October is National Down Syndrome Awareness Month

Down Syndrome Awareness

This October marks 30 years of Down Syndrome Awareness Month,
a time to celebrate the achievements and abilities of people with Down syndrome!

Mission

The mission of the National Down Syndrome Society (NDSS) is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.


The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

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.

Over the past fifteen years, the Buddy Walk program has grown from 17 walks to more than 300 across the country and around the world. Last year alone, 250,000 people participated in a Buddy Walk! They raised more than $9.5 million to benefit local programs and services as well as the national advocacy initiatives that benefit all individuals with Down syndrome.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is a wonderful, heart-warming event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!

Emergency Preparedness for Special Needs.wmv

Special Olympics World Summer Games ATHENS 2011 June 25 - July 4, 2011

Special Olympics

"Special Olympics is about sports but it is also about so much more.  For people with intellectual disabilities, Special Olympics is often the only place where they have an opportunity to participate in their communities and develop belief in themselves. It is inspiring when you see a father’s pride in his son's achievement … a mother's relief when her daughter makes friends … siblings cheering for their brother or sister for the first time."  

2011 Special Olympics World Summer Games are set for Athens, Greece. This event will mark the second World Summer Games in Europe and the third Summer Games held outside the U.S.

 

Words matter. Words can open doors to enable persons with disabilities to lead fuller, more independent lives. Words can also create barriers or stereotypes that are not only demeaning to persons with disabilities, but also rob them of their individuality. Special Olympics prefers to focus on people and their gifts and accomplishments, and to dispel negative attitudes and stereotypes."

From Special Olympics Terminology
Appropriate Terminology
• Refer to participants in Special Olympics as Special Olympics athletes rather than Special Olympians or Special Olympic athletes.

• Refer to individuals, persons or people with intellectual disabilities, rather than intellectually disabled people or the mentally retarded.

• A person has intellectual disability, rather than is suffering from, is afflicted with or is a victim of intellectual disability.

• Distinguish between adults and children with intellectual disability. Use adults or children, or older or younger athletes.

• A person uses a wheelchair, rather than is confined or restricted to a wheelchair.

• “Down syndrome” has replaced Down’s Syndrome and mongoloid.

• Refer to participants in Special Olympics as athletes. In no case should the word athletes appear in quotation marks.

• When writing, refer to persons with a disability in the same style as people without a disability: full name on first reference and last name on subsequent references. Do not refer to an individual with intellectual disabilities as “Bill” rather than the journalistically correct “Bill Smith” or “Smith”.

• A person is physically challenged or disabled rather than crippled.

• Use the words “Special Olympics” when referring to the worldwide Special Olympics movement.

Terminology to Avoid
• Do not use the label “kids” when referring to Special Olympics athletes. Adult athletes are an integral part of the movement.

• Do not use the word “the” in front of Special Olympics unless describing a specific Special Olympics event or official.

• Do not use the adjective “unfortunate” when talking about persons with intellectual disabilities. Disabling conditions do not have to be life-defining in a negative way.

• Do not sensationalize the accomplishments of persons with disabilities. While these accomplishments should be recognized and applauded, people in the disability rights movement have tried to make the public aware of the negative impact of referring to the achievements of physically or intellectually challenged people with excessive hyperbole.

• Use the word “special” with extreme care when talking about people with intellectual disabilities. The term, if used excessively in references to Special Olympics athletes and activities, can become a cliché.

Become a Volunteer
Volunteering with Special Olympics creates change that carries forth from our Programs and into the world. Whether you’re an individual or a member of a school, church, work, civic or other group; whether you can volunteer for just a few hours on a single day as a scorekeeper, or several hours a week, year-round, as a special events coordinator; there are volunteer opportunities for you.

Support the Special Olympics
Your Gift can change a Life.

National Specially-Abled Pets Day May 3, 2011

National Specially-Abled Pets Day 

National Specially-abled Pets Day celebrates these amazing and heroic animals, helps to educate the public about caring for disabled pets and find homes for orphaned, specially-abled pets.  Pets that become challenged due to disease, birth flaws or injuries, tend to develop greater senses than your average pet. Most of the time it's as if they never had to readjust to life and we need to keep up with them!"

Celebrated nationally and internationally on May 3rd, National Specially-abled Pets Day encourages adoption always and for people who would like to bring a new furry family member home, to consider a specially-abled pet.

Frankie, the Walk 'N Roll Dog

A true, inspirational story about a dachshund whose life started out just like any other dog walking on all four paws until a spinal injury leaves her paralyzed. Frankie is custom-fitted for a wheelchair and learns to keep on rolling. Her zest for life will have you cheering and she will give you hope that all things are possible. Frankie will leave an everlasting and loving paw print on your heart. A book for all ages to teach overcoming challenges and also compassion for the physically challenged.

Book Trailer

 

National Best Book by USA Book News for children's picture book soft cover

Merial Human-Animal Bond Award by Dog Writer's Association of America

Editors Choice Award by Allbooks Review

Indie Excellence Finalist

Frankie inducted into 2009 Wisconsin Pet Hall of Fame

To learn more about Frankie, the Walk'N Roll Dog, visit:

Joyful Paws

Facebook: Frankie the Walk N Roll Dog

World Autism Awareness Day April 2, 2011

Autism is a lifelong developmental disability that manifests itself during the first three years of life. The rate of autism in all regions of the world is high and it has a tremendous impact on children, their families, communities and societies.

Throughout its history, the United Nations family has promoted the rights and well-being of the disabled, including children with developmental disabilities. In 2008, the Convention on the Rights of Persons with Disabilities entered into force, reaffirming the fundamental principle of universal human rights for all.

The United Nations General Assembly unanimously declared April 2nd as World Autism Awareness Day to highlight the need to help improve the lives of children and adults who suffer from the disorder so they can lead full and meaningful lives.

World Autism Awareness Day 2011
Message by UN Secretary-General Ban Ki-moon

National Autism Awareness Month

The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. They do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.

Founded in 1965 by Dr. Bernard Rimland, Dr. Ruth Sullivan and many other parents of children with autism. The Autism Society is the leading source of reliable information about autism. The Autism Society's Advisory Panel is comprised solely of individuals with autism. They help Autism Society staff create programs and services that will advocate for the rights of all people with autism to live fulfilling, interdependent lives.

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