Recipe Calls For: 1c solid work ethic, 2tsp adventure, 1 dash wanderlust, …

Posted July 19, 2007 by JMF
Categories: jmf, misc

I often wonder what makes me ME.  I wish I could list each and every facet of my being – everything from my interests, goals, & values to my weaknesses & faults – and identify the source for each corresponding sliver of my identity.  The exercise might yield a result such as this:

  1. Desire to See the World  —>  National Geographic Magazine
  2. Love of Music  —>  Elementary School Music Class
  3. Aim t0 Make an Impact  —>  Political Rally in D.C.
  4. Work Ethic  —>  Parents
  5. Fear of Heights  —>  Ice Climbing Trip
  6. Results Orientation  —>  Boss from Bank of America
  7. Etc… 

My main reason for yearning this sort of wisdom is so I can isolate and understand the influence my brother has had on me.  I can’t help it – I do frequently wonder who I would be if I had all ‘normal’ (I hate that word) siblings.  This is NOT because I wish I could be that other person without an autistic brother.  This is because I feel unique in the perspective I have on life due to my brother – and I want to know what I can specifically appreciate because of him.    

I certainly exhibit traits and endure thought processes that appear very obviously connected to my aforementioned sibling experiences.  Namely, I do not take for granted the ease with which I am able to navigate through life.  I am not referring to anything nearly as complex as professional deliverables or financial goals.  I’m referring to seemingly simple things like living independently, verbalizing what is on my mind, tying my shoes, or even reading this blog.  Perhaps since I know the frustrations my brother may encounter in each one of these endeavors, I don’t ever want to take these capabilities for granted.  

Not as immediately apparent, but certainly linked, are the aspects of ME that can be attributed to my birth order…or more so to my disregard for birth order.  As I mentioned in my first post, I am biologically a middle child yet developmentally the oldest.  I’ve been told on several occasions – and upon introspection I feel this to be true – that I sometimes exhibit qualities more common to first borns than to middle children.  My family has footage to prove I was ‘assertive‘ (my attempt at putting a positive spin on ‘bossy’) in my youth…and I certainly illustrated a level of discipline supposedly inherent to eldest children (how about strategizing for college during my freshman year of high school?). 

Then there are the characteristics of ME that I mostly theorize are products of my brother’s influence on me.  Would I otherwise have a passion for health care?  Is my desire to travel the world out of knowing my brother can’t?  Could it be that my love for learning foreign languages stems from my appreciation for his language of communication? 

In my 31 years I have certainly come up with many theories to this end…and while I’ll never know precisely the impression my brother has made on my identity, it gives me butterflies in my stomach just knowing that he is woven into the quilt of me

Parallels in Care? …or Intersections?

Posted June 28, 2007 by JMF
Categories: caregiver, elderly care, group home, turnover

I was speechless after reading Clare Ansberry’s front-page WSJ article today, “Babes Among Elders: Nursing-Home Kids.”  For those of you who didn’t have the chance to read it, you can find the article here.  

It seems that my earlier posts on the parallels in care for the disabled and elderly were actually somewhat understated.  In fact, as this article illustrates, there are also intersections.     

In short, Ansberry highlights an astounding statistic regarding severely disabled children…

“About 4,000 children nationwide live in nursing homes, according to Medicaid– a small, often hidden population that has wound up in these incongruous settings, often against their parents’ wishes. While some of the homes cater to children, many are traditional facilities designed for the aged.

So why are disabled children living among elderly residents – “many with dementia and most four to six decades older” – and in an environment intended to provide care for the aged?  Why are disabled children living far from their families, to receive care from a staff that is “often more familiar with geriatrics”?  

There is no question that caring for a disabled child is challenging and costly – especially when the child is severely disabled like the subjects of this article.  It is when care becomes too challenging or too costly for a family to support independently (which, in these circumstances, can often be the inevitable), that Medicaid offers the unlikeliest of solutions for young children: nursing home care. 

What baffles me is that these children are being placed in an environment that not only strips them of their peers and family, but also costs taxpayers more.  What baffles me the most, though, is that the recipient of Medicaid services – a disabled, living child – is somehow not truly considered in the process.

Well, we know there are several levers here.  Among them we can at least identify 1) the high cost of 24/7 care to both the families and health care system; 2) the presentation of a disorder that, if not tended to, can become life threatening; 3) the limited availability of caregivers and/or group homes; and last, but not least, 4) the families’ already challenged financial situations.  It is these factors, when taken collectively, that lead to the statistics Ansberry highlights.  

My immediate reaction to this article was perhaps what many readers experienced…where can these children play or color or listen to music?  Who teaches them life skills?  Who can they interact with in their peer group?  Don’t they get homesick?

These thoughts were quickly followed by…how are these children getting adequate care?  Aren’t caregivers for the elderly already stretched thin in their primary duties?  Won’t caregivers get easily overwhelmed and leave? (…or worse, lash out at those who need their care most?) 

Doesn’t this model merely jeopardize an already fragile system of care?

Communication Breakthrough

Posted June 26, 2007 by JMF
Categories: communication, sesame street, youTube

You have no idea how much this video clip impacted my family this week.  Check it out:

 

Perhaps not exactly one of Sesame Street’s top 5 skits, it still resonates with my brother.  As I might have mentioned, Sesame Street is absolutely central in my brother’s life (and my family’s life, as a result).  While you might be picturing the five of us huddled around a TV set watching reruns of Bert, Ernie, and Big Bird, you might be surprised to know what else I mean by “central”.

My brother is VERY social.  His means of socializing, while normal to me, still absolutely fascinates me.  My brother memorizes Sesame Street skits from start to finish…and the way we socialize with him is to play out the scene, reciting each corresponding line that we, too, have committed to memory.

Often times when I pick my brother up from the group home, the first thing he says to me is, “Me Kyaneus”.  It may not be obvious to you that “Kyaneus” is a king who – with blue fur and a crown of white felt – asserts his identity among the other kings claiming to be Kyaneus in Jim Henson’s land of imagination.  But to my family, Kyaneus is a household name. 

so for the 15 minutes between the group home and the driveway at my parents’ house, I’ve learned to assume the role of Kyaneus’s rival while the part of Kyaneus is played by, none other than, my brother.

I can’t help but hypothesize that my brother’s self-created mode of socialization is, in actuality, his language of small talk.  When I put it in these terms, his creativity absolutely astounds me.   

Think about it – aren’t the likes of “How are you?”, “I’m fine”, and “Can you believe this weather?” merely memorized, unoriginal, accepted modes of socialization?  Aren’t we merely playing out the same predictable “scene” over and over again?  The difference, really, between Kyaneus and “I’m fine” is that the blue furry guy merely escaped social convention.  To tell you the truth, I think both of these forms of small talk say the exact same thing.

So what do Harold, the letter H, or ‘Hello’ from the clip above have to do with any of this?

My mother was watching my brother’s beaming smile over the weekend as he followed along in excitement to one of his favorite Sesame Street episodes.  Soon enough this clip came on, and suddenly the 5 years of listening in confusion to my brother say, “Is Hal there?” became crystal clear.

Ahhh, THIS is the scene he’s been trying to get us to play all this time.

As you might guess, my mother’s epiphany led the rest of us to “learn our lines”…and now, when I say to my brother, “Is Harold there?”, he responds accordingly with a sense of relief…

Finally, they get it.

JMF

 

The Huiling Center

Posted June 25, 2007 by JMF
Categories: China, group home, Huiling Center, travel

China really intrigues me. 

I am keenly aware that I’m not alone, as just about any day you can pick up a western newspaper and see something written on China.  Whether it’s the country’s ties with Sudan, its dramatic preparations for the ’08 Olympics, or its growing focus on consumerism…everyone from the President, to medical device manufacturers, to marketers of Kool-Aid is thinking about China.

Last summer I decided to see this land of mystery for myself.  Over the span of 2 weeks I hiked & camped the Great Wall, ate Peking Duck (in Peking!), and danced the macarena with a courtyard full of completely-out-of-sync locals.  I also asked so many questions of my guide about life in China, that he must’ve breathed a HUGE sigh of relief as he bid me adieu in Shanghai on our final day.

While the culture & industrialization of China interest me to no end from a business perspective, I’ll save that for another post.  I really want to tell you about my visit to Xi’an.

Xi’an – a “small” Chinese city of 6 million – is best known for its Terracotta Warriors, one of the world’s most fascinating archeological discoveries.  What I did not know about Xi’an is that it is also the home of a much lesser known site:  The Huiling Center.   

The Huiling Center provides care and services for the mentally handicapped.  

I’ll be honest- I was very nervous about visiting this center.  I wasn’t sure if the visit would ‘hit too close to home’ or whether it would be uplifting and welcoming.  I had visited similar sites on other trips and was surprised to find myself somewhat overwhelmed by the experience.

Once welcomed at the front door by one of the Center’s bright-eyed, English speaking teachers, we were led through a maze of colorful hallways…”This on the left is a painting by one of our talented residents…and this here on the right is a photo of so-and-so learning to play the piano.”  I glanced in sheer amazement at the collage of artwork lining each approaching wall…this was not at all how I had envisioned care for the disabled in China.  Any preconceived notions I may have had most certainly involved images of white-cinder-block-walled institutions far away in China’s rural edges. 

Any remaining anxiety of mine was melted away by the arrival of 30 excited, smiling, bright-costume-wearing residents who walked nervously into the reception area behind us.  Within seconds, I found myself clapping along to the beat of celebratory Chinese music and, again, watching in amazement as these 30 residents with varied disabilities performed for us.  As I danced along with them in the final number, I couldn’t help but think how much my brother would have loved this.

After the performers completed their final bows and curtsies, the teacher politely described opportunities to support the Center.  It wasn’t until I returned to the U.S. and further researched the Huiling network that I realized how successful these performances were in raising needed funds.  I also didn’t realize what a feat it was to create this center, in light of China’s dearth of support for such services.  

AND while I’ve only just begun to learn about the Huiling Center’s founder, Meng Weina, I’m already blown away by what I learned of Meng here.  She appears to be a strong, passionate, and fierce pioneer in fighting for improved care for the disabled in China.  As I continue to learn more about Meng, I hope my perception of her and her surreal Huiling network only becomes that much more inspirational.  

Here are a couple photos of the talented residents at Huiling Center…enjoy.

JMF 

china-1.jpg

huiling.jpg

The Game Where Everyone Wins

Posted June 21, 2007 by JMF
Categories: communication, travel

Okay – you may soon find me to be a little bit weird…

I LOVE TRAVELING. (that’s not the weird part- it’s coming…)

I LOVE the feeling of awe that overtakes me when I’m enveloped by a scene of unmistakable beauty – such as the Rocky Mountains, the San Juan Islands, or the Grand Canyon.  I LOVE staring down at the ground beneath my feet when atop Masada or the Great Wall of China and just trying to comprehend the 2,000+  years of footsteps that made imprints in this same exact soil.  And – based on my earlier post this may not surprise you – I LOVE interacting with the locals anywhere I go, as this, to me, is what it means to experience the world.

Okay, here’s the weird part….

While I was studying abroad in Paris, I started playing this ‘game’ that I now find myself playing most times I travel to non-English-speaking places.  While I haven’t formally named this past time of mine, it could probably be called “The Guess-What-That-Person-is-Saying Challenge.”  Trust me, I haven’t gone as far as to develop an elaborate sort of point system (yet)…and thankfully with no other players except for my own little mind, it hasn’t gotten all that competitive.

Okay, so here’s how the game goes.  The rules are really simple.  Imagine I’m standing 2nd in line at a Parisian pastry shop.  There is a woman in front of me having an exchange with the man behind the counter in French.  She, a local, is spewing vocabulary and slang at a pace roughly 10x faster than the French you learn in any language course.  I’m definitely able to catch some recognizable words that, if I loosely string together, could probably give me an idea of what they’re saying.  But instead of making this attempt in order to follow along, I relax my senses and just get lost in the noise.  In other words, I no longer perceive the utterances from their mouths as discernable, directional terms…just a flow of different sounds.  And these sounds lack definition…they mean absolutely nothing.  I allow these meaningless sounds to float about me as, for all I know, these 2 people are now just speaking in some sort of made-up language. 

The challenge for me now is to examine their mannerisms, their tones, their intonations, and their body language in order to understand this exchange.  And y’know what, it’s an amazing exercise.  Every time I play this game, I get very close – if not spot on – in translating their communication without paying any attention to any actual words.  The power of nonverbal communication is truly fascinating. 

Believe it or not, I’ve actually applied the sort of perspectives I’ve gained through this game to my communications with my brother.  The reason I say this is because my brother does not always communicate using the same English vocabulary and slang that you and I rely on day to day.  Often times my brother communicates using a flow of sounds that, to us, may “lack definition” (to use an earlier term).  The challenge for us, similar to the pastry shop example, is to examine his mannerisms, tone, and body language to understand what he is trying to tell us. 

An illustration of this is when my brother gets frustrated with me or wants me to give him space.  He never raises his voice and says, “LEAVE ME ALONE”.  Instead, he raises his voice, looks at me sternly and shouts a collection of sounds or noises.  And, if he’s really mad, he might even shout what we think may be his version of a curseword – “FARMER!”. 

There are certain occasions when I wonder if my brother is actually playing my game on me.  While he is not able to initiate conversation (or at least conversation as we define it), he is very good at comprehension.  I believe he does have a true understanding of most words and their definitions, yet on specific occasions I wonder if he is hearing “meaningless sounds” from my mouth and reading into my body language and intonation to follow along. 

Hey, who knows?  Maybe my brother is actually much more competitive at this game than I am.

JMF

Parallels in Care, Part II

Posted June 20, 2007 by JMF
Categories: elderly care, group home

Picture yourself in a small, sterile, white room.  Four walls, beige linoleum floor.  There’s nothing to look at except for the window directly in front of you.  The window is oriented vertically – the kind with the top window stationary, and the lower one moveable up and down.  The glass is foggy, so the only way to see outside is to physically slide the lower window upwards and peer through it with your neck outstretched.

And when you do just that, you are exposed to a whole new world.  A world of color.  Not only rich green grass and crisp animal sounds…but the roars of an organized protest or the slapping of heeled shoes running on asphalt.  But unless you open that window, you remain limited to four white walls.

This is how I see interaction with people.  Unless I truly connect with others- by physically sliding the lower window upwards and taking in their impressions – I will remain limited to just one person’s views and ideas.  My own.  Sure- I could get along just fine within those parameters, but the colors would not be nearly as rich.

Now, everyone’s figurative window is very unique.  Some people have windows with excellent tracking – the lower pane navigates easily to reveal their inner soul.  I’m sure you know people like this…they’ll spill their thoughts, ideas, & histories to you.  Others have windows that get jammed – you’re only able to learn so much from them.

The cool thing is that my brother’s window is much more pliable than we thought.  There have been times when we visualized a nail wedged in the upper frame, when we thought we’d only see so much into his way of seeing the world.  But when he has rich interactions with people & his brain is stimulated, my brother shows his own ‘views’ (whether directly by making noises to signal dislike, or indirectly through new behaviors/routines).  While my brother has made a ton of progress, I know there’s much more behind that window we’ll continue to learn about him.  I get so excited just thinking about it.

Similarly, I view residents at elderly care facilities as figurative windows into an unimagineable wealth of wisdom & experience.  Just think about what those eyes have seen!  Think about how 90-, 95-, or even 100-years-worth of learnings about life, business, family, and politics could influence your world!  Just as with my brother, many residents need rich interactions with people and mental/memory stimulation. 

Just as with my brother, many residents need special attention, and the belief from others that their windows are pliable.

While both aging and cognitive disability do, of course, influence interaction…this does not translate into isolation or being left in front of a television set.  

For if these windows are not opened for long periods of time, they will collect dust and moisture and – well – leave you and me denied of the unique impressions and views that make life so colorful.  They will leave you and me in that room staring at four walls and a beige linoleum floor.

Parallels in Care, Part I

Posted June 19, 2007 by JMF
Categories: caregiver, elderly care, group home, turnover

The same year that I left for college, my brother left the house to go live in a group home.  Not only was this an excellent respite for my family, but it was a needed move for my brother.  Y’see when I was choosing colleges to apply to, my parents distinctly told me I could not go to any schools west of the Mississippi River.  So, what did I do?  I applied to (and attended) Washington University in St. Louis, a school located barely 10 miles west of the Mississippi.  I was not only going away to college to advance my learning and meet new people…I went away to college to gain greater independence.

As different as my brother and I are, we are also quite similar.  He, just the same, needed his independence.  Perhaps he didn’t necessarily realize this when my parents transitioned him into his new residence (and my parents probably didn’t appreciate this fully at the moment either, as the move was definitely an emotional experience-)…but my brother , just like me, has grown a lot since that day 13 years ago.  Sharing a home with 5 other men with similar neurocognitive disabilities and a rotating staff of 2-3, he has been taught to assume certain responsibilities at home.  He has learned to clean up after himself at the dinner table, to help in the kitchen (which he truly enjoys), and to take out the trash when it’s full (…and sometimes when it’s not full at all, just because he loves the responsibility so much).  When we bring my brother back to our house on weekends, we are often amazed to see the new skills he has learned.

My brother’s continued development and well-being in the group home is – no surprise here – influenced by the level of training and expertise of the staff.  In addition to training in behavior modification and other household protocols, staff members must also exhibit extreme approachability, warmth, and above all, patience.

The truth is, working (and thus living, too) in a group home with 6 grown, autistic men is a tough job.  These men, including my brother, can act just like children.  They can have temper tantrums, they can ignore house rules, and they – just like children – can (and do) require greater attention.  The unfortunate truth is that compensation in this field doesn’t always match up with the job challenges – – needless to say, staff members should (and in my view, need to) have a passion for the job and its wonderful rewards in order to endure the challenges.     

Group homes face the enduring problem of not only finding- but keeping – passionate caregivers.  I recently saw a statistic online that in Oregon, staff turnover rates average 85% per year.

Why are these rates so high?  To name several possible reasons – compensation, emotional and physical strain, understaffing, work/life balance, age (both young and old)…

I don’t know about you, but to me this sounds awfully similar to the chronic problems faced by caregivers in elderly care facilities. 

Is this too far fetched, or can we realize synergies in the learnings from these two areas of care?


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