March 21, World Down Syndrome Day Joan Guthrie Medlen, M.Ed, RD the Down Syndrome Nutrition Handbook

March 21, 2013 marks the 8th anniversary of World Down Syndrome Day and was officially observed by the United Nations since 2012. Down Syndrome International encourages people all over the World to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

This year's World Down Syndrome Day Conference is entitled: "Right To Work".

Article 27 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) recognises the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.

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

Nutrition Notes. From Helping a child with Down syndrome learn self-feeding skills, WebMD.

Down syndrome often affects the muscles in the mouth, causing the tongue to stick out. This may interfere with feeding, including breast-feeding, bottle-feeding, and eating solid food. Most children overcome these types of problems, although they will likely master eating skills at a later age than other children.

Resources

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.

International Down Syndrome Coalition 

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

 



Visit the following link to learn more about  World Down Syndrome Day. 

 

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. 

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        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