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Last night, walking at night in flip flops, I realized that the breeze felt … not harsh. Delicious. Summer really is here.
I love summer, but for the shuffle. It would be a wonderful season, were it not for the stress of what to do with children who are no longer occupied throughout the school day. With even the once-affordable YMCA camp topping $400 for two weeks of 9-3 fun for just one child, the options for sending the kids off somewhere for the day dwindle quickly.
So, when a meeting at work Friday required my presence, and I found myself stuck without a babysitter, I told the girls to get dressed, made a couple of phone calls, and headed toward my place of employment.
We dragged in a gigantic box full of art supplies, friendship bracelets in the works, a few snacks. The only thing lacking, as far as I knew, was space. Fortunately, a person in the organization that cohabits our building was out for the day, and the girls quickly set up shop in her office.
My boss walked in to see the kids, and was surprisingly ecstatic. His mantra since I started has been, “We are a human service organization,” and true to form, he set them up on his computer while we had our staff meeting. “You think this bothers me?” he asked, as he went on to tell me about his past experiences with children in the workplace.
The girls were real troupers throughout the morning, stayed relatively quiet as they romped around next door to the executive director of the neighboring organization. But around noon, all art projects were officially boring. Next time we’ll bring more to do, maybe find them work to do as they have for me in the past, assembling packets and mailings.
Maybe this all really will work out. I am looking for babysitters, but in the meanwhile, the best I can do is to work partly from home and fit the kids into my whole life—not just the non-professional parts. Who knows? They may even learn something.
Last year, in the throes of childcare inadequacies, a long commute, and impossible transportation costs, I figured out that I was spending more than I was making. I quit. Driving home from the big city in tears at my frustration over the whole situation, I wondered—as I wonder now—why do we do this? Why can we as a nation not figure out a way for families to be a part of our lives instead of a major inconvenience to the work week? Why can schools not be more understanding and accommodating to the needs of parents who have bills to pay, just as teachers do (but on an entirely different schedule)? Why do we have to spend so much money for otherwise unneeded things, just to keep the businesses running? The entire system just seems doomed from the start.
I have agonized over the coming of summer for weeks now. I do not want to lose my job. Summer is here, and I realized last night that I am glad it is warm, glad my kids are home, glad for the beach, and glad for my job, too. And about that… after all that worried me about my impromptu “take the kids to work day”…
After all my fretting, the thing that surprised me the most was that no one really seemed to mind. I worked, accomplished things. I calmed down, at least a little. When I really believe that for once I will not be admonished for having children but not the money to get rid of them, I will calm down a lot.
I am glad the kids can see the work I do, and even more, I am glad that they can see that they are not excluded from it.
I would be the first to admit that the chaos of my life sometimes requires an intervention. I can see where this chaos does not always fit the workday. It upsets those who have chosen to avoid such disruptions in their life, and some might argue that attending to children’s needs is not appropriate while trying to do another job. Sometimes I argue this point quite emphatically to my own children, particularly when I am on the telephone, and it is important, or enjoyable, and I want for them to get their own snack. Sometimes I feel my children are inappropriate, too. Still, tomorrow is Monday, and now, at 1:15 pm on Sunday, I still have not found a babysitter. So, working from home, maybe going in for a half hour to pick up papers and check in while kids wait, I can manage just that right now. And despite the interruptions, I have always managed to do a lot.
Some are restricted simply by the capacity to get to an office, to stay for eight hours away from home. Some have so much to offer to the world, if not for being locked away because they do not fit into the rules of the workplace. Some of us in this situation can do a lot, contribute a lot. Our lives are chaotic; the world is chaotic, and an efficient life simply cannot ignore this fact forever. Instead, imagine that we embrace that chaos, let it in. Maybe it is not as unworkable as we think.
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.
