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My friend’s neighborhood is about to be invaded by adults with Prader-Willi Syndrome.

This, apparently, is a problem.

The issue came to light recently, when the other house on the market—oh, my friend is trying to sell her house right now—sold, to an organization that places people with various disabilities in group homes. And get this: the group homes are in ordinary communities, right next to everyone else. In this case, it is one of the finest neighborhoods in town.

Some may call this inclusion.

My friend’s “neighborhood organization,” created solely around this issue, by the way, calls it a threat.

My friend, who also has a few kids with special needs, is incensed by her neighborhood’s reaction. Knowing my views on the subject, she called me. My advice? Go door to door and ask all the families who have kids receiving special education services to put up signs that say “THIS IS A GROUP HOME.” After all, what is the difference?

The agency that owns the home intends to go door-to-door to talk to neighbors in the community. The neighborhood association sent out emails suggesting that residents should not invite the agency representatives in. Instead, neighbors should wait for the public forum, with attorneys present.

And for what? To keep everyone who is “different” away from this elite group? Perhaps they see the group’s individual approach as a “divide and conquer” approach. But what if the neighborhood organization has simply made statements that only appear to reflect the opinions of all its members? What if the emails that the group sends out ask not for input from the community, but only determine the action that should be taken? What if someone disagrees?

I called a friend who deals with this issue, and others like it, often enough. The suggestion: nada. The group has mobilized, and a relevant state agency, Commissioner included, has already been notified of the neighborhood’s intentions to fight this home tooth and nail. Do they have a case? Well, sure. It’s a case, as long someone makes it one.

So, after a few days of incited work to educate the community, I am calmed by my friend in-the-know. “They’ve made up their minds. They don’t want to hear your side,” he says. He has seen a lot of this before, so I believe him. But I do not want to. These neighbors just don’t want to hear the worth of people with developmental disabilities! My friend tells me this. And this guy is one of the most unflappable people I have ever known.

I do not deal with this realization so well on my own. After all, Prader-Willi… well, kids with Prader-Willi are not so different from my own kid. In fact, he has been tested for it, because he’s a food-loving kid with low muscle tone, cognitive impairment, a sweet temperament, and according to this group, no value! When he grows up, will no neighborhood want him either?

Here is a description of a few Prader-Willi symptoms, in far more detail than anyone wants to read:

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Neonatal and infantile central hypotonia, improving with age
Feeding problems and poor weight gain in infancy
Excessive or rapid weight gain between 1 and 6 years of age; central obesity in the absence of intervention
Distinctive facial features—dolichocephaly in infants, narrow face/bifrontal diameter, almond-shaped eyes, small-appearing mouth with thin upper lip and down-turned corners of mouth
Hypogonadism—genital hypoplasia, including undescended testes
and small penis in males; delayed or incomplete gonadal maturation
and delayed pubertal signs after age 16, including scant or no
menses in women
Global developmental delay before age 6; mild to moderate mental
retardation or learning problems in older children

Hypothalamic dysfunction is thought to be the cause of the disordered appetite/satiety function characteristic of PWS. Compulsive eating and obsession with food usually begin before age 6. The urge to eat is physiological and overwhelming; it is difficult to control and requires constant vigilance.
Infants and young children with PWS are typically happy and loving, and exhibit few behavior problems. Most older children and adults with PWS, however, do have difficulties with behavior regulation, manifested as difficulties with transitions and unanticipated changes. Onset of behavioral symptoms usually coincides with onset of hyperphagia (although not all problem behaviors are food-related), and difficulties peak in adolescence or early adulthood. Daily routines and structure, firm rules and limits, “time out,” and positive rewards work best for behavior management. Psychotropic medications—particularly serotonin reuptake inhibitors, such as fluoxetine and sertroline—are beneficial in treating obsessive-compulsive (OCD) symptoms, perseveration, and mood swings. Depression in adults is not uncommon. Psychotic episodes occur rarely.
Motor milestones are typically delayed one to two years; although hypotonia improves, deficits in strength, coordination, balance, and motor planning may continue. Physical and occupational therapies help promote skill development and proper function. Foot orthoses may be needed. Growth hormone treatment, by increasing muscle mass, may improve motor skills. Exercise and sports activities should be encouraged and adaptations made, as needed. Proficiency with jigsaw puzzles is frequently reported, reflecting strong visual-perceptual skills.
Hypotonia may create feeding problems, poor oral-motor skills, and delayed speech. The need for speech therapy should be assessed in infancy. Sign language and picture communication boards can be used to reduce frustration and aid communication. Products to increase saliva may help articulation problems. Social skills training can improve pragmatic language use. Even with delays, verbal ability often becomes an area of strength for children with PWS. In rare cases, speech is severely affected.
IQs range from 40 to 105, with an average of 70. Those with normal IQs typically have learning disabilities. Problem areas may include attention, short-term auditory memory, and abstract thinking. Common strengths include long-term memory, reading ability, and receptive language. Early infant stimulation should be encouraged and the need for special education services and supports assessed in preschool and beyond.
General health is usually good in individuals with PWS. If weight is controlled, life expectancy may be normal, and the individual’s health and functioning can be maximized.
The constant need for food restriction and behavior management may be stressful for family members. PWSA (USA) can provide information and support. Family counseling may also be needed.
Adolescents and adults with PWS can function well in group and supported living programs, if the necessary diet control and structured environment are provided. Employment in sheltered workshops and other highly structured and supervised settings is successful for many. Residential and vocational providers must be fully informed regarding management of PWS (http://www.pwsausa.org/syndrome/basicfac.htm).
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And really, what would be so bad about anyone with any disability living here? What if the group included those with mental illness? What if they were supported, trying to live a life within a community? Do they not have the right to do that?

All right, readers, this is just not right. Last year I had the rare opportunity to be a fellow in a LEND program. LEND stands for Leadership Education in Neurodevelopmental Disabilities, and I entered the program with no more credentials than the ones you get from being a parent, and perhaps a determined parent. There we fellows spent our Thursdays and Fridays on the grounds of the Fernald Developmental Center, an institution, a constant reminder perhaps of what we did not want for the future. It was one of the most challenging years of my life, and I can only hope that the late-night hours spent struggling to finish papers on disability policy issues were not for naught. The effort should be more, part of a bigger picture. I wanted the training so I could help change the world. And if it takes the rest of my life, I will fight in whatever way I can for the rights of “those people” to live as people not in places like Fernald, not away from “us”, but with “us”, in “our” communities.

You never know when “one of them” is really “one of us.”

Well, yes. Actually, you do. After all, we are all only temporarily abled, and maybe not always at optimum ability level, even at that. It is all a part of the human condition that we seem to fear so much.

This, from the Developmental Disabilities Act of 2000, sums it up well enough for now:

“..disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society… ” [underline mine]

And now the real challenge, when preaching a cause seems so easy… I will try.. be it so hard, to understand and hear the fears of the people who want to keep these “different” people–all “different” people–out. I will try to understand. We are not all so different, and we all have our fears, our prejudices.

Perhaps we are also all a bit different, but we can still love our neighbors.

Yesterday my mom called to see if I wanted her waffle iron.

Today, she was trying to remember how many windows are in my girls’ room, and what size the windows are.

She has been concerned about this sort of thing lately, because she is preparing to move from the house she has lived in since 1967.

Forty years. I am forty-two, and, yes, this is the house I grew up in. It is the same house with the same basement I described in my first journal post here. It is the same house that has the mostly dry creek behind it, and used to have acres and acres of woods beyond that. It is the house I sometimes hated to come home to when I was young and wanted to fly, the house I was sometimes relieved to see. It is the house where I dreamed those dreams of faraway places. It is the house that I always think of when I think of my childhood. And soon, it will be someone else’s house.

This is hardly an unknown event. We all grow up. Most of us leave. I left home in a flash, literally, making up my mind in two hours to pack a suitcase, kiss my mom goodbye, and climb into the passenger seat of a sports car headed to Colorado. It was a crazy thing to do, unprecedented even for me, at least on that scale. Up to then, my spontaneity had been limited to an afternoon, a week perhaps… not a lifetime. Lessons learned.

But it was still time to leave home. I never went back.

Some of the same neighbors still live in the same houses next to my mom. Most of them are very old now, and I have known them since I was a little girl. My mom is 76. She says now that she should have moved somewhere more convenient, smaller, after my dad died, years ago. I agreed at the time. I was 20, and hated going back to the ‘burbs when I quit college. I wanted my own apartment, and I wanted my mom to be the independent creature she seemed to have aspired to be. I had moved back home with her partly to help her, partly to help me. I went from door to door with my resume and found work. I was ready to leave my mark on the world when the time was right. In other words, I wanted to leave. In other words, I was determined not to die without living first. In other words, I wanted my mom to live, too, not become some lonely middle-aged woman in a ranch house with a boring job, a cigarette, and a television in the background. It frustrated me, and made me feel guilty at the same time… Who was I to judge?

We did live in a three-bedroom ranch, not unlike a lot of middle class St. Louis houses. It was a nice suburb, not the richest or most glamorous. My mom had worked before I was born, taught, dressed to the nines, drove a ’62 Galaxy convertible and had her pilot’s license. Her legacy to me: the clothes, the hats, the gloves, and 1950s lingerie. Amazing. The sense of adventure. Then she got married, pregnant (yes, in that order), went to PTO meetings, and never had a paying job again before my dad died.

When my dad finally did die (it was awful, slow, cancer), she agonized about what to do for a long time, as she does about most things. Finally, after getting fired from an evening stint selling some substandard product over the phone (unsuccessfully, which is why she got fired), she found a job in a kitchen design place. Never one to overstep her role, she cattily critiqued the designers, and was usually right, and went right on answering the phones and typing envelopes. Her boss offered her the chance to learn to design kitchens herself, but she never took him up on it. This lasted until she retired, several years after I had headed west.

She did all right, still does. It’s strange to think of her not sitting in the living room with a crossword puzzle and a cat on her lap, strange to think that she’ll be in a living room somewhere else. It’s strange to think of the bird feeders in the backyard—she will no longer have a backyard. Ah, the backyard, and its wildlife… My family had some strange customs, I realized later. One was feeding raccoons. When I was about five, a little masked thief was prowling around the backyard. My mom thought it was cute, and gave it a Hershey bar. It came back. Before long, we were feeding many raccoons regularly. Hershey bars were cheap, but those coconut-covered marshmallow puff things with the cookie bottom were even cheaper. With Mystic Mints as the choice, we also did not tend to eat the marshmallow things. At some point, my mom decided that the new wild pets needed a healthier diet, and started buying Chuck Wagon dog food–maybe that brand because my brother and I liked the commercials. We were lucky not to have skunks or larger, more ferocious wild things, and only saw the occasional possums in the mix. The birds cleaned up the leftovers the next day. I realize now that all this was a little odd. The brand of dog food has changed to Purina Dog Chow (it’s supposedly healthier), but by golly, my mom still feeds those raccoons. One night this week, I expect to hear a report on how big the babies have gotten. Her new neighbor, who has expanded her entire porch out into the woody hill, seems ready to take over the care and feeding of suburban wildlife. This, I believe, is a great relief to my mom.

Houses are containers of memories. I sometimes think about this at garage sales, and wonder about the lives that touched an ordinary object with a masking tape price: 25 cents. I can imagine the things that my mom will never be able to move, things I have no room to take, things my brother cannot use. A white pyrex dish with turquoise roosters around the outside reminds me of the rice that my mom made for nicer occasions, and the faces that sat around the table at different times that it was served. The big yellow bowl was for popcorn, on Sunday afternoons, made in the heavy frying pan, with a mismatched lid. A western was on the black and white television in the basement, and the fire in the fireplace was too hot, nice but making me sleepy on a day too cold and grey to lure any of us outside.

Once, after I had left home, I went to visit my mom’s aunt and uncle. They lived in St. Louis until I was around ten, and had always been like grandparents to me. Uncle Perry had left Poplar Bluff in his twenties, and talked about going back home. “You can’t,” he said. Things change, some remain, but the circumstances change, and you change. So what remains? What makes places and things hold us and call to us? Is it really the lamp on the corner end table? The Spode china? The piano with the recently repaired key? The button box? Oh, oh! these things enchant me and exhaust me.

No. Not the clutter. I think what we want is some piece of our lives, some tangible reminder of the stories, some mnemonic trigger to conjure up the faces, the precise feelings we still hold and cherish in our hearts. The comfort of things. And at some point, the courage to let them go.