Dare To Ask Talk And News About Our Differences 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two people on the street, and they are not ancestors of people from Mongolia, which was the belief long ago, thus the outdated term “Mongoloid.”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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