Two of my children have developmental delays. Like others who share the role of teaching, researching and living with the concept of mental retardation, I find the literature rather flat and not informative enough. After all, I have two wonderful, intelligences and personalities that are not touched on in the literature as the real people they are, and I have 3-D, living breathing, 24 hours a day happenings that inform me about the ebb and flow of youth who are mentally challenged.
One of my daughters, Emily, has Down's Syndrome. She fits many of the profiles I read about and she is very difficult to test, as is true of many retarded youth. She has math and reading abilities at the preschool level. She shows an IQ between 30 and 45 pretty consistently. That puts her below the moderately retarded range.
Definition of the American Association on Mental Retardation (AAMR): Mental Retardation refers to substantial limitations in present functioning. It is characterized by significantly sub average intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas: communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work. Mental retardation manifests before age 18.
Now you have a definition and characteristics, but it doesn't begin to tell you about Emily.
First lets get a little history about her. I am a single parent, and I adopted Emily when she was seven. She was in foster care for a long time. One of the homes, in particular, was a very good one, but she was shuffled around quite a bit. A case manager told me that Emily was neglected by her parents as an infant, and removed from their care. She said that Emily was abused in several placements, which appalled this social worker who had a deep concern for Emily's well being. Didn't learning that little bit of history already add dimension and the first touch of empathy for Emily?
When Emily got out of the car and stepped foot on our property for the first time, I pointed out a woman across the yard and said, "Emily, that is your Grandma." Emily looked in her direction, raised her little fist, shook it and screeched, "Get here, Grandma" and that was the end of a potential relationship with Grandma.
The day Emily came home, there were five other children in our family. Two were teens who immediately began to teach her sign language, baby her and dote on her. Three were younger children who seemed bemused. It took about three months for different members of the family to see Emily as a person, to become personally involved in her well-being. That is an important thing to remember. In the classroom and elsewhere, it takes a while IT TAKES A WHILE for barriers to come down naturally and connections to be made.
The first night was memorable. Emily went to bed when told, in her own double bed in a room next to mine. The people who cared for her last said that she got up in the middle of the night and wandered out of the house sometimes. I wanted her close so I could be alert to her movements. The night seemed uneventful.
In the morning, I went to waken her with a hug and help her adjust to new surroundings, but the bed was empty! We rushed everywhere. The whole neighborhood was alerted by 6:30 a.m. as we went door to door. An hour later, I went back down the stairs, sat on the chair next to her bed in despair. That's when I heard a little rustling. I rushed over, looked under the bed, and there was Emily. She was sleeping in a pretzel position -- her legs folded up into each other, she was leaning across her legs, her head all the way down to the floor, sound asleep. I had no idea anyone could sit like that, let alone sleep in such a position. I tip toed out, rounded up the kids, we knelt around the bed and woke her, singing "You are my sunshine, my only sunshine." Then we all had a laugh of relief. What do you think of Emily now? Does this have anything to do with her retardation? Maybe -- children with Down's syndrome can be very flexible indeed! But didn't you begin to add dimension to Emily the person? For me, that is the critical piece in special education. The student is special, and thus we find the appropriate, caring way to reach this special person, this darling little seven-year-old, folded under the bed.
The sagas surrounding Emily and food are some of my favorites. Oh how that girl loves to eat. Pastas like spaghetti, macaroni and any kind of beans are her very favorite foods. Sometimes I will be typing away, lost in work and miss meal time. She will stand in the doorway to my study, make little noises, and when I turn around, she will say, "Mommy, I love you." We exchange pleasantries, and I go back to typing. In a few moments she will come tap me on the shoulder, make a long sad face and say something like "Poor Emily, she hates beans." I usually stop at that point and make dinner. This is pretty interesting! How does someone with such a low IQ know to joke and tease about things? This is just one of so many little inside jokes she makes - and she does it knowing its funny because she is always grinning with twinkling eyes as she delivers the one liners.
Emily finally learned to button her clothes. Hallelujah! If someone can't button pants they can't wear jeans, and take care of toileting. They can't get dressed in the morning unless they have clothes with no buttons. It gives a person a great sense of well being to be able to self dress. Emily loves to pick out her own clothes. Every night, before going to bed, she gets out the things she is going to wear. It is an activity that consumes at least a half hour of her time. She sorts and picks through her clothes, puts them on a hanger on the door next to her bed. She goes back over the choices, adds the socks she wants and even puts the underwear on the hanger. There are so many things she loves that have buttons, and she really adores wearing jeans. You can imaging just how excited she was when she finally learned to do buttons on shirts - and then even got over the hurdle of buttoning her pants. What a celebration we had. She might as well have won the lottery. And though she was 18, it didn't seem any less special than if she had learned at age four. Perhaps it was so special because we worked to achieve this for so many years. Know what? She still gets excited about it. Do you think Emily is finally finished learning and growing? She doesn't think so. We are still working on getting shoes on the right feet and tying the shoes. One day that set of skills will be something we take for granted.
I never read in a book about how gratifying it is to watch someone make these gains. I did not understand, until Emily, how little it matters if a person takes a long while to learn,or that it can be more pleasure than pain, that helping someone to learn at an individual pace. I read about plateaus, and what the person needs to be able to do to become self sufficient, but I never really got a good picture until Emily became my daughter. You see, Emily is this darling person, who wants to watch the Wizard of Oz every day, and calls our dog TOTO. She sing "Oh, my daughter, Clementine" instead of Oh my darling, and she puts her shoes on the wrong feet. She love pink and likes to wear pink and red together ---- OH MY! --- and she talks on a play phone - and knows its a play phone, but loves to hear herself talk. She can't really read, but she can name the letters while we are driving along in the car, and she is simply wonderful. She is a pain in the neck,
what are you doing that for,
Oh no, not again!
and everyone who ever gets to know EMILY - really know EMILY, just adores her.
Melissa is also developmentally delayed. I adopted her before Emily, and she was four years old. Melissa has Fetal Alcohol Syndrome and when tested, she scores between an IQ of 40 and 55. She is both smarter and more clueless than Emily. She comes close to falling in the moderate range, and her abilities are all over the cognitive map. Emily reminds her to look both ways before crossing the street, because Melissa gets impulse driven and forgets.
Melissa knows she is slow to learn and she hates it a lot. She also compensates for it all day long. She does it in very positive ways. She listens a lot so she can repeat what it going on and knows what is coming next. She likes to help be in charge, and she works for a school district as an aide. She does it for free. Every morning she gets up early, gets ready for school and walks the 1/2 mile to help the kindergarten teacher. When school is out, she works with the after school program. She also helps as an aide in the Girl Scout troop. This is work she loves and at the kindergarten level, she can do everything the children do -- and a little more. It's a funny thing. If Melissa just works at an intuitive level, she is usually good at what she does. If someone stops her, asks her to think about what she is doing, she can't perform as well.
She loves to boss Emily around. She hates to make a mistake. She keeps her room really neat, loves to listen to Country and Western music and while she listens, she watches her lips move in the mirror. It really fascinates her. She if a very good speller - almost a natural talent. She has an excellent sense of direction and never seems lost. In fact the whole family counts on her to help with spelling a word or know which direction to turn. Wow, does she revel in that! She will tell people about her strengths and what she loves to do without hesitating to wonder if they want to know. It never occurs to her that anyone might dislike her, and when students do ugly things, she becomes incensed at their lack of manners rather than acting hurt or considering that they might find something wrong with her.
She is quite hyperactive, but she has learned to keep it under control. She can get very irritable, but she wants to know that is how people are feeling and will work to get her moods under control so no one feels hurt. She loves to dance to exercise tapes, and at first she was really awful and uncoordinated, but now she and Richard Simons really rock the hour away. If you ask her, she will tell you that she thinks she is right there with him. Melissa cannot stay focused on a television program and does not get the plots or see what is coming in movies. Emily, on the other hand gets excited, follows the plot, remembers and identifies with the characters.
Melissa loves to vacuum, but doesn't remember about corners or move furniture. She loves to do dishes, but is not very consistent. It is easy for her to forget the wraparound pieces of a job. One day I got a letter from the school. They wanted Melissa to ask questions when she didn't understand the job. I had to smile. Melissa doesn't know she doesn't know. Emily knows when she is not able to perform a job. She intentionally becomes engrossed in something else and won't even try to listen to directions. That is an interesting difference. Who is the smarter of the two?
Melissa is very proud of being Native American. She does not really remember being in foster homes, though she was in many - in fact never met her natural parents. She understands that she is adopted and makes up stories about our family picking her up at the hospital. She definitely has a sense of history, a personhood, esteem about her heritage. She recognizes things that are Native American and collects things that speak to her heart. She tells me that everyone thinks she is very pretty and she tells them it is because she is Native American.
So, what does it mean to be retarded? It is as different as the children themselves. It suggests limitations, I suppose, but more importantly, I think it is a flashing light that says "caution" . . . person first - real live person with personality who is just as real as you are - who has gifts and strengths - and needs extra support and encouragement to develop all of that uniqueness and specialness packaged in this person.
FAS NOTES ON FAS/FAE AND SECONDARY SYMPTOMS WHICH MAY DEVELOP OVER TIME:
"The one thing we can say about FAS/FAE is that no two youngsters are the same." (Randels) Because of the wide variability of the nature of the impairment, degree of effect, their manifestation and presence of confounding variables (secondary symptoms) there is no "cookbook" approach to working with individuals who are effected. The following are common issues teachers and parents face, followed by strategies that may help.
Tips and Strategies
Meeting Student Needs and Promoting Communication and Personal Growth
Fill in the next three cell rows, using the ideas you gain from experience, from materials in the text and in your web searches. Identify a likely student communication pattern that may hamper learning and then go through the process of defining needs, then finding a solution that allows everyone to get needs met [25 points have been allotted for this activity].
Baldwin, A.N. (1978). A little time. NY: Vikiing
Berube, M. (1996). Life as we know it: A father, a family, and an exceptional child. NY: Pantheon
Blatt, B (1988). Christmas in Purgatory: A photographic essay on mental retardation: Boston: Allyn and Bacon.
Bogdan, R., & Taylor, S.J. (1982). Inside out. Toronto: University of Toronto Press.
Brown, R. (1972). Escape the river. Boston: Houghton-Mifflin.
Buck, P.S. (1950). The child who never grew. NY: John Day Co.
Byars, B. (1970). The summer of the swans. NY: Viking Press.
Carpelas, B. (1971). Bow island. NY: Doubleday.
Conrad, J. (1907) The secret agent. NY: Doubleday.
Craig, E. (1972). P.S.: You're not listening. NY: Richard W. Baron.
Dorris, Michael. (1996). Broken cord. New York: Harper Perennial. A father's story of his adopted son, who has fetal alcohol syndrome. This book received the 1989 National Book Critics Award and the 1989 Christopher Award.
Faulkner, W. (1929). The sound and the fury. NY: Random House.
Harris, George. (1983). Broken ears, wounded hearts. Washington, DC: Gallaudet College Press. A father tells of struggles to help their handicapped child in the face of many difficulties.
Itard, J.M. (1932). The wild boy of Aveyron. NY: Appleton-Century Crofts.
Kaufman, S.Z. (1988). Retarded isn't stupid, Mom. Baltimore: Paul H. Brookes.
Keyes, D. (1966). Flowers for Algernon. NY: Bantam Books.
Menashe, A. (1980). Inner grace. NY: Alfred A. Knopf.
Meyers, R. (1978). Like normal people. NY: McGraw-Hill.
Morris, M.M. (1989). Vanished. NY: Washington Square Press.
Murray, J. B., & Murray, Emily (1975). And say what he is: The life of a special child. Cambridge, MA: MIT Press. The parents of a "special child" with a severe developmental disability tell their experiences and growing recognition of the boy's personality and meaning for their lives.
Perske, R. (1986). Don't stop the music. Nashville: Abingdon Press.
Sacks, O. (1987). The man who mistook his wife for a hat and other clinical tales. NY: Harper and Row.
Sexson, L. (1988). Hope chest. In Margaret of the imperfections. NY: Persea Books.
Spencer, E. (1960). The light in the piazza. NY: Harper Brothers.
Steele, M. (1966). The goblins must go barefoot. NY: Harper Brothers.
Steinbeck, J. (1937). Of mice and men. NY: Viking Press.
Yamada, Jeni E. (1993). Laura. Cambridge, MA: MIT Press. Despite an IQ of about 40, Laura, the subject of the book, made considerable progress in language development. A language specialist's point of view is the central voice. Laura's accomplishments in learning language are interpreted within a modular theory of language.
1. Read one of the suggested books and make a list of ideas you might want to try in your classroom to support youngsters with developmental delays [50 pts].
2. Watch one or more of the following movies: Gideon's Web, Forrest Gump, Nell, What's Eating Gilbert Grape?, House of Cards, Awakening, Of Mice and Men, Dominick and Eugene, Charly or Flowers for Algernon [50 points each]. Review the characterization of mental retardation for another 25 points per movie.
3. Make a historic time line [click for a nice web review], showing the evolution of our care and concern for those with DD/MR.[50 points]
4. Learn about sign language and why it might be helpful in communicating with students who have developmental delays.. Try to find an opportunity to watch someone use this. Learn at least twenty signs. [50 points]
5. Identify three commonly held fallacies about mental retardation [Forestt Gump is full of them!] and then provide three fact based beliefs about people with a cognitive delay. [15 points]
6. Locate and review one of the diagnostic instruments used to evaluate youngsters who may have cognitive disorders. In general, do you expect students to score in a wide range of intellectual abilities, or will more students score way below average intelligence? [25 points]. For an interesting look at a person with Down's try to review a couple of TV programs in the series, "Life Goes On" starring Corky (Chris Burke), a positive role model.
7. What impact does disease have on cognitive abilities? [Examples - measles, HIV, herpes]. Discuss in detail for 50 points. What effect do substances have on cognitive abilities? [Examples, crack, alcohol, thalidomide]. Discuss in detail for 50 points.
8. Some seizure disorders and some forms of autism cause increasing brain damage. Feel free to explore these ideas and write a 500 - 1000 word essay discussing findings. [50 points].
9. There are several very different kinds of syndromes and cluster of symptoms that are included in the broad diagnosis of Developmental Delay or Mental Retardation. Choose one of the following categories and find at least 10 articles or discussions about the characteristics of the condition. Feel free to use materials off the web, as well. Then write a paper of 500-100 words, discussing the challenges these young people have and provide a set of methods or materials that might address strengths and diminish barriers to education. [100 points each]
10. Remember to feel free to develop your own personal response to the material. Allot yourself approximately 25 points per hour for your work.
Video - Educating Peter (HBO-TV)
You should now:
Go back to Characteristics
E-mail J'Anne Ellsworth at Janne.Ellsworth@nau.edu
Course developed by J'Anne
Copyright © 1999
Northern Arizona University