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Cooking With Disabilities: Part Three

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by Judith Benton, Susan Fahning & Jenna Umansky</P>

<P> (See Part 1 and Part 2 for instructor biographies)





<LI><A HREF="#intro">Introduction</A></LI>

<LI><A HREF="#taste">Taste</A></LI>

<LI><A HREF="#olf">Olfactory/Smell</A></LI>

<LI><A HREF="#tactile">Tactile/Touch</A></LI>

<LI><A HREF="#visual">Visual/Sight</A></LI>

<LI><A HREF="#aud">Auditory/Hearing</A></LI>

<LI><A HREF="#follow">Follow Up</A></LI>


<LI><A HREF="#nausea">NAUSEA</A></LI>






<P><A NAME="intro"><B>Introduction</B></A>

<P>Eating and the appreciation of food involve all five senses: taste, tactile, olfactory, visual and auditory. Visual, olfactory, and auditory relate to not only the eating process but also cooking. We rely on all five to give an indication of whether we will like the meal or not, the latter four even prior to tasting the item. As we cook, or see a meal presented to us, we look, sniff, and want to touch and taste. If one or more of your senses is not as acute as is typical, you will rely more on the other senses. You may question that the auditory sense relates to our subject, but we will talk about all five of the senses. If, for example, you cannot see or hear, you have learned to rely more on your other senses than most of us do. </P>

<P>Susan often thinks of that first bite of sweet corn on the cob, butter running down her arms and chin. For some, this sensation -- the crunch of the corn, the melted butter running down one's arms -- can be heaven on earth, for others a nightmare. Susan loves the crunch and tang of a great dill pickle. Better yet, is the added tang of a jalapeno dill pickle. Again, for some, these different sensations can be cause to run from the table. That snap one hears when one crunches a potato chip or corn chip is music to some, hell to others. Sensory integration problems can make cooking for a person with disabilities very difficult. </P>

<P>All of us experience our basic senses in different ways. We appreciate different tastes and textures, for example, than our neighbors. For some, one particular sense is so acute that it overwhelms all of the other senses. </P>

<P><A NAME="taste"><B>Taste</B></A>

<P>All people react to taste. Someone with neurological disorders often has a different mouth structure and this goes beyond oral motor difficulties. Tastebuds may be rearranged or vary from what is typical in terms of acuity. Susan's other two children have loved, or are learning to appreciate, the wide variety of tastes that she enjoys. This is not always the case and most obviously not with her daughter Heidi who was born with Angelman's syndrome. If Heidi does not like the taste of a particular food there is no conning her into trying just a bite again. Tang and spicy heat must be toned down for her. For others, tastebuds might be duller and spice, tang, etc., can be kicked up a notch. Medications can alter the basic taste one has in one's mouth or alter how food tastes. </P>

<P>Slow introduction to new tastes may be successful. While it is important not to get into a power struggle over eating, it is also important to reward the behavior of trying the new food. Have the reinforcer (favorite food) near by so the person knows they will be rewarded for trying something new. </P>

<P>People who have special needs often have a weakened or heightened sense of taste. Salty foods such as chips or pretzels may taste good solely because they have an actual taste of salt. Paying attention to seasoning, whether it is too much or too little, is important.</P>

<P>We also experience impaired taste when we have a cold. The next time your nose is congested notice how muted different flavors are.  Now try to imagine eating this way your whole life.</P>

<P><A NAME="olf"><B>Olfactory/Smell</B></A>

<P>We all react to smell -- the acuteness of our ability to smell and the degree that it affects our sense of taste varies. Our olfactory sense is closely related to our sense of taste, in more than physical proximity. If a food does not smell good to us, we may not venture to the next step to risk eating a bite and experiencing exactly how much we really do not like it. </P>

<P>Smells can greatly affect people with nausea. When one is nauseated the world of taste and smell can be turned upside down. Foods that have been appealing in the past may suddenly become revolting, increasing the distress of nausea. This may apply to people with disabilities; it may also apply to pregnant women. Susan had to forego her beloved bacon for eight months -- the length of one of her pregnancies -- not because of the taste of bacon but because of the smell. </P>

<P>When living with a condition that causes one to be frequently nauseated, even daily, diet and nutrition may soon suffer. It may be necessary to not only find  food, but also environmental smells that will be tolerated by the frequently nauseated person. Mild odors are usually more acceptable and less likely to interfere with the person's ability to eat. What qualifies as a mild odor will not be the same for everyone. You may need to cautiously experiment by first attempting to achieve a neutral olfactory environment -- as much as is possible.  You then can attempt to reintroduce smells of mild food odors that have been tolerated in the past. </P>

<P>The environmental measure may seem extreme, but if you have ever taken a whiff of sour milk and had your stomach lurch up into your throat, you can understand what a bad smell can do to your digestive system. Consider how you feel when driving through an area with a thick, unpleasant odor. The expression, "the air was so thick I could taste it," is appropriate in this context. The smell of particular foods while one is nauseated may affect the person´s desire or tolerance for that food in the future as well as the present. It can be helpful to identify an odor that is comforting to the person that they can have available to them in times of digestive distress.</P>

<P>Other situations to consider that relate to olfactory issues include the lack of olfactory sense to augment taste and to alert a person not to eat food that has spoiled. Our noses act as our personal guards when it comes to recognition of the proper or improper smell of food we plan to eat or food we are cooking. This can be a real concern for people who live alone. </P>

<P>Lacking the ability to smell food decreases the ability to taste it and the person may no longer enjoy food as much as they did before this became a problem. Lack of the olfactory sense is another circumstance that connects issues of texture and eating. The less one can smell and taste food the more important the feel of food in their mouth may become.</P>

<P>Judith's father lost his olfactory sense and most of his ability to taste through a combination of horrible sinus treatments as a child in the 1930s and a chemical accident in the 1940s. One of his favorite things to eat was a peanut butter-jelly-cheese-mayonnaise-and lettuce sandwich. The texture was perfect for him; he ate one nearly every day for years. He would never consider eating a pizza again after his first bite of one -- it tasted and felt like cardboard to him. Mashed potatoes and baked potatoes were good to have on the menu; rice was not. Steak was sometimes tolerable, but a medium rare hamburger was his favorite choice. Chicken was eyed with suspicion and soups were rarely the best option, unless it was canned tomato soup. Now pie -- that was his shining icon in the food world. If he could find a place with hot coffee (no matter what that tasted like of course) and a good cream pie or apple pie with a soft filling you could bet he would be there every day for his afternoon break. Somehow, her mom managed to cook around him and still feed them good and tasty meals. Judith owes her early love of Mexican food to her father's inability to smell and taste. He took the family to the spiciest places he could find in the mid-50s. He could depend on spicy heat, so he could taste a little of something and there were many choices for good mushy food. </P>

<P><A NAME="tactile"><B>Tactile/Touch</B></A>

<P>There are two aspects to touch -- finger-feel and mouth-feel. If you could not see or hear when presented with a meal, picking up a piece of food, pinching it, or squishing it would give you good clues as to what you are going to eat. For example, when presented with an unfamiliar food, if Heidi cannot touch and squish it, she will not eat it. She relies on her tactile sense to let her know if she might be able to trust a food. One of the autistic children Susan knows cannot stand to be touched by any liquid unless it is drunk from a glass. For this child, the idea that liquid would touch any part of his skin or body other than the interior of the mouth is enough to cause a breakdown. </P>

<P>Likewise, mouth-feel can be especially important for someone with an altered sensory system. Many of us like a variety of textures -- many people do not. Susan has known far more people with a compromised sensory system that like squishy/mushy-textured food than people with sensory issues that prefer crunchy or chewy food. For some individuals oral motor problems may be more of a determining factor than sensory issues, but it can be difficult to ascertain which the real culprit is. </P>

<P><A NAME="visual"><B>Visual/Sight</B></A>

<P>All of us like familiar things. Some of us also appreciate the unfamiliar. For some people, the appearance of a particular container can elicit excitement. For example, Heidi knows well in which bowl mom normally makes and serves potato salad. Should she see that container in the refrigerator, she is happy. Should that container be opened and not produce potato salad, she is confused. <BR>

Some people have strong color associations. With Heidi, there is the love of white and yellow -- eggs, mayonnaise, potatoes, and cheese. Imagine her surprise when that piece of white is a clove of garlic -- or a spoonful of horseradish. </P>

<P>Visual associations can be deceiving. Some may associate the color red with a tomato. If they do not like tomatoes, it can be difficult to try something else red that is nice and sweet and juicy -- like a homegrown strawberry. </P>

<P>For a person with color issues or one who may not see very well the presentation of food may be extremely important. We all like our food to look appetizing, but for some of us presentation may go beyond that aesthetic desire into need. Do you serve food on a white plate? Must you serve only on darker dishes that do not glare at the eater? Does all the food need to be clearly separated on the dish or in individual bowls when served, so the diner can know what she or he is eating? What kind of glass or cup does the visually impaired diner need? In what location should it be placed to assure she/he might drink without spilling it on herself/himself or others? Just as it is not productive for Heidi to have her favorite (obsession) foods in front of her on the table because she can see them, it also may not be safe or considerate to have food on the table that the visually impaired diner cannot see. </P>

<P><A NAME="aud"><B>Auditory/Hearing</B></A>

<P>The sizzle of bacon. The pop, pop, pop of popcorn. If you have a severely acute auditory sense, these sounds may make you swear off these foods forever. Likewise, perhaps the reason a person will not eat crunchy foods has nothing to do with oral motor issues. Go to a dark, silent room. Take a bite out of a potato chip. Before the salt hits your tastebuds, if you are focused, you will hear a noise or perhaps feel vibrations that may or may not be pleasant. Susan remembers well the first time Heidi ate something crunchy -- a Frito. The salt intrigued her, but the first thing we noticed was a shudder. She could not focus on the food for the noise. Her OT advised trying Keebler grahams to introduce her to crunchy foods. They are not as hard as other graham crackers, and quickly mush in her mouth. After a few months taking tentative bites of these grahams, she gradually acclimated to softly-crunchy and was able to move on to other things.</P>

<P>Crunchy food is often a problem for special needs children whether they are hearing or deaf. The sensation, or vibration, that occurs when eating crunchy or crispy foods can cause discomfort. They feel the vibration throughout their body. Taste does not matter. The sensation of eating is just too difficult.</P>

<P>Being deaf, or having a profound hearing loss, does not eliminate the auditory aspect of food for a person. The vibrations perceived by the person may startle them. Judith loves carrots, but since she has become deaf they startle her when eaten raw, especially if they are ingredients in a dish and not visually apparent to her. She prepares herself for the crunch she no longer hears but is now sensitive to the fact that it shakes her jaws and vibrates through her head. </P>

<P>What we cook and how we cook it, whether for ourselves or for someone in our care, is altered when the person has sensory issues. If there is concern for dietary and nutritional consumption, or behavioral issues, it is important to find ways to include foods that may have been refused. It is not necessary to avoid the raw, crisper vegetables and fruits such as carrots, cauliflower, yicama, and apples. Grate or thinly slice crisper varieties for raw addition to your recipes. Matchstick carrots may also be a great substitute for eating larger pieces of raw carrots -- depending on oral motor capabilities -- as they are thin enough to not feel brittle. A good way to acclimate to foods gradually with a harder texture and louder bite is to increase the size of the pieces as tolerance is increased. </P>

<P>Disabilities that affect one or more of our basic senses may heighten the others affecting our desire or tolerance for food. In the case of olfactory and taste the two senses augment each other intricately. The degree of acuteness of one will directly affect the heightening or dulling of the other. All of our senses are interrelated and together they form our perception of the world. A person with food sensory issues has a concept of cooking and eating that varies more than is typical. Whether in ourselves or in those we care for it is important to understand the differences and needs that exist -- not to become typical but to assure that good nutrition, as well as increased pleasure in eating is achieved.</P>

<P><A NAME="follow"><B>Follow Up</B></A>

<P>For a person whose senses function as they should it is hard to imagine eating with diminished ones. To understand fully what it is like try eating a meal without one of your senses. Some senses you cannot “turn off’ but others you can. Eat a meal with a blindfold around your eyes, earplugs in your ears, or with a pinched nose. Is food as pleasurable if you cannot see, smell, or taste it? Could you spend your life eating this way? What can you do to make up for your lost senses? What are you experiencing that you never noticed before?</P>



<P><A NAME="nausea"><B>NAUSEA</B></A>


<P>Many medical conditions, including vestibular disorders, can cause a person to spend a considerable amount of their waking hours with a queasy stomach or full-blown nausea and vomiting. We hope to suggest some foods and drink that may help you through these periods. Pregnancy is not an illness or a disability. However, for an expectant woman who is living through weeks or months of nausea this is still a great concern. It is important to not allow yourself to become dehydrated, whatever the cause. Please consult your doctor if you are unable to maintain hydration.</P>


Many people use food to soothe them when they are ill. When food is no longer soothing because of nausea, it is important to find other ways to provide comfort to yourself. Music, hot baths or showers, and long walks are all easy ways to comfort you. If possible, this is also an important time to treat yourself to something special. Can't handle eating anything but bland crackers? Buy a box of bread sticks imported from Italy. Can't drink anything but herbal tea? Stock your pantry with a wide variety from different countries. Use this as an excuse to find your new favorite tea.</P>

<P>Nausea is also a side affect that is common with many different medications. There are varieties of ways to combat the nausea. Clear liquids are an essential key. Peppermint, chamomile, fennel, and green tea are all good stomach soothers. </P>

<P>Peppermint tea or a few drops of the essential oil in a cup of water can be very helpful. If you cannot keep the tea or dilution down it is good to keep a tray of ice cubes in the freezer marked "HELP!" made with the tea or with a dropper of peppermint oil in the water. You may add a touch of sugar or your approved sweetener to the water if you wish. Sometimes ice chips will go down (even stay down) when nothing else will; take it slowly. Sucking on real peppermint candy can also be good, and the sugar is an added bonus for combating the nausea.  </P>

<P>Chamomile tea, ginger tea, and raspberry leaf tea are mild with calmative properties for the stomach. Frozen for ice chips, the tea may help you to maintain a level of hydration while it is difficult to keep anything in your stomach. Once that is accomplished without distress you can gradually begin to sip the tea in a hot or chilled form. </P>

<P>Soothing ginger is versatile. Ginger tea can easily be made by steeping a few slices in hot water. Adding honey to the tea creates a sweet drink with medicinal benefits. Slices of ginger can also be added when making chicken stock. The ginger stock can then be used to make ginger rice. Slice pickled ginger into thin strips and add to the rice.</P>

<P>Avoid salt by all means, and stick to the "clear food group" when starting back on the road to a meal; no milk or cream soups, sauces, etc., and beware of fats added to your diet at this point. </P>

<P>Make your own gelatin (or have someone make it for you) using real fruit juices which are more nutritious and beneficial than the old standard, convenient product on the grocery shelf.  </P>

<P>Keeping low, low-sodium or sodium-free homemade stocks (chicken, beef, and vegetable stock, or mushroom broth is also great) on hand in the freezer to heat up when you reach that stage is also a real help. The addition of a cut apple (cored) to the vegetables you are using for stock can ease the digestion and although you do not taste the apple as such, it has a nice way of pulling the flavors together.  </P>

<P>Eating while nauseous is a challenge but one you can accomplish.  After a while, bland foods become dull and boring. However, with a little creativity you can add flavor and texture to your food.</P>

<P>Once you reach the stage you are able to keep down something solid, continue to choose from the “clear food group,’ avoiding salt, fats, and dairy. Now you can kick your stock up to the next level. The addition of a little rice, noodles, or small-diced potato to your low-sodium stock or broth will help you to readjust to solid foods.  </P>

<P>Crackers such as saltines are another way to add crunch to a simple diet. After a few days though, they can become bland or boring. Switch to Italian bread sticks or oyster crackers for variety. Often having a little food in your stomach can help relieve nausea.</P>

<P>As you continue to feel better, you may add more small-diced vegetables to your broth or stock. Matchstick carrots are wonderfully convenient to use whether nauseated or not. Mashed white or sweet potatoes, plain rice, and simple pasta can also be included in your diet as you progress. Stewed or sautéed fruits (use no-fat cooking spray) such as apples and peaches may also be appropriate at this stage; applesauce is one choice and may be tolerated better if it is warmed. Your stomach will let you know.  </P>

<P>Use chicken stock to add flavor to potatoes. Potatoes are binding, as long as they are not flavored with butter or sour cream. Boil peeled potatoes in chicken stock. Then, when mashing the potatoes use chicken stock instead of any dairy or butter. Depending on your tolerance, other seasonings can be added but should be used sparingly.</P>

<P>If you can eat soy, the soy cheeses can be tolerated much sooner than dairy-based cheeses and are delicious and nutritious when added to rice, potatoes, or pasta.   </P>

<P>Recovering from being sick or learning to live with a long-term illness is important. When one part of the body is not functioning well it is important to make sure that you stay as healthy as possible; eating right is a key piece in the total picture. Give yourself a break. Move slowly when you must move at all. This is an appropriate time to accept help from friends and family.  <BR>




<P>Almost all of us have taken medication at one time or another. For many of us, it has been the occasional aspirin, ibuprofen, or acetaminophen for the occasional hangover or fever, or antibiotics for an ear infection. For some, however, medication must be taken daily, making the difference between a life worth living and just a life. If Susan´s daughter Heidi does not take her anti-epilepsy drugs (AEDs), it makes the difference between a little girl who can walk and communicate and one who is having hundreds of seizures every day. </P>

<P>Finding the right medication combination can make life wonderful, fun, energizing, and exciting. Finding the right medication can mean accomplishing all that you desire; it can mean finding your life. Living with the medications that you must take is not always easy. Those of us that must adhere to a daily medication schedule have made adjustments in our lives -- to the medication, to the medical conditions, and to the changes these have brought.</P>

<P>So, just how do these “must take daily’ medications affect a person's food life? </P>



Some medications can cause side effects or require us to adhere to certain dietary changes and restrictions that create problems concerning nutrition and our ability to eat. A few of the more common side effects related to our intake of food are nausea, constipation, diarrhea, and dizziness. Dietary restrictions or additional dietary requirements may force us to change our eating habits and the food we choose to eat. Nausea due to medical conditions may also prevent one from being able to ingest the medication we need as well as the food our bodies need to stay healthy. This creates a situation that further complicates the relation of food and medication in one‘s life.</P>

<P>Often meds require food restrictions such as no dairy, no artificial sweeteners, no grapefruit or grapefruit juice, and no alcohol. As noted in Dietary Restrictions of Part I of this course -- there are now studies that have shown some alcoholic content may remain even after the alcohol has been well cooked. If it is necessary for you to remain 100 percent alcohol-free this is an essential consideration if you like to cook with wine, beer, or other alcohol. Additionally, some medications require us to increase vitamins or minerals. These additions can be difficult to tolerate for an already unsound digestive system. It may be possible for you to go the natural route. Try to eat foods that deliver the additional requirements such as bananas for added potassium, or dairy products and broccoli for calcium, or drink calcium-fortified juices, as opposed to taking more medication.<BR>


For many, meds can alter the basic "taste" in one´s mouth. Susan well remembers a few days on codeine that left a sweet taste in her mouth. It also altered how food tasted. Judith recalls a particularly distasteful antibiotic that affected her ability to enjoy eating.</P>

<P>Dispensing medication to children may be problematic if they are unable to swallow tablets or pills. Some of these meds may be liquid and are administered fairly easily with an oral syringe (more accurate than using a teaspoon). Others may need to be crushed or, in the case of one of Heidi´s meds, comes in a granular form. These are usually put on a spoon with a “sticky’ food item or mixed into food. Behavioral problems may require that they be put on something that is not a regular food item that is a favorite of the child´s. Heidi´s “sprinkles’ are put onto a teaspoon of syrup – it is nice and sticky, and not a food item that she normally eats solo. Susan has made it a point to taste all of the medication that Heidi takes so she is aware of what they taste like.</P>

<P>Some medications require you take them with food. Most should be taken with copious amounts of water. Some may cause constipation; some may have the opposite affect. In the case of the former, lots of water and fiber may do the trick. If not, consultation with the prescribing physician is the best course of action. It should be noted that there are many herbal and homeopathic remedies available. One should always consult the physician or pharmacist before going this route as many medications, herbs, etc. may interact with each other. </P>

<P>Also, note that if one is taking medication it is important to check with the pharmacist about food additives and artificial sweeteners. There is some indication that with many neurological medications, artificial sweeteners may interfere with the effectiveness of the medication. </P>

<P>Maintaining a schedule of medication around diet and the ability to eat can be problematic. Certain meds can cause shakiness, which leads to feeding and eating difficulties. Getting a spoon full of soup or cereal with milk into the person´s mouth may be nearly impossible. In some cases caloric needs are higher than average. It is important to pack good calories into a person who may not be able to eat or have the desire to eat. This is common in the very elderly as well as children. If possible, fluids can be taken through a straw followed by foods that will stay in the spoon, or by finger foods appropriate for the person´s oral motor control. If they have trouble chewing, softer foods such as bread, noodles, cheese, diced potatoes, and soft, diced vegetables and fruits may be good. Protein is a major concern and  do not discount the benefits of good fats, which can be obtained through food sources such as soy products, olive oil, nuts, and some fish.</P>

<P>While many meds should be taken with food, if one is nauseated or vomiting it can be a challenge to keep medication down as well as any food. This is also true for anti-nausea medications -- making it difficult to control severe nausea and vomiting if one cannot keep the medication in one´s stomach long enough for it to take effect. Other delivery options for anti-nausea meds can be considered in this case. There are measures you can take to help yourself through these periods. Please refer to the Nausea section for some helpful suggestions. Be certain to inform the treating physician of any severe problems or dehydration.</P>

<P>Follow up</P>

<P>All three instructors plan to be online daily for several hours throughout the run of the course and to be available for Q&A here.</P>


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