The Joys of working with Home HealthCare Companies

Medical Supply Companies ... yeah!!!

Benjamin has been on home oxygen since 1999, and this year, he finally got off supplemental oxygen at night, so that he is 100% breathing room air all the time. VICTORY!!

We have had a couple of medical supply companies over the years. I love the local small private ones, like White in Michigan, a caring company that sent out a nurse regularly. ALso, you always had a number to call if you needed something, and when you did call, you got the same people, people who knew you and knew what you needed. There was a monthly delivery of formula, oxygen, g-tubes, stoma supplies. I really enjoyed our first company and all the people. When we moved from Michigan to Colorado, they all signed a card for us and we said many fond good byes.

But with companies merging from the 90s and up, medical supply companies, the little ones, are more rare, and the giants like Apria Health Care have taken over.

Apria is what we have had to service Benjamin's home medical supply needs all our years in Colorado. In the beginning, one could call the local branch in Golden or Louisville, their hours ran a little into the evening after work, and over-all while it was not personable like White back in Michigan, it was doable, the people were reachable and we got what we needed and were able to communicate in a timely manner.

Not so any more. Apria has gotten to the point of “too big to care”. 

Their phone hours are (9-5) Central time. One time before I knew this, I called after 5 central time, and their automated phone said they would be with me "momentarily". After 90 minutes or so, I went on their webpage and found out they closed 5 central, but their phones were not switched over to let me know this while I was on hold.

Apria's "convenient" delivery and pick up hours are M-F, 9-5 Mountain time. 

Their “window”  when you schedule a delivery with them is 9-5, so you just need to be home all day in order to connect with them on a scheduled delivery or pick up day. You cannot call and talk to the driver and find out if he is near. In fact, your call goes to a call center somewhere between Ohio and Pakistan (I think – or some other Asian country that features a Pakistani/Indian style accent). And if you reach one of their over-seas call centers, in addition to having to listen carefully to an accent that is not always easy to understand, has employees working in a big area where there is no sound insulation, so you hear 10 other voices at the same time as the one you want to hear, which makes it doubly hard to hear the agent you are trying to communicate with.

Generally speaking I try to be really nice to service people at all times, especially hard working poorly paid foreigners...  though they are hard to understand. But when one sits on hold for 45 minutes to an hour every time one tries to call Apria, and when one often gets to the last stage, finally hears a phone ring, and then the call drops before one reaches a live person, it is difficult not to be frustrated and on edge, when, on the second or third try one finally gets through to a live person.

During one of my recent calls to Apria, after getting enough information from the person in the call center to know how I – with my own car—can pick up and deliver the requisite equipment (because I am never home during their truck pick up and delivery hours), I asked how I could file a complaint about their service … i.e. register a complaint with responsible people, not with the call center person … and the call center person said he had no information on how to register a complaint. I could not talk to his supervisor because he has no number to transfer me there, however, he helpfully suggested that I was welcome to call the 800 number again, sit in line, and try to pick options (he did not know which) that might get me to somewhere where someone perhaps would be willing to listen to a complaint.

The words here are “too big to care”. Apria is all over the United States. Their concern is purely with their share holders. The friendly customer services they previously had when we started using them in 2003 have dwindled away in the name of saving personnel and service costs so the company can focus on delivering more to their share holders. 

Any contact you need to make with Apria requires more than an hour of your time (in case the call drops once or twice). Being on hold entails listening, not to hold music, but to their two minute advertisement audio segment of what services they provide, a track that after an hour’s wait has run about 30 times until rings in your head over and over and over again - even after you hang up. As a result, while you are on hold you cannot just put the phone on speaker and get some work done. Their sound track destroys your ability to think while you are waiting.

I do not know what the other companies are like (but I have heard like horror stories from others with other big companies). Currently we are discontinuing services with Health Care Companies  for Ben (thank God!!)

Think about other caregivers of the very ill (which is most of the customer base of home health care companies) – persons who are already super busy both working and taking care of their sick loved ones. Why should caregivers of the most ill  have to put up with such terrible service? Why should anyone, indeed? When the free market works, you can go elsewhere and get better service, ideally. Not so here. 

The profit motive for companies who are way too big in their market share to care what their customers think of them has destroyed what was previously a humane and customer satisfaction driven service. 

I think of the man who was forcefully dragged off United Airlines last year when they decided he could not keep a seat he had reserved.  I think of how that brutal action against a respectable citizen who was sticking to his rights did not hurt United Airlines bottom line one bit!!)

While I have not physically been dragged anywhere by Apria HealtCare, I have been treated with about the same amount of complete LACK  of care and concern for my son's needs, no respect for my time, or for my convenience regarding their services.  Companies like Apria, insulate the top executives and middle level management from ever having to deal with customers’ concerns. They then put poorly trained and peanut-level paid call center representatives out front to talk to the customers. The call reps are miserable, the customers are miserable, and the folks at the top are content that their business model delivers to their share holders – the only folks the company actually cares about.

Can anything be done about this? Or are we just that unimportant in the greater scheme of things?

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

USE YOUR WORDS!!!

Both parents and special needs educators insist that kids and young adults with special needs "use their words" when they need something. So have I. I have worked so hard to get Ben not to whine and groan when he meets with frustration. I want him to say, "I need help!" or something to that effect.

I was in the kitchen, and Ben, at my request, had gone in the laundry room to feed the cats. It was early morning and we were getting ready for work and day program, respectively. I was busy packing lunches for both of us when I heard a groan from the laundry room, followed by "Oh, no, I can't!!", shortly after followed by, "I give up!"

With my learned pedagogical wisdom I interject, loud enough that Ben can hear me, "Ben, if you need my help, please ask me. Use your words."  Well, he was having none of that. I heard continued groans from his quarters, so I decided that he would have to fend for himself until such time as he would request my help using my specified verbal formula.

THEN I heard the crash... just as I zipped up Ben's lunch bag. KA-THUNK! I hurled Ben's Minion lunch bag  in an unspecified direction (and later recovered it between the couch and the wall) and rushed back to the laundry room. Behold my son -- sitting on the floor with the folding door to the laundry-room closet on top of his head. Thankfully he seemed relatively intact and unhurt.

As it happened, a broomstick had gotten stuck between the folding door and the door frame, which resulted in Ben being unable to access the catfood.

When his frustrated exclamations did not produce the coveted help from me, Ben  resolved that additional force was required, force sufficient to open the door. And, one must confess, he was right. An additional pull not only opened the door, it actually removed the door from the door frame.

Yup, I need a new door for that closet. And nope, the cats were not fed.

When Your Loved on Suffers from Anxiety Disorder

There's a place for us,
Somewhere a place for us.
Peace and quiet and open air
Wait for us
Somewhere. 

There's a time for us,
Some day a time for us,
Time together with time to spare,
Time to learn, time to care,
Some day! 

- West Side Story

https://www.youtube.com/watch?v=9YStlwOxfXI

I hear groans from the other room: "Oh, no." "I can't do it!" " Dang it!" "It won't work". It is my son. He is wrestling with something. He has wrestled so long now, that we might be late if I do not go check it out.

And yet, I don't want to be the trained puppy who comes running to rescue and take over whenever Ben cannot do something. Or, at least, if he needs help, he needs to seek me out and ask for it, or at least 'gently' holler from his room to inquire if I can be of some assistance.

But he doesn't. So forget all the wonderful principled advice from the psychologist (after all, she does not live with my son minute to minute), I trot into his room. He is sprawled in his bucket chair, wrestling with the zipper to his pants, which is stuck down.  

"Ben," I say in a kindly voice, "do you need help".  He groans. At this point, I witness the interior battle. He doesn't want help, but he needs help, and he hates asking for it. It is all so humiliating. I understand that. In fact, I am not trying to humiliate him when I insist that he ask for help. It is more that I don't want to turn into the co-dependent accommodator who comes running to fill his every wish whenever he sounds like he is in a touch of emotional discomfort over a task he cannot complete by himself. 

The balance -- the balance -- the balance. I cannot over-react to accommodate when he is upset, but no more can I stand there with my arms crossed, haughtily demanding, "And WHAT do you say?" in order to get him to solicit my patronage. 

"Do you need help?" I repeat. " I know how tough zippers can be. Let's take these dumb pants and throw them out and get you a pair that work the way they are supposed to."

Problem solved, and we happily trot out to our oatmeal and pineapple spread.

Mornings are key. A morning off kilter often leads to a day off kilter. And I know that many of you will echo that this is so for you too. It certainly can be for me, however, it is a matter of degree. Persons who suffer from anxiety disorders trigger easily and recover with great difficulty over seemingly small matters.

Our mornings go like this (on an ideal day in the summer when I am off from teaching).  I get up, put on my work out clothes. I put on the classical  NPR station in the livingroom, and I wake Ben to Mozart, Back, Strauss, or Rimsky-Korsikov, and while he takes 45 mins to get dressed, I take my morning walk. I return, light the candles on the table and start cooking steel cut oats, which we eat with a bowl of fruit on the patio under a beautiful green maple tree with the morning song of birds nearby. It is a lovely treat, except, not every morning goes according to plan.

From Signal to Reaction

Our environment signals to us (people, weather, objects, circumstances) and we have to take those signals in -- that requires sensory processing, i.e. we process the information that hits our senses. What is it? DOES it hurt? Do I need to move away? Does it feel good? Do I need to come closer? In Ben's case, he has a delayed neurology that results in him not just getting burned by something hot (we all do) but taking so long to let go that he usually ends up with more severe burns than most of us would get.

Once that information has registered on our senses, we need to cognitively process the sensory information that we received. Our brains need to evaluate the information and what it means. (Executive functioning). This requires judgment. This requires some level of awareness and a sense of the bigger picture.

Finally, after evaluating what some sensory input means, we need to decide how to respond or whether it is necessary to respond. And once we have decided to respond, we need to monitor, evaluate, and modify appropriately the intensity of whatever emotional response we decided to put forth. (Emotional regulation)

And all three steps happen in a matter of a split second (Sensory processing, executive functioning, and emotional regulation). When you think about it, so much can go wrong in what we decide in that split second, as we all know when we have been in an unexpected threatening situation. Thankfully, most of us are well tuned in to life's daily input and make reasonably sound and functional choices when we are in a routine.

For Ben, routines also help tremendously. When he feels in charge and in control and feels like he knows what he needs to do next, his anxiety is lower, and things usually go well. It is just that so much of his life is not under his control, so much of what happens lies out side his immediate scope of judgment and ability to see fully, that he is more prone to have something in one of the three steps (sensory processing, executive functioning, or emotional regulation) go wrong  on any given day. 

It is Simple -- Just Behave

He should just behave, some say. It is not that hard. But I would maintain that unless you have walked a mile in his shoes, you have no idea how hard it is, how many times he is misunderstood or misunderstands a situation, nor how many times his most well-meaning attempts to do the right thing ends up getting him "burned", metaphorically speaking.

Trigger

For those who have sensory processing disorders, or who are slow or who lack judgment on executive functioning, or who perhaps lack proper emotional regulation, a simple event, like sitting next to a person who waves his hands on the bus, can turn into a major emotional event.

It happened  a million times in the past, but one example, when he was new to a program he got on a bus where a person Ben did not know, a person with poor motor control, was waving his arms. Ben who was sitting in the seat right in front of the person, felt threatened and slugged the person in self-defense. (Much like Don Quixote and the wind mills).  -- Now, of course Ben should not slug people, and of course he should have "used his words" to tell the person that the person was getting in his (Ben's) space, after which, Ben should have alerted the staff person on the bus that he was getting nervous because of the arm waving,  and then politely requested to be moved to a seat a distance away from this person with the waving arms.

But think about how many steps of processing and judgment it takes to go from "Oh there is something bumping the back of my head. It just hit me again. I don't like this" to  "Ms. Kim, would you please come over here, observe this, grant my request to move to another seat, and then help me get up with my back pack and my ten other pack-ratty things I bring to my program every day, so I can occupy another seat??"  Seems much faster to just turn around  and slug the perpetrator.

This sort of incident can easily be regulated long term by where Ben sits. It also is resolved once Ben knows the program participant who waves his arms and knows that is just how this person is. Then Ben can choose to sit near or far from the person depending on his own comfort level, but that initial encounter is not one that anyone necessarily can foresee or prevent. It just happens. And there may be many such incidents weekly when you have a loved one with an anxiety disorder.

Walking on Egg Shells

I shared in a previous blog how Easter morning turned into a melt down disaster because Ben did not get to ring the bells. We went home after the service, calmed Ben down (sometimes that is a matter of a few minutes, and sometimes he sits and stares at the wall muttering to himself for HOURS, depends on his level of obsession and on how well I am able to redirect him, or how well he manages to redirect himself).

And that is the tough part of living with a loved one who has an anxiety disorder or some other mental health issue. Their ability to process, understand, and communicate with reality accurately varies, and when that ability fails them at one of the three stages, conflict often ensues. 

Persons living with the person with the mental health issue are often (usually) operating at some level of stress because the loved one cannot be counted on to be in a logical, rational state of mind. And even though it is not ALL THE TIME that the illogical irrational state of mind is present (thank God!), you do not know WHEN the other shoe is going to drop. THAT is where the egg-shell existence can at times be a more or less permanent state of affairs.

Developmental Disability and Anxiety

I have had people ask whether it is harder to have a dependent with Down syndrome who also has an anxiety disorder -- in contrast to having a loved one with a typical IQ who suffers from an anxiety disorder. 

My answer is -- depends. 

I remember many years back helping a friend who was going through a hard time. I did not know this friend super well, but I thought cheering her up with some entertainment, taking her out would be the ticket.  Little did I know what hid behind her exterior in terms of anxiety. My invitation was accepted somewhat reluctantly with a series of what ifs, ranging from mosquitoes to sunscreen, to water to discomfort sitting on the ground, and then finally, the morning before the afternoon when I was going to come and get her for the 2 hour event, she called me and she was crying. She had not slept all night, worrying about this little trip/walk/outing we were going to take in the outdoors, and she felt so sick and so headachy worrying about it, there wqs no way she could go. -- I was completely taken aback. I had thought I was cheering someone, and instead I had made her suffer for a whole week worrying about how she was going to say no to me. This is a woman of high IQ, very accomplished in her own field, but completely unable to function outside her own bubble. It took me a while to get to compassion because I was so dumbfounded, so ignorant that it was possible to suffer like that. Back then, I thought she just needed a grip. Nowadays, I know, there are people who suffer like that, who are deeply anxious about anything familiar, and it is not just a matter of exposure for those people to reintegrate into 'typical' life with all its hustle and bustle.

I think in many regards I prefer dealing with my own Benjamin rather than with adults with typical IQs. Benjamin does (at times) sport the stereotypical friendly Down syndrome disposition and he CAN be easy when well grooved in his routine. In addition, I full guardian powers and I can to some extend 'displine' by  granting and withholding coveted events and possessions. I do not have any issues with substance abuses, since Benjamin lives in a tightly regulated home without access to stimulants. He goes to programs that are wholesome and spiritually based, and over all, his situation is well enough controlled that I can ensure good sleep hygiene, daily exercise, a little academic stimulation, and an excellent diet at all times.

If you have a loved one of typical IQ who finds him or herself to fall in the possibly 20% (NPR says) of the  population that struggles with some kind of mental health issue (depression being the disease of the 90s and anxiety being the disease of the new millenium) you may feel more free because you don't have to drive them or baby sit them every minute, but on the other hand with those freedoms that your loved one with mental health issues has also comes access to all sorts of behavior, ingestibles, and activities with less than ideal companions that can in extreme cases lead some persons with mental health issues down long winding self-destructuve paths that you can only witness, lament, and take the brunt of when they return and in whatever manner they choose allow all the ill that has come from their choices to spill all over you. And then you sit, off and on, during the bad times with this loved one with a tremendous burden of how to set boundaries, what to put up with, and generally in the usual conundrum of how to be loving to this person for whom life is always a tremendous struggle -- so much of it seemingly of the person's own doing.

I don't think there is a good answer here, and we never are given a choice between the two anyways, unless we are the kind of saintly persons who open up our homes as host homes to persons with mental or cognitive disabilities.

Summa Summarum

I wrote this to bring, perhaps, a teensy bit of clarity around having a person with special needs who also has a co-morbidity of a mental health component. It is a very common combination for persons with Down's. 50% develop a mental health component as adults -- because, it is just so hard to fit into a society that is based on competition and the free market, where the fast, the smart, the industrious succeed, the rest of us take second or third row, and the weak, the old, the sick, and those who just never were able to find a groove where society welcomes them, are just left behind to flounder. Some of that floundering is done dysfunctionally, in a repetitive, somewhat self-destructive mental illness groove where those people, to the best of their abilities, try to feel just OK about themselves some of the time. 

God on high

Hear my prayer

In my need

You have always been there

He is young

He's afraid

Let him rest

Heaven blessed.

Bring him home

Bring him home

Bring him home.

Bring him peace

Bring him joy

- Les Miserables

https://www.youtube.com/watch?v=fXnRf3TQcpk&list=RDyKne5ak9V9s&index=5