An Open Letter To A Mother and Her Student with Down Syndrome
From Letz Farmer, of Mastery Publications
The following information should prove helpful for anyone with a mentally challenged special needs child. While a good portion of this "open letter" was written originally to a mother with a 13 year Down syndrome student, you will find much information in it which will help you with your children.
When working with Downs syndrome\mentally challenged children, aim for realistic expectations. As you know, students in this category function differently - some higher, and some with more limitations. You know your child best and can decide what is most important and possible for him\her to master. Always expect enough progress, but never to frustrate. Learning a single skill well is more important than many skills inefficiently. Break skills down into smaller steps and focus on one skill at a time until mastery is achieved. Then review, review, review so the skill won't be lost.
Educationally, every person has 2 ages - a chronological age (the age of your physical\birth body) and a mental age (the approximate age of your thoughts and interests). Compared to your chronological age, your mental age can be higher (a very intelligent person), the same as (the average person) or lower.
Most teachers choose to focus on the academics as a means of survival skills of Downs syndrome children. That simply means that focusing and trying to teach practical, self-help skills that the child will need as an adult. Since the majority of educateable Downs children will have mental ages (and interests) approximately between seven and twelve years old as an adult, we work on learning safety skills, personal information, leisure time activities that they can enjoy,
and helping them to function in their family and community.
Many of the suggestions you will read here will not seem to be aimed at academic performance. Yet, they are skills needed to get along in the world. With this information in mind, your child is going to benefit most from short periods of instruction, usually around 15-20 minutes. Then give him a change of pace. This can easily be done by teaching something and then giving him something active to do. He will pay more attention to things he can do or see. That means, he will work better with concrete, touchable things than with listening to something he cannot experience first hand. If you are studying about a library, go there on a field trip. Select books from the young children's section with bright pictures (especially counting books, books that teach warning signs, etc.) Let him always pick out a book that he is interested in learning or hearing. You may have to guide his choices by saying, "Would you like a book about bears or a book about frogs?" Then let him choose.
Here are some educational characteristics to remember when teaching your God-given son:
#S - slower rate of learning- while he will learn it will be at a slower pace. Remember that he will not have to know everything you do. His adult life will not be as demanding or as complicated as yours. He will also seem to learn in "spurts" and then possibly "plateau". Repetition is the name of the game. Therefore, to avoid boredom (and burnout on your part from doing the "same stuff" over and over), vary your teaching with games.
#P - poor language ability - you have already seen that it is hard for him to express himself and understand what others are asking him to do.
#E - encounters difficulty with abstractions - it is difficult for him to understand what he cannot see, touch, or experience. Therefore, always make his experiences as real as possible. Use many manipulatives and concrete, touchable items when teaching him. In math, God gave him 10 fingers - let him use them.
#C-creativity and originality abilities are poor; he may want to continue doing the same task and resist change - that's why you must present him with choices. He will seldom think of new things to do on his own.
#I- incidental learning fails to be an effective mode of learning - just overhearing a conversation about "how Jane fell down the stairs because she tripped over her son's toy" will not teach or motivate him not to leave a toy on the stairs. The obvious must be stresses often verbally or experientially to help them see cause and effect (actions and their consequences). Otherwise, he may totally miss the inter-relationships that you and I understand easily.
#A- ability to transfer and generalize are poor; attention span is short - this is an extreme example, but points out a wrong generalization. A child learned that electricity can kill you. He got shocked when walking across the carpet, and his mother told him that was static electricity. So he generalized that he should never walk on a carpet because he could die. Misunderstandings can occur easily.
#L- lowered tolerance for frustration and failure; I don't have to elaborate on this one. You've seen it happen. Structure all of his tasks so they are brief, uncomplicated and have only one new element at a time. Focus on the old and one new element and master this well before adding something else.
GROSS MOTOR SKILLS
Balance and coordination fall into this category. Children with Down syndrome are not known for having particularly good skills in this area. Their physical build naturally limits their success in this area. Therefore, you may become very athletic before you are done with this category. These can be looked upon as good exercises!
If your child doesn't like to hold a pencil, you have several choices that may be more acceptable in the beginning. Get a white marker board and use the colorful markers. The markers are easier to handle and the colors are motivating. Then work your way down to fat crayons and fat pencils\pens. Because of their chubby fingers, don't force a Down's child to use small regular pencils and pens. However, if he chooses the smaller pens\pencils, allow it.
He should help you in the kitchen -washing or drying dishes, putting them away, stirring mixes, making sandwiches (spreading peanut better all the way to the edge of the bread.) etc. These things will make him feel needed and important to the family. Also, perhaps you live in an area where he could get small jobs with the neighbors shoveling snow. This would make him also feel needed and appreciated, something every person needs.
The most important thing he will read will be safety signs. He needs to know to: STOP, HIGH VOLTAGE, DO NOT ENTER, ENTRANCE, EXIT, GENTLEMAN\ BOYS\MEN (for rest rooms), DANGER\KEEP OUT, NO SWIMMING, BEWARE OF DOG, ON\OFF, etc. The old Weekly Reader had a great workbook which had each of these (and many more) with the word and a picture of what it would look like in a real life setting. You can find books in the children's section of the library which teach these kinds of signs. He also needs to know which rest room to use by the international picture signs for "man". Teach him Mr. Yuck, (a smiley face with it's tongue sticking out) which means "poison". He needs to stay away from those.
After you've taught him safety signs, then work on letter recognition and reading skills. He should be able to learn to recognize letters, spell his name, copy letters and words and even spell some as he learns to read simple words and books. Make your goals realistic for him, however, eliminating frustration for both of you.
AND PERSONAL SKILLS
These skills are the most important. His academic skills will not be needed throughout his life near as much as these. He must be able to groom himself, be responsible for simple tasks, get along with others, etc., Here are some skills I feel are important for him to master. You will know his situation better and know what you feel he should know in addition to, or instead of these.
#1- Self care should include dressing and undressing himself (along with buttoning, zipping, and getting into a coat by himself), bathing himself, washing his own hair (with tear free shampoo), combing his hair, applying deodorant\body powder, etc. He should learn to put the right shoes on the right feet and tie them, if possible. If his coordination is not good enough for tooth brushing, buy him an electric toothbrush so he can be self-sufficient and have a better chance of getting the job done well. The cost of one or two fillings would pay for an electric toothbrush, plus they are fun to use. He will brush more often.
#2- Clothes selection - Work on clothes selection according to the general temperature. Discuss that the temperature is below freezing outside. Freezing is very cold. Show him the thermometer. Have him stick his hand outside. Teach him that when the red mark is down there, you must dress warmly. Will you wear shorts? Will you need a coat? He can cut pictures out of an advertisement of clothes that would be good in different seasons. Obviously, this is a year round teaching program.
#3-Then, if you wish, teach him that stripes don't go with polka dots. Let him combine different clothes on the bed. Put a stuffed animal on the bed (or a picture of his head), and put clothes below. He must put the shirt above the pants. Pick out a belt. You can even stick socks out the pants legs. See which clothes go together best. You can discuss (and name) colors. Help him choose his own clothes according to temperature and event.(you don't wear swim shorts to church).
#4- Give him chores around the house which he can do. Let him practice sweeping, making his bed, stripping and changing his bed sheets and pillow case, cleaning the sink and tub with cleanser, washing plastic dishes and cups, loading the dishwasher, sorting and folding clothes, etc. Have him match socks in the beginning and learn to fold towels, etc. And don't feel that these are "woman's work" - consider it "bachelor training".
Anything he learns in self-sufficiency not only helps you now, but will benefit him later on with all other care givers. These are job skills for adult life that he will need to know. He can have a chore chart and get paid allowance. Then he can learn to handle a limited amount to money, how to recognize change and it's worth, count simple change, how to save, read prices on items in the store (this costs $4.95. You have $6.00. Do you have enough money to buy it?) Don't pay him large amounts for his chores, unless you require him to make large purchases out of his money (like clothing). He probably doesn't really require much spending money, except for gum and incidentals, and having too much money will make him think that he can but anything he wants, whether he needs it or not. Money does not grow on trees and learning to handle even a small amount is difficult - for everybody.
#5-Read a calendar and a chart. Teach him the days of the week; times he eats, gets up, (his routine) etc., events that happen regularly, like visiting his Aunt, going to church, eating out, whatever; special events like holidays, birthdays (he should learn the date of his own), etc. Let him record the weather, drawing a sun on sunny days, rain drops, etc. He should also learn to count the days to a special event.
Finally, he needs to learn\find some activities which help him spend his leisure time. Very few children with Downs syndrome learn to read at a sufficiently independent level where it could be called "pleasurable". Try comic books, picture books, magazines with lots of pictures, etc.
Since they often have difficulty distinguishing between fact and make believe, be selective in his TV programs, videos tapes and movies. He will not necessarily understand that violence is wrong if he sees the strong, handsome hero always winning. He does need your wisdom and guidance in this area. Finding leisure time activities which are self-directed and good for the child can be difficult because of short attention spans.
I hope this gives you many ideas for working with Timothy. If you do all of these things with him, he will be a much happier person because he will have experience success.
In choosing books to read to him, may I make the following suggestion. You told me that you aren't sure what he was exposed to in his past school, but you are reading 6th grade books to him. I suggest you concentrate on materials which are more in line with his mental age (kindergarten - first grade). He has probably not received even 1st grade information in his last school. The lower the level you begin him on, the more chance you have of filling in gaps in his learning.
The reason for this makes sense. In the 6th grade book, you may be reading to him about photosynthesis. Does he understand that a plant needs food like we do? That it needs water and sunshine to make it's own special food? The plants make food even when the sun doesn't shine? That not all plants can live in direct sun light? That not all plants need a lot of water? It would be more important for him to learn to care for a plant (check the soil moisture with his finger, water it from the bottom, use occasional fertilizer sticks, keep it away from cold drafts, etc.) than try to learn fancy words which he will never use.
You will find yourself constantly needing to set (change) you priorities for Tim. First things must come first. He must learn "the basics" before there is anything to build upon. Please keep your priorities reasonable for him. Otherwise, both of you will become very frustrated. Just remember that though his body is 13 years old, his interests and knowledge are not. Your time will be best spent filling in the gaps as much as possible, beginning in the self-help areas and working toward the academics. Encourage him to become all he can be and enjoy him along the way.
Sources - Bibliography
Kolstoe, Oliver P.; Teaching Educable Mentally Retarded Children; Holt, Rinehart & Winston, Inc.; 1970
Sanford, Anne and Zelman, Janet; LAP, The Learning Accomplishment Profile, Revised Edition,
Chapel Hill Training - Outreach; Kaplan Press; 1981