COOKING WITH DISABILITIES
PART TWO: COOKING FOR A PERSON WITH DISABILITIES
My name is Susan Fahning (Snowangel). I have been married for almost 23 years. Paul and I have three children (Diana age 13, Heidi age 9, Peter age 8) and live in the Twin Cities (Minnesota, USA). My cooking experience is all self-taught. As a young child, my parents uprooted us from the land of Midwestern casseroles (complete with cream of something soup) and plopped us in Thailand and the land of larb and curry. My taste buds never looked back.
Nothing I had ever done prepared me for the summer of 1994, when Heidi was born. A child changes your life, but a child with disabilities really exacerbates those changes.
Heidi has Angelman Syndrome (AS), a fairly rare genetic syndrome (but not hereditary in her case). The syndrome was not identified until the mid-60´s and the genetic correlation was made in 1985. It is named after Harry Angelman. Characteristics of AS include non-verbal behavior; gross, fine and oral motor deficiencies; epilepsy (in Heidi´s case, under control with a significant amount of medication), and mental retardation.
In short, Heidi has all of what you think you don't want, but is an adorable little girl, almost always happy with a beautiful smile. She is extremely social and very charming. Through her, we have learned to be extremely inventive. Knowing about Heidi, and the fact that we live in Minnesota, explains my EG "handle".
We all have the basic senses. Many people with disabilities, like Heidi, have heightened sensory issues. Heidi's taste and feel-of-food senses are heightened. Food meets many needs for her – taste, feel, and smell.
I joined the ranks of stay-at-home moms just before my youngest went off to kindergarten, given the logistics of child care of a child with disabilities.
All of us, as subscribers to eGullet, are driven here by a love of food. Food is one of the most basic of necessities. Food involves all of our senses – taste, feel, color, smell and sound. As such, it fills some of the most sensual of needs. Just because a person cannot verbally express a love of food, cook the food, need adaptive equipment or positioning, or cannot even make appropriate choices of food, does not diminish the love of food. In fact, for many of this population, those with neurological disorders, food is one of the most motivating and enjoyable aspects of life.
Disabilities come in all varieties. We use terminology during our course to refer to some of the associated conditions and we have selected the terminology not because it is necessarily politically correct, but succinct and generally understood. My focus is a little girl who has Angelman Syndrome. As such, she is completely non-verbal, severely mentally retarded, with vestibular issues, and gross, fine and oral motor limitations. Many of the aspects that make Heidi “Heidi’ are also common to people with autism, ADHD, ADD, Alzheimer´s, mental illness, MS, etc. There is no manual that comes with a person with disabilities so we have learned to "think outside the box".
Lest you think that the following does not apply to you, I am reminded of a friend: She was amazed at how many of the techniques and equipment I utilize with Heidi, she ultimately used in the care of a very elderly relative with Alzheimer's who had almost no teeth. This person also has many oral motor limitations and sensory and communication problems which greatly influence meal time and eating.
A person with autism may not be able to verbalize wants and needs and may have some serious sensory integration problems. A person who has had a stroke may not be able to verbalize, may have oral motor limitations and may require adaptive eating and positioning equipment. A person with Parkinson's may require adaptive equipment. As our parents age, many of us will be providing care for an elderly person who may have Alzheimer's or dementia, or perhaps has had a stroke. Many of the things we do for Heidi may apply to you in the future.
Heidi is not able to handle pieces of meat that are not ground or finely shredded, nor is she able to take a bite out of a sandwich due to her mouth structure and oral muscle tone. For example, press on that area between your upper lip and nose -- I bet yours is "spongey". Heidi's is paper-thin. Stick out your tongue and take it between your thumb and forefinger; it's probably pretty dense. Heidi's is thick and marshmallowey.
These things come into play when it comes to feeding Heidi. Her teeth are very widely spaced, and given her dental structure, it is impossible for her to take a bite out of a sandwich. Things just don't meet up right, and since she often sucks on her hands (oral motor stimulation and behavioral issues), corrective orthodontia is not a consideration. Crunchy foods can be difficult for many people to masticate and some people with sensory issues do not like the auditory aspect of these kinds of food.
In the case of our family, we must weigh Heidi's needs with the needs of the rest of our children – as well as us, the parents. Family health is important.
Although she is testing at about an 8 to 18 month age level, it is important to our two other children that she appears as normal as possible. Also, with Heidi, we cannot use that old parental threat, "if you don't eat your lima beans, you won't get dessert. Heidi has not reached that developmental level. My Aunt Laura at the age of 95 with dementia, could not understand this form of reasoning either.
People with disabilities can bring different things to the table. It is not uncommon for people with some disabilities to have problems with reflux and/or constipation, because motor tone affects not only limbs, but also internal systems. If a person has reflux and/or constipation, consultation with a physician is the best course of action. I cannot speak to the complications that a J- or G-tube adds. And, medications and the fact that Heidi cannot close her mouth (dehydration!) can exacerbate constipation. Lots of water and ground flax seed to the rescue!
Heidi takes a tremendous amount of neurological medication every day for seizure control, so I avoid feeding her food that contains a lot of artificial ingredients. This can be very important. The pharmacist has also told us that there is some indication that artificial sweeteners can interfere with the effectiveness of her anti-epilepsy drugs, so there is no "diet" anything in our house, and her personal information sheet that she has in her backpack reinforces this. I also check with her pharmacist before giving her any over-the-counter medications.
A large part of working with and for a person with disabilities who cannot vocalize specific or appropriate wants, desires, and needs is learning what he/she is saying in a variety of ways. We are so used to people we deal with verbalizing things that it can be hard to listen to those who cannot speak. We have learned to make things convenient for Heidi so she can express her needs and desires. Just because a person cannot talk does not mean she/he has nothing to say
There is no standard list of equipment for people with disabilities. We were fortunate that Heidi was plugged into the school system when she was 18 months old, so we had help from professionals who had seen and done it all. Children with disabilities are eligible for school-provided services. Children with disabilities are usually home-based until age 3, then center-based from 3 to 5, at which point they enter kindergarten.
Most often, the local public health service is the first stop – they evaluate children and get families of children with disabilities into the school system. School personnel, along with an Internet support group for caregivers of kids like Heidi, clued us in to different pieces of equipment, catalogues, etc.
The internet is a terrific resource for not only information on specific disabilities, but also for equipment, services and support groups. For many people with disabilities, positioning and eating equipment can be very important. Most of us can stand while eating a pulled pork sandwich and a pile of coleslaw with a cheap plastic fork off a greasy, soggy, floppy cheap paper plate. There are many who cannot do this.
In the case of Heidi, the following items have, at one time or another, been invaluable:
Yellow Scoop Dish. Essential for someone who can use a utensil, but has trouble getting small amounts of food on a spoon. Unlike the rest of our family, she is unable to use her finger or a knife to help get food onto a spoon or fork. This bowl has a non-skid base, which can be essential. For Heidi, we keep the built up side closest to her.
Maroon Spoon. This was Heidi's first eating utensil. It has a wide handle and a very shallow bowl, which is good for those learning to eat off a spoon and those without the oral motor skills to "clean out" a spoon bowl that has some depth.
Sure Hand Utensils. You can purchase these from many places. We opted not to purchase the built-up utensils, but instead just wrapped pipe insulation, cut to length around our flatware. We secured it with Velcro or duct tape. Some people require weighted utensils, others utensils with plastic coated spoon bowls and fork tines. The following company features a very complete line of adaptive equipment sammonspreston. They have a good selection of adaptive eating equipment. There are many other companies that carry these same things; I know I have had great service from Sammons Preston.
Angled spoon. Although one can purchase these, we just took a cheap metal spoon (I think we got it in the mail as some sort of buy-me promo), put it in the vise grip and bent. It worked very well when she needed it.
Nosey Cutout Tumbler. Most kids learn to drink out of an open cup on their own (with some serious clean up effort on the part of the caregiver). Not so with all children and this cup really allowed us to see what was going on with her mouth when she was learning to drink out of a cup. Again, this is available from Sammons Preston or a variety of other companies.
Tumblers (plastic ones). When Heidi graduated from hand-over-hand assistance with the nosey tumbler, we found that some old Tupperware plastic tumblers (on the bottom 116-## -- ## depending on color) did the trick. We found these by accident, and since they are discontinued, bought a whole many on eBay. It took us a long time to find the right beverage vehicle for Heidi. While searching, places like the Salvation Army or Goodwill are wonderful. There is usually a wide variety of different utensils, tumblers, etc. available at prices that make it easy to use them as "try me" cups.
Note: There are many people who require food and beverage thickeners because of oral motor problem that limit their ability to get a thin beverage from lip down the throat.
Chair: Many people with disabilities also have a vestibular disorder – most easily defined as a balance or grounding problem. In Heidi's case, it is necessary that her feet be firmly planted on a surface in order to attend to task -- be it at school, at church, on the toilet, or eating. The Tripp Trapp chair is a wonderful solution for Heidi. She is firmly supported by the seat and footrest (both adjustable), and best of all, we can belt Little Miss Social into her chair – for the comfort of other diners and her safety.
I include the following web site because I believe it best shows the Tripp Trapp chair. The manufacturer's web site is Stokke's Kinderzeat. This is an extremely well- made, stable chair, easy to clean, and looks cool to boot. It will last her for many years, growing with her to adulthood. It is a comfortable chair for children and adults. You can see how much concentration she needs to eat.
Bibs: At home, we use a bib for Heidi if the food is of the major stain variety, otherwise not. In a restaurant, we never use a bib because it makes our other children self-conscious.
Food Grinders: Can be essential for people with oral motor difficulties. Some of us can eat a hunk of steak, a piece of broccoli stem, a chewy piece of bread crust. Some people do not have the physical ability to do so. When I need to grind food for Heidi at home I usually use my Cuisinart mini-prep. When out-and-about, the Happy Baby Food Grinder can be especially helpful.
Communication: At this time, Heidi is not ready for an augmentative communication device other than the BIGmack (not a sandwich). She is also using a modified PECS system with Boardmaker symbols. PECS is a communication system originally devised for children with autism and it goes hand-in-hand with Boardmaker. Boardmaker is a computer program specifically designed to print "pictures" of things. The pictures are line drawings which can be printed in either black-and-white or in color and can be very specific (a picture of a plate of spaghetti) or more general, as in the lunch symbol, which depicts a plate with a sandwich, an apple, and a glass of beverage.
The intent of PECS is that the autistic child will make a selection of items offered via the printed symbols, present them to the "giver" and receive the desired item in return. The goal is increased socialization and interaction with a person. In the case of a very social child like Heidi, the system is modified. Heidi is not required to actually give the symbol of the selected item to the presenter, she is merely asked to make an indication since she is so social. At snack time, she requests food by indicating the “lunch’ symbol and beverage by requesting the "drink" symbol. Until she is more proficient with symbols, we (I, Paul, and her teachers) have chosen not to let her choose food by using food-specific Boardmaker symbols – she just wants everything offered by the symbols.
If using PECS symbols for specific food items, it is important to make sure that the food items are available. Family mealtime is too chaotic to permit use of the Big Mack with Boardmaker symbols at this time, so we only use it for snacks.
To aid in communication, I keep her plastic glasses in an under-counter drawer that she can easily open so when she is thirsty, she will bring one of us a glass. We recently moved, and to help her learn where her things are, I left the drawer halfway open for several days so she didn´t have to search. The fridge items I offer her for a snack are all in a drawer together so that, with my supervision, she can make her own choice. "Obsession" foods (more about those later) are hidden in the fridge at the back of the upper shelves. We label a lot of our drawers and cupboards with Boardmaker symbols to reinforce the communication system. Make it simple for a person who cannot communicate verbally to make her/his needs known.
Note: Heidi no longer needs to use built up or bent utensils, but does need the scoop bowl and Tupperware glasses. We have many of each of these items and make sure to always have one of each in each car, two of each at the cabin, and one at each of her grandparents. Mealtime (at someone´s home or a restaurant) is much easier for her if she has "her" things. Positioning and equipment can make a world of difference. Most people with neurological disorders require consistency and routine.
Kitchen safety: The opportunity to teach "hot" came naturally when Heidi touched a pan that was hot enough to cause a cry, but not hot enough to blister. We continually reinforce this verbally whenever I am cooking and when we serve hot food. She has learned this concept the hard way (we all remember hot pizza cheese on the roof of our mouths!).
Heidi is not very tall (yet), so upper cupboards are not an issue at this point, but when the time comes, we will latch them, as we have done with our refrigerator. Heidi loves to go and open the fridge, grab things and leave the door open. She will also try and grab things (juice jug) that she is unable to hold. After cleaning up several large (not to mention sticky) spills, we put a latch on the fridge.
Our refrigerator is a side-by-side with handles on the refrigerator and freezer side that are open. We use something we call Bunny Ears that require two hands to open the latch and are readily available in any large drug or discount store in the baby safety aid area. She has not played with stove knobs -- should they fascinate her, we will use knob covers (also available in baby safety areas). My knife block is wall-mounted and currently out of reach.
A caregiver for a person with Prader Willi Syndrome will probably have to padlock all cupboards and the refrigerator and may even have to install a deadbolt lock on the kitchen door.
The kitchen in our new house is galley-style, with only one entrance. This can be an ideal setting because it can be easy to gate off, keeping someone out of the range of a hot stove.
When I am preparing a meal, Heidi is usually more interested in watching TV or looking for Daddy to come home than helping to cook. On the occasion that she wants to be right in on the cooking action, I bring her chair over and strap her in.
If Heidi had her way, she would eat nothing other than potato salad, cheese, eggs, butter, and bananas (obsession foods). These are all nice, mushy foods, requiring little mastication. Reality is that no one else in our family could subsist on this diet and nutritionally she needs more variety.
As it is good to introduce foods with different textures to encourage oral motor development, one of the challenges has been to incorporate her oral motor/muscle limitations into the diet of a family who likes meat, crunchy foods, smooth foods, sharp-tasting foods – a diverse range of tastes and textures. Mouth feel is important to all of us. But, mouth feel is unbelievably important to people like Heidi who have sensory integration problems.
Color of food also comes into play. She prefers white or yellow food, eschewing anything red. She does like red fruit, but one always has to stuff that first mouthful into her mouth (with the assistance of a hand and head-holder) to remind her just how wonderful a local strawberry or homegrown raspberry can be. Through some creative thinking (and a lot of mincing and burying new or different foods into familiar favorites), we have greatly expanded the selection of what she will eat.
Let's walk through a typical day in our household.
Setting notes: For someone with poor fine motor skills or tremors, placemats, unless plastic with a somewhat sticky back can easily become flying saucers. Likewise, legs can become entabled in table clothes -- resulting in everything on the floor.
It is not uncommon for people with neurological disorders to obsess on things. In our case, if we are having something that requires butter or sour cream, it is applied before the meal, otherwise the focus of Heidi is on the butter and sour cream and she won't eat anything else. Although we prefer to eat family style, certain foods are plated. Potato salad comes to mind or else she spends her entire meal obsessing on The Big Bowl of Potato Salad. One of the students in her class obsesses on everyone else's food.
Atmosphere: It can be important that mealtime be calm and quiet. Heidi, and many other people with disabilities work far harder to get the food to their mouths and masticate than most of us do. So, in our house, there is no loud discussions and no television. There might some muted, calm music. We have noticed that at large family gatherings, the chaos makes it far harder for Heidi to attend to task. At school, her class's lunch is timed to coincide with the least amount of chaos in the lunchroom.
Breakfast : On school days, Heidi eats breakfast at school (occupational therapy during breakfast is a part of her IEP (Individual Education Plan, a comprehensive plan that outlines specific goals and methods to be used to achieve these). So before she gets on the bus, she gets her morning medicine followed by a glass of orange juice.
Dispensing medication to a person who cannot swallow pills can be challenging and often involve food. One of her meds is a nasty tasting liquid. We tried putting it in with juice (cranberry because of the sharp taste) and all that accomplished was to give her a bad attitude about beverages. She went four days without drinking anything, so we now give it to her in an oral syringe. The other med comes in the form of granules, which are delivered on top of syrup in a teaspoon. I have made it a point to taste every medication she takes so I know what she is experiencing.
On weekends, I always fix a big breakfast – pancakes or waffles, bacon or sausage, eggs, toast, or some combination thereof. This is her favorite meal of the day and there is enough variety to satisfy everyone. It is generally the easiest meal for people with oral or fine motor problems. The food is easy to spoon and generally soft.
We cut up her pancakes, waffles, over-easy eggs on toast, etc. so she can use her spoon. After almost nine years of an aversion to bacon, I am proud to say that she is now eating my favorite food! I crumble hers up for her so she can use her spoon. With pancakes, waffles, or toast, butter is applied before they arrive at the table.
If cereal is in order for breakfast, her´s is eaten with yogurt (plain, thinned a little bit with milk). If we just use milk, the milk just runs down her chin since she is unable to close her mouth. Muffins are a favorite in our house, complete with blueberries from The Cabin. Since muffins tend to be crumbly, in order to minimize mess, hers are broken up in her bowl and moistened with milk (or cream) so she can scoop them easily with her spoon.
Lunch : On school days, Heidi takes her lunch every day. Always a sandwich (cheese and mayo or peanut butter and jelly) unless I have leftover frittata or deviled eggs (who ever has leftovers of the latter?) and a banana or grapes.
The lunchroom is chaotic enough that consistency is important. Sometimes I´ll add a cookie or a couple of graham crackers. I cut up her sandwich as a courtesy to the school staff. School staff cut up her banana. She gets milk from school. Since she has trouble sipping out of a straw, hers is poured into one of her glasses.
Lunch on non-school days depends on how much breakfast she has eaten (some mornings she will eat a dozen pancakes and not really be hungry for lunch). If she is hungry, I will fix sandwiches (cheese, sliced turkey breast, chicken salad, or egg salad) and offer fruit. Sometimes a "cheesy roll-up" – flour tortilla, painted with refried beans, topped with cheese and either micro waved and rolled up or in a skillet and topped with another tortilla fried in butter. This is another easy meal.
If she were able to take a bite out of a sandwich, I would make sure that her sandwich was not too thick. I would also make sure that it wasn't too slippery assuring that the ingredients stay between the bread. This is important for a person with limited fine motor skills or tremors.
Snacks : Fruit, cheesy roll-up, a hard cooked egg, depending on what we have at home.
Dinner : This can be the most challenging meal of the day for a family incorporating needs of a disabled person as it is the most formal meal of the day, and often the only meal we eat regularly at the table together. Although I really object to making a separate meal for Heidi, I will make some concessions.
If we want to have steak, baked potatoes, and salad, for example, we modify. Heidi cannot eat chewy meat. Nor can we have butter and sour cream on the table for the baked potatoes, so I prepare twice-baked potatoes. Although more time consuming to make, it eliminates the "during meal" prep -- cutting, mushing, buttering. With a twice baked potato (or mashed potato), she can just scoop and eat, and either Paul or I can get to the business of eating our meals.
I aim to make meals that require as little of our time cutting once we sit at the table so that our meals don't get cold. Since she will not eat steak, if I have some leftover chicken, I will shred it and tuck it into her potato or tuck in a hard cooked egg (toothpick in her potato halves identify them). Salad for many must be finely chopped, so I will chop a portion for her and reserve it in a separate dish and make sure that her portion has white salad dressing (ranch, a big favorite). This is another opportunity for protein -- a handful of canned beans, a little shredded chicken, a chopped hard cooked egg.
If we're having a cooked green veggie, I will often cook some of it as I'm doing potatoes and chop it finely and hide it into her potato halves. Or, I save leftover cooked veggies for "tuck-ins." If we want pasta with Bolognese sauce, I use a thicker noodle (fettucini or linguine). No matter how finely we chop spaghetti, the noodles end up all over the floor. Her pasta, in this case, is buttered with Parmesan cheese mixed in. I will add a hardboiled egg, shredded chicken or some beans (cannelini or navy) to her pasta for added protein. I cut the pasta very finely so it stays on the spoon and gets into her mouth.
I also have a repertoire of dishes that will please everyone – carbonarra is a big hit with all members of the family, and is a great fallback dish, as is frittata when I have little bits of leftovers that need to be used up. Another favorite is chicken pot pie or chicken and noodles. I did a Zuni Cafe; mock porchetta recently, and I minced the pork for her and mixed it with the garlic-mashed potatoes.
On a night when we want a curry (Thai), her rice contains either beans or chopped hard cooked eggs, and might be glued together with a bit of cheese, since rice can be messy when one does not have good fine motor control. Roasted cauliflower is another hit in our family, and I make sure she gets the least brown pieces and she is happy. Sometimes I will reserve some of the raw cauliflower and add it to the pan later.
The rule of thumb here is to try it and then do what it takes to make it work. Easter Sunday was ham, scalloped potatoes, roasted carrots, salad, green beans, and asparagus. I cut up carrots and minced some ham and tucked them in with the potatoes and all ate well. Although Heidi does not like tomatoes, last summer I got some sweet tiny orange ones at the farmer's market. Because of the super sweet flavor and color, she didn't know she was eating one of her least favorite foods!
Eating Out : When we go to a restaurant, we ask for a booster seat which we put upside down on the floor to serve as a footrest. We bring an extra belt (or rope) to secure her into her chair. To astounded other customers (who are often critical), we merely state to them that "she is belted in for her safety and your dining comfort." We also ask at restaurants that they bring her food out first so we can get it cut up and get her going before the rest of the meals arrive. We have not yet been to a restaurant that has not accommodated any of our requests, nor questioned our putting their food into her dishes.
Depending on the cuisine of the restaurant, there may or may not be something on the menu that she can eat. Special requests have always been honored. We haven't been to a place yet (a steakhouse comes to mind) that could not tuck some cooked vegetables and chopped meat under a blanket of cottage cheese or into a baked potato, or done a couple of over easy eggs on toast. I learned long ago that if one asked, the worst thing that could happen was that someone would say no (it has never happened).
As a caregiver of a person with disabilities, my biggest piece of advice is TAKE CARE OF YOURSELF. A tremendous amount of physical and emotional energy can be expended on the person with disabilities and if the caregiver is not healthy, it becomes increasingly difficult to deal with the physical and emotional repercussions. It may necessitate a daily nap, a higher calorie diet, frequent yoga, or a support group, but it is vitally important.
Following are some recipes that have been very sucessful. They meet Heidi's needs as well as those of the rest of us:
8-10 slices cooked, crumbled bacon or 3/4-1 c chopped ham (again, chop as finely as needed, depending on oral motor skills) or 3/4-1 c cooked crumbled breakfast sausage
1 c. prepared ranch salad dressing
In a bowl, whisk salad dressing with mustard; reserve.
Bring water to boil in a large stockpot for pasta. As soon as you put the pasta into the water, saute chicken and shallots in butter until barely cooked. Remove and keep warm. Add wine to skillet, stirring up any browned bits. Whisk in salad dressing/mustard mixture and heat. Add chicken.
Drain pasta. Toss chicken/dressing mixture with pasta and serve.
This is a favorite in the summer, but frozen corn will do in a pinch.
3 T butter
Melt butter over low heat in a 3 quart saucepan. Add chopped onion and cook until soft.
Put the white corn kernels in the food processor with ½ c. of cream and process until well pureed. Add the white corn puree and yellow corn kernels to the saucepan and cook until heated. Add salt and pepper to taste, and continue to cook a few minutes longer.
This recipe comes from my great-grandmother. Note it makes an 11" pie. Yes, you can buy an 11" pie pan, but they can be hard to find. Mine is 100+ years old.
Leftover custard pie makes a great breakfast.
1 qt Milk minus 2 T
Bake pie crust (remember, 11") in 400-425 oven until set.
Rub butter in sauce pan, scald milk.
Beat eggs (while milk is scalding) until foamy and add sugar, flour and salt.
Add milk to eggs and put in hot crust.
Bake at 400 for 10-15 minutes. Reduce heat to 350 (or lower if it bubbles over) and bake until a silver knife comes out clean.
It's easier to pull rack with hot crust out of oven and fill with filling than carry filled crust to oven.
Jiffy Corn Pudding
Jaymes submitted this recipe to RecipeGullet. It is less crumbly than regular cornbread which makes it an easy-to-eat food for someone with limited fine motor skills.
1 stick butter or margarine, melted
In bottom of large mixing bowl, melt butter. Add sour cream and combine. Add eggs and beat. Add all remaining ingredients and combine well.
Pour into greased 10"x10" casserole and bake, uncovered, at 350° 45 minutes, or until golden and cracking.
Thanks to Rachel Perlow for this one, which is on RecipeGullet.
Made for the NJ eGullet Potluck on Sept 21, 2003. The photo is a quadrupled recipe, that's a 320 oz bowl (5 quarts of custard, a dozen bananas and two boxes of Nilla wafers). Feel free to just make the original version. ;)
3/4 c sugar
Mix together the sugar, cornstarch and salt in a 2-4 quart saucepan. Whisk in milk and cook over low heat (or use a double boiler), stirring frequently, until thick.
Stir about 1/2 cup of the hot mixture into the beaten eggs, then return to the pan, stirring thoroughly, over very low heat. Stir and cook about 5 minutes longer. Remove from the heat and add butter and vanilla. Whisk in completely. Strain the custard to remove any possible pieces of cooked egg. Cover and refrigerate until completely chilled.
Up to 3 hours before serving, line a clear serving bowl with 1/3 of the Nilla wafers and sliced bananas. Smooth over 1/2 the custard. Another layer of wafers and banana, the rest of the custard. Decorate the top with the remaining cookies, bananas, and whipped cream. The bananas on top should be dipped in acidulated water to keep from browning.
Cooking With Disabilities: Part Two
Posted 20 May 2004 - 12:50 AM
Posted 20 May 2004 - 12:53 AM
COOKING WITH DISABILITIES
PART TWO: COOKING WITH A PERSON WITH DISABILITIES
Jenna Umansky (Specialteach) was born and raised in Washington, D.C . where she still lives. Growing up with parents who made their own Peking Duck, caviar omelets and all of her baby food, it was impossible not to share their passion. Jenna took her first cooking class at the age of 12 and continues to explore the world through food. She spends her free time volunteering for a local nonprofit catering group, improving her photography skills, and shopping at area farmers markets.
Jenna has spent the past six years teaching special education, primarily to inner city students. She has worked with children who have a wide range of disabilities from learning disabilities to mental retardation, emotional disturbances and autism. Currently she is working with children aged 8 to 10 at a special education school outside of Washington. Throughout the course of her career she has taught classes that include a cooking class for teenagers and Daily Living Skills for teenagers and elementary aged children. As part of her Social Studies curriculum this year she is helping her students explore different countries through food.
Jenna holds a BA in Psychology from American University and is currently working on a Master's in Special Education. She is also a certified trainer in Managing Disruptive Behavior, a physical restraint system.
Additionally, Jenna was diagnosed with a chronic illness in the mid 1990s. Since then she has relied on modern medicine and homeopathic treatments to manage her illness.
My two passions in life are children and cooking. As a teenager I babysat for a young man who was mentally retarded. While spending time with him I discovered that I loved working with children who have special needs. With one or two exception, every job I have had since then has involved children. In college I did home-based therapy called Lovass, which led me into special education. For the past six years I have taught children with learning disabilities, mental retardation, and autism around Washington D.C.
During my first year of teaching, I had a student who had never tasted a fresh blueberry. She thought that blueberries were an artificial flavoring. We spent that year exploring different fruits and vegetables, although none was as big of a hit as berries. Since then, foods and eating styles have been an integral part of my teaching strategies.
This section of the course will provide a glimpse into the world of teaching people with special needs to cook. Often the hardest part is simply convincing students and parents that the children can cook. Adaptations for medical issues and different levels of functioning may be necessary, but every student can work in the kitchen. It is important to allow students to take what they learn and use it in different environments. Working together parents and teachers can help increase a special needs person's independence.
The kitchen is a great place to teach and to learn. At the end of this lesson, for example, there is an easy recipe for Chocolate Croissants. It is a good example of how many skill areas can be covered in cooking. Following directions, using the oven, and cleaning up teach daily living skills, reading the recipe teaches both reading and math vocabulary. Completing all the directions in a recipe involves reading comprehension and practices the daily living skills if doing the tasks in the correct sequence. Opening the dough package, putting chocolate chips on the dough and rolling practices fine motor aspects of daily living skills. Identifying temperatures, laying out dough triangles, counting chips and setting a timer all teach math. Teaching in the kitchen lets students work on multiple goals while simultaneously building their independence.
SETTING UP THE KITCHEN
Setting up a kitchen for a person with special needs just means a little bit more pre-planning to make it accessible to people at all levels of functioning– from young children to young adults with special needs to grandparents with fading daily living skills. The basic rule of KISSing applies to all: Keep It Simple, Silly!
To start with, label everything. Use pictures if your students can not read, and a label-maker if they can. Programs such as Boardmaker make labeling easy. Put pictures of forks, spoons, and knives on the utensil drawer. Put a picture of canned goods on the pantry shelves, and images of the pots, pans, and cooking utensils on their rightful homes. You will more than make up for the time spent wrestling with stickers when clean-up comes and everyone can quickly find where everything goes.
Label kitchen functions like cooking and cleaning, too. Use magnets to put a bright red HOT and blue COLD sign on the oven, reminding everyone to stay away when the oven is in use. Put a CLEAN and DIRTY sign on the dishwasher to let everyone know whether it can be filled or must be emptied. (Note: teenage boys may be beyond the capabilities necessary to follow the dishwasher signs. It will help everyone else.)
Modern appliances are much simpler and safer to use than old-fashioned gas ones. When they are hot electric stoves have burners that turn red, universally associated with stopping or danger. Ovens with buttons allow for easier programming, both physically and mentally. Digital displays mean that you do not have to read numbers to set the stove: Instead, you can simply match the number to the number on the recipe. Automatic shut-off timers make using the oven safer and simpler, and dishwashers almost run themselves.
Just because your prized Wusthof knife is terrifying for both your students and you does not mean that dinner preparation is limited to boxes. Cutting and chopping are safe with the right equipment. Choppers allow people whose hands are not so strong or steady to cut or mince almost anything. Chopping onto a flexible chopping board or an adaptive chopping board allows foods to be safely and easily transferred. Ergonomic knives, spoons, and measuring cups allow for different grasps. Experiment to find which version is easiest and most comfortable.
Cleaning utensils come in a wide variety of designs. Let your students try different ones to find what they are most comfortable with. Color-code your soaps and brushes to their intended uses. For example, use green dish soap with green sponges and brushes; yellow surface cleaner with yellow sponges; and blue dishwasher detergent. Putting pictures of the sink, counter, and dishwasher on their respective bottles can also help prevent confusion. (Do not forget to put Mr. Yuck stickers on all cleaning supplies!)
People with special needs sometimes take longer to complete tasks, but pre-packaged foods can make meals easier. Modern food convenience began with presliced bread and continues to rip and shrink wrap its way through the supermarket. Lettuce for a salad no longer has to be washed and torn. Pasta can be bought precooked, as can chicken. Carrots, potatoes, and broccoli can all be purchased already cut. Just KISS everything at first, and let the raw ingredients get more complicated as students' skills progress.
One of the first obstacles to overcome is often a student's fear of the kitchen. If a child has been taught that the kitchen is dangerous or that they should not use it independently, then they will often be hesitant to learn how to cook for themselves. Small steps, beginning with basic lessons on safety and cleaning, can help even the most reluctant student learn how to cook.
Last year a new student entered my class. She was a quiet sweet girl, who had seen more in life than she deserved to. Her last school gave up on her, giving her father little hope that she would be able to live independently. As part of her daily routine in the classroom she was taught to clean up after lunch. It became her responsibility to throw away her own trash when she was finished eating. If she left a cup on the sink, she had to go put it away.
She also had to get her own silverware and put it in the proper place. All she had to do was match the shape of the utensil to a shape on her place mat. No letters, no numbers. It took a couple weeks, but one day she got it on her own. We moved on to the next lesson.
Three months into the school year we had our first parent meeting. The student lives with her father who is not home enough because of work. He sat down at a table of seven women and shook his head. "I don't know what you people do here, but my daughter has started setting the table for every meal. And then she cleans the dishes and throws the trash away. And I never asked her. She just started one day on her own. And now she wants to cook!"
So she learned to make cereal. Next came a cheese sandwich, hold the mayo. Peanut butter and jelly was mastered on the first attempt. Once she learned to match the numbers on the directions to the numbers on the microwave while making quesadillas, a whole new world of cooking was open to her, and her family.
A checklist covering all the clean-up skills– dishes, counters, putting food away, and restoring pots and pans-- can be very helpful. Perform a task analysis with the student to determine how detailed the directions need to be. Do you need to be detailed or can it be basic? (see Appendix I of this course for a task analysis of unloading a dishwasher.) Use either simple pictures or written directions, depending on skill levels. Laminate it with contact paper and punch a hole in one corner to attach an erasable marker with string. The list can either be kept on the refrigerator or carried around as the different tasks are accomplished. This helps the student be organized and builds independence: Instead of trying to guess what comes next, the student simply checks off one step and moves on to the next.
Then go on to something a little more complicated that can be scaled up as your students learn. A simple chicken Caesar salad is a perfect example. It can be made by either by relying on pre-packaged goods or by cooking from scratch. At the KISS end, provide a recipe with pictures of a bag of lettuce, precooked chicken strips, and a bottle of salad dressing. For more advanced students, help them cook boneless, skinless chicken breasts in an oven or on an indoor grill slice it, and then place it atop the lettuce with the dressing on top.
Students will be motivated to learn new kitchen skills if they like the food they are cooking. Before making your lesson plans, talk with them about what they want to learn to cook. Use cookbooks with pictures to help them identity foods they like.
Find out if they have aversions, medical or otherwise, to certain foods. If a student does not like white bread, for example, and that is all you have for sandwiches, the lesson will not go over very well. Other students may not like the sensation of eating, and still others have strong affinities for certain things, like a love of white foods.
This does not mean that you should only stick with familiar foods! You can– and should– introduce new foods as you go along. But special needs students often need to be pushed harder than regular students are to explore new things. Take small steps and have a positive reinforcer nearby as a reward. If a student loves pretzels, for example, have a couple available as a reward for tasting something new. Praise them for trying new foods, even if they do not like them. Appendix II of this course provides a useful list of positive reinforcement phrases I often use.
And be sure to try the foods along with the students. They will look to you for your reaction: You can not expect them to try something you are not willing to taste yourself! Teach them that it is okay if they do not like it, as long as they try it. But do try to have them taste everything twice. The first time, they will often have an aversion just because it is new. The second time, they will be slightly familiar with it and can actually taste it without a power struggle.
When I teach a unit on Japan I include a lesson on making sushi. Cucumber makki (cucumber rolls) are easy to make and do not include raw fish. The ingredients are easy and available at most grocery stores, although it may require a trip to the Asian food section. All that you need are rice, cucumbers, seaweed, soy sauce, and wasabi. If you do not have a sushi mat use aluminum foil or plastic wrap instead. Remember to let the students try each of the ingredients individually. One year after teaching about sushi, seaweed for snack became a special treat in my classroom!
The lesson allows for a number of different goals to be worked on at once, as well as teaching about a different culture, and provides an opportunity to try new food. Students are given the opportunity to spread the rice on seaweed, peel and cut cucumbers, and try to eat with chopsticks. These three tasks involve occupational therapy, speech therapy, daily living skills, math and reading. Students are often hesitant at first to try it, although Sponge Bob Squarepants has made seaweed cool. Yet, once they learn that it is okay to eat with your fingers and there is something salty to dip it into (soy sauce) they over come their aversion to it. For students who have a hard time with crunchy foods, use a cucumber that has become a little soft. Remember to have wasabi available for those students whose have less sensitive taste buds and enjoy spicy foods.
I often begin a cooking class with Chocolate Croissants. It sounds fancy, looks and tastes impressive, and it is easy to do with students of all skill levels.
Remember, this recipe has been KISSed: The sheet should still be cleaned, but the task will be much easier. Secondly, aluminum foil cools quicker than a regular baking sheet. This makes the removal of the croissants easier and safer.
Students who are higher functioning can learn to make dishes that are more complex. It is important to establish a base line and work from there. If a student is able to open a can, use a chopper and turn on a stove and oven, try Baked Clams over Spaghetti.
For the pasta:
1. Fill a pasta pot with water and place on stove.
For the clam sauce:
Preheat oven to broil. Remember to change oven sign to hot.
1. While the pasta is cooking, clean the clams by rubbing them together to remove dirt and grit. Place on baking sheet.
*Teach students that if clams do not open, they should not be eaten.
Putting it together
Serve with bread to dip into the remaining sauce.
This recipe can be adapted for different skill levels as well as for physical impairments:
Working with special needs students often means working toward independent living and cooking is an integral part of that. Having a limitation does not mean that cooking and eating cannot be enjoyable. When you show someone how to prepare their own meal, you are teaching skills they will use the rest of their life. As the saying goes "Give a person a fish and you feed a person, teach a person to fish and you feed a village."
Ask your questions about this course on the Q&A thread.
Unloading the Dishwasher List #1
Hurray!!! You are done
Once skills are mastered the task can be reduced to fewer steps.
Unloading the Dishwasher List #2
Unloading the Dishwasher List #3
With each progression the number of steps, or cues are reduced as task becomes more familiar. Pictures or photographs of the steps can be inserted if reading is not an option.
Absolutely, All right, Amazing