An Open Letter to Parents of Downs Syndrome Children

Letz Farmer Mastery Publications 90 Hillside Lane Arden, NC 28704-9709 Phone/Fax: (828) 684-0429

Augmented version reprinted with the permission of the author. Previously published as An Open Letter to a Mother and Her Student with Down Syndrome in Nathhan News (National Challenged Homeschoolers Associated Network) Spring 1995 Vol. 3 No. 3 (Down Syndrome Issue), p. 11-4. P.O. Box 39 Porthill, ID 83853 (208) 267-6246

When working with Downs syndrome/mentally challenged children, aim for realistic expectations. As you know, Downs students function differently — some with much higher potential, 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 to encourage 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 (average intelligence), or lower. Downs syndrome children's mental ages are usually lower than what is considered average from a typical person.

Mental age is a very important concept in deciding what is necessary for a child to learn. Not knowing Timothy personally, I can only guess at his mental age. If I knew his IQ, I would multiply his chronological age (13 yrs.) by his IQ written as a decimal. For this example, let's say his IQ is 50 (which is in the middle range). I would multiply 13 x .50 and come up with 6.5. This starting point of 6.5 means that his mental age is approximately 6½ years old. Simply put, this means that his  abilities and interests would be more in line with a 6 year old than with his bodily age of 13. He will act more like a 6 year old, reason more like a 6 year old, and understand things like a 6 year old. He would not have the ability to comprehend and reason like a 13 year old, so materials aimed at a 13 year old would have very little meaning for him. Knowing his mental age, therefore, gives you a guideline for choosing more appropriate instructional materials according to his interests and abilities. As he grows older, this "mental age" also increases because people never stop learning.

As with any population of individuals, it is difficult to make a blanket statement that applies correctly to every Downs child. Many typical Downs children will have mental ages (and interests) approximately between seven and twelve years old as an adult, but not all (some will be higher and some will be lower). Obviously, a 7 year old's abilities will be less than the teen age reasoning abilities of a 12 year old. For these children, stress learning safety skills, personal information, leisure time activities that they can enjoy, and job related/work skills training which encourages them to function within their family and community. For higher functioning children, stress academics which lead to better job placements as adults.

In years past, Downs children were labeled as "educable" or "trainable", according to their IQs. These labels were restrictive and unfair to the families and children alike. Today, these labels have been removed, allowing many Downs children to surpass expectations and break the strangle-hold of stereotypes. Therefore, never limit your child by low expectations, but expose him to many realistic situations where he will experience success.

We teachers choose to focus on the academics as a means of self-help skills for Downs syndrome children. That simply means that we focus and try to teach practical skills that the child would need as an adult. We focus on important life skills, not the fluff which will never be needed. Possibly, many of these suggestions will not seem to be aimed at academic performance. Yet, they are the basic skills Tim will need to get along in the world. Your goals for him must be more rounded than plain old straight academics. I believe these will be the most helpful to you in preparing him for adulthood.

With this information in mind, Timothy is going to benefit most from short periods of instruction, usually around 15-20 minutes. Then give him a change of pace. This can be done easily 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.

Some educational characteristics to remember when teaching your God-given son:

• S — slower rate of learning — while he will learn, it is usually less and at a slower pace — Remember that he will not have to know everything you do. His adult life probably will not be as demanding or complicated as yours. He will also seem to learn in "spurts" and then level off for a while. Capitalize on the "surges", but don't lose ground during the "plateau" periods. 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 mentioned in your letter that you have already seen that it is hard for him to express himself and understand what others are asking him to do. Simplify directions by limiting how many steps he must take to accomplish a task. Instead of giving him three tasks to do orally, give him a check sheet with pictures. For example, you want him to get dressed before he eats breakfast and then brush his teeth. In establishing this routine, have a sheet for the back of his door (or some other place that is his) and put three pictures on it: a boy getting dressed, a box top from his favorite cereal, and a picture of a toothbrush. You may number them (1, 2, 3) or just arrange them from top to bottom. He will have this to refer back to, but will soon learn the routine and another can take its place. Encourage his oral language, presenting him often with opportunities of telling you sequences back (tell me what we did today, what was your favorite ___?, how do we get to the library?, etc.)
• E — encounters difficulty with abstractions — it is difficult for him to understand what he cannot see, touch, of 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 tends to want to continue doing the same task and resists change — that's why you must present him with choices. Thinking of new constructive things to do on his own may or may not be something he does well.
• 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 Tim not to leave a toy on the stairs. The obvious must be stressed often verbally or experientially to help them see cause and effect (actions and their consequences). Otherwise, he may totally miss the interrelationships that you and I understand easily.
• A — ability to transfer and generalize are usually 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 from the electricity. Misunderstandings easily can occur.
• 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 previously mastered skill and add one new element. When this is mastered, add another element. For example, teach the sound of the letter B first, then add the name. If you intend to use phonics for reading instruction, he needs to know the letter's sound, not its name. Always teach what he needs to know and add other elements that are not very important later.

Not knowing him personally, I may suggest things which he has already mastered. That is fine. The skills are listed according to difficulty levels, with the easiest being first and the harder skills following. Ignore the skills he has mastered and start on the next skill. And don't think that because these may not be exactly "reading, writing, and 'rithmetic" that they aren't school. They are the most important skills he will ever tackle!

Gross Motor Skills

• While standing still, he kicks a ball placed in front of him.
• Can catch a 5" ball (or larger) with you throwing the ball from about 3 feet away.
• Should be thrown chest high. He will probably use stiff arms to catch it.
• Stands on 1 foot for 1 second, increasing to 5 seconds (should be done with either foot).
• Can walk a straight line about 10 feet. You may place a strip of masking tape on the ground and have him try to keep on that.
• Walks on tiptoes 10 feet.
• Throws a 2" (tennis ball) ball overhand, 5 feet. He should be able to throw it close enough to you that you can catch it. Then work on extending the distance.
• Can hop on 1 foot, at least 2 hops, without falling. Repeat. Work on both right and left foot.
• Climbs ladders of playground equipment.
• Catches a bounced ball.
• Touches toes with both hands.
• Stands on each foot alternately, at least 8 seconds. Obviously, you would build up to the 8 seconds. Then work toward doing it with his eyes closed.
• Swings each leg separately back and forth (5 full swings).
• Walks up and kicks a ball (soccer ball or some other 9" ball).
• Bounces a ball with one hand and catches it with 2 hands. This develops eye-hand coordination.
• Standing broad jumps a distance, beginning with jumping over a piece of 8½" x 11" paper and then trying to go farther. You may mark his progress with masking tape.

Fine Motor Skills

• Pick up small objects with tongs. You can use small game pieces and put them in a shoe box. Then work toward putting them into a jar (has a smaller opening and requires more control).
• Cutting paper with scissors. You can make collages for art, etc., which have no particular shape. Then have him begin to cut on a thick, straight line. Finally, work on cutting out simple shapes.
• Fold and creasing paper, both horizontally and vertically. You can have him make little books, draw or cut out pictures. Or he can make a booklet using stencils. Make an "about me" booklet with photos.
• Make clay objects. Make "balls", "snakes", "flat cakes", "coiled cups", whatever. Clay is an excellent tool for encouraging hand muscles to be used. You can use different colors of clay for color and shape recognition, too.
• Get him a wind-up clock to encourage the winding movement. Then you can use it for telling time (o'clocks and thirty minutes past) or setting an alarm for getting up and dressed for school.
• Simple puzzles — You can buy them, or make your own out of a picture he likes and mounting it on a cardboard box. Then cut it into big pieces so that he can maneuver them better.
• Crumple paper into a ball with one hand. He can make Christmas tree ornaments out of crumpled aluminum foil.
• Tie knots — These can be around a pencil or on the Christmas ornaments. Work toward tying his shoes. If this isn't possible, loafers or velcro are available. You are working toward as much independence as possible.
• Scrapes a carrot with a food scraper. He should help you in the kitchen — washing or drying dishes, putting them away, stirring mixes, making sandwiches (spreading the peanut butter all the way to the edge of the bread), etc. These things will make him feel needed and important to the family. Also, 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 desires. At the beginning he may balk at the "work", but later he will find the joy of accomplishment.

Pre-writing

At first, he should imitate what you draw for him. You will begin with single strokes and progress towards combining them into letters. Printing capitals (see Happy Handwriting) should be looked on as necessary, cursive is not.

If he never learns to write anything else, make sure he can legibly print his first and last name. Begin by letting him copy your written vertical line on the white marker board. You don't want to move to lined paper for a long time. Unlined paper will be fine if you want to keep a record of his progress, but don't use lined paper until he can write all of his alphabet on the board. Have him write the stroke as a downstroke — from top to bottom.

• Then move to copying a horizontal line. With these 2 strokes, he can write the capital letters of E, F, H, I, L, T.
• Imitate a "V" stroke, which requires the child to make 2 slanting strokes that join in 1 point at the bottom. With the 2 slant strokes mastered, TIM will now be able to write his name. He will also be able to write the capital letters A, K, M, N, V, W, X, Y, Z.
• The final stroke is a circular one. With this stroke mastered, he can learn the rest of the alphabet — B, C, D, G, J, O, P, Q, R, S, U.

He can do these strokes with finger painting, paint brushes, etc. Make a big deal out of his art work. Have him hold his paper in place with one hand while writing. Don't let him slump in his seat or hold the pencil incorrectly.

Work on drawing a stick person, beginning with 2 body parts. I have found that working on the face first is very good. You can point out the position of the body parts ("Where should I put the eyes? Does the mouth go above or below the eyes? Etc.) You can work on naming body parts and their function, "Point to your nose. What does your nose do?" "Where are your eyes? How many eyes do you have? What do your eyes help you do? How can you take care of them? How do you wash them?"

Then work on drawing a simple house. The vertical lines make the walls and windows and chimney sides, the horizontal lines make the top of the door and windows and chimney top, and the slant lines make the roof. Then make swirly smoke (circular strokes) coming out of the chimney.

After he has learned to print and read his first and last name, then you can begin on the numerals 1-10. His name is more important that any number he learns, other than his phone number.

Math

At first, his math skills should be personal information memorized. While he may be able to learn to add and subtract later, he must first learn to count, read numbers, and write numbers. See the "Real Life Math" article for suggested activities. He will not master all of these, but work on those he can.

You also may wish to teach some simple measuring skills. These would be most appropriate for cooking (following simple recipes) and learning things like making a sandwich, scrambling an egg (kitchen safety around the stove/oven needs to be taught), heating water in the microwave to make instant oatmeal (this requires putting in the time, the right sequence for operating your microwave, and that hot water burns), etc. You may also wish to teach measuring by inches with rulers and tape measures.

Whether or not he ever learns to count or recognize numbers, he should learn the following personal information: his phone number; address; birth date; age (and that it changes); city and state; how to dial a telephone (calling home or a relative), and use the "operator" or 911 for an emergency; how to use a pay phone (which coins to use, using a touch tone phone key pad, etc.); etc. All of these, along with the parent's names (John Brown, not just Daddy or John), are vital if the child should ever get lost or need help. We had to learn these skills at one time and so will he.

Are addition, subtraction and other computational skills necessary? That depends on your child. Will he need these skills to function in his adult life? Will he go out into the world and hold a job? Will the job require these skills daily? If not, then why waste time on these skills. Focus on skills which will be needed every day. If you do choose to work math on paper, please use lots of manipulatives to give the math meaning. There are three stages of learning which all people go through. The first stage is called concrete. In this stage, children need to touch objects and move them around (manipulate) to get meaning. This is where most young Downs children stay — often for a very long time. Some may reach the representational stage, where they understand that a squiggly numeral "2" means two things. A few will reach true abstract thinking.

Reading

The most important things he will ever read will be safety signs. He needs to know: STOP, HIGH VOLTAGE, DO NOT ENTER, ENTRANCE, EXIT, GENTLEMEN/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. Go to the driver's license agency and get pictures of traffic signs and make them into a flash card game. You can find books in the children's section of the library which teach these kind 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 its 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 (see F.L.A.G.S.). He should be able to learn to recognize letters, spell his name, copy letters (see Happy Handwriting) 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 the both of you. If he is higher functioning, be sure to encourage as many academics as he is capable of learning.

Self-Help & 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.

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 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.

Clothes selection — Work on clothes selection according to a 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 clothing advertisement that would be appropriate in different seasons. Obviously, this is a year round teaching program.

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 fins to church).

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 an allowance. Then he can learn to handle a limited amount of money, how to recognize change and its 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 buy 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.

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 can also count the days up to special events.

Finally, he needs to learn/find some activities which help him spend his leisure time. Some Downs children learn to read at a sufficiently independent level where it would be "pleasurable;" many, however, do not. They do, however, enjoy picture books, comics, magazines with lots of pictures, etc. Whatever his ability, strive to teach him, never limiting his potential. Never say, "Never."

Since many Downs children have difficulty distinguishing between fact and  make believe, be selective in his TV programs, video 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 Timothy may be very difficult because his attention span may be short.

I hope this gives you many ideas for working with Timothy. He will be a much happier person when he has experienced success. God will give you wisdom in working with him and molding him into the person God created him to be. If God didn't think you could raise and instruct your son, He would have never given you the gift of a Downs child.

In choosing books to read to him, may I make the following suggestions. You told me that you aren't sure what he was exposed to in his past school, but you are reading 6^th grade books to him. May I make a suggestion? I suggest you concentrate on materials which are more in line with his mental age (kindergarten and 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 6^th 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 its own special food? That plants make food even when the sun doesn't shine? That not all plants can live in direct sunlight? That not all plants need a lot of water? It would be more important for him to learn how 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 in everyday conversation.

You will find yourself constantly needing to set (and change) your 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 although 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.

All of the above are pre-vocational level skills. If he can master these skills, he may have an opportunity to work in a sheltered workshop and earn some money. Someday, you may decide to let him live in a group home where he can be a bit more independent and responsible. In the home, he would be expected to have the attitude of "pulling his fair share" of the work and do many of the above mentioned self-help tasks. Many Downs adults take good advantage of this living accommodation alternative. I only mention these as possibilities, to let you know that they are available.

I sincerely hope these ideas prove helpful to you and that your home schooling experience is a pleasant one. God bless you in your endeavors!

Bibliography

1. Kolstoe, Oliver P.; Teaching Educable Mentally Retarded Children; Holt, Rinehart & Winston, Inc.; 1970
2. Sanford, Anne and Zelman, Janet; LAP, The Learning Accomplishment Profile, Revised Edition, Chapel Hill Training-Outreach; Kaplan Press; 1981