Disability/Challenges-related
Questions 31-40
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THE
QUESTION:
D35: Why do people with Down Syndrome look the same?
POSTED MARCH 4, 1999
Ashley L., 14, female
<EmeraldAsh@aol.com>,
Houston, TX
ANSWER 1:
As the mother of a 14-year-old with Down Syyndrome, I can
tell you that the reason people with it have typical characteristics
is that they have a extra No. 21 chromosome (thus the name trisomy
21). For reasons not completely understood ,every person with this
extra chromosome will have some or all characteristic symptoms
associated with Down Syndrome. This is why many people with down
Syndrome have a small, flat face, Asian-appearing eyes and small
ears, and are small in stature. Besides the physical
characteristics,many people with this syndrome suffer from heart
defects, impaired hearing,and impaired intellectual development.
Contrary to the popluar belief of our ancestors, people with Down
Syndrome are not related to each other anymore than any two people on
the street, and they are not ancestors of people from Mongolia, which
was the belief long ago, thus the outdated term "Mongoloid."
POSTED MARCH 5, 1999
Jenny
<jenny.houghton@newhouse.com>,
female, Arlington, VA
FURTHER NOTICE:
All people with Down's Syndrome do notl ook exacly alike.
They do share some of the facial and physical characteristics of that
condition. Since Down's Syndrome is caused by a chromosomal
abnormality, the disease affects them not only mentally, but changes
the life expanctency because of many other common illness that a
person with Down's Syndrome is more likely to have like kidney
failure, or heart disease. I'm guessing that fear of the unknown is
the reason you asked this question. But everytime I look at my little
brother, all I see is beauty and love.
POSTED MARCH 5, 1999
Julia Co., 19
<julia.connell@marymount.edu>,
Arlington , VA
FURTHER NOTICE 2:
Persons with Down's Syndrome do not look alike - one can
differentiate between two different persons with the syndrome.
However, people with Down's do have certain characteristics common to
their condition that makes it obvious they have Down's. Down's is
caused by having an extra chromosome 21 (genotype) and the expression
of the extra genetic material manifests itself as several noticable
characteristics (phenotype: 1) prominent eyelid folds - hence
"mongolism" 2) low set ears 3) decreased intelligence - severity very
variable 4) simian crease - continuous crease across palm 5) heart
defects - variable severity 6) decreased coordination Though Dwon's
may be difficult to diagnose at birth, these and other traits become
more prominent as the baby grows older. This goes to show that much
of what we are is the product of our genes - good or bad.
POSTED MARCH 5, 1999
Gaz, Baltimore, MD
FURTHER NOTICE 3:
To Gaz: Your closing that "we are all a propduct of our
genes, good or bad" perpetutates the thought that peole with Down
Sydnrome have "bad genes" as opposed to the common variety, assumed
to be "good genes." Although there can be much suffering from the
physical problems associated with Down Syndrome, haven't we all heard
of the "perfect child" who succumbs to leukemia? As far as the
intellectual development, how many people with above-average
intelligence are on death row for horrible crimes? Instead of
thinking of people with Down Syndrome as people with "bad" genes, how
about "different" genes? There is room in this world for
everyone.
POSTED MARCH 9, 1999
Jenny
<jenny.houghton@newhouse.com>,
Arlington, VA
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THE
QUESTION:
D34: To parents of children with disabilities: I work in a daycare
center, and I suspect, judging on information I have received in a
college class, that one of the children is mildly autistic. Her
mother has never mentioned any sort of disability to us, and as a
result, I am wary to ask her about the child. I am not a certified
teacher, just a college student. How would you feel, as a parent, if
a college student had approached you with the possibility of your
student having a disability?
POSTED JAN. 5, 1999
Ginny C., female, 19, Arizona State University early childhood
education major,
<poohfrk79@aol.com>,
Scottsdale, AZ
ANSWER 1:
In this situation, some trust should be put in the
parents. Chances are, if you've noticed peculiar behavior in their
child, then they have, too. Sometimes, however, parents may become
blind to any possible disability their children have because of the
prejudice toward disabilities in our society. If you believe this is
the case, then a direct confrontation would only prove
counterproductive to your cause, because it would force the child's
parents to confront a problem they obviously don't want to address.
Perhaps a less direct approach should be taken, such as mentioning
some of the child's odd behavior to the parents, and leaving them to
draw their own conclusions and decide the best course of action for
themselves. Your opinion, while quite possibly justified, can inspire
spite from the parents because of your age and status in comparison
to theirs.
POSTED JAN. 6, 1999
Chris M., 17
<CMosier513@yahoo.com>,
Las Vegas, NV
FURTHER NOTICE:
Chances are the mother already knows if there is a
problem. Also, chances are there may not be a problem. I would advise
you not to say anything. One of the things that has always made me
furious is an early childhood education person wanting to tell me how
to raise my child, especially when that person has no children. Take
this as some advice from a seasoned parent: You don't learn it in
books or in a college class. I learned this when my daughter was a
baby. Nothing in any book ever pertained to my daughter. So
please use discretion when it comes to giving advice to a parent,
unless that parent is asking. When you have children, you will
understand this. (By the way, I am not knocking college. I have a
degree.)
POSTED JAN. 6, 1999
J.P., mother, NC
FURTHER NOTICE 2:
My grandson's autism has turned me into an advocate and
researcher on the subject. You face a daunting task. Most uninformed
parents act in denial when possible autism is brought to their
attention. Yet for the good of the child, the most important thing is
early intervention. If you opt for a sensitive, diplomatic approach,
you can talk about "developmental delays" that can benefit from
professional evaluation ... and by professional I do not mean the
local pediatrician who usually knows very little about autism. I mean
a professional with extensive experience in such disorders as
Pervasive Developmental Delay and Aspergers Syndrome, all of which
are much different from Downs Syndrome, mental retardation and
bipolar. Much useful information can be gained from sites such as the
Autism Research Institute, and the newsgroup
bit.listserve.autism.
POSTED JAN. 6, 1999
Al F., male
<forman@gate.net>, FL
FURTHER NOTICE 3:
I wouldn't think any parent would like to hear an
evaluation of their child by a college student. I'm not a teacher,
but I majored in Elem. Ed. and did spend a lot of time in elementary
school classrooms. If you suspect a problem with this child, you
should report it to the daycare teacher and let her/him take it from
there. Make sure that you back up your diagnosis with hard facts;
that way the head teacher won't just brush off your observances.
Please don't think I'm being hard on you (or that I don't think you
know what you're talking about); I just don't think it's your place
to tell the parent. It's really up to your superiors. Let them know
and see where that takes you.
POSTED JAN. 6, 1999
Ro, 31, white female (married with no kids), Boston, MA
FURTHER NOTICE 4:
My wife and I have a son who has ADD (Attention Deficit
Disorder). We learned this because of a wonderful teacher he had in
the first grade. Rather than just writing him off as a troublemaker
because of his behavior (as his kindergarten teacher had), she looked
for a possible reason. She then talked to us about her suspicions,
and recommended some resources. Rather than being upset, we were very
grateful that a professional cared enough to look past the behavior
and help us find some reasons. While you may not be the person to
approach this parent, you certainly should make your concerns known
to your superior. It may be that this parent suspects something is
wrong, but doesn't know what to do. You could be the catalyst for
making a real difference in this child's (and her parents) life.
POSTED JAN. 7, 1999
Phillip W.,
male<phillip@turnergroup.com>,
Osceola, IN
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THE
QUESTION:
D33: What is the best way to phrase a query to find out the nature
of a person's disability? I find that since I don't believe in asking
"What's wrong with...?" I am thwarted in situations where I would
normally reach out.
POSTED DEC. 28, 1998
Roberto T., 27
<bobbyboy5@aol.com>,
Aurora, IL
ANSWER 1:
Be genuine. Say "I'm uncomfortable about asking this, but
I'm curious about your leg/arm/whatever. Are you willing to talk
about it?" This shows respect and also makes it easy for the person
to say they would rather not discuss it if they don't want to.
POSTED JAN. 4, 1999
B. Hale, able-bodied so far
<halehart@aol.com>,
Hartford, CT
FURTHER NOTICE:
While you may be curious about the disability, it really
should not be important to you to know what it is - only that it
physically challenges the other person. Just knowing that fact gives
you the power to be sensitive to the person - or to leave them
alone.
POSTED JAN. 4, 1999
Eve, female, Boston, MA
FURTHER NOTICE 2:
First, I would say it depends on why you're asking. If you
want to know what specific issues the person is dealing with so you
can make accommodations, you could ask, "What do you need?" If you
are asking because you are getting to know the person, try "What's
your disablity?" I would agree that asking what's wrong with them
would not be appropriate.
POSTED JAN,. 4, 1999
Kathryn, 37, female
<KathrynJB@aol.com>,
Salem , MA
FURTHER NOTICE 3:
I am 27 and have cerebral palsy, and have had to deal with
questions regarding my disability all my life. I know many people I
come in contact with are curious. I don't mind talking about my
disability, but my level of comfort with the topic depends on the
person asking and how they pose their questions. I do think it is
rude for a stranger to ask questions. It really is nobody's business.
One time, a furniture delivery guy asked me "What's wrong with you?"
I was shocked at his nerve. If it is someone I know or even just
someone I see frequently, like in the elevator at work, I don't mind
that person saying, for example, "I would like to know more about you
and understand your disabiliy. Can you explain what it i s and how it
affects you?" It also may be helpful to apologize for your ignorance,
although I understand that most people are not educated in terms of
disabilities unless they have a family member or someone close to
them affected by one. Also, do not make any assumptions about
limitations the disabled person might have. I am offended when
someone assumes I live with my parents, which I don't, or that I
don't drive, which I do. Bottom line - just use sensitivity without
talking down to the person and treat him or her the same way you want
to be treated.
POSTED JAN. 14, 1999
Ginger, 27
<Ginger.Atkinson@NATIONSBANK.com>,
Dallas, TX
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THE
QUESTION:
D32: I work in a nursing rehab facility but am not a nurse. I have
close contact with most of the residents. One resident with MS asked
me to buy something for him recently, when I went in a couple days
later with it, he didn't remember me at all. I was so sad after I
left his room. What happened in such a short space of time? Is this
an indication his condition is deteriorating? I appreciate the
opportunity to learn more about this devastating desease.
POSTED DEC. 28, 1998
Nancy H., female
<sheltien@cruzio.com>,
Santa Cruz, CA
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THE
QUESTION:
D31: I'm a severe arthritic and use a three-wheel scooter to get
around. Why is it that I'm invisible to some people? They cut across
my path like they are playing chicken, or casually stroll in front of
me and then seem amazed I'm there, stopping with a jolt. I encounter
this all the time, and it makes me furious. One mother whose child
ran into me yelled that I didn't belong in the mall. And why, when
I'm in line next to some people, do they look at me like I'm from
outer space?
POSTED DEC. 22, 1998
Shirl, 51, married, white female, Londonderry, NH
ANSWER 1:
I have noticed there seems to be among some people an
incredible hostility toward people with disabilities. I cannot
explain it, except to say it seems to come from the same place as
sexism, homophobia, racism and other forms of bigotry. I have a
chemical sensitivity; I have needed to ask at jobs that the people
with whom I am working refrain from wearing scented products. My
current employer is cooperative, but I was out of work two years
while being fired or having offers withdrawn when employers found out
I needed accommodation (yes, this is illegal). I remember an exchange
in Dear Abby when a reader complained about sitting near a disabled
woman in a restaurant; the woman's husband needed to feed her and the
writer was upset. Abby's response was that she would rather look at
the disabled woman than the writer of the letter, adding "people like
you make me sick." I realize I am not really answering your question.
All I can say is your experience is no more unique than the constant
brushes with racism experienced by an African American or the
constant sex discrimination experienced by a woman.
POSTED DEC. 24, 1998
Carol, disabled female, Castro Valley, CA
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