(I'm a Host Home Provider to three men with developmental disabilities - referred to herein as Mr. E., Mr. D., and Mr. L.. "Red Thang' refers to my beloved '02 Firebird convertible, our trusted steed, and 'Rancho Perrito' the name of our somewhat-unconventional home)

A Day In The Life of…..

The Snaggletooth Gang

(Mr. D. is challenged with both autism and a form of schizophrenia. While the idea that all persons with autism possess special 'abilities' (savant) is a myth, Mr. D. does in fact have a near photographic memory, and amazing ability to compute days and dates instantly, without pen or paper. It's a wonderful thing to experience life with someone so gifted, and a privilege to help someone with such challenges)

"Brush yer tooth Mr. L., ya gotta dentist's appointment!"

Actually, he still has seven teeth. But who's counting?

This was a two birds/one stone day. Both Mr. L. and Mr.D. had appointments at the same clinic, at the same time. Nice for me when I can work things out this way, but Mr.D. was extremely anxious about the whole idea. Not only the fear of pain, and negative associations with having one's teeth worked  on, but even worse, having another human being standing so close, even putting hands in one's mouth - for a severely autistic person, these are horrors. He's going to be having total extractions, then be fitted  for dentures. Years of neglect while on his own have taken a serious toll.

So we don't forecast much, just the bare minimum information needed  to convey that things are scheduled and soon upcoming.

Yesterday I asked him "So would you like me to explain things about what's going to be done for you, or would you rather wait and hear it from the Dentist?"

"Rather wait"

"Okay."

After the tooth brushing, We mull around waiting for the agency to send me a faxed  form. Mr. L.. whups out his harmonica and begins to blow. The poor thing needs euthanizing (the harmonica - not Mr. L..) A solid year of daily abuse has bent the reeds to their physical limits. Mr. L. doesn't care.

Finally we gave up on the agency, and now running behind, we piled into Red Thang.

Mr.D.'s leg is jumping - a sure sign of high anxiety.
 On goes the XM radio... The 60's station is jammin' "Stop! In The Name Of Love!"

I look sideways at Mr.D. and start singin' in a mock falsetto.

"I used  to be a Supreme, Mr.D."

He looks at me askance... then, 'the smile'.

Mr. L. begins to 'sing' from the backseat...

"So was he...."

The smile lingers a little longer.

Mr. L. Whups out the harmonica again.

"Gimme that thing!!"

"Nope"

"I'm tossing it out the window!"

 "Nuh Uh"

Feigned  authority met with faux defiance - a favorite game.

Mr.D. Is grinning now. He didn't get the game at first, but now it's as common as air, and he loves it. Mr.D. is a bit too fragile to play along directly, but he loves it when we give each other 'the business'...

A hand reaches up from the backseat and tips my hat forward, before being snatched  back.

"Did you do that Mr.D.?" (who is sitting in the front and obviously would never think of such a bold move)

Mr. L. cracks up.

The humor may not rise to the level of Thurber or Keillor, but it does have its charms.

By the time we get to the dreaded  dentist, everyone is loose and upbeat. This is the desired  affect.

I settle them in, and then run for a sandwich. I come back into the office and another Host Home Provider is there with a 'consumer' ( I **HATE** that euphemism - the 'official' term for a developmentally disabled person receiving services in the system...) She's an elderly woman, apparently in the low/moderate range of functioning. She starts to speak in a somewhat loud tone of voice.

"SHHH!!" goes the provider.

Each utterance is instantly met with an insistent "SHHH!!"

I want to turn around and let this idiot (the provider) have it. I am the only other person in the waiting room, and it's clear that this control freak is only trying to manage her own stress.

I resist the urge, and keep my trap shut. I cannot manage the world.

Mr.D. comes out with gauze stuffed in the front of his mouth and a dazed  expression.

Mr. L. comes out with a new toothbrush and a big toothy grin.

We head for home, where milkshakes await Mr.D. and the rest of the gang.

A quick turn around and then off to yet another appointment with Mr. E. .

ooblah dee, ooblah dah....

 ---------------------------------------------

This one's a bit long...

 Mr. L., has been in my life for many, many years - 31 at this sitting. What we know of his history is a bit obscured by poor record keeping at the institution, where he was born, to the best of our knowledge.

 Mr. L. was likely the unfortunate product of incest, between a brother and his developmentally disabled sister. For many years these people were thought to be his own brother and sister, but several years ago some previously unknown information came to the fore, and these unsavory facts were gleaned.

 Mr. L. grew up in dormitories and 'units', competing for the attention of staff with 450 others. His Down's Syndrome didn't impede his inventiveness, nor did it dull his appetite for notice and singularity. Mr. L. learned to adapt to the most maladaptive of circumstances, doing everything in groups, dealing with assaults, infringements and all manner of affronts to human dignity - as was the milieu in such institutions and the lot of millions of people wrongly incarcerated  in them, through the 1970's.

 In 1977, I left Northern California, where I'd survived  as a a street waif, living in my own milieu of substance abuse and maladptivity for several years.
 I'd reached  a point in my development where I realized  that if I didn't try to find a way to make some meaningful contribution, I likely wasn't going to see my 30th Birthday. I was 23. I came back to Colorado, where my mom was a very well known and respected member of the 'recovering community', hoping that maybe she'd help me apply my vast reservoir of experience, strength and hope in finding work with adolescent substance abusers. Unfortunately for me, I was still pretty much one of the above myself, and had no qualifications other than extensive field study.

 But I was determined to get my foot into the door of Human Services, and so took a job offered me as an entry level counselor in a large group home for 15 developmentally disabled  adults.

 On my interview for the job, I was pretty hesitant. My mental image was of wearing a white coat, carrying drooling vegetables to the bathroom - some kind of 'attendant'. This was not the kind of 'service' I aspired  to...
 But my first shift was amazing. This place was a family - 15 people who'd been together in institutions, nursing homes, and now, finally this large and warm place called Beeler Street. They were differing functional levels - but each individual was bright and alive - even the people with more severe challenges. They seemed  to laugh with their whole beings, love without reservation, and showed  humanity in all it's best lights, without contrivances, presumptions or defensiveness...

By the end of that shift, I was in love with my work.

I took every class and got every certification I could show up for - even though I was still struggling to stay clean/sober (on my own).
 Within a year I'd already taken three jobs in the field - one as a live-in counselor in a three bed  apartment program for high-functioning men, days at a large vocational center, and evenings at Beeler Street.
 I applied  for a job managing a fourplex program, three adjoining group-home apartments with four clients each, and a fourth apartment which I moved  into with my new fiancé (future wife of 20 years)

 By this time, the Supreme Court had mandated  that the developmentally disabled  were a discriminated class - having been unlawfully incarcerated  without due process simply on the arbitrary basis of their IQ.
None other than Huraldo Rivera carried  a lipstick camera into a notorious institution in Pennsylvania, and revealed the horror to the entire nation on 20/20, as the ARC brought a landmark suit that mandated all DD persons should have the right to live in the community, with full rights and responsibilities, with training and support.

 I had stumbled right into the flood of people being 'deinstitutionalized', and got to be part of the vanguard of that time and movement.
So there, in the fourplex on Harrison Street, my path crossed  with Mr. L.
 As we were moving into our apartment, my mom came for a visit. As she came down the stairs leading to our place, a little figure covered with a bed sheet jumped out with a six-shooter finger sticking out, and demanded, "PAY!".
 She flipped  him a quarter, and he gave her a hug from under his disguise.
 This was pretty much the same imp that has graced my life for the past 31 years now.

 Mr. L. had a friend, Freddy, who would come to visit every evening at just around dinner time. The guys in Mr. L.'s apartment were learning, with the help of staff, to cook their own simple meals, and somehow, Freddy was always there to test the quality of their work.

 He was as meek and sweet natured a guy as you'd ever meet. By the time dinner was over, it was usually approaching dark and he lived in a guest home in a pretty rough neighborhood. So after I'd finished with charting and routines, I'd load him into my Buick, and haul him home.

He was not especially well cared for there, and always looked a bit ragged around the edges. A year went by, and the program evolved. My Supervisor and I managed  to put up a bond, and we took over administration from the State, setting up our own NPO. I became the director of a system of group homes, apartment programs and Intermediate Care (medically modeled) Facilities.

 My (by then) wife and I moved  a few blocks away from Harrison House, into a little house in East Denver where life played out for the next couple decades.
 Not long after our move into that home, we discovered that Freddy had a terminal illness, and plans were being made to move him to a nursing home. He was 52, and had lived his entire life in the institution, and now would go off to die in some hellhole. It was terribly unfair, and we loved this little guy too much to see it happen. So we pulled  a few strings and became among the first Adult Foster Care families in the nation.

 Every weekend, Mr. L. would come to spend his time with Fred . They'd hike down to McDonald's for a happy meal, or take in a movie, or just hang out over TV and popcorn. They were buddies, and Mr. L. was always a model citizen.

 But in the Group homes, Mr. L. continued  to apply the lessons of the institution, competing for attention in the most extreme ways - sometimes threatening his staff and housemates if the script called for it...
Mr. L. would wander off - often being found by the police in remote parts of the city - once directing traffic in a busy intersection, once even trying to hold up a mom & pop store with a butter knife. Mr. L. seemed to be resistant to teaching or behavioral 'programming', and he was earning the label of troublemaker and 'behavior problem'.

 Meanwhile, over a four year span, Fred slowly succumbed to his illness, finally passing away after blessing us with an experience of love which will live with me forever. At his Funeral, Mr. L. fell completely apart - sobbing at the loss of his friend with tears that seemed to come from his very cells.
 While others had been moving out from the institution, there were plans being discussed to have Mr. L. go back, ostensibly for his own safety.
 But our experience was so different - he had become part of our family and in our home he didn't have to compete for love or attention - and we asked  for him to be given Fred 's room and place at our table - which was granted. This was 1984.

 I was by now living a split personality - Administrator by day, rock-n-roll stoner on nights and weekends. While I told people that I was "sober", I smoked  my weekly weight in weed. Though Mr. L. loved the bands, we concealed  the dope from him and my daughter - never smoking in the house - taking breaks, protecting not so much them as my vaunted reputation as the golden boy.
 But Reagan's cuts in Human Services funding took hold, and our wonderful program fell on hard times. My agency was handed over to a church-run charity, and though they retained  me for a while, I was too proud and independent to accept subordination.

 So I ended  up taking work with a sheltered  workshop, driving their delivery truck and hoping for an opening in their administration - for four, long years.
As my addiction progressed, still, and with great support from my wife, we managed  to keep our foster home going - Mr. L. seeing three other housemates come and go over the years.

 Our hair began to thin, our waistlines slowly expanded, and time slipped  by.
 In 1989, the bottom was dropping out of my life. I'd taken a couple of very difficult jobs - one directing a high impact agency that tried  (unsuccessfully) to integrate some of the most severely behaviorally challenged  people in the system into community based  homes. A nightmare of crisis management, surpassed only by the next job, coordinating a nursing pool for home hospice and quad care for indigent people, and persons with AIDS.

These jobs were exhausting, demanding 24 hour call and 100+ hour work weeks that left me staggered . I couldn't stop using, and the strain of trying to hold together these radically differing parts of my life was causing me to fracture.
 Worst of all was when I finally won a lawsuit against the nursing agency, and thus had the complete freedom to nosedive to the bottom.

  I holed  up in my studio with my dealer/guitar players, and used  24/7. I became paranoid, compulsive and delusional.
 At a certain point, I was given a large quantity of high potency weed to pass on to my next door neighbor, who was undergoing chemotherapy and dying of cancer. I gave him about a half oz., and the rest went into my lungs.

As I lost my sense of who I was, and felt my dreams and self worth draining away, I finally sat one afternoon on my couch, trying to get the 'courage' up to just end it. I knew my wife was planning to leave, and that she'd take my daughter, and that without her to carry me through life, I would probably end up living back on the streets. My gear was gathering dust, as I couldn't create or play a coherent note...
Mr. L. came to sit by my side and said to me in his thick and personally unique way of speaking, "It okay Teeb, I lub you... No cry Teeb..."

 I finally asked  for help, and found myself at my first NA meeting one day before my 37th Birthday, 1990. Mr. L. will always hold a very special place in the gift that is my recovery today, nearly two decades down the line.

 Mr. L. and I have seen it all together.

 He's seen orcas dancing on Puget Sound as we traveled  the Pacific Coast together. He's been brother to my daughter - teaching her many of her most important life lessons - he's seen me through the deaths of loved  ones, divorce, illness, and healing. I've written of these things before, and will again - it's among the most beautiful stories I have to tell.

 Mr. L. has been with me on trips to Mexico, walked  in the jungle, swam with the whale sharks, and been the *real* love object of many girlfriends as I fumbled  my way through my relationships.

 Last year at this time, I was in dread over his upcoming hip replacement surgery. He's become somewhat frail and we didn't know how he'd manage with general anesthetic, and a traumatic rebuild of his pelvis and femur. But he got through it - fighting with his nurses and showing us how silly our fears really were...

Still, these past couple years have seen him decline in a steady, relentless progression. He forgets everything it seems - his prized wallets and lunch boxes - hats and shoes and gloves... Ask him to go wash his hands, he comes back to show you his clean, fresh shirt. A couple weeks ago, he came to dinner in boxers and a Bronco's parka. Stylish, but yet...

I've survived  the long decline of my mom's illness - seen her go from dynamic and driven, to helpless and broken. I know that dementia is a cruel process, which has a course and which has an ultimate end. For two years I've pleaded  with his doctors - then begged, then demanded  and finally pushed until last week, a kind and understanding neurologist started him on a new-generation memory drug.

 This morning, I went to get him up for his day program, and found him with his nose bloodied. A side effect of the medication is feinting from low blood pressure. He'd taken a face plant getting out of bed . I swabbed him off and sent him off to his day program, who called me a couple hours later to come pick him up. Another side effect is blood-thinning, and he was still bleeding from his scrapes by lunchtime. He gave me a big hug when I picked  him up, maybe more for my benefit than for his own.

 His spirits are still high from Christmas - a big, olde tyme-style radio, many other toys and trinkets... Christmas is his glory, what he waits for through the year to mark passages and hold the place of time. I can't imagine a Christmas without Mr. L.

 I pray that the meds will staunch his decline and keep him from losing too much, too fast, but the fact is, he now has a diagnosis to go with the losses, and like Fred, so many years ago, it carries a heavy implication and the ominous smell of inevitability.

 I've given him each pill over the past week, with a mix of hope and sadness. It'll just become part of a routine - we do a lotta pills around here, between him and his housemates. It'll take a while before we see if he'll remember which shoe goes on which foot, or where to stop shaving, or that he just asked  that question a few minutes ago...

Maybe someday, it'll be me getting the pills, struggling to remember. Maybe that's why it's good that I commit these things to text, though among the doings of all humankind, our little stories don't stand much chance of any real enduring.
 My own story isn't so grand. But Mr. L., Freddy, and so many others, they're teachers and models for us - how to be real, how to be human, how to open your heart, fearlessly yet with the trust of a child.

Whatever he forgets, I doubt it will ever be those things, and whatever I forget, I hope that before I begin to falter, I can become half the man as Mr. L.

-------------------------------

*a footnote:

 Mr L. Has been on his medication for memory loss for a few months now, and has shown marked improvement. We are grateful for every shared minute of this great life.