgment-- is the sole, most important, most difficult sticky point with a person with developmental disabilities. 

[Note that when society says that someone is 'developmentally disabled' the label refers to the person's intellect only, not to any physical impairments he or she might have. So a developmentally disabled person is -- to put it in a good oldfashioned no-longer-acceptable words, retarded. In other words, low IQ. ]

Judgment is not forthcoming in great quantity in persons with low IQ. They simply are not capable of looking at all the aspects of a situation, seeing all the nuances and making a strong and wise decision. And that lack of judgment is both wonderful in that it allows them to be guileless, innocent and forthright. But it also gets them into big trouble on every front, with every family member, stranger, and friend as well as foe. AND THEY CANNOT HELP IT!

This summer both of Ben's brothers came home for a 3-4 week stretch each (not at the same time.) Each brother is military, and each brother stays in the lower bunk in Ben's room when he is home. They both tend to come home, dump their sea bags on the floor and they don't care too much about the messes they create while home, partially because we don't have much room, so there is not much room for them to store their stuff in, partly because they don't mind being slobs while they are home.

Well, during both visits, IN FACT at several points during EACH visit, I would suddenly hear an older brother's voice of panic: "Oh no! BEN!! You cleaned the room." You see, Ben likes his room reasonably neat, and when someone else makes a mess in what is his territory, he does not really have the verbal skills to articulate his need for order, so once a brother would be out for an evening, Ben would take that time to organize that brother's stuff. This resulted in long interrogations of : where did you put my computer mouse? Where are my keys? Where did you put my book? Where is my flash drive? etc.  Some of these, Ben was able to answer. In other cases you simply had to think logically of where Ben most likely would have put stuff, and in other cases again, the stuff was simply lost. Oh well!!

Almost every case of Ben's lack of complete common sense judgment on an issue goes like that. Good intentions - Bad judgment. There is a reason for everything Ben does, but he is not capable of keeping the entire picture in mind. 

Of course, I won't embarrass anyone with my story about the vegetable section at the grocery store recently :) . Those of us who live with Ben have learned to laugh in spite of other people's shocking outrage at some of the things Ben has said or done in public from time to time.

Ben's intentions are usually good, but he is also lacking in judgment when it comes to moods. He can be  grumpy, especially when -- as was the case this morning -- he doesn't get to go where he was planning, hoping, or used to going on a particular day.  This morning the usual destination would have been church, but Ben's brother was flying back to Annapolis, hence, a trip to the airport was in the cards instead. Ben was grumpy, and when grumpy his mood may randomly spill out on persons, we  meet. Ben will refuse to greet someone or refusing to comply with requests they make of him. When Ben is grumpy, he feels it, he thinks the whole world feels the same way, and he does not differentiate as to who suffers from his ill humor. Thankfully it is usually short lived, not vindictive, never violent, and mostly quiet, so not much harm is done.  It simply  must be forgiven -- one must consider the source.

I have in the past on this blog mentioned his lack of judgment in how much ketchup to pour, how much shampoo to use in one shower session, what to wear--given the weather. But that sort of judgment is difficult to inspire in a  person who cannot keep three things in his mind at once, and who in and of himself does not have many purposes to his day. 

Ben is mostly cared for, and in that capacity, he is trying to spend his time on things he likes. I can easily distract him, as I will when this blog is done, with having him help me cook dinner, fold laundry, or with me playing a game with him. But there are many hours in Ben's day, especially in the summer, where he must entertain himself. He just does whatever comes to mind. This is a low energy thing, like games on an iPad or a movie. My job is to structure his day so that he doesn't get a steady diet of media and no exercise at all. 

Now to us normal folks...

Likewise, many persons of normal intelligence have no judgment about Ben. Ben is, to them, a freak and an inconvenience, though they would never put it like that. Ben will play and have a good time when out in the community or at church, but I get called so often by people who are concerned about what he is doing, and who expect me to moderate how fast, loud, vigorous he 'does --- whatever it is he does'. 

That is fine. I much prefer getting called to having people try to deal with Ben themselves, since they inevitably scare him, and then he may shut down and run off and hide or in some what refuse to communicate or deal with anyone. 

What is, perhaps, not so easy, is that usually what others deem 'safe' for Ben is way less than what I think Ben capable of, or what I deem OK for Ben to engage in. To others he swings too high, he bounces too abruptly and hard on the slide. OR he is too loud, ... he is just  ... too.... too.... too.   I struggle to diplomatically  settle this issue to the satisfaction of all and Often I lack judgment.

What has been my conclusion in the last 3 years [since Ben got BIG and suddenly UN-cute] is that this is the battle that he and I must continually fight till the end of our days. 

There will always be another person somewhere  who thinks Ben ought NOT DO this or that. No matter how many people I 'school' in Ben and win over, there will always be another one who does not know. The 'poor' (in money, in heart, in spirit, in mind, in everything) we will always have with us. [And they are us too].

Explaining and justifying Ben's existence will be done and redone 70 x 7 times or more, henceforth and forever more. 

And what makes it tricky is this:  I have  never met a person who would not admit to the idea of being inclusive and accepting of persons with Down syndrome -- in principle, THAT IS. 

None of us think of ourselves as intolerant. We accept all races, male and female, kids, elderly, all creeds. We are all raised for democracy and for minority rights, and we are not out to squash anyone's right to BE HERE -- in principle. We believe ourselves to be kind --- and worse, we all believe ourselves to be of sound judgment. :P People are embarrassed to complain about Ben, they tell me, but their better judgment tells them they must because of this or that standard or fear or concern.  

In practice, we are all prejudiced. I am not talking racism here, but that we are prejudiced on  just about any topic we are not familiar with. 

We think we know how society ought to work and what duties each of us has towards others. We were raised with those values, and they are important to us.

When we encounter  an 'otherness' in someone like Ben, our values and judgments are challenged. And most of the time we still stick to our guns. We KNOW have good judgment, we know how to behave. It is this "otherness' that does not know what decency is. 

If we are fortunate enough to have the OTHERNESS explained to us well enough to realize that this disabled person can be no other than what he is, we may grown an inch in judgment and wisdom. But it is rare. 

Such is the case if we encounter a person (perhaps Ben) who in the middle of the grocery store (perhaps in the vegetable section) feels an itch and decides (with the best judgment he can muster) that it needs to be scratched. If that itch happens to occur in a somewhat remote and inaccessible spot on the body, there is no telling what we might be exposed to.

But need we react with shock? Is it so very shocking that human bodies have human body parts? -- Or is it shocking that more remote spots on the human body contain usually concealed human body parts?  -- Is it the end of the world, or the end of all decency, or even the end of anything at all, except our own dignity and compassion when we choose to react?? 

The person (perhaps Ben) is not the slightest bit uncomfortable scratching where it itches --- even if we are uncomfortable for having caught a glimpse of the action while reaching for the  tomatoes?

[Don't get me wrong. I am not suggesting that we all expose ourselves in Safeway near the tomatoes. I am merely suggesting that those who accidentally do so, and who know no better, do not merit a reaction from us. We simply don't see them, and we move on, like Miss Manners would.]

Recently at church, someone had forgotten to blow some candles out at a spot near the altar. Ben happened to be in that vicinity at church on that particular day precisely because the adult in charge of the swing set had decided that Ben was too 'dangerous' on the swings -- so she had removed all the swings, and nobody can swing on the swing set any more. 

As a result Ben was looking for a diversion, so he went exploring. That is when he decided to blow out the candles that someone had forgotten to blow out.  In the process, Ben encountered one of the many persons who do not understand him very well. That person (like the person in the grocery store) was outraged at Ben's action (blowing out candles --- surely a felony on the FBI's top 10 most heinous list).  

I admit, Ben's judgment was not sterling in going behind the altar. (Incidentally, Ben's mom's judgment of not  being within 5 ft of him at all times was also called into question)... but I feel that the judgment of the person who could see nothing but sacrilege in Ben's blowing out the candles is perhaps also impaired a touch. 

Life is bigger than  a couple of candles, even if the candles are near or behind the altar of a sacramental church. 

Perhaps we are asked in the Gospel to "judge not lest we be judged", not so much because we too are guilty of much, but because [like everyone else] we understand so litte and rarely ever have the entire picture.  

It is mostly elderly persons who are consistently bothered by Ben's being around and 'doing stuff'. I myself know so little of what they suffer in body and mind, what their fears are, or how they struggle with loud noises, sudden movements, or the fear that someone might break something somewhere.

Lord Have Mercy. 

Tango with the Social Security Administration

I have held off on my blog about government services and special needs because it always seemed to me that it could be nothing but a long rant, or a pathetic whine.

Well, I suppose the time has come for this odious task, though I hope to make it at least marginally thoughtful or at least thought provoking.

If you have a child with special needs, and if that child is at any point in his life ill enough to go to the doctor, even the most secluded and isolationist homeschooler will eventually have a run in with government services.

Ben was born at a hospital in Kalamazoo, Michigan. And as soon as he was born I got a visit from social services. I say this appreciatively. Ben was, and is, chronically ill, and he qualified for Children's Special Health Care Services (also known as the Medicaid Waiver), a state service, which can function as either primary or secondary health insurance coverage. For us, we had parental coverage already, so  CSHCS functioned as secondary, which meant that we had no copays and no 20% payments for all those many procedures Ben had in his early years. Thank God!

Michigan, I might add, is an excellent state to live in for support for offspring with special needs, and in many ways I wish we were still there.

What was odd about Michigan was that we had to renew this medicaid waiver once a year. That is reasonable, you might say, since some children, like children with Leukemia and other diseases might outgrow their diagnoses and no longer need to be on the plan. Fair enough, but what it amounted to was that once a year, I had to traipse to a doctor who would document that yes, indeed, Ben still does have Down Syndrome, and then I had to set up a meeting with the person who ran CSHCS, a great lady, Marlene, and she would renew Ben's services very efficiently.

Not so, in 2003 when we moved to Colorado. In Michigan being on CSHCS is a birth right if you are born chronically ill. In Colorado, you were put on a waiting list, and as enough kids died off --yes, I know it is brutal to say so, but such is the case--your child would move up the waiting list for your county and finally get on the medicaid waiver. We spent 3 years in Colorado before Ben was far enough up on the list to be back on the Medicaid waiver (each Medicaid program is run by the state). And once he was, we started all the surgeries that could wait that we had held off on till that time. And it was a lot. He had had surgeries in the meantime, but only the absolutely necessary ones.

Renewal of the medicaid waiver in Colorado is also an annual thing, but unlike Michigan, it is complicated, a long review process requiring multiple bureaucrats to sign off on him, and inevitably every year at some point we are denied, have to appeal, and then finally the insurance is in place for another year. You may think this reasonable, since you do not  want to render government services to the underserving, so a process of checks and evaluations seem OK,  however,  for a parent with an obviously chronically ill  child, this annual hurdle is a pain, which perhaps could be lessened by being done every 3rd year for the most obviously deserving cases. --- I am convinced that we have layers of bureaucrats administrating Mecidaid whose jobs are only to make it more difficult to obtain services.... and the existence of which basically mean that fewer deserving families in Colorado get the services they need. -- So the question is: Are we so eager to make sure that no undeserving families obtain services that we are less concerned that perhaps deserving families (like Ben for 3 years) sometimes go without?

In fact, this post was inspired by my recent tango with the Social Security Administrations, and this is just one of  numerous cute anecdotes I could tell about my run ins with county, state, and federal social services on account of my youngest son having Down's.

Ben's Medicaid is renewed every June 1st, and every April and May I have another incompetent government agency story to tell. This year, I did the renewal interview in April. The normal process is that a lady from a private contracted company comes to my house, interviews me, looks Ben over to make sure he is still alive, and then stays for 2 hours asking all sorts of invasive questions, establishing whether he still has needs that require renewal. (If you add up her drive time, and the time she spends entering all the info, Colorado spends about 6 qualified man hours per year for a kid like Ben, so probably $120 or more per year for her part of the renewal process).

In addition, every 3 years, I go through the absurd inconvenience of proving that Ben does not get any SSI (Supplemental Security Income... basically social security for the disabled whose parents are below the poverty level). Well, you would think I could just produce my 1040 to show them I am not in poverty, or that different government agencies could talk to each other and send over the information, but NO... it is mY JOB to APPLY for SSI for Ben (knowing I will be denied) and then to bring that letter of denial to Medicaid, and without that denial, Ben cannot get his Medicaid Waiver renewed.

(Let me note here that there are so many forms of Medicaid that if you have heard anything bout Medicaid, you may already be confused, but know, just for now that Ben's medicaid is the Medicaid Waiver, which is health insurance for the chronically ill who are under 18, whose parents live above the poverty level).

So this year in May I get a letter from the state asking for the usual SSI denial letter, saying that Ben does not receive SSI. And I call the Social Security Administration, ask for the letter 3 weeks in advance of when I need it. The lady who answered the phone after a 50 minute wait (with a barking dog and a screaming toddler in the background) assures me the letter will be on its way well ahead of the May 28th deadline, so all is HAPPY.

Excepting, the letter did not arrive, and today was  May 27th. So Mamma Bear calls the Social Security Administration back. 1st call after waiting 1 hour: We can fax it to you, what is your fax number. I don't have a fax, but I will call my work, find out theirs and call you back... The person could not wait, so I had to go to the back of the line. Figured out the fax number, and then called back, sat in line for another 50 minutes. -- My new person cannot take a fax number to a fax that I am not sitting next to. I would have to go to the bottom of the line again (another 1 hour wait) AFTER I drive to a location with a fax machine and a phone from which I can call the Social Security Administration again, verify the first fax by faxing back my ID to show it is me there, and then I could get the fax I need to renew Ben's medicaid before June 1st. --- Not gonna happen that day because of Social Security Administration's hours, my needing to get Ben off the school bus, so I could potentially try again tomorrow to drive to where a fax is, call, wait, fax, wait, and finally get the letter and THEN drive to the county office with the letter a day late, and hope that Ben's Medicaid would still get renewed by June 1st.

I don't mean to make this a rant, and I don't want to continue the details of my driving to Boulder in quest of a letter that simply said that Ben does not receive SSI services... SITTING in line at a live place until it was my turn, etc, to procure my letter stating what everyone already knew... Ben gets no SSI... But let me say this...  EVERY YEAR, there is some major obstacle in the way of a perfectly reasonable and deserved renewal for a kid who will neither grow out of his Down Syndrome, nor shed his permanent physical illnesses and disabilities. WHY?

And please do not give me the answer that government is just messed up and only private companies can do this. Other countries can do this, and do it well and efficiently. Half of the process of renewing Ben's Medicaid is run by private companies. The process is messed up seriously for this reason--- In the United States we do not want to ever risk giving something to someone who does not deserve (or earn) it, and so we unnecessarily complicate the process to make absolutely sure that the undeserving is not rewarded. In the process we punish those who need the services... but they are usually so busy taking care of their special needs wards that they do not have the energy to protest and try to improve the system. When they finally get what they need, they breathe a sigh of relief. If they are lucky, they have a 6 month reprieve before the whole renewal system starts over again... that is, a reprieve in which they get monthly insurance claims denied,  hospital mis-billings, doctor's offices sending bills to collection, to say nothing of obnoxious  law clerks from collection firms who intimidate and threaten their credit ratings if they do not just cough up the money themselves immediately,

I used to pile all Ben's bills up till the end of the month and just pick a Tuesday morning when we were not interred in a hospital, and just sit and systematically go through bills from doctor's offices, hospitals, anesthesiologists, surgeons, labs, etc, all these individual billings that were all done wrong and either denied by our job-related insurance or denied by Medicaid for lack of documentation or authorization, etc.

There is nothing more intimidating than a cocky law clerk who has been trained by a collections agency to be as abrasive and threatening and unkind as anyone possibly can be. Collections agencies mercilessly bombard your cell phone, your home phone, and when you finally answer, they make you hold for one of their agents, who immediately is as unfriendly and menacing as he can possibly be, in hopes of intimidating you into paying what is not your responsibility to pay, but you're afraid not to.

Ben's has been sent to collection several times (in spite of the fact that the secondary medicaid insurance should make it impossible)  and it takes a back bone to stand up to the extortion that occurs when collections calls you up with a year old claim from a laboratory that misbilled the claim to start with.

All that to say, WHEN you have a very ill child in the hospital for months on end, Medicaid is supposed to ease that burden by picking up copays and co-insurance, but often all that happens is that it stalls payment till the claims are too old (it will not pay a claim over 12 months from the service date)... and then you are stuck not only caring for your ill child, but on your days home, negotiating medical bills that threaten to ruin your credit.

Do I think the system does not work?? Yes, indeed. Almost all chronically ill or elderly in the United States are covered by Medicaid or Medicare eventually... since health insurance is absurdly tied to your job, once you are long-term sick, when you need it most, you usually lose your coverage. It is, at its root, an absurd system .

At last check, I believe that 45% or more of all medical claims in the United States end up being paid by the United States government. -- The other half is paid by private insurance, which also, in my humble experience is designed not to pay if it can help it, and so the lot of the parent or other caregiver of the individual who is chronically ill is largely to navigate a sea of paperwork to get the two parties who ostensibly should be paying the bills of the ill person to actually do that which they contractually are obligated to do.

Yes, if you are independently wealthy, of course this is not a problem. But most of us are not. And when we have the misfortune of having a chronically ill family member.... a long term situation that will not go away until the person passes away, for many, many people in the United States, the system does not work, or rather it works poorly, it is stressful, and at times it totally fails us at the absolute worst moment --- when we need it the most.

OK, I don't know if this was a rant or a whine, but honestly, this is something I have dealt with for years. Getting Medicaid renewed is an absolute pain in the posterior... getting either insurance to pay is like pulling teeth. Folks, it need not be so. Why can't the United States ever look at what other civilized countries do and perhaps learn a thing or two and give a break to the disabled that inhabit her shores? I understand not wanting to support those who should and can support themselves, but for crying out loud, the elderly, the severely disabled, the dying.... surely we can recognize that they are not free-loafers.

Child Care/Dependent Care

I sometimes get asked what the most difficult thing about having a son with Down Syndrome is.

People imagine that perhaps living with a person who is mentally retarded is difficult---that you (the care giver)  lack in patience with the person with special needs  (AND YOU DO sometimes!!), or that the health issues and medical appointments grind on one's nerves (and they might, at times overwhelm you). Others wonder if I look at other boys aged 17, compare Ben to them and shed a tear at what he could have been, but isn't.

And those things can be hard, though, I have to say after 17 years one is so used to all of that, I never compare Ben to any of his age-appropriate peers who happen to have normal genomes. I got over that years ago.

I would say though, that while having a kid with Down's can be very stressful, most of it (as you have already have the impression from reading other posts in this blog) has to do with finding a way to help my son fit into society in such a way that both he and his parents can function as normally and as stress free as possible.

And of all the stress that come from having to function in society, the biggest stress BY FAR is dependent care.

Pretty much, I would say, dependent care is so tough to find and pay for that those of us who care round the clock for adults who cannot be left alone at home at all, get out very little to start with, unless we can take our dependents with us.-- We try for dependent care when we must, and if it is not absolutely necessary, we usually just stay home.

In my case, I am pretty lucky in many respects. Ben is easy to take along to church, movies, shopping, etc. He is potty trained, he can wait his turn, for the most part he can be quiet when asked to (not always, but most times) and he can entertain himself if I bring paper and colors, or an iPad, or something for him to read or play with.

I don't expect to get out much, apart from going to work on my own. I am used to that quiet home life. AND I am very grateful to live with Ben.

The problem is that  I have to work to be able to care for Ben, and to do that, I need dependent care, and that is the most difficult part of living with and caring for Ben.

Why is dependent care difficult, or rather what is difficult about it?

What is difficult is that persons that are no longer little children need to be cared for as if they were still children. And most people are not comfortable with that.

What is difficult about this care is first of all obtaining it. Even when I am willing to pay for it it is hard to obtain.

For the next 3 years, school takes care of Ben 7:30-3 until he is 21. And then what happens to Ben while I go to work??? (Actually, I am not too sure just now, but that is another blog for another day when I have learned more about that).

So let me just discuss 'odd hour' and 'off hours' dependent care in this blog.

Right now, the odd-houred work event is the most difficult event of all--that random Saturday event that one MUST be at work for--- just because work WILl occasionally have those odd hours. And when you work at a small private college, spring graduation time is littered with such events.

The random person on the street would think this would be easy, after all, most humans have  had young children once, and they would either get grandma or they would get a sitter and just pay the going rate--- and off they go to work, what's the big deal?

Well, in our family's case, we have no relatives within thousands of miles, so forget grandma. She was never near enough (neither grandma was).

That leaves 'just getting a sitter'.

Well, most teen girls (and boys)  who are available for babysitting feel awkward around kids with Down's or other disabilities, so many of them flat out do not want to watch my disabled child even if he is easy, would mind himself and really just needs a person with a bit more judgment  than he has, in the house.

In addition, in the rare event where I have found a teen girl who might have been interested,  her parents have found it 'inappropriate' for a girl of age 14-18 to be alone at our home with Ben. (I cannot see the issue, but the scrupulous can, apparently).

That leaves adults that might be able to care for Ben. Many people when asked find that they just don't think that they are the best fit for doing this---and truthfully, I personally don't think *I* am a good fit for being Ben's mom, but that is the reality of what I have to deal with.  So, me along with everyone else pretty much disqualifies the entire population of the United States from undertaking this task.

I understand the awkwardness and had I not had Ben as my son, I would be no different. In fact, I would probably have been worse... but it's back to 'where do any of these kids belong?'. If everyone is uncomfortable dealing with my young adult son, then here he is again, excluded because he doesn't fit people's category of the sort of person they are comfortable being around. (And yet, I would say that 40% of us [myself included], perhaps more than 40%, think that it is wrong to abort babies with Down's. If we believe it is wrong, we also have to stick our money where our mouths are and help make society a place where these persons are welcome to live and be. And knowing that these individuals are going to need a lot of care and support [which is why another 40% think it's easier to abort them] we need to be willing to bring about that support or care in some fashion, or these persons with Down's really are not truly welcome or wanted in our society.)

All that song and dance above to illustrate that finding the occasional care giver is hard, but that is not to say that I don't ultimately find people and somehow work out every stressed oh-my-gosh-what-am-I-going-to-do-with-Ben-that-day situation in the long run. All I am pointing out is that had Ben been 3 or 8 and a normal child, it would have been a lot easier to procure care for him at those odd times when I must be elsewhere.

And now for a cute story. My 20 year old daughter, last year, was trying to make an appointment with a professor at CU Boulder to go over some class material. He offered a certain time and she said that she couldn't because she had to be home to get her younger brother off the school bus, something she did for me in the fall of 2013 on Wednesdays. "How old is your brother?" asked the puzzled professor. "17", answered Kirsten with a smirk, and waited a while to see the stupor on his face. With time, she explained that her brother has Down's, and the professor's face lit up in understanding

But back to care issues ... Online at places like care.com (which I have had to resort to), the going price for special needs is $15-$20 per hour, but even there, it is hard to get last minute one time sitters (to say nothing of the dread of leaving your child or young adult disabled person with someone you never set eyes on before... but I have done that in the past.)

For parents or guardians of persons with special needs, I think the prospect of never getting beyond the caretaking obligations can seem daunting at times. Burn out can be very real. After all, if you have little children to care for, they grow up and won't always need the care. Same thing for elderly. They will need your care for a season and then they may choose a higher skilled facility, or (hard as it sounds) they will not outlive you (most likely) so at some point, one way or the other that obligation will be over.

Not so when you have an adult with special needs to take care of. If a friend asks you to go to a concert, or if a group of friends are getting together to do such and such and wouldn't you like to come?? --- You likely can only come if your special needs young adult can come with you. Your friends get to know that and most of them don't ask you to these sorts of things any more because eventually they know there is no way you can ever go.

But forget my last paragraph. The idea of going somewhere for fun or recreation is dream land --- the thought that you could have a life beyond being home with the special needs young adult and work is not realistic. My hobbies are books, plants, writing, knitting --- all things developed especially so I can do them at home, and do them with Ben or with Ben near.

What I aspire to in life is  not a social life. My aspirations are limited to hoping that some day when special work occasions crop up--ones where I have to be there --that there is an ARMY of people out there saying "you can always call me, if you're in a pinch with junior, I'd be happy to take him for an afternoon or an evening or a morning."