Wheelchair Ballroom Dancing

On May 5th, I had an oppotunity to attend the abilities Expo held at the New Jersey Convention and Expo Center. I attended a wheelchair ballroom dancing demonstration conducted by the Nyemchek Dance Center located in Pearl River, New York. It was simply amazing to watch men and women in wheelchairs doing the cha cha, and samba.

I was able to locate video showing Nick Scott and Aubree Marchione, the first couple to represent the United States in a world paralympic dancesport dancing the Samba. Truly amazing.

Feds: Schools must Open Sports to Kids with Disabilities

For the first time, federal officials are telling school districts that they must offer students with disabilities equal access to school sports. In guidance issued Friday to districts across the country, the U.S. Department of Education's Office for Civil Rights said that children with disabilities have the right to participate in their schools extra curricular activities under Section 504 of the Rehabilitation Act.

October is Down Syndrome Awareness Month

Facts: 

• In 1866, the physical characteristics of people with Down Syndrome were linked with decreased intellectual disability and grouped as one syndrome.
•  John Landon Down, was the first to publish these findings.
• Down Syndrome is a condition in which a baby is born with an extra chromosome.
• Even though people with Down Syndrome might have have some physical and mental features in common, symptoms can range from mild to severe.
• Physical signs of Down syndrome include, small hands and feet, tiny white spots on the iris, and a single crease across the palm of the hand.
• CDC estimates that each year, about 6,000 babies in the United States are born with Down Syndrome.
• Physical problems associated with Down syndrome include, a birth defect in the heart, stomach problems, problems with memory, concentration and judgement.
  

RESOURCES

Family Blogs

Down Syndrome New Mama

Enjoying the Small Things

Josiah's Journey

Life As We Know It

Noah's Dad 

WEBSITES

Centers for Disease Control and Prevention

Pub Med Health

Wikipedia

Medline Plus

NICHCY Disability Fact Sheet

National Association for Down Syndrome

National Down Syndrome Society

Youtube video on understanding Down Syndrome

 This next video really made my heart smile.

Child with autism inspires business, its patrons

When Marcie and Derek Williams' 3-year-old son was diagnosed with autism, the Louisville couple accepted that his life would be different from other children.

They decided it would be up to them to make sure Blake- Marcie's first child and Derek's fifth- had the same opportunities to grow up to be an independent adult as other children in their Louisville household.

August is Spinal Muscular Atrophy Month!

What is Spinal Muscular Atrophy?
 Spinal Muscular Atrophy (SMA) is an incurable automosal recessive disease caused by a genetic defect. The disease usually develops early in life and is the leading genetic cause of death in infants and toddlers.

Statistics
- Affects as many as 10,000 to 25, 2000 children and adults in the United States.
- One of the most common rare diseases.
- 1 in 6,000 to 1 in 10,000 children are born with the disease.
- 1 in 50 people are carriers of the disease.

Causes
Linked to a genetic mutation in the gene.

Symptoms

•  hypotonia in legs, arms, ribs, chest and facial muscles
• difficulty in achieving developmental milestones
• respiratory distress
• difficulty in swallowing and feeding
• lack of head control
• decline in posture

Four Types of Spinal Muscular Atrophies

Infantile- stage 1	0-6 months	Develops in the first months of life. Generally do not live past two years of life due to major body organs shutting down very quickly
Intermediately- stage 2	6-18 Months	Affects children who are never able to walk or stand but are able to maintain a sitting position. Symptoms are usually noticed between the age of 6 and 18 months. As the body muscles are weakened, the respiratory system is greatly affected.
Juvenile- stage 3	18 months+	Usually manifests after the age of 18 months. Symptoms include children who are able to walk and will later lose this ability. Life expectancy is normal.
Adult onset- stage 4	Adulthood	Usually develops after the age of 30+ with gradual weakening of the muscles. Often will lose the ability to walk. Life expectancy is normal.

Treatment

• Physical Therapy
• Occupational Therapy
• Assistive Technology
• Respiratory Care
• Nutritional Care

I wanted to share with you the story of one family and their struggle with having a daughter born with SMA:

References

Wikipedia

Public Medical Health

National Human Genome Research Institute

Resources

www.fsma.org

www.smafoundation.org

www.genome.gov

www.fightsma.org

Community Inclusion

One of the challenges we face in the developmental disability field today is how to get people with disabilities more involved in the communities they live in. In a survey conducted by Harris poll, there continues to be a community participation gap between people with disabilities and people without disabilities. For instance:

• 81% of people with disabilities, compared to 67% of people without disabilities say they never go to community service organizations, either to participate in the organization's activities or to avail themselves in the organization's services.
• A similar gap appears when contrasting attendance at outdoor community places such as the beach or park. While 58% of people people without disabilities go to these places at least once a month, only 44% of people with disabilities do the same.

Just as we have relationships with people in the community, it is time for us to push very hard to make sure people with disabilities are given the same opportunities. We have come a long way in the 20+ years I have been working in the field. However, we still have a long way to go. When I entered the field in the 1980's, community inclusion meant recreation trips. Yes, we would go bowling or to the movies, but how many people were really interested in those activities? We stayed together as a group and never really gave people with disabilities the opportunity to interact with other people.

Today, community inclusion must mean going to the mall. Regardless of the suburban mall I go to, I can always pick out the group. Usually 5-8 people with disabilities walking with 2-4 counselors. Although going to the mall is a nice community trip, I believe the concept is missing. Is it normal for us to go to the mall in a herd? the answer is no.

What would make community inclusion work in this setting would be breaking up the group into smaller groups. There are enough stores where people can go to different locations and then meet up later for lunch. There should also be an opportunity for people to meet individuals who work in the store, thereby forming their own relationships with people in the community.

Other suggestions include:

• attending church or synagogue where they would have the opportunity to not only attend service, but join organizations within such as the choir.

It is time to make community inclusion really mean community inclusion!

Resources

http://www.communityinclusion.org

http://www.cc-inclusion.org