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by Millie Smith

The power of a routine is the precise planning of what the student will do and how he will do it in on each step of the routine. Many students are able to learn new skills and participate at higher levels when this strategy is used because they need the following things that routines provide.

Predictability:"I know what is going to happen from start to finish."

Consistency: "I know what I am supposed to do."

Anticipation: "When you do that, I know to get ready for."

Practice: "I remember what I did Last time and I can try to do more this time."

Students with severe disabilities rarely do every step of a routine independently, but they are afforded the dignity of doing everything that they are cognitively and physically capable of doing.

 

by Kate Moss, TSBVI Deaf-Blind Outreach Family Training Specialist and Linda Hagood, TSBVI Deaf-Blind Outreach Education Specialist

Children with deaf-blindness have unique educational needs. Although they are deaf the adaptations needed for their learning style will differ from the child who only has deafness. Although they are blind the adaptations needed for their learning style will differ from the child who only has blindness.

In order to understand what this means we can examine a variety of issues that might be addressed for three different children with disabilities in a regular preschool class: one born with a severe hearing loss, one born with visual impairment resulting in acuities of 20/600, and one born with a combined severe hearing loss and visual impairment resulting in acuities of 20/600.

It is important to note these are not actual children and that instruction for any child with a disability must accommodate his/her individual needs. Our intent is to demonstrate some of the basic differences in educational approaches to address each of these disabilities. It is also important to note that the additional disabilities experienced by the majority of children with deaf-blindness further complicates program development.

Imagine each child is in a preschool classroom structured around play centers such as the House Center, Art Center, Block Center, Library Center, and Science Center. There is a morning welcome, a story time, and films which occur in a large group. Small group activities are conducted around a theme or unit such as Families, Animals, etc. The play centers have materials which require some explanation or direction from an adult. For example, the teacher must demonstrate or have examples to help the children make animal puppets from socks. Recess occurs in a large group and the child may choose an area of recreational activity, i.e., swings, slide, tricycles, wagons, or the sandbox. All the children eat together in the cafeteria. Using the example of a unit on farm animals, we can look at the difference in teaching strategies and content modifications that might be made for each of these three children.

Teaching Strategies and Content Modifications

The Child with Hearing Impairment

Most of the same teaching strategies used to instruct children who do not have a disability would be appropriate for the child with a hearing impairment. This child will learn from what he sees and what he does (action). He learns a great deal incidentally by watching others. Instruction in a large group can be very beneficial for this child because he can prepare for his response while waiting for his turn.

Adaptations for teaching communication and auditory training goals include small group or individual instruction. Real experiences should be the basis of units that are taught, however this child would probably be able to relate story books, role play, and discussion to the real experience. The teacher may also rely on print, pictures, gestures, and movements to support or give instruction.

Issues for the child with hearing impairment include difficulty with English language structure which can effect the development of reading and critical thinking skills. Special attention should be given to teaching such structures as "why", past tense verbs, complex sentences, etc. He may also need additional practice in using language to explain and make predictions such as, "Why didn't the brick house fall down?" or "What will happen if you don't take a nap?"

The child with hearing impairment would probably have an experiential base about animals before he began to study the unit on farm animals. He might have a pet at home, has probably seen birds and squirrels in his yard, or has watched animal stories on television. He will understand stories about farm animals if it is signed and he can see the pictures. He might play with plastic farm animals and farm figures in the sandbox. He might color pictures of farm animals in the Art Center and sort zoo and farm animal figures in the Science Center. At recess he could pretend to be a horse that pulls a wagon outside. During auditory training he might try to discriminate between the sound a pig and a cow makes or point to the appropriate picture of each animal in the Old MacDonald song. Speech or speechreading might focus around the names of farm animals. At the end of the week his class may visit a working farm which would build on his week-long study of farm animals.

The Child with Visual Impairment

Some of the same instruction strategies could be used with the child who has a visual impairment. However, his learning will take place primarily through his own actions/experiences and information he receives auditorily. He can learn many things through group instruction with minimal support. Unlike the child with hearing impairment, this child will need more instruction that occurs through real experience. Imaginary play may be difficult for him, reducing the effectiveness of role play as an instructional tool. Language instruction for this child should be paired with ongoing activities. The use of pictures and print would be of limited value.

Using the example of a unit on farm animals, the child with visual impairments would likely have less knowledge of animals to begin with than the child who is deaf. He would not have seen the television programs or watched animals playing in his yard. He might have a pet and perhaps has some knowledge about caring for an animal. This unit may be most meaningful for him if the visit to the farm was scheduled before beginning classroom instruction.

Although he might be able to sort the animals in the Science Center using visual cues of color and shape, he may or may not relate them to the real animals. A more appropriate activity might be telling a classmate or teacher whether the animal lives in the zoo or on the farm after they name the animal or make the animal sound. Then he could put the animal in the proper area. Instead of coloring animal pictures he might use modeling clay to make an animal figure or scraps of fur to make tactile pictures. He could interact with other children in the wagon while working on the concepts of "left", "right", "fast", "slow", "stop" and "go" pretending to drive the horse. These concepts might be taught and practiced individually within orientation and mobility training. New textures can be introduced at the sandtable. Working on listening skills during story time may also be somewhat effective, especially after the child visited the farm. He could be encouraged to explore his environment to search out the sound of a mooing cow.

The Child with Deaf-Blindness

The child with deaf-blindness requires considerable modifications to teaching content and different teaching strategies. He cannot learn from what he sees like the deaf child does. He can not learn from listening like the blind child does. He learns only by what he does. This means that no learning is taking place for him while waiting for others to take their turn. For this reason small group or individual instruction becomes more critical. Large group instruction is only valuable if he can be consistently active (e.g. playground activities).

This child also may have problems experiencing new things. Encountering the world without benefit of vision and hearing requires a great deal of trust. Bonding with the child is critical for the instructor, therefore it is important to evaluate the child's response to an individual when determining who will be the primary provider of instruction. He may be withdrawn or passive, content to stay in one place and let the world come to him. Remember for him he will learn only through doing.

Things often magically appear and disappear before him. Cause and effect are elusive. People do things to him but not necessarily with him. There is little explanation of events before they occur. For this reason it is important to make interactions balanced (my turn, your turn) to encourage him to be responsive. Instruction that is always directive requires no response from him.

Safety is also of critical importance to this child. Not only must the environment be made safe for him, but he must feel safe in order to move around on his own. If he does not, he is likely to stay glued to one spot resisting interaction with his environment and the people in it. Instruction and support from an orientation and mobility specialist is very important. She may need to help staff evaluate the environment for hazards and develop travel routes for the child to use. She may work directly with him to orient him to that environment, and provide training on travel techniques and travel equipment.

The curriculum focus for the child with deaf-blindness will differ from that of the child with only a single sensory impairment. The deaf education focus may be primarily on using language to code existing concepts. The curriculum focus for a child with visual impairment may be more oriented toward building concepts and experiences which can provide a firm cognitive foundation for language. The curriculum focus for a child with deaf-blindness should be on bonding and developing interactions and routines for expanding the frequency and functions of communication. This child will not learn about objects or actions incidentally. He cannot tie together the fragmented input he receives without interpretation and instruction from others. He must be taught to use and accept this instruction.

Developing a communication foundation for learning is a priority. Typically communication is tactile in nature using signals, objects, gestures and later on sign language or tactile symbols or some combination of forms. Language is developed through the use of routines, calendar systems, discussion boxes, etc. Because of the degree of vision impairment and his inexperience with real events in the world, the use of print, pictures, and demonstration will be of little or no value to this child. He may not understand pretend or role-play as an event that relates to some real experience. The child with deaf-blindness may first need to be moved co-actively through an activity to know what is expected of him. After he understands what is expected, this support would be faded to avoid building prompt dependence.

Because concepts develop so slowly for this child, there should be a focus on making learning functional. Great care needs to be given to developing clear goals and objectives for this child. Typically these objectives need to be limited in number since this child will need many opportunities to practice skills before he is able to generalize the concept to other situations.

This child would have a very limited knowledge of animals because he can not observe them or hear them. He has not seen television shows about animals. He may have a pet at home, but might only encounter it if the pet is placed in his lap or brought to him. His experience with that animal would be primarily tactile. He may not be able to distinguish his long-hair cat from his long-hair dog if he only pets the animal. Or he may experience the animal as a thing that licks or smells a certain way.For this reason vocabulary (concepts) which are taught should be more broad in nature. Careful consideration should be given to concepts which can be applied to other units throughout the year and across a variety of settings.

For example, the farm animal unit might focus on action concepts such as feed, pat, rub, pull, walk, open, close, pour. These same concepts should be applied to other units or in different environments. For example, "pull the leaf", "pull the wagon", "pull the drawer", "pull off the lid" and so forth. This child may have a "pull" unit throughout the year that is embedded in the various units the other students will study. If this child has a pet at home, another approach to instruction could focus on things this child can learn to do with his pet. For example, he might learn to feed his pet, walk it, pet it, brush it, etc. Units could be developed around things that can be fed, walked, brushed, etc.

The child with deaf-blindness could meaningfully participate in the play centers but his goals would be different from the other children. For example, while the other children pretend to be animals, the child could "rub" or "pat" them as if he was the farmer they come to for attention. In the Art Center he could "pat" and "pull" modeling clay to help a classmate form an animal shape. At recess he could direct the other children to "pull" him in the wagon or practice pulling them with help from a classmate. The teacher for the hearing impaired or other staff could help him to learn to vocalize to get the other children's attention before he signs "stop" or "go". In the Science Center he could use his vision to find objects in the sandbox. Then he could "open" and "close" the door to the toy barn, "pour" sand on the toy animals, "pull" the shovel out of the sand, etc.

When he visits the farm with the other children he would experience the differing size, textures and smells of the animals, but his goal might be to use his cane or sighted-guide technique in unfamiliar environments. If field trips are regular events, he might also learn a field trip routine. Unless he actually lives on a farm, learning about the animals and what they do will be of little value to him even though it may be a very pleasurable event.

Obviously this child will require a great deal of individual support. Initially this may need to be provided by the teaching staff. However, if good interaction and communication skills are modeled for the other students and an effort is made to draw them into successful play situations together, they may be able to provide instructional support for some activities.

Conclusion

The educational needs of a child with deaf-blindness are unique. Teachers without specific training in the area of deaf-blindness may be unable to appropriately program to meet these needs without specialized training and support. Few school districts have even one teacher with this kind of specialized knowledge. In addressing the child's education from birth - 21 a large number of teachers and support staff as well as community members and human service staff must work with the child. However, if his unique learning style is not addressed, the child with deaf-blindness is at risk for being excluded from the classroom, the family and the community.

This article originally appeared in the January 1995 edition of P. S. NEWS!!! published by the Texas School for the Blind & Visually Impaired Deaf-Blind Project.

By Kate Moss, Education Specialist, Texas Deafblind Outreach and Holly Cooper, Technology Specialist, TSBVI Visually Impaired Outreach

For many blind and deafblind children, participation in paper and pencil types of tasks that are part of typical classroom instruction can be accomplished with a number of modifications. Other children with blindness or deafblindness, because of their additional language or cognitive challenges, do not benefit at all from paper and pencil types of activities. Having opportunities to learn in a way that includes the use of other sensory channels such as taste, touch, and smell is not only more motivating, but often more beneficial. All children with blindness and deafblindness benefit greatly from experiential learning situations, those that involve activities where the child can learn by doing. Food preparation is a learning activity that is a great idea for most classrooms and grade levels serving children with blindness and deafblindness.

A Great Recipe for Instruction

It is not hard to think of ways to infuse a variety of skills into cooking activities. Here are just a few.

Language, Concept Development, and Communication Skills

Food is a great topic of conversation for most of us. Children with blindness and deafblindness can naturally use objects to request or offer. Learning the names of favorite food items is highly motivating and very functional. Cooking is a natural way to help the child learn language and concepts about different textures (smooth, hard, chewy), temperatures (hot, cold, warm, cool), flavors and odors (sweet, sour, salty, spicy, burnt). The student can learn to identify and categorize items based on these qualities as they learn through participation in the cooking activity.

Hearing, Vision, Fine and Gross Motor Skills Development

Developing hearing, vision, fine and gross motor skills are critical to all children. Cooking is a wonderful way to work on all these skills within a single activity. Children can walk or push a cart through stores to shop. The child must use vision to look for specific items, orient to cooking materials, and read a recipe. Learning to listen is important for all students with visual impairments. Cooking activities provide many opportunities to practice listening skills such as learning to listen for the cashier to ask for money or to listen to a recipe on tape. The students can exercise muscles to reach and lift, clean a table, or wash dishes. Fine motor skills are needed to open and close, to stir, knead, cut and shape, to locate and put away materials, and to clean up.

Orientation and Mobility Skills

Whether or not a child is able to travel to a store to buy supplies before completing a cooking activity, it is easy to infuse O&M skills into routines. Learning skills related to organizing the work space, learning positions of ingredients relative to bowls and blenders is a great way to work on positional concepts. Navigating the room to carry items to the refrigerator, stove, or sink is a natural way to learn to how to follow a route or navigate around obstacles.

Literacy and Math Skills

In the area of math you can learn to count and measure, identify money, count and make change. You can talk about fractions, weights, and sizes. You can learn to read a recipe using words, Braille, or pictures. You can write about the cooking activity you have completed and print a sign to advertise the sale of food items you have made. You can look for particular brands of food in the grocery store or read the signs to help you find the aisle where a specific product is located.

Instructional Routines

Instructional routines are one educational strategy to use with students who have additional disabilities or deafblindness. A clearly defined activity helps build memory, provides a structure for teaching concepts and skills, and helps the child develop an understanding of whole events involving a sequence of steps enabling him/her to participate in the event. Cooking is a perfect activity to develop into an instructional routine. Children may participate in every step of the cooking routine or assist with one or two steps. Cooking may be done as a group activity routine or as an independent activity. A student can complete cooking routines that make food "from scratch" or use frozen or precooked items, depending on his/her skill and interest level. Cooking is also an important independent living skill that many individuals will need or use in their adult lives.

Modifications

One key to making a cooking activity work for a student with blindness or deafblindness is finding the appropriate modifications. These include recipes on Braille, in large print, picture or tactual symbols, or audio cassette. Using Braille labels, rubber bands or tactual symbols to label products makes them easier for the individual to identify. Appropriate technology in the form of switches, note taking devices, and so forth may also be needed. Placing hard materials in easy to open containers, using nonskid mats, or specially adapted devices for cooking may be necessary for some students. There are a variety of ways to modify almost any cooking activity so that just about every student can participate to some degree.

Below is a list showing typical jobs that might take place in a cooking activity, skills that might be worked on at different levels, and possible modifications that may be needed for the blind or deafblind student.

Student's Job - Collecting Ingredients

Skills That Might Be Worked On: reading a recipe; learning about temperatures; learning concepts and vocabulary related to ingredients; shopping and paying for items; finding items in kitchen or cooking area; carrying items to work area; traveling around the store, kitchen or classroom; organizing materials in a work space and orienting to them.

Possible Modifications: use object symbols, Braille, large print, pictures to make recipe accessible or to make a shopping list; use travel cane to navigate store; use pictures, tactual marker/Braille labels to identify ingredients or location of ingredients; use a basket or cart to help transport ingredients and other cooking materials; use communication notebook or cards to assist in communication with grocery clerk.

Student's Job - Measuring Ingredients

Skills That Might Be Worked On: learning concepts/vocabulary related to measuring (scooping, pouring, measuring, fractions); counting skills (number of spoons, cups); organizing materials in a work space and orienting to them.

Possible Modifications: Use hand-under-hand techniques to assist with pouring, scooping; measuring; Use tray, mats, other surfaces to identify work space; Use a slotted box to organize and sort ingredients into a sequence; Match items to pictures/object symbols in recipe to count using one-to-one correspondence; Use measuring spoons, cups that are specially adapted for visually impaired such as measuring cups and spoons with adjusting level guides or a liquid indicator.

Student's Job - Chopping, Grating or Cutting Ingredients

Skills That Might Be Worked On: learning concepts and words related to preparing ingredients (cut, chop, grate, slice); using a pushing motion to activate a hand chopper; holding hand chopper steady while activating with other hand; holding a knife and using safe cutting technique; activating a food processor with a switch.

Possible Modifications: use hand-under-hand techniques to assist with cutting, grating, chopping; use duct tape to secure hand held chopper to table or assist the student by holding base of chopper; use an adaptive switch to activate food processor; use color-contrasted board for chopping or slicing; use easy grip knife for cutting.

Student's Job - Mixing Ingredients

Skills That Might Be Worked On: learning words and concepts related to blending ingredients such as stir, sift, toss, add; following a left to right sequence using words, pictures, or object symbols; using a hand-held mixer; activating a food processor to knead or mix) using a switch; stirring with a spoon or using hands to mix.

Possible Modifications: use a slotted box to sequence ingredients and work from left to right; use a sequence of objects on a strip that can be removed as that step is completed; use mixer that is on a stand; use switch to activate food processor; use hand-under-hand technique to model mixing motions.

Student's Job - Shaping dough

Skills That Might Be Worked On: learning words and concepts related to shapes and shaping dough; using hands/fingers to roll, pat, fold, cut.

Possible Modifications: use hand-under-hand technique to model shaping dough.

Student's Jobs - Preparing Pans and Cooking

Skills That Might Be Worked On: learning words and concepts related to preparing pans, using ovens or the refrigerator such as grease, flour, hot, etc.; using hands/fingers to grease or activate spray top on Pam/cooking oil; turning on and setting oven; learning safety techniques for using oven and handling hot pans.

Possible Modifications: use hand-under-hand technique to model spraying motion; use a pump-type squirt bottle instead of aerosol type can; use oven mitts instead of pot holder; use a rack jack device to reach the pan out of the oven.

Student's Job - Cleaning up

Skills That Might Be Worked On: learning language and concepts related to cleaning such as empty, wash, dry, etc.; carrying dirty dishes to sink; using hands to explore surface to determine if it is clean or dirty, to hold a sponge or cloth to wipe off cooking area; holding and sweeping with a broom or vacuum; washing, rinsing, drying dishes; returning items to correct location (may involve locating Braille, print or picture card on cabinet, shelf, etc.).

Possible Modifications: use hand-under-hand technique to model washing, rinsing, drying dishes, sweeping with a broom, or vacuuming; use tactual, print, Braille labels to mark cabinets, shelves, etc.

Student's Job - Sharing or Selling Food Items

Skills That Might Be Worked On: learning language and concepts related to selling or sharing food items such as buy, want, give, food names, money concepts; writing advertisements or product labels; bagging, boxing or sacking items for sale or to share; selling products and collecting money; using travel skills to deliver products ; Interacting with customers to ask what they want and to complete sale; sharing food items with friends, family; or pets; using communication strategies to ask and offer; learning math skills needed to handle money and make change; learning how to use an adding machine, cash register, etc.; learning how to figure cost vs. profit; budgeting profits to pay for special item or event.

Possible Modifications: use picture, print, Braille or tactual markers to label items for sale; use jig to hold bag sack open or to help student fold box to put food item inside; use cart to carry items around for delivery; use talking or large print calculators, or cash registers; use communication cards and books to facilitate interaction with others.

Issues and Solutions Related to Cooking Activities

The child who is tube fed

As beneficial as cooking activities are for many of our students, some students who have issues with feeding often seem to be left out of these activities, because they cannot consume food orally. Parents and teachers sometimes think they can't do cooking activities with their child or student because the he or she doesn't eat like a typical child. But any child can participate in cooking activities.

A child who is transitioning towards getting off tube-feedings may benefit greatly from exposure to food in a way that does not put pressure on him/her to take food orally. It is certainly less threatening to lick off your own finger that accidentally got dipped in the instant pudding than it is to have someone try to feed you pudding from a spoon that makes you gag. Having exposure to the textures, smells and tastes of food in this incidental way may make work the OT does on actual oral feeding much easier since the child has more familiarity with the food items.

The child who is severely disabled

Another benefit of cooking, even if the child will not be eating it, is that he or she can prepare something to offer to his or her peers. This gives opportunities to practice communication skills such as asking and offering as he/she assists with snack time. Preparing food to share also gives the child an opportunity to do something for others, an experience not always available to the severely disabled child.

What about hygiene?

An issue for some parents and teachers related to cooking is the issue of hygiene. Children who have problems controlling saliva or who tend to mouth things may not need to be preparing food for other humans to consume. One way to deal with this issue is have the student prepare something just for himself. Another way around that concern is to make food that is meant for pets to eat.

Cooking With Assistive Technology

Switch-activated blenders

Cooking is also a great activity for kids who need to have opportunities to learn to use switches or to expand the variety of routines in which they are able to participate. Students who have significant motor impairments and are not able to independently pour, stir, shake or hold tools needed in cooking can be active participants using simple assistive technology. Many teachers and parents are familiar with using battery operated toys with switches to give students with motor impairments recreation and leisure time activities which they can do independently or in a turn taking setting with a peer. It is just as easy to use the same or similar switches with a special power transformer called the PowerLink from Ablenet, Inc.

To adapt an activity using an electrical appliance for a switch user, prepare the setting in advance by placing the electrical appliance in a place that is easy to see and within reach of the participating student. Plug the appliance into the PowerLink; then plug the PowerLink into the electrical outlet on the wall. Plug a switch into the switch jack that corresponds to the power outlet the appliance is plugged into, then turn the appliance power switch to the on position. When the switch is activated, the appliance will run.

Using a blender with a switch is an easy way to make snacks and drinks for students. The blender running makes lots of noise and vibration, and the liquid inside swirls around. It's a high sensory load, which can be especially desirable for a student with multiple sensory impairments. The noise and vibration can be dampened down a bit by setting the blender on a placemat or other padding if it is too startling for the student. It's also a relatively safe appliance since there are no exposed blades or beaters. Even items that are normally stirred using a mixer can sometimes be mixed with a blender to reduce the mess and safety risks. The blender is a good way to make drinks, smoothies, puddings and ice cream shakes that are easy to consume for students who have difficulty chewing or have problems tolerating texture in their food. Drinks like frozen juices or chocolate milk, or soft foods like jello and pudding which only need stirring with a spoon can be mixed with a blender to give students who cannot independently hold a spoon or stir a chance to participate.

Switch-activated stand-mounted mixers

Stand mounted electric mixers such as those made by Kitchen Aid are also great for using with switches, because they are stable and do not require being held. Liquids and solid ingredients can be added to the bowl, and the mixer activated with a switch and PowerLink. A mixer is a good appliance for making cakes and cookies, even if they are from a mix. Whipped cream can also be made this way.

Setting up a classroom kitchen

If you are a classroom teacher with just an ordinary classroom set up and no kitchen appliances, I would recommend that you start by buying a toaster oven that is as big and as good a quality as you can afford.

Microwaves are good for some things, but for cooking baked goods, they are almost universally dismal failures. Baking cupcakes or cookies is an activity that can be done at school, even if you do not have an oven in your classroom. There are a lot of good recipes you can make by dividing the recipe in half and making it in a toaster oven.

You should also invest in a blender. It doesn't have to be big or even really good quality. If you have students who are tube fed, you should already have a small refrigerator provided by the school district to store the student's food in, and you can use this for your cooking ingredients. If you have a choice, get one large enough to have some freezer space so you can make Popsicles and store ice cream.

With these appliances and a PowerLink with switches you can make a variety of foods and snacks. If you need money to purchase this equipment, try selling popcorn, dog biscuits or cookies to teachers and students in the school to generate funds for your classroom needs. You might be able to get a family member, school staff member or your PTO/PTA to donate kitchen items. Garage sales, thrift stores, or "wholesale clubs" such as Sam's or Price Club often have deals for limited pocket books.

Recipes for Success

Dining Alone

There are any number of good, simple recipes that can be made for one individual. Here are two or our favorites.

"Aggression Cookies"

1 cup oatmeal,

3/4 cup flour,

1/2 cup brown sugar,

1/2 stick margarine,

1 teaspoon baking powder

Mix all ingredients by hand. Form into a ball and then flatten with your hands by patting on it. Fold dough over and repeat several times. Then divide into 3 or 4 balls and flatten each one on to an ungreased cookie sheet by patting. Bake at 350 until they're done (about 10 minutes). This is a nice recipe because it makes just enough for one, so the cook eats what he/she makes. It also involves a lot of banging with your hands, which is a nice way to take turns and work out your frustrations at the same time.

"Princess Sandwich"

Slice of bread or bagel

Whipped cream cheese

Fruit Jelly

Toast bread or bagel in a toaster oven. Put softened whipped cream cheese and jelly in separate cake decorating tubes and let the child help squeeze on cream cheese and jelly designs. Cut into strips or triangles and serve.

Animal Snackers

There are a variety of recipes for how to make treats for all types of animals that can be found in books and on websites. One very nice website for some of these recipes is the Recipe Goldmine, which can be found at http://www.recipegoldmine.com Here are several great recipes and some ideas for how to include them in cooking activities at home or school.

"Basic Dog Treats" (from Recipe Goldmine)

1 3/4 C. whole wheat flour

1 1/4 C. oatmeal

1 1/2 T. vegetable oil

1 C. warm water

Options: 1/3 C. finely grated cheese,1/4 C. peanut butter

Mix the dry ingredients together. Then mix the wet ingredients together. Blend both mixtures until a firm dough is achieved. Shape dough into an oblong roll, wrap in plastic wrap, and chill for 1 hour. Preheat oven to 300ºF. Lightly grease sheet pan. Slice roll into 1/4-inch slices, place on sheet pan and bake for about 1 hour or until treats are done, checking after 45 minutes, and then every 5 minutes thereafter. Let them cool before giving to your best friend.

"Horsey Cookies" (from Recipe Goldmine)

1 C. uncooked oats

1 C. flour

1 C. shredded carrots

1 tsp. salt

1 tsp. granulated sugar

2 tsp. vegetable oil

1/4 C. molasses

Mix ingredients in bowl as listed. Make little balls and place on cookie sheet which has been sprayed with oil or Pam. Bake at 350ºF for 15 minutes, or until golden brown. Take several along to your next hippotherapy session or share them with the local feed store as a give away for their customers buying horse feed.

"Bird Bread" (from Recipe Goldmine - Source: Bird Watcher's Digest)

2 C. melted peanut butter, bacon grease, meat grease or other fat

2 C. cornmeal or stale dry cereal blended into crumbs

Warm water

2 to 3 C. wild birdseed

Raisins, nutmeats or chopped peanuts

Slowly melt peanut butter, grease or fat over low heat. Add cornmeal or stale cereal crumbs. Slowly add enough warm water to make a stiff dough, then add birdseed and raisins, nut meats or chopped peanuts. Pack mixture into small foil pans or a large flat pan and refrigerate overnight. Cut into pieces for tying onto tree branches. Spend time watching the different birds that come to feed and learning about the life cycle of birds.

Blender Delights

"Gazpacho"

12 oz can tomato juice or V8

1 Zucchini

1 Green bell pepper - small

1 Onion - small (optional)

1 Cucumber

1 Tomato - large

1 Garlic clove (optional)

1/4 Teaspoon chili powder

4 Tablespoons olive oil

You can prepare in advance by cutting ingredients into large pieces, so students can eat some or taste small bits while they prepare the gazpacho. Pour tomato juice in blender. Add about half of the vegetables. Blend. Add the other half, blend more. Add all remaining ingredients. This is traditionally served as a soup, but I would serve it in a cup for students to drink. This is a nice recipe for kids to make to serve mom and dad at home.

"Yogurt Popsicles"

8 oz plain yogurt

8 oz any kind of fruit juice or

8 oz frozen fruit

Put all ingredients in a blender. Blend well. Pour or ladle into Popsicle molds or paper cups with spoons Popsicle sticks inserted in the middle. Freeze till firm. Sell at an outdoor stand or simply eat them up.

"Fruit Smoothie"

1 medium banana, sliced and frozen

6 strawberries, frozen

2 Tbs. frozen orange juice concentrate

1 cup milk (may be soy milk or yogurt)

In blender, combine all ingredients and blend until smooth and creamy. Serve in margarita glasses with umbrellas and straws.

"Berry Shake"

1/2 cup yogurt or rice milk

1 tsp. sugar or honey

1/4 tsp. vanilla extract

1 generous cup of chopped strawberries, blueberries, or mixed berries (you may use frozen fruit)

Blend all ingredients in blender. Serve in soda fountain glasses and garnish with a strawberry.

"Chocolate Peanut Butter Shake"

1 cup chocolate milk, (nondairy "milks" such as soy or rice milk may be used)

1 small banana, sliced and frozen

2 Tbs. smooth peanut butter

In blender, combine all ingredients. Blend until smooth. The kind of treat to make Elvis take notice.

Tasty Resources

There are so many things that can be taught through cooking activities. Cooking activities are also a natural activity for families to do together or for kids to do with their peers. Check out some of the simpler recipes available in children's cookbooks that can be found at any book store, your local library or on the internet. Then, get out in the kitchen and start rattling those pots and pans.

Recipe Resources

There are some really helpful books for teachers and parents that can give you some good ideas of cooking activities and recipes to do with students. Some of these have easy to make recipes, some have foods that are especially appealing to students with special needs.

Feed Me! I'm Yours, 1974, Vicki Lansky, Meadowbrook press.
This is mainly a cookbook for baby food, but look toward the back for seasonal snacks, edible playdoughs, Popsicles and juices
Sugar Free Toddlers: Over 100 Recipes, 1991, Susan Watson, Williamson Publishing.
Mainly a cookbook for toddler food, not always simple recipes with only a few ingredients, but it does include some great snacks made from fruit, fruit juice, smoothies, gelatin snacks, puddings and spreads.
Super Snacks, 1992, Jean Warren from Totline, a division of Frank Schaeffer.
Seasonal recipes with fresh and cooked fruits and vegetables, no sugar added. Many recipes for muffins, pancakes, punch, pudding, and Popsicles.
Book Cooks: Literature-Based Classroom Cooking, 1991, Janet Bruno, Creative Teaching Press.
Recipes and other classroom activities to accompany teaching thematic units based on children's literature. Some of these recipes are pretty visual, but the general ideas can be a good launching point for food and cooking activities with students of all levels.

Switch Resources

AbleNet

Adaptivation Incorporated

Don Johnston

Enabling Devices

Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)


By Jean Robinson, Outreach Family Support Specialist and
Edgenie Bellah, Texas Deafblind Project Family Support Specialist
Abstract: Parents of children with visual impairments give examples of how their children have given back to their communities.
Keywords: Family Wisdom, volunteering, visual impairment, multiple disabilities, Circle of Happiness.


The book How Full is Your Bucket?, by Tom Rath and Donald Clifton, uses the theory of the Dipper and the Bucket as a metaphor to describe a person’s life satisfaction level. Imagine that everyone has an invisible bucket and an invisible dipper. We are at our best when our buckets are overflowing and at our worst when they are empty. The authors propose that in each interaction, we can use our dipper either to fill or to dip from others’ buckets. Whenever we choose to fill others’ buckets, we in turn fill our own.

Children with disabilities spend much of their day receiving services from parents, teachers and therapists. In other words, they are typically in the position of having their buckets filled. Being a passive receiver can keep a child from developing a sense of self that comes from having a meaningful purpose. Discovering that he or she can give, as well as receive, provides a child the opportunity to build self-esteem and self worth. She experiences the benefits of filling others’ buckets!
Learning begins at home with a child participating in household chores. In addition to learning how to be more independent, your child gets the chance to experience contributing to the daily operations of his or her home. Again, he or she gets to fill someone else’s buckets. This is true for all children—regardless of their age and abilities—and participation can be along the continuum from partially participating to being totally independent. For example, a child can help set the table by carrying the dishes Mom stacks on her wheelchair tray and then giving encouragement to her brother while he sets each place.

The same child can also use her wheelchair tray to carry folded laundry. The benefits can also be achieved at school with the child having responsibilities such as delivering the attendance or operating a recycling program.
Another great way to give your child a chance to fill other people’s buckets is through volunteer experiences in the community. There are literally hundreds of volunteer opportunities in your local community. Pick one that meets your family’s style and passions and make a commitment to do something with them. To get started you may need to go as a family to show the staff the things that your child is capable of doing. This is where practicing home responsibilities pays off. Skills developed at home can be used to sort food at the area food bank and fold towels at the local animal shelter. But while learning to transfer the skills to a new place and building employment skills is valuable to your child, the personal satisfaction they will have by giving to others is priceless.

To give you real life examples of the benefits of volunteering, we asked parents to share their experiences on the Texas Visually Impaired Family Network . As you plan your summer with your children, we hope this small sampling of volunteer ideas will inspire your family to find (more) opportunities to give to others.

ALISON:

My daughters and I have done a number of fun runs/walkathons. Madi actually served on a “personal sag wagon” at the MS150 bikeathon last year. She kept the driver company, and held up signs along the way that encouraged us and cheered us the whole way.

We have helped people clean up their yards after the hurricanes. Madi is pretty strong and can carry limbs a distance. Also we have volunteered at the Food Bank.

Madi and her sister, Meglyn have done some stuff with the Girl Scouts as well, like face painting booths and such. Madi’s fine motor skills limit her effectiveness, but she really loves to be a helper.

For a few months, Madi did some “volunteer work” by sitting next to another student on a school bus to help monitor her breathing and verbalizations in case she got uncomfortable. I don’t really know how effective she was at that, but she felt good about serving in that way, and the mom and the bus aide said it was great. We love volunteering as a family, but need to find more ways so that Madi can be truly helpful.

SUZANNA:

We volunteered at a sports camp at TSBVI, a sports camp in Colorado Springs and at a sports recreation center in Houston.

CAROLINE:

When my daughter, Lauren Daley was 3, she volunteered by donated 9 inches of her fantastic blonde hair to Pantene’s Beautiful Lengths. She got a letter back saying that her hair was used to make a wig for a child who has cancer. “Never too young to give back.”

With busy, overscheduled lives it is easy to put volunteering on the back burner. If this is a priority for you, initiate a discussion with your school team. Talk about the possibilities and make it part of your child’s IEP. Remember to ask for assistance from your specialist with DARS/DBS. They know about work experience programs offered in your area and can help you make those connections.

RESOURCES:

How Full Is Your Bucket? For Kids by Tom Rath and Mary Reckmeyer. Gallup Press, 2009. National Braille Press November 2009 Book Club Selection.

Have You Filled a Bucket Today? A Guide to Daily Happiness for Kids by Carol McCloud. Print/Braille edition, $9.95, Ages 4-9, 1- 17-2 - 1 0; 1-888-9 5-89 5

“Preparing for the Workplace Pays Off for Children with Disabilities.” See/Hear, Winter, 2004.

“Kayleigh Has Her First Job!” See/Hear, Summer, 2005.
www.thevolunteerfamily.org/Volunteers/Ideas. aspx

www.volunteermatch.org/

kidshealth.org/teen/school_jobs/jobs/volunteering.html

www.justgive.org/how-to-give/giving-resources/ ideas-for-volunteering.jsp

www.bygpub.com/books/tg2rw/volunteer.htm

www.1-800-volunteer.org/1800Vol/OpenIndexAction.do

www.volunteeringinamerica.gov/index.cfm

Versión Español de este artículo (Spanish Version)

By Myrna Medina and Jackie Kenley, California Deaf-Blind Services Family Specialists

Reprinted with permission from reSources Winter 2007, California Deaf-Blind Services. To view this and other issues of reSources, go to http://www.sfsu.edu/~cadbs/News.html.

Abstract: The authors share tips for facilitating communication between school and home. One author provides us a personal glimpse in how the communication notebook benefits her daughter.


A communication notebook or daily journal is a book that goes back and forth from home to school, and the idea has been around for a while. It seems to be something commonly used in special education.

It is important for parents to know what is happening with their children during the school day regardless of whether or not their children have disabilities. Home–school communication is one of the most important and necessary factors in developing good relationships between classroom teams and families. Due to busy work schedules, lack of time, and transportation challenges, the opportunities to meet in person are limited.

Teachers and school teams benefit when parents share information about medical issues that may affect the student’s behavior at school. It can be beneficial to the family and school team when they share ideas and successes with communication skills as well as other skills. Perhaps it is worthwhile to take a look at how we might better use this notebook tool with our students who are deaf-blind.

Educators and parents may see a picture in their minds of a beleaguered teacher at the end of the school day with a stack of notebooks that need to be written in. One possible solution for the team of the student who is deaf-blind may be if the student has a one-on-one aide or intervener; it may be useful to have that person writing in the communication book. The intervener/one-on-one will probably have spent most of the day with the student and be more attuned to what has happened at school. Also they will be aware of the communication [system?] the student is using and the different therapies that (s)he participated in that day. The teacher may then be free to write about special things that have happened, or concerns about the student. Also the student’s therapists such as Occupational therapist, Physical therapist, Orientation and Mobility, Speech and Vision therapists may find time to write on occasion and send messages home through the person writing in the notebook.

If the student has a home program it may be good to have the home staff write something in the communication book from time to time. Sharing ideas and strategies can be helpful to both the home and school teams.

It is, of course, important to send things—money, notices, emergency info—all sorts of things back and forth between home and school. These can be included with the notebook and this is a job the one-on-one might also help with.

Some teams may like to write long narratives but others may find that too time consuming. Most important is that the home school notebook is effective and it meets the needs of the child, team, and family; that it is used regularly; and is simple, honest, and positive, as well as understandable for all.

When writing in a communication notebook there are things we might want to consider. Things to consider are:

  • Something the student did for the first time at home or school, or something the student is beginning to do on a more regular basis, whether or not we see this as positive or negative

  • Something the student may be anxious about

  • Something that occurred physically—illness, bowel movement, menstrual period

  • What is going on at home—visitors, activities, work schedules, home staff

  • How much sleep the student has gotten

  • What the student has eaten or drunk and how that seems to affect him or her

  • Who the student interacted with socially, and how (s)he seemed to feel about that —interaction with friends, classmates, family

  • Who are the student’s buddies—what activities do they share?

  • Who the student has interacted with to work/learn, and how the student felt about that —staff, therapist

  • Physical and communication patterns during the day/week that may show how the student is feeling

  • What is happening on the bus?

  • What happened today that was not so positive?

  • Very Important: What happened today that was positive???!!!

The minute you walk through the door…

By Jackie Kenley, California Deaf-Blind Services Family Specialist

When my daughter comes home from school on the bus, we have developed a routine through the years. She seems to do best with routines and these routines meet my needs as well (e.g., her basic need to get a drink and go to the bathroom and my basic need to find out what has happened that day at school). Because of her limited communication, the home-school notebook is a particularly needed resource for me. Each day, I reach for the notebook in her backpack and try to get an idea of what’s up. Of course, life interrupts all routines, but I find this time well spent and it helps us with our plans for the rest of the day. It also helps me to know about things that need to be celebrated, things that need to be more clearly understood, and sometimes things that need to be addressed.

Some days I receive a quick note with the “basics” about her schedule, such as what she has eaten that day. Some days may be special because she has done something really exciting and new, or even comical…like throwing her folded cane in the trash can that has a permanent top! The team may have concerns about her health or there may be a cry for help from the school team about how tough things have been. This cry for help may just be a negative report but I have learned the importance of a follow up call. A longer note back to school—sometimes to schedule a team meeting—may also be helpful. Sometimes just letting members of the school team know that I understand and know they are trying their best seems to be very important to them. When I read about a less-than-positive persistent problem, the team and I can meet and often come up with ideas that support the team and help turn things around for my daughter. The home-school notebook can help facilitate comfortable, non-confrontational team meetings that are so helpful. It is something that I often wish for every child’s team.

I have had the opportunity to speak with teachers in college classes throughout the years and I always emphasize the importance of using a home-school notebook to communicate with families. I suggest that they try to write about something positive that occurred during the school day. At times, this may be a bit tough for the school staff but it can be a good practice and it is certainly encouraging to families. How many school situations could be turned around by good communication? The home-school notebook allows families and teams to work together to make the system (and program) work more effectively for the student.

Originally published in Summer 2007  Texas SenseAibilities
Versión Español de este artículo (Spanish Version)

Jeanine Pinner, Training & Outreach Coordinator, TxP2P

Reprinted with permission from Texas Parent to Parent Winter 2007 Newsletter.

To learn more about Texas Parent to Parent, visit their website at .

Abstract: The author shares strategies parents can use to help their child have opportunities throughout their childhood to become self-determined adults, capable of driving their own bus.

Keywords: Family, self-determination, parenting skills, family wisdom, evidenced based practice


Picture your childs life as a bus. Whos driving? Is it you or your child? Where is the bus going? Who chose the route, the destination, the speed? Who are the passengers? What about side trips along the way? (You know that side trips often enrich the journey!)

Of course, you realize that my bus scenario is really just a metaphor for self-determination, right?

When Jake was much younger, his father and I drove the bus for him, but for several years, weve taken on different roles as Jakes ability to drive his own bus has grown. In earlier years, because of his age and issues arising from his disability, we made decisions for Jake without consulting him. We did this with his best interests at heart, and with the hope (and intent) that he would be able to take over the decision-making process in his own behalf. Our vision of success is of Jake driving his own bus.

As parents of children with disabilities, chronic illness and other health care needs, we find ourselves in the position of having to make decisions and plans for a child who may not be able to completely comprehend whats going on at the time or communicate their needs or desires. While theyre in school and until they reach age 18, were seen as our childs legal representative, and were empowered with the awesome responsibility of making decisions about their school plan and their involvement in the community. We do this year after year, gathering information and skills along the way. We get used to driving the bus, and hopefully, weve gotten pretty good at it.

When our children reach age 18, what happens? Theyve reached adult status and are now supposed to drive their own buses, right?

Are they ready??? Do they have any experience making their own choices about the direction of their lives?

Here are a few basic scenarios to consider:

  1. Sams parents have made all of the decisions for Sam until now. Sam recently became 18, and all of a sudden, he has some control over his life and hes loving it. He doesnt have any experience making his own decisions, and is making bad choices. Since hes 18 now, he has control over whether his parents are invited to his ARD, and he has chosen to exclude them . . .
  2. Jane is 18 now, but relies completely on her mom to tell her what to do. She is a very capable person, but has no experience making her own decisions and lacks confidence in her ability to choose for herself . . .
  3. Sally is 18 and about to graduate from high school. Her parents are completely supportive of Sallys efforts and desire to take charge of her life and make her own decisions. They started very late in helping Sally learn how to drive her [own] bus and they still need more time...shes not ready to do this on her own!

How can we help prepare our children to drive their own buses and when should we start? There are many opportunities each day for our children to exercise their choice-making skills; those opportunities exist for every age and level of ability. It may be about food, entertainment, clothing . . . it might be attending or facilitating their own ARD meetings . . . its an opportunity for a person to have a little bit of control over his or her own little corner of the world. Its also an opportunity to experience the outcomes or consequences of choice-making.

What if they fail???

Ive always learned more from my failures than from my successes, so I dont see failure as a completely negative experience. Dont we owe it to our children to provide them with opportunities to learn how to make responsible choices (and that includes opportunities to fail in safe environments like home and school)? Shouldnt they have opportunities to express (and act on) their dreams for their future?

When Jake told me he was going to take French as an elective in his freshman year in high school, I said something like, Dont you think you should take Spanish? We live in Texas and knowing Spanish would be a really good thing. He said, No, I am taking French. So, I told him (after listening to the little voice in the back of my brain) that it was his choice and wed see how things were going at the end of the first six weeks grading period. Guess what? He made a B! He loves languages and I know that hell continue on his quest to learn as many languages as possible.

Does this mean that Ive backed completely out of the picture and let him do whatever he wants? NO! My role has changed, though, and my support and guidance look different than they did a few years ago.

When Jake chooses to sleep until 20 minutes before the school bus arrives, it aggravates me because I dont like rushed mornings. As long as he completes the required morning routine (shower, hair, food, etc.) though, Im not going to require him to get up earlier. If he pushes it too far and starts to miss the bus, it will become a teachable moment and well be working together to design a new morning schedule!

Jake is in the drivers seat now, and his choice-making skills are pretty impressive! Im usually right behind the drivers seat carefully watching and trying not to give too many directions and instructions (picture me as insurance). Before long, Ill be able to just ride along, perhaps taking a nap or reading a book in the back of the bus. Ill know Jake is on the road to success when he is able to take a trip without us (and doesnt run over anyone or anything!).

Many happy driving experiences to you and yours! Read on for a few more ideas about promoting and supporting self-determination&

We are all interdependent. No man is an island unto himself. We need each other. When we are fortunate enough to have an opportunity to provide selfless assistance, not only is the other person helped, we are too. We come away changed, feeling good about ourselves and what we have done. (Wilkins, 2000)

Things to Consider:

If youre not driving the bus, does that mean youre out of a job? NO! Use those advocacy skills you worked so hard to develop by becoming a leader in advocacy:

  • Work with others to help your childs school and other services provide the best for all children
  • Share your experiences and knowledge about your sons or daughters dreams and needs
  • Serve on school or agency committees involved with students
  • Become a member of advisory boards or councils dealing with young peoples issues
  • Testify on educational and youth disability issues before school boards, city, county and state legislative bodies

More Things to Consider:

  • Do I try too hard to sway my childs decisions?
  • Do I tend to speak for my child instead of letting him speak for himself?
  • Can I separate my own desires from my childs wishes? (PACER, 2002)

How You Can Nurture Self-Determination

  • Allow your daughter/son to grow (take risks, safe experiences) and try out new things
  • Recognize that all young people will make mistakes and change their minds before settling on a definite path
  • Learn how to assist or let your son or daughter advocate for himself or herself
  • Know when to step back or when to step in without taking over
  • Help your son or daughter feel good about himself/herself and to understand his or her disability
  • Emphasize what she or he can do -- celebrate accomplishments
  • Your own familys religious beliefs and cultural values provide opportunities for learning. (Ca. DOE, 2001)

Whats at risk if we fail to equip our children with the skills and education they need to face the future?

  • Chronic unemployment and underemployment
  • Social and emotional difficulties
  • Deprivation of economic self-sufficiency and related benefits (social security, medical retirement)
  • Susceptibility to changing economic conditions
  • Dependence on public support (Ca. DOE, 2001)

References

<http://www.cde.ca.gov/>

<http://www.pacer.org>

<http://www.thenthdegree.com>.

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

Compiled by Jean Robinson, VI Family Support Specialist and
Edgenie Bellah, TX Deafblind Project Family Support Specialist,
Texas School for the Blind and Visually Impaired

Abstract: Parent leaders share words of wisdom and their experience gained from raising children with visual impairments or deafblindness, including those with additional disabilities.

This July, the National Center on Deaf-Blindness (NCDB) made available a wonderful publication titled, I wish I had… Wisdom from parents of children who are deafblind. Prepared by Paddi Davis, Peggy Malloy, Betsy Martin-Richardson, the publication is a compilation of parents from across the country sharing their thoughts on their wisdom and experience gained by having a child who is deafblind. Of the many contributions made in I wish I had…, three are from Texas parents. Following is what they had to share:

I wish I had…

…kept a journal every week, especially about the good things happening in our lives. Kathy Sheriff, Willis, TX

… known the importance of holding my child as much as possible in the beginning. Instead of spending so much time trying to understand the diagnosis, I could have been bonding, rocking, playing, and dancing with my son. Touch is so important to these babies. If I could do it again, I wouldn’t stop touching him from the moment I met him. Erin Sefcik, Dallas, TX

… known that with all the tears of sadness there would also be tears of joy. Both sets of tears are unimaginable to most other parents. Most parents know certain things will happen as their child grows. In our world of parenthood, we coach, we teach, we model, and we pray. And when a milestone is reached, it is so meaningful and touching. The little joys of finally finding her toes. Her first words. Singing “You are My Sunshine” together. Following me around our home without her walker for the first time when she was 2 1/2, with me on the verge of wondering if it would ever happen. Identifying pictures by sight and using sign language successfully. When those events occur, you could never replace them or ask for more. All of those things that were on a list of things she would never do, now DONE. Tears of joy come and you will never feel more love or be more proud in your lifetime. Becky Lowell, San Antonio, TX

When we saw this publication, we were struck with our own wish that we had thought of asking parents this question all through the years of working with them. The opportunity presented itself this year at the graduation of the 2008-2009 VI Family Leadership class. Here are the graduates’ responses.

I wish I had…

… known other parents to help me cope with the emotional aspects of having a VI child.

… known earlier about all the different resources available that were available to us.

… known that when people stare, they aren’t always thinking the worst. Sometimes people are just curious and ready to learn about differences. I don’t always have to have my guard up.

… kept more involved in community activities

… been able to let anger go earlier and move forward.

… been able to develop better relationships with educators from the start.

… looked ahead rather than stay stuck in the “problems we had to face.” It would have been easier to see we are on a path to something rather than in a ditch.

… allowed more people to learn about my son.

… thought “outside the box” more often.

… just enjoyed the day with my son, more often.

As you read these parents’ thoughts, we encourage you to reflect on the lessons learned in your own journey. Not only does this give you the excuse to stop a moment and celebrate your journey thus far, but it prepares you for the moment when you will have a chance to help another parent learn from your experience. To receive a copy of I wish I had…, and read more family stories, go to .

By Joan Guthrie Medlen, R.D., L.D.

Program Director and Editor

Reprinted with permission from Disability Solutions,a publication for families and others interested in Down Syndrome and developmental disabilities. To learn more, please go to their website at http://www.disabilitysolutions.org/

Abstract: One parent shares her perspective on maintaining a healthy balance between being an effective advocate for your child with disabilities and practicing the fine art of forgiveness. The author provides a wonderful guide for parents to use in making forgiveness part of their advocacy tool kit.Key Words: family, parent perspective, parent advocacy strategies

Author's Note: This October 12, 2005 blog is admittedly written from the slant of the parent. However, all the concepts are true from the perspective of a teacher or support person.

Joan Guthrie Medlen is the mother of a son with Down syndrome and is a long-time advocate in the Down syndrome community. She can be reached at her Website, <www.downsyndromenutrition.com>.  Although this article is not specifically pertinent to advocacy for blind children, it addresses issues that can have a profound effect on any parent who fights for a child's rights in the special education system.


Living the life of a disability advocate can make the world seem like a very adversarial place. Of course, a lot of it depends on your experience. Most of the time, parents of children in early intervention services feel nurtured by their early childhood specialists. Everyone is concerned about the development and health of your baby and looks for the typical milestones along with you. Parents feel supported as specialists suggest strategies to keep the baby from sliding out of the high chair, to finally get up on all fours to crawl, or to sign their first word, "more," which everyone regrets later. I hear many parents describe Early Intervention services as a type of cocoon, protecting them from what lies just around the corner: school-aged services.

Over the years, I've had to advocate staunchly for my son. I remember walking into a "brainstorming meeting" to find it was a full-blown IEP review with no notice. Seventeen (17) people sat around a table smiling pleasantly at me, reassuring me there was nothing to worry about. He was only five at the time. In those early years I was devastated after every meeting. I felt exhausted—like one of the "Dementors" from Harry Potter had sucked all but a last breath from me. In just a short time, "advocacy" became synonymous with anger and frustration.

Since then, I've learned that being an effective advocate for my son, who has significant disabilities, means having impenetrable skin. It also means not thinking of him as my son, or me as his mother, during the meetings or at school. Rather, it becomes a business deal from my perspective. I force myself to sit back and watch the interaction of the team, listen to their comments, and then ask for the time I need to process the information. All must be done with as little emotion as possible. Sometimes I am more successful than others.

There are times when my feelings get the best of me and I am overwrought with anger, hurt, resentment --- every negative feeling we have words to describe and some we do not. It is easy, perhaps too easy, for parents to fall into a constant pattern of righteous indignation. One of the best things about the years Andy was included in elementary school was being able to spend time with other parents who were constructively involved with the school community rather than being surrounded by anger and frustration all the time. This is because the school did not have a "special education room." When he moved on to middle school, I cried when I met some parents in his homeroom, a visually-based classroom. The first meeting I attended was filled with anger, bitterness, and blame. I felt like I was being poisoned.

How did this happen? I agree that more often than not parents have a lot to be frustrated and angry about. Constantly maneuvering to find someone who sees your child as a great kid (rather than being told all the things he can't do) is not easy. Living under the microscope of special education without feeling judged at some point is impossible. The "evaluation" is not limited to academics, school situations, or your child's strengths. Folks tend to want to know just what it is we're doing at home to teach our children.

I've been doing some reading on forgiveness over the past year. I am increasingly convinced it is the missing link in advocacy efforts. Not being able to forgive eats away at us and breeds bitterness. The injustice takes on a life of its own; it is all consuming. It becomes a part of daily life. That means your adversary wins.

My first introduction to this concept came from the book, How Good Do We Have to Be? By Harold Kushner. He tells the story of asking a woman whose husband had an affair, left her, and fell chronically behind in child support payments to forgive her husband. When asked how he could suggest such a thing, he replied, "'I'm not asking you to forgive him because what he did wasn't so terrible; it was terrible. I'm suggesting that you forgive him because he doesn't deserve to have this power to turn you into a bitter, resentful woman.'" For me, that was a new spin on forgiving someone.

The last thing my children need is a bitter, resentful, angry mother, nor do I want to be that person. I enjoy life and like to revel in the good things, large and small. I love watching my children learn and grow, each at their own pace. I enjoy being helpful and looking for constructive solutions or steps to overwhelming situations. I like to laugh. I want to be a nice, warmhearted person, not a sour, negative, cross one. I want to be able to walk into my son's school community and be the person I was before special education entered my life.

Like many people, I wondered if I forgive people who have hurt me—whether it was intentional or not—I also agree that nothing wrong happened. What I have learned is I do not. I had to learn what forgiveness is, and what it is not. Here is some of what I have learned.

Forgiveness is:

  • Letting go of the anger and resentment you feel.
  • Looking for the good in a situation.
  • Restraint from seeking revenge and harboring resentment.
  • A freely chosen gift.
  • A personal decision. It only takes one person to forgive.
  • A way of healing your wounds from the injustices and hurts you have incurred.
  • Healthy. Research suggests forgiving those who offend you may ease depression, high blood pressure, backaches, muscle tension, and even heart disease.
  • Brave. It takes a brave person to forgive someone who has hurt them without asking for anything in return.

Forgiveness is not:

  • Forgetting what happened. In fact, it is better to forgive without forgetting. "You can forgive the bully and still watch your back." (Bob Enright, International Forgiveness Institute) We can learn from every experience and make corrections. This strategy seems the best for advocacy work. Learning (and remembering who you can trust) without hanging on to the bitterness.
  • Letting the other person or people off the hook. You can forgive someone and still hold them accountable for their actions. This is especially true in legal situations, including IEP meetings. Rules are rules.
  • A guarantee there will be reconciliation. Forgiveness is a gift we choose to offer to another person. They may not reciprocate. It takes two people to reconcile.
  • Overlooking what happened. In fact, in order to forgive, a person must truly understand the offending event.
  • Condemning someone. Backhanded forgiveness doesn't do anyone any good. In other words, offering forgiveness to show how hurt you are defeats the purpose.
  • A means to justice. Forgiveness does not demand compensation first. You choose to give it or not, no strings attached.

I believe forgiveness strengthens my ability to advocate effectively. By letting go of resentment and anger, people are more willing to talk and problem-solve. They are less likely to worry that the discussion will become a battle with an angry parent. Remember, forgiving someone does not mean they are not accountable for their actions. No one loses their rights by forgiving an injustice.

Learning about forgiveness has given me a lot to think about. Have I truly forgiven every situation I am resentful over? No. But I am working on it. I am learning that it is harder to forgive those things that I have held onto for a long time—such as the IEP I mentioned earlier—than events that are recent. Perhaps our response to situations becomes so ingrained that changing how we feel about it takes time and work. After all, forgiveness is not meant to be easy, if done correctly.

These days I am not as easily upset in meetings about my son, though I have my moments. I am working on remembering to truly examine the situation, tease out the lessons, and then work on forgiveness. It feels much healthier. And I am much happier for the work.

Take care of each other.

Originally re-printed in See/Hear Winter 2006.

with Lynne McAlister and Sara Kitchen, Certified Teachers of the Visually Impaired.

Lynne: Hi, I'm Lynne McAlister.

Sara: And I'm Sara Kitchen.  And today, we're gonna talk about cortical visual impairment.  Give you an introduction to it, what's it all about, because not everybody is familiar with it.  And so we wanted to just kind of give you a starting point.

Lynne: So, this is CVI 101.

Sara: Yes.

Lynne: And I'm gonna start with the definition of cortical visual impairment. This is diagnosed to recognize when there's an obvious visual impairment that's unexplained by any damaged to the eye itself.  Usually, it's coupled with red flags, and we're gonna get into those a little later.  CVI is a relatively new area of research.  It wasn't until the mid-'80s that it was even considered a visual impairment.  Before that, it was just kind of lumped in to the MR brain damaged group.  It's the fastest growing visual impairment in developed countries.  This is probably because with our kind of Western medicine, we're able to keep people alive after serious injury that in the past would not have survived.

Sara: Uh-hmm. And preemies.

Lynne: Yes.  So, since CVI is, um, you know...since visual impairments are diagnosed by an eye doctor, some doctors maybe reluctant to diagnose a visual impairment when there is no obvious damaged to the eye that is visible to the eye doctor.  And so we have found that CVI maybe underreported.  You may have a student that has really obvious characteristics of CVI and functions as an individual with a cortical visual impairment.  Yet on the eye report, the diagnosis is just something totally off.  I think we have a student with a muscle imbalance, I think.  It's the reason for her visual impairment on the eye report.

Sara: And it really does makes sense that the doctor wouldn't feel comfortable with diagnosing that because their training is in the eyeball and it's not in the brain.  That's a different area. . .

Lynne: Right.

Sara: ...completely. So...

Lynne: So, you can't rely on the eye report to know if you are working with a student with CVI.  Well, tests such as MRIs, you know, can be somewhat useful and that you can see the areas at the brain that are damaged.  They're not gonna give you a lot of information about what the student's vision is like.  Even the same part of the brain damaged in two different individuals could give you two wildly different visual characteristics.  So, when you are working with the individual that has characteristics of cortical visual impairment, the first thing you're gonna wanna do is go back and look at the medical history of the student.  And what we're gonna be looking for is really obvious red flags.  Asphyxia is a big red flag, that's a lack of oxygen at any point during birth, prebirth, really anything that would restrict air to the brain, strokes...

Sara: Uh-hmm.

Lynne: ...drowning...

Sara: And when the blood flow is restricted, that's another thing.

Lynne: Uh-hmm.

Sara: Mainly, all of these things have to do with blood flow or oxygen to the brain.

Lynne: Right.

Sara: And also, any head trauma could cause CVI.

Lynne: Right.

Sara: Or an infection, an infection that causes swelling will restrict the blood flow.

Lynne: Right. Cytomegalovirus, I think, is a big one.

Sara: Uh-hmm.

Lynne: And any kind of trauma, like Sara said, gun shot wound, car accident, bike accident and things like that.  So, when you have...so now, if you have a student with some of these characteristics, and then you have the red flag in the medical background, that's a really good indication that you should start looking at CVI.  And thinking about trying to figure out now what exactly this student can see.  So, here's a picture of the brain I'd like to use.  It shows how visual information comes in through the eye.  It travels down the optic nerve to the back of the brain.  And then, it is diverted into two streams.  The ventral stream goes to the temporal lobe there toward the bottom of the brain.  And this is where visual object perception and recognition takes place.  So, this is where you recognize your mother.  The other stream travels up toward the top of the brain to the parietal lobe. And this area of your brain allows your body to act upon what you're seeing.  And so, this is the part of the brain that allows you to give your mother a kiss.

Sara: Oh.

Lynne: So, anytime there's damage to any of this whole system or any part of the brain in between these systems, so they can't communicate with each other, there is, you know, a chance that your vision will not function correctly.  You know, we're gonna talk more about specific characteristics of CVI.  But one of them is, you know, the inability in a lot of kids to look at something and act upon it at the same time.  And so, that might be explained, you know, through this picture that those two areas of the brain aren't communicating with each other.  Okay. I found it really interesting when I did my research on CVI to kind of wrap my brain around the notion that, um, we...humans perceive vision as an external events, so that we tend to think, um, things are out there, and I'm looking at them because they're out there.

When actually, nothing is out there.  Your brain is using chemical processes to make a form of picture based on information that's coming into it. And so, vision actually is an internal event.  And so when we think about it that way and when we think about students, people with CVI, they're seeing everything that you and I are seeing. But, you know, with the lack of any other damage to the eye itself, all the information is going in to their brain.  They can see everything.  They're just not making that picture.  Their brain is not putting it together.  And that is the cause of the visual impairment.  Not that they can’t see.

Sara: Right. And that is the same with the other senses as well.  I mean, all of our senses happen inside of our heads and we only know the things we know about...We know where things are in space from previous experiences and integrating our senses.  And that's really something to think about, too, when you're thinking about kids with CVI because it's not...Sometimes it's not just the vision that isn't integrated, sometimes it's the whole slew of things that are not integrated, so...Not only that they have to integrate-their vision’s, not working so well with their other senses, but they may have to, you know, their other senses might a little scrambled as well.

Lynne: Right.  So, the old theory was that your brain was hard-wired.  And certain parts of your brain have certain function.  And if there's damage to any of those parts, then you lost that function forever.  You would never get it back.  However, recent research shows really clearly that the brain is not hard-wired at all.  There's a lot of, lot of research out there now about brain plasticity and how plastic your brain is.  Different parts of your brain take over really easily for other parts that used to do, you know, used to have a function.  In my research, I've read an article about an experiment where they did PET scans on people who just recently lost their vision and were learning Braille.  And it was almost instantaneous that these people's occipital lobe, that traditionally processes visual input was processing the tactile input when they were reading Braille.

Sara: Oh, that's neat.

Lynne; Yes. And they said the speed that which that part of the brain took over the tactile processing was so fast, that it was just like it was wired to do that.

Sara: Wow! That's cool.

Lynne: Yeah, it was really interesting.

There is a little video that we found on PBS.

Is that where it is?  Called Wired Science.  Based on the experience of Paul Bach-y-Rita back in the '80s, which is kind of goes on this very topic.  We're not gonna take time right now to show it to you, but...

Sara: But you can click on the link in your notes and you can look at that video.

Lynne: Right. It's very, very interesting.  And it goes along with this whole subject.

Sara: One of things, though, in that video that I don't want anybody to misled by is that there is, um, there is...  All of the examples given are for people who have previously had vision, I think.  And they had some visual knowledge, so it's...  We're not advocating that you put electrodes in your students' mouths.  Mostly, what we really want you to know and if you watch the video, you'll know what I'm talking about.  What we really wanted to emphasize is that the brain is plastic.  And that's what this video does.  Even though it does deal with some visual rewiring.  So, I just want you to really quickly look at this drawing.  And it was done by an eight-year-old who has cortical visual impairment.  And what's really interesting in this drawing is that the eyes and the hair are on the bottom and the mouth is on the top.  Can you see those two circles, kind of half circles on the side?

Those are the ears.  This child has drawn a face, but it's upside down.

It was right-side up to the child...  This is how the child drew it.  And the child described it and said that the eyes and the hair were down here. And so, this is the way a child who has CVI and can communicate through drawing and, you know, describing it, sees.  So, it's just really interesting because things can be really scrambled and, you know, their perception will be really different.

with Lynne McAlister and Sara Kitchen, Certified Teachers of the Visually Impaired.

Lynne: In the Individual CVI, certain characteristics show up.  These characteristics come from Christine Roman-Lanstzy's research. And, usually, a students will have all of these characteristics.

The ones that we are most familiar with...

Sara: Or to some degree, to some degree.

Lynne: Um, and we're just gonna go in order.