Q&A: Cooking With Disabilities

[phlfour]

Tomorrow is a big day for me, everyone, as after two years on crutches, I am taking final delivery of my artificial leg. When a cook loses a leg it is like discovering the kitchen has run out of fresh herbs with which to finish a dish. However life doesn't stop living and a cook doesn't stop cooking. This titanium appendage is like discovering the pantry is full of dried herbs! The dishes will be different...more slow cooking techniques and a slower pace to life but the results can certainly be tasty and very rewarding. Play the ball where it lies and cook with what you have is my credo, now.

P

[andiesenji]

Tomorrow is a big day for me, everyone, as after two years on crutches, I am taking final delivery of my artificial leg. When a cook loses a leg it is like discovering the kitchen has run out of fresh herbs with which to finish a dish. However life doesn't stop living and a cook doesn't stop cooking. This titanium appendage is like discovering the pantry is full of dried herbs! The dishes will be different...more slow cooking techniques and a slower pace to life but the results can certainly be tasty and very rewarding. Play the ball where it lies and cook with what you have is my credo, now.

P

Congratulations on your new appendage. The modern prostheses are a wonder. I am sure that you will be back to making magic in your kitchen in good time. Your attitude is great and that is one of the most important things in dealing with this kind of event.

Two of my uncles (twins) came home from WWII missing both legs and neither considered themselves as being disabled.

One, who had been a competitive rider in hunt seat, had a special saddle made to order and went back to riding.

The other had a degree in horticulture and on the family farm specialized in testing new plants for future crops.

They both upgraded their legs as new and improved prostheses appeared on the market and were always contending to see which could do the most on their "pegs" as they called them.

20 some years ago there was a humorous story in Reader's Digest about them. They were in their doctor's waiting room where a loud-mouthed woman was going on and on about acupuncture.

One of the "boys" went out to their truck and returned with an ice pick. He handed it to his brother and said "I want to see how that "puncture treatment" works, lemme have it." whereupon his brother stuck the ice pick into his leg. This not only shut up the woman but pretty much cleared out the waiting room. The doctor, who had known them for many years, scolded them but was laughing as he did.

When my aunt told me this story on the phone I laughed so hard I nearly fell off my chair. I told her she should send it to RD and so she did.

Both were also fanatic barbecue cooks and again this was a deep seated rivalry as each tried to one-up the other. I don't know how many barbecue and smoker units are on the farm, but there are several that I know of.

One uncle passed away last summer but the other is still going strong at 85 and has two of the new Otto-Bock C-legs. He jokes that if his wife (of 65 years) would let him out at night he would be dancing with the girls at the local honky-tonk.

[ruthcooks]

snowangel...

When I was small, my mother crushed pills and gave them to me in a teaspoon of powdered sugar. I didn't learn to swallow them until I was married and my husband (ex, of course) insisted. Crush easily between two teaspoons.

[lovebenton0]

I had a really rough time through a lot of June and most of July and somehow missed all of this at the end of June.

Andiesenji, I laughed so hard at your uncles. What a wonderful story, what a great pair of uncles you have had. Thanks for sharing them with us.

phlfour Posted on Jun 30 2004, 10:02 AM

Tomorrow is a big day for me, everyone, as after two years on crutches, I am taking final delivery of my artificial leg. When a cook loses a leg it is like discovering the kitchen has run out of fresh herbs with which to finish a dish. However life doesn't stop living and a cook doesn't stop cooking. This titanium appendage is like discovering the pantry is full of dried herbs! The dishes will be different...more slow cooking techniques and a slower pace to life but the results can certainly be tasty and very rewarding. Play the ball where it lies and cook with what you have is my credo, now.

P

phlfour, how are you doing with your new leg? Being imbalanced with two is hardly the same as you going through the adjustment to one leg, but I do empathasize with your situation. I agree that moving around the kitchen, and changing the way one thinks about what and how to cook makes a huge difference in the enjoyment we can still derive from cooking. I also have to adjust my cooking methods, often changing even my own recipes to suit my situation these days. And always thankful for a "pantry full of dried herbs" as you put it. Hurrah! for you.

[chromedome]

The other thing is this:  I have worked for my boss for 36 years, I saw his children grow up.  His middle child, a daughter is deaf from infancy.  However she had the advantage of parents who would not settle for less than the best and after a brief time at a "special" school she was "mainstreamed" and excelled.  She is a graduate of UCLA Medical School, is a practicing dermatologist and is an extraordinary individual.  She is featured in Living Legends III

Dr. Lisa Woolf

http://www.buttepublications.com/biographies.asp?SessID=13

I think the more people that know what someone with a "disabilty" can achieve, the better the future will be for the young people coming along.

One of my personal heroes is Dr. Temple Grandin, a leading expert on slaughterhouse design and the behavior of domesticated animals. Diagnosed in childhood as autistic, she went on to forge a rather impressive career and now operates her own consulting business.

Dr. Oliver Sacks interviewed her for his book "An Anthropologist on Mars", which derives its title from her approach to living in the larger world. She cannot comprehend it in the instinctive way the rest of us do; so she applies her intellect to the task of decoding the behaviours of those around her, and deducing appropriate responses. In some ways I think this is analogous to those who have to re-learn motor skills after an accident or illness causes them to lose awareness of their body.

Incidentally Grandin was able, while an adolescent, to teach herself how to learn. The methodology she devised for herself is, I'm told, pretty much what is used now by educators working with the autistic population (I'm sure Specialteach can correct me if my information is inaccurate).

I don't know how the "special" links to Amazon work, but if anyone wants to throw them in here, she has written a few books which may be of deep interest to anyone who has an autistic person in their life (those of you, of course, who haven't already read 'em).

[lovebenton0]

Many of us have what are considered to be Invisible Disabilities.

You didn't feel able to cook today? Or you have to bail out on those plans everyone was looking forward to because you just can't do it right now?

We've heard it all, the doubt in people's voices, the scepticism in their eyes, as they say "You look good."

Or maybe you're having a good day and people assume you've "got it licked" as though your disability just suddenly disappeared (or never really existed!) because they can't see it or you are functioning on a higher level that day. That can change in a moment for many of us.

This web site is interesting, informative, and may help you to deal with those in your life who just don't get it to understand your life a bit better.

Invisible Disabilities Advocate

[snowangel]

I come seeking advice.

Heidi is thin. Beyond thin; I can span her waist with my hands. She is 10, and weighs not much over 50 lbs. She is tiny, and I am modifying elastic waiste pants to fit her. She has had the stomach flu, followed by shrimp (which she always horks) and has a cough that causes vomiting (cough medicine is a no go because of her AED's) We are trying every trick in the trade. The MD's have suggested some things, but they aren't working. She won't drink those power drinks.

What are the best things to feed someone (keep in mind that the person won't eat something because you say if they don't eat it they won't get their reward) for max bulk? She is very partial to white and yellow foods, but one can only give a person so much cheese or eggs. Bananas have been just about the only source of fibre, which causes other problems.

I do have a call into the dietician at the hospital where she goes for blood draws, but thought I would hit here for some suggestions, as well.

Keep in mind that highly processed food is out, she's profoundly MR (ruling out power of suggestion) and she is also completely non-verbal.

But, she's still smiling and cute as a button!

[Marlene]

Electrolytes. Remember them? As a baby, when Ryan was sick non stop, we would get him to drink the stuff. It's in the baby section. Yeah, some of it wouldn't stay down, but enough would to make sure he was getting some nutrients and was keeping hydrated.

[snowangel]

OK. So off to the drug section of Target tomorrow for electolytes. Do you think they helped him gain weight? How's the taste? She is hydrated (we check the pull-ups), but nutrition and calories have been the big problem. Ped, neuro and parents are puzzled by what's going on, but she's going down on the statistical weight chart rapidly. I trust her medical care implicitely. Weight gain can be a good and necesary thing. If she could just verbalize...

[Marlene]

yes it did. He had some serious illnesses as a child. Because we had to keep giving him this stuff he was able to maintain a weight gain. It's been a long time but it might have tasted like licorice, but don't quote me on that. but it's clear.

[Pan]

Susan, I can't offer you any advice, but I really feel for you. Hang in there, and may your daughter keep smiling for many, many years to come.

[snowangel]

For those with difficulty getting food into spoon or on a fork, I have discovered a wonderful pasta shape: Barilla Pipette. It is shorter and wider than regular macaroni. Somewhat ridged. Just the right size and shape for a spoon and scooping. We never serve spaghetti or linguine in our house. It is way too much cutting up for Paul and I to do for Heidi, and way too much of it ends up on the floor.

These Pipettes have worked well for a tomato based sauce, for an alfredo, for a mac and cheese. These are shorter and much wider than traditional elbows -- enough different in shape that they seem to bridge the gap more than any other pasta.

Edited to add: Thanks to all for well wishes for Heidi. We did the drinks. She didn't like them. But, her appetite is back, and she has regained 1/2 pound, and what and how much she's eating indicates that she's recovering well.

Edited January 19, 2005 by snowangel (log)

[snowangel]

So, slowly, but surely, Heidi is once again eating, and seemingly gaining weight. We started with the electrolyte stuff. Then, when she seemed hungry again, she was hungry for food. Oatmeal. Beans and cheese. Bananas. Since she doesn't have the oral motor skills to eat meat (other than finely chopped chicken), we have concentrated on poultry, eggs, beans. Augmented with cheese. Lots of roasted cauliflower, bananas, peas and corn for veg. Whole milk. If she eats well for dinner, she's rewarded with cream cheese mixed with a variety of fruit. The hard part is getting the calories into her, without sacrificing fruit and veg. Her pants aren't hanging as loose on her, and I think that she's now tipping the scales at 52 lbs. (she's 10 any tiny), but up from 49 lbs.

And, thanks to everyone for their concern. It's really frustrating when the patient is non-verbal.

[snowangel]

I have huge changes to report in Princess Heidi. We had been so worried about weight and size, that we were missing the forest for the trees. (BTW, it is likely -- according to ped and neuro -- that she will always be little; both Paul and my family are largely made up of much shorter and littler people than we are, so we were told, after numerous tests to quit worrying).

What prompted this was a her bi-annual visit to the neuro. We celebrate, now, 7 years seizure free, and the neuro was astounded by the differences in our Little Princess.

Last October, school decided that it was time to mainstream her about 70% of the day, in the same 5th grade class. I must add that she couldn't have a better mainstream teacher, nor a better group of kids (he said best class he's ever had in 20 years of teaching).

So, she's mainstreamed. At first, it doesn't go so well. No interaction between her and her class. So, I offer to go in and talk to the class. Which I do. Talk a bit about her disability, then ask some questions of the class as to what they like to do, what they don't like. Turns out, after asking these questions, I am able to tell them that Heidi likes to do what they like to do, doesn't like what they don't. Emphasize the similarities, play down the differences.

So, all of a sudden, it goes from no one sitting at the lunch table with Heidi and her aide to a schedule of who can sit with her. Kids petitioning the teacher so that each of them can have 20 minutes every so often in her center-based class. Girls taking turns pushing her in the swing at recess.

Then, I get The Note. She is sitting through 1 hour of social studies class every day. She, at the request of the other "regular" kids, is fully integrated into the DARE program.

So, just what does this have to do with food, you ask?

Shortly after she started having lunch with the mainstream class, I asked if most of the other kids were having school lunch or bringing theirs. Turns out, almost all of this group takes school lunch. So, we retired the lunch bag and the cheese/mayo sandwich on squishy white bread cut into neat cubes and sliced banana for school lunch. There is now a schedule in this class of who gets to sit with Heidi on which days.

Turns out, as she sits with her friends, she will eat just about anything (except school lunch spaghetti). Masticates far better than in the past. She will actually eat meat (other than rare steak). This has translated to being more adventuresome at home, food wise. She will eat green veg. I am finding less and less that I have to allow for easy modification for her oral motor needs. Eating habits are much neater. She wipes her mouth with her hand when something "falls out." Mouth closure on a cup is much better; she's not coming home with milk stains on her shirt any more. She can get a spoon of soup or cereal and milk to her mouth. This is huge stuff for us.

She quits drooling the minute the bus pulls up at the school every morning.

No longer needs a footrest to attend to task (including eating).

She no longer needs to chew on things or have her hands in her mouth to feel "grounded" (a real problem in the past).

We are seeing these behaviors translate to church, eating out, being with other people.

Yes, I'm bragging. I've waited almost 11 years to brag about this girl. Peer pressure is powerful, as we are seeing. And, not always a bad thing. Best of all was at the open house at the school a few weeks ago. Every parent in her mainstream class talked to us about how important Heidi was to their kids. How much she had done to make them accepting, open and affirming of all.

[specialteach]

This right here, ladies and gentelmen, is why I do what I do, every day.

Brag away, you deserve it.

I can almost guarantee that there is at least one future special ed. teacher sitting at Heidi's lunch table.

[Marlene]

Susan, I am so thrilled for you! Reading this and having you, Jenna and Judith do this course is a big part of what makes the time I put into the Society worthwhile.

Will Heidi start experimenting more with coloured food now do you think?

Congratulations!

[lovebenton0]

Yeah, Heidi! This is big news, Susan. All of these behaviors are tremendous progress for her. Brag on, mom! She has again touched the lives of the people around her, and they are touching back.

[snowangel]

Heidi has been eating braised meat! This is big stuff for us, as meat has been difficult for her to masticate. I must credit my interest in Molly Steven's All About Braising. First, it was the milk braised pork. Then it was the chicken braised with prunes and olives.

Braise meat, for those who have difficulties masticating or cutting is a wonderful thing. I, because of Heidi, tend to take things a little past the pont of what is recommended, but I figure with fatty chicken or pork, what's the problem? As an additional side note, braised meat falls apart so easily that I don't spend the entire meal mincing meat for her.

The chicken dish was especially fun to watch her eat. The silky chicken. The surprise of a briny olive. And the sweet of the prunes. This dish was a sensory delight, because the olives retained some of their "snap" and it was coupled with other very different tastes. I did not pick out the lemon rind ahead of time, and she was very clearly puzzled by the texture.

Yes to braises for those who have difficulty cutting or masticating.

I've said that the cookbook referenced above is one of my current favorites. I think it is about to become one of Heidi's. Although I have a boatload of meat in the freezer, I think I need some pork country ribs and a mango for that one dish which I think she will adore.

[snowangel]

We have just come through, successfully, a rough period with Heidi. Lots of seizures, lots of med adjustments, lots of late night calls to the neuro.

One of the things that happens at times like this is that she doesn't want to eat or drink.

So, I made sure to get into her good stuff. Steel cut oats, with mashed bananas and cream and brown sugar;; fibre, fruit. Lots of juice cut with lots of water. Paul and I taking turns laying on the couch with her while the rest of us the rest of us ate dinner.

One of the things that we were reminded of during the "bubble burst" was that is is unbelievably important for caregivers and the rest of the family to take care of themselves. Eat and sleep well. Get some exerciese. In my case, it was Heidi, bundled in a coat and afghan, with me pushing her in her Major Buggy, me getting exercise, her getting some fresh air. And, we both came home hungry, which was a really good thing for her.

I actually asked people, as I was home for over a week with her, laying on the couch, to pick up special treats for me. Baby greens. Goat cheese. Steaks. Whatever. This past couple of weeks reminded me that if I'm not healthy, she won't be, either.

She's better, now, and really, really glad to be back to school.

[snowangel]

I just received Heidi's progress reports from school, and have several very positive comments.

Sometime mid-school year (this past year), we made the decision to mainstream her for a good portion of the year. This has proven to be a wonderful decision. Helped trememdously that I went in an talked to the class about Heidi and that the class was a great group of 5th graders, more than willing to embrace her.

Introducing Heidi to new foods has always been a problem. Early on in the mainstreaming, I asked the teacher if most of the 5th graders were brown-bagging it or getting school lunch. School lunch was the answer, so we decided that Heidi, too, would eat school lunch. No more waking up pre-dawn to make her a cheese sandwich on squishy white bread with mayo, cutting it up in little pieces and hoping that I had an appropriate tupperware container and a banana that was not a fruit fly attractant.

All of a sudden, she was forced to make choice. And, she did, and appropriately, avoiding the things we know she doesn't like, but also making a wider range of choices. Vegetables. Crunchy things. (I will add that the school lunches in our district are very good). She has actually chosen salad a few times.

And, she has modeled her behavior around that of the other children. She is a neater eater. She is using a fork more regularly. She is carrying her own tray (with only a carton of milk; someone else carries the tray with the stuff that would require a mop or broom), and is choosing her own seat, and knows that the milk carton with brown has chocolate milk.

I've learned just how huge peers are for a child -- even one who is profoundly MR. The desire to please and be part of the gang is a powerful motivator, and one that is not necessarily bad.

[maggiethecat]

Susan, that's the best news I've heard in a month. Brava Heidi, and the positive effects of peers.

[Terrasanct]

I'm glad that this thread was brought to the top. I'm disabled, and I look forward to reading the whole thread.

[snowangel]

Time for an update on Heidi, who is now 11+. She now in middle school (6th grade).

Her class has a full kitchen and laundry room. Range, oven, nuker, dishwasher, blender, etc. Three times per week, she has in-class cooking lessons. They started with opening tupperware-type containers and spooning out pudding. Lest you think that those food choppers that you push on the top and they chop (the kind advertised on late night TV; the ones that most laugh at but do have a place for those with limited abilities) have no place, let me tell you that they do. Heidi has become a pro at chopping stuff to put in her breakfast yogurt.

We added some meal stuff to her IEP this year. She now carries a tray to the table in the cafeteria this year (albeit it has only an unopened milk carton on it; her aide carries the food tray), but she has only lost it once this year soo far. She is required to make her own meal choices, and it is becoming obvious that she makes the choices that she will actually eat. Since no trading of food at lunch is permitted or tolerated, she no longer is grabbing at other's food items.

She is, via hand over hand, leaning how to load the dishwasher. Next year, she will have FACS (home ec to those of my age, food and consumer science to those younger) next year, and we will soon make plans for what part of this she will take. She shows a penchant for washing dishes, so that may be her part in the class.

Heidi has just come off a food moritorium, which is great. She is now wearing size 8 (kids) clothes and weighs 63 pounds. Keeping weight on has continued to be a battle, but she is hungry, so we are keeping her fed with lots of high calorie, high fat foods, combined with her protein sources of choice (fish and beans). Seizures remain under control.

Her school program is the best, and includes plenty of field trips. There is a supermarket not three blocks from the school, so going to the market and getting snacks (teaching fruits and veg!) is prominent. Tomorrow they will take the light rail to the Mall of America and eat at the Rainforest Cafe. The restaurant was generous enough to offer that they could have a reserved area, and that the kids could either order off the menu, bring a bag lunch from home. Heidi gets to order off the menu, and if she wants Coca Cola to drink, she can.

[lovebenton0]

this is great news for Heidi and for you! thanks for the update on your princess. will be looking forward to a report on her mall trip too.

[lovebenton0]

wow, it's been a year... thought i'd bump this up for a quick update and suggestion for those of us that love to make bread, but are having trouble getting that kneading done.

update first... i'm in wisconsin now, on lake michigan with my service dog quinn. that's us in the avatar shortly after the big move from texas this july. we have snow now, but we're loving it up here and with quinn i'm able to get out to walk to the deli and market on my own. that's an incredible improvement.

now for the suggestion... i've made bread for mumble mumble 35 plus years. i started having too much trouble kneading bread this fall. turns out i've got a severe case of carpal tunnel and kneading is not on my list of doables in a brace 24/7 right now. snowangel mentioned the minimalist/no knead bread thread to me. this is a major step beyond the old batter breads i learned as a young teen and i'm in love. i've been making my bread using this method exclusively for the past few months.

there's been lots of action on that thread, hope some of you will get a chance to try out the no knead method. i've been incorporating my sourdough barm/starter into the method and find i can do almost anything with this. it really has saved my hands and my daily bread.