December 3, International Day of Persons with Disabilities, Challenges of Feeding

The International Day for Persons with Disabilities 

From United Nations Enable "Persons with disabilities make up an estimated 15 percent of the world’s population. Almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. Furthermore, a quarter of the global population is directly affected by disability, as care-givers or family members.  Persons with disabilities often face barriers to participation in all aspects of society. Barriers include those related to the physical environment or to information and communication, or those resulting from legislation or policy, or from societal attitudes or discrimination. The result is persons with disabilities do not have equal access to society or services, including education, employment, health care, transportation, political participation or justice. Evidence and experience shows when barriers to inclusion are removed and persons with disabilities are empowered to participate fully in societal life, their entire community benefits. Barriers faced by persons with disabilities are, therefore, a detriment to society as a whole, and accessibility is necessary to achieve progress and development for all.

Accessibility and inclusion of persons with disabilities are fundamental rights recognized by the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD (Article 9, accessibility) seeks to enable persons with disabilities to live independently and participate fully in all aspects of life and development. It calls upon States Parties to take appropriate measures to ensure persons with disabilities have access to all aspects of society, on an equal basis with others, as well as to identify and eliminate obstacles and barriers to accessibility.

In spite of this, in many parts of the world today, lack of awareness and understanding of accessibility remains an obstacle to the achievement of progress and development through the Millennium Development Goals, as well as other internationally agreed outcomes for all.

As a parent of a child with disabilities and a Registered Dietitian my goals are to provide Jake as many tools and resources to allow for maximum independence; while providing nourishing meals. Through mistakes, observations, experiences and the help of very wise health professionals we adapted our environment to achieve these goals. Lately, I've noticed the goals need to be revised  as Jake gets older. 
1. Utensils were not used in our home for a long time, except when we had guests over. Jake and I ate a lot of finger foods. It was difficult for Jake to hold the utensils. As I watch Jake get older, I have noticed his muscles getting tighter. He now asks for help in feeding – most of the time. 
2. For drinking, we use a weighted cup base, this is to prevent spills. We would place a cup inside with a flexi straw and Jake would be able to drink on his own and whenever he would like. Lately, I've noticed a lot more spills.
3. Jake loves to dine out and have dinner parties. I never had to worry about getting him to try new foods. Jake is a culinary explorer.  
4. I love his understanding of food and nutrition. Jake has a wonderful sense of taste, as he combines different flavors. He creates meals based on colors, designs, and nutrition. Jake is my inspiration, as can be seen in my art and photography. 

___________________________

Assistive technology to facilitate independent eating and drinking

The first video describes feeding challenges encountered by persons with disabilities and the advances in assistive technology. It’s not an endorsement of the Mealtime Partner Dining System, but the video shows good examples of challenging eating/feeding situations. 

Quadriplegic Eating Utensils

The 2012 Theme:

“Removing barriers to create an inclusive and 

accessible society for all.”

Don't Plan for Persons with Disabilities, 

Create Activities Together and Let Everyone Get Involved.

 -Jake's Mom

Resource.

United Nation Enable, International Day of Persons with Disabilities

October, National Down Syndrome Awareness Month Joan E. Guthrie Medlen, RD and Down Syndrome Nutrition

Every October, the National Down Syndrome Society (NDSS) reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square.
  

The Times Square Video presentation kicked off Down Syndrome Awareness Month on the morning of the New York City Buddy Walk. This year, our third-party volunteers chose over 200 photos from over 1,000 submissions for the Times Square Video. The featured photographs highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. These collective images promote acceptance and inclusion, which is the foundation of NDSS and the National Buddy Walk Program.

Joan Guthrie Medlen, M.Ed, RD and the
Down Syndrome Nutrition Handbook

Joan E. Guthrie Medlen, a mother of a child with Down syndrome, a registered dietitian, and the author of “The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles,” encourages parents to start teaching healthy habits early but stresses that it's never too late to start, no matter what age.

Joan became involved in issues related to people with Down syndrome after the birth of her son. “As we all know, parents of kids with disabilities are involved in the big picture immediately – like it or not! I chose to work in the field of nutrition/health promotion for people with Down syndrome over 16 years ago. It’s a choice I've not regretted.” 

Introducing Cooking By Color: 

Recipes for Independence by 

Joan E. Guthrie Medlen, RD

Meet a family who shares
their amazing story of love and living.

About Buddy Walk

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

Take the Food Color Challenge Rich in Beautiful Colors and Endless Possibilities National Nutrition Month

The Food Color Challenge celebrates the 2011 American Dietetic Association National Nutrition Month (NNM) theme, "Eat Right with Color." Angela Lemond, a registered and licensed dietitian (AKA “Mommy Dietitian”) created the challenge to encourage public participation and awareness of the numerous nutrients and health benefits of eating foods with many colors.

I read the challenge to the members of our household. To my delight, they wanted to participate. The individuals who share our home come from diverse backgrounds with physical/emotional challenges and/or chronic illnesses, such as Cerebral Palsy, Autism, Seizure Disorders, Cancer & Heart Disease. We function as a family and came together due to medical and financial concerns.

This would be a memorable day. Our first meal together from planning, shopping, preparation to finally sitting down and eating as a family.

Family Members: Sandra Frank, Ed.D, RD, LDN (Camera Person, Narrator, House Mom, and Registered Dietitian); Jake Frank (22 years old; Menu Planner and Taste Tester); Jonathan Cruz (19 years old; Menu Planner and Food Prep); Lance Li (22 years old; Menu Planner, Shopper and Food Prep); David Bradbury, CNA (32 years old; Nurse's Aide and assisted with feeding); Paul Mitchell (40 something years old; Camera Shy).

Our Guests: Michelle Canazaro (22 years old; Food Prep and Taste Tester) and Cory Munce (21 years old; Food Prep and Taste Tester)




Planning When planning our meal we considered finances, physical abilities & of course, color. Finances
Our goal was to keep the cost around $2.00 per person. We looked for store coupons, specials and purchased store brands when available. We asked our guests to bring a food listed on our menu.

Then a strange miracle occurred. Before I left for the market, I went to get the mail. Someone had sent us a $50.00 Publix gift certificate. Without the gift certificate, the cost per meal was over $3.00 per person and with the gift, we were able to purchase food for a few days.

Adaptations and Individual Preferences

The meal would feed six people, each with unique needs.

My son Jake was born with Cerebral Palsy and is a quadriplegia. He is unable to hold utensils and requires a straw to drink fluids. Finger foods and a weighted cup with a flexi straw usually provide him the most independence.

When purchasing pasta, I look for shapes about one-inch long and easy to hold, such as Rotini (a helix or corkscrew-shaped pasta).  As a backup plan, sandwiches are easy to make from most recipes and a perfect finger food.

At times, Jake’s muscles get so tight he requires assistance with feeding. This was one of those times - the day we made our video.

Other considerations, included:
· Vegetarian
· Mechanical Soft or Puree Foods
· Hates Vegetables
· Low Sodium

Food Choices
I gave everyone a picture list of foods with various colors. (Some of our family members are unable to read.) From the list, we prepared our menu. I was pleased to learn, everyone liked spinach (except Michelle, but that would change.)

 Menus and Recipes 
Fruits and vegetables are foods I try to have readily available everyday and throughout the day. I find when members of our home snack on low calorie - high fiber foods they are less likely to overeat at meals and during the day. The cheese is usually available a few times a week.

Sliced Green and Red Apples(1/2 cup, 33 calories; 1.5 g Dietary Fiber)2 Carrots and 2 Celery Sticks(17 calories; 1.2 g Dietary Fiber)Green and Red-Purple Grapes(1/2 cup; 52 calories; 1 g Dietary Fiber)
Cheese Cubes, Reduced-fat Cheddar & Monterey Jack(1 oz; 81 Calories; 0 g Dietary Fiber)Trail Mix with Cashews, Peanuts, Raisins, Dried Banana Chips(1/4 cup; 188 Calories; 2 g Dietary Fiber)Fat Free Ranch Dressing for Vegetables(1 Tbsp; 21 Calories; 0 g Dietary Fiber)Low fat Yogurt Dip for Fruits(2 Tbsp; 28 Calories; 0 g Dietary Fiber)

Main-courses 

Tri-color Pasta Bar
Directions
1. If using frozen spinach, thaw and drain.
2. Tri-color pasta, cook according to manufacturer’s directions.
3. Dice tomatoes and onions; combine and toss gently; set aside 3/4 cup to use with the salad and/or pasta toppings.
4. Dice bell peppers and add to the salad and topping ingredients.
5. Heat garlic with cooking spray in a saucepan over medium heat. Cook until soft, but not browned.
6. Add onions and tomatoes, continue cooking until soft.
7. Add spinach; toss gently. Cook until the spinach is heated through. Place in a serving dish and reserve 1/2 cup spinach mixture per serving for the following sandwich recipe (Red, White and Green Grilled Cheese).
8. Prepare turkey meatballs and pasta sauce using your favorite recipes.

Serving the Pasta: Create a “Pasta Bar”
1. Place pasta in a large serving bowl.
2. Serve the following sides around the Pasta:
  a. Spinach mixture, cooked
  b. Diced Tomatoes, Onions and Peppers
  c. Shredded Part-skim Mozzarella
  d. Turkey Meatballs, 1.5 oz each
  e. Shredded Chicken
  f.  Pasta Sauce
  g. Tossed Salad

Nutritional Information:
Tri-color Pasta (without meat). 351 Calories; 17 g Protein; 55 g Carbohydrates; 5.3 g Dietary Fiber; 6.2 g Fat; 15 mg Cholesterol; 3288 IU Vitamin A; 0.6 mg Vitamin B1; 0.4 mg Vitamin B2; 51 mg Vitamin C; 46 mcg Folate; 340 mg Calcium; 3 mg Iron; 648 mg Potassium; 343 mg Sodium
Tri-color Pasta (with meatballs and chicken). 439 Calories; 35 g Protein; 55 g Carbohydrates; 5.3 g Dietary Fiber; 7.9 g Fat; 53 mg Cholesterol; 3295 IU Vitamin A; 0.6 mg Vitamin B1; 0.5 mg Vitamin B2; 51 mg Vitamin C; 47 mcg Folate; 344 mg Calcium; 4 mg Iron; 715 mg Potassium; 382 mg Sodium

Red, White and Green Grilled Cheese

From the cookbook, “Keep the Beat Recipes” developed for the National Heart, Lung, and Blood Institute (NHLBI). The cookbook also includes information on cooking, nutrition, and feeding children (including picky eaters). A free copy of the cookbook is available on the NHLBI website.

Directions

1. Preheat oven to 400 ºF. Place a baking sheet in the oven to preheat for about 10 minutes.
2. Assembling the Sandwich
  a. Take one slice whole wheat bread and top with 1/2 cup Spinach mixture, cooked and cooled from the recipe above.
  b. Top with 1/4 cup Part-skim Mozzarella Cheese
  c. Cover with second slice of whole wheat bread.
3. Use cooking spray on the preheated nonstick baking sheet.
4. Place the sandwich(es) on the baking sheet.
5. Bake for about 4 to 6 minutes or until the bottom starts to brown.
6. Carefully turn the sandwich over and bake for an additional 3 to 4 minutes or until both sides are browned.
7. Serve immediately.

Nutritional Information: 283 Calories; 16 g Protein; 37 g Carbohydrates; 7.3 g Dietary Fiber; 7 g Fat; 15 mg Cholesterol; 4273 IU Vitamin A; 0.3 mg Vitamin B1; 0.3 mg Vitamin B2; 17 mg Vitamin C; 51 mcg Folate; 333 mg Calcium; 3 mg Iron; 597 mg Potassium; 470 mg Sodium

Dessert or Snack

 

Fruit Kebab

Directions

1. Purchase disposable wooden skewers. With young children or people with limited hand and arm mobility, cut the pointed tips off and seal securely with tin foil or a soft material to prevent injury.
2. Purchase enough fruit to yield about 3/4 cup per person.
3. Choose a variety of fruits and cut into slices, wedges or chunks. Grapes and strawberries use whole.
4. Place the pieces of fruit on the skewer to create a colorful arrangement.
5. “Enjoy the fruits of your labor”.

Nutritional Information: 43 Calories; 0.6 g Protein; 11 g Carbohydrates; 1.2 g Dietary Fiber; 0 g Fat; 0 mg Cholesterol; 877 IU Vitamin A; 21 mg Vitamin C; 11 mg Calcium; 0.2 mg Iron; 165 mg Potassium; 6 mg Sodium

Fruit Smoothie, 2 servings

Directions

1. Place in blender the following ingredients:
  1/2 cup Skim Milk
  1 cup low fat ice cream or frozen yogurt
2. Cover and blend the milk and ice cream
3. Add 1 to 1-1/2 cups of assorted fruit. Remove large pits from fruit and if using an orange, remove the peel before placing in the blender.
4. Cover and puree until smooth. Pour into glasses to serve.

Nutritional Information: 170 Calories; 7 g Protein; 30 g Carbohydrates; 1.2 g Dietary Fiber; 3 g Fat; 15 mg Cholesterol; 1270 IU Vitamin A; 0.1 mg Vitamin B1; 0.1 mg Vitamin B2; 19 mg Vitamin C; 46 mcg Folate; 213 mg Calcium; 0.3 mg Iron; 255 mg Potassium; 110 mg Sodium  

Memorable Moments
Michelle.  “The tri-color pasta is great.” (Even after I told her, spinach was one of the ingredients.) We laughed and Michelle said, “I guess I must like spinach.”

Lance.  “I never realized there were so many healthy foods that look and taste good.”

Jonathan. “I think lemonade is the healthiest drink in the world.”

Cory. ”I’ll have a little bit of pasta; I’m full from making the fruit kebabs.”

Jake. “Mom - You haven’t cooked since I was a baby. This is good; can we do it again?”

David. “This is beautiful watching the kids help plan and prepare a healthy meal together.”

Paul. “I can’t believe you got everyone involved.”

Sandra. I’ve always worried what would happen to Jake once I was gone, but as I looked around the room I saw laughter, friendship and new family connections being formed. Yes, this was a memorable day, so rich in beautiful colors and endless possibilities.

Wellness News employs young adults with "Special Needs" (Cerebral Palsy, Autism, Down Syndrome, Muscular Dystrophy). Many of the food art photographs are available for purchase with the proceeds going to special need young adults. Contact Dr. Sandra Frank for additional information (recipenews@gmail.com).

Prepared by
http://www.dietitians-online.com/
http://www.weighing-success.com/
Wellness News (www.weighing-success.com/WellnessNews.html)
http://www.wheelchair-connection.com/
Sandra Frank, Ed.D, RD, LDN
Jake Frank
Lance Li

Jonathan Cruz
Michelle Canazaro
Cory Munce



Congenital Heart Defect Awareness Week February 7 - 14, 2011

The Congenital Heart Information Network, a 501(c)3 organization created by the mother of a child with complex heart defects, provides reliable information, support services and resources to families of children with congenital defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. Additional services include financial assistance to families in crisis, funding for local affiliated support groups, and sponsorship of an international CHD Awareness Campaign. With the guidance of a medical Advisory Panel, they maintain a commitment to providing resources that are accurate and reliable.

CHD Awareness Week 2011

A mother and daughter's journey and their mission

to learn and create awareness of CHD.

Camp Oki is Canada's first and only Summer Camp for children with congenital heart disease, including those with pacemakers, internal defibrillators and transplants. Created by SickKids cardiologist Dr Joel Kirsh, the free camp launched in 2004 with 30 kids over a long weekend and now hosts 60 campers over one week. Camp Oki's volunteer counselors are SickKids staff and former campers and they are able to provide a fun, safe and enjoyable recreational opportunity for children who are often excluded from mainstream summer camping programs.

The Congenital Heart Information Network story reflects the courage, compassion, and commitment of one international community of The "online" families and dedicated medical professionals, who have maximized the interactive capabilities of the Internet to educate, inform, and connect people with one another in a very positive way.

Resources
Congenital Heart Information Network
American Heart Association
March of Dimes
National Heart, Lung, and Blood Institute
Camp Oki