Wednesday, April 16, 2014

Dancing away differences: Event draws awareness to Down Syndrome, other disabilities

by Mike Landis and Robin Yancey from KY3:
Shuffling their feet to the beat, kids (and kids at heart) demonstrated their dance moves.
“The kids- they are dancers. I mean, that is the one thing that everybody always says about individuals with Down Syndrome…they can boogie,’ exclaimed Gretchen Miekley, Executive Director of Down Syndrome Group of the Ozarks.  The organization hosted a special ‘Spring Fling’ dance Friday night for individuals and families affected by Down Syndrome and other disabilities.
Down Syndrome, a developmental disorder, creates special hurdles for those like Khia Grey.
“I like going out and having a fun time with my friends,” she stated.
The event was a chance people with disabilities to forget about their challenges, and instead concentrate on being a kid.

Tuesday, April 15, 2014

Clarissa Serna Surprises Children On World Down Syndrome Day

by Caroline Flores from NBC 6:
CORPUS CHRISTI - The kiddos with Special Needs at The Rise School got a special surprise on World Down Syndrome Day. Local singer and "The Voice" contestant Clarissa Serna stopped by to have some musical one-on-one time with the children.
The rise school is a school for toddlers and preschoolers who have developmental disabilities. The children attending the school have disabilities ranging from Autism to Down Syndrome.
On this special day the children sang, danced, and made some beautiful music with Serna.
Serna has worked with The Rise School in the past performing at fundraisers for them. She says these children and this school have a special place in her heart.
"I used to babysit a child with Down Syndrome and he was just so amazing. They're really, really smart very beautiful children," said Serna.
The Executive Director of the school says to have Serna singing with the children is special... Because no matter what the is the one thing they all connect to and love.
"To have this experience with the kids, we'll never forget it. It's going to be a memory we will always have," said Andrea Elizondo The Rise School Executive Director.

Monday, April 14, 2014

DSR Episode #26: 321Foundation & IEPs!

Just a catchup episode here to keep you up to date.
First we did a quick wrap up on World Down Syndrome Day (March 21).  Then we jumped into the newest and coolest Ds Organization – the 321Foundation.  This new organization was started by a group of families in Delaware – One of which was our very own Rick Kosmalski!  Go Rick and friends!  Check them out at their site and go and like them on Facebook.  Check out the pictures of their kickoff gala on WDSD and while you are there, buy a T-shirt!

Then we simply gave a ‘kid by kid’ update on the IEP process.
  • Dexter (~3yrs) is just entering the school system.  Jason had their IEP but they are already in a private preschool and getting some private therapy so it was pretty low key.
  • Luke (5 yrs) is ready to go to Kindergarten.  Mark is worried about inclusion and the fact that there is only one teacher for ~25 kids. Luke will likely need some in-class support (an aide).  When you want more than they are willing to give – that is when IEP meetings are tense.  Our plan – bring food! (we actually give more advice in the episode – you should listen…)
  • Kayla (7 yrs) is in second grade – To Rick, the whole thing is dependent on the teacher – a good teacher means Kayla will have good year.  At this point the IEP is really a update from the previous year with improvements based on lessons learned.
Here are some lessons learned:
  • In general as husbands, we take on the role of ‘bad cop.’
  • It is best to ‘go in with a plan’ – in other words, know what services you want in advance.
  • The teacher is crucial.
  • If you feel that the situation/services set up is not working for your child, intervene IMMEDIATELY.  A ‘wait and see’ or ‘just give it a few months’ is just a bad idea.  You can quickly miss a half a year this way…
If you are looking for a good cause, our first ever DSR guest from waaay back in Episode 3, Dan Moreno, is running a 50K (that’s 31 miles!) in the mountains and desert(!) this weekend.  Show him some love and donate a few bucks to support Research Down Syndrome.
Sorry we haven’t had an episode in a while.  We have two great guests lined up, but we have had bad luck coordinating schedules.  We will keep the episodes coming – don’t worry…
Download Down Syndrome Radio, Episode #26.
Better yet…subscribe, rate us and leave a comment on iTunes!

Sunday, April 13, 2014

Easter Seals, Colquitt Regional Medical Center unite to provide jobs

from The Moultrie Observer:
MOULTRIE — Joel Reeves has a job. For most people, that’s not unusual, but for the 23-year-old with Down syndrome it’s a very big deal indeed.

Reeves is one of two people recently hired by Colquitt Regional Medical Center with the assistance of Easter Seals job coaches. Three others are in the Community Work Adjustment program with the goal of being ready to hire by the end of August.

Reeves works in an office behind the emergency room, where he’s helping the hospital become paperless, according to a press release from Easter Seals Southern Georgia.

“When Joel graduated from high school his dream was to work in an office setting and to live in his own apartment,” the press release said. “Both of his dreams have become a reality.”

Down syndrome makes Reeves move slow, so there was some concern that he wouldn’t be able to complete enough work, Easter Seals said. So, after two weeks of training, the hospital and Easter Seals conducted a time study, which found that Reeves completed as much work — and sometimes more — than other workers in the office in the same amount of time.

Saturday, April 12, 2014

UNCW, N.C. State to play in second annual ‘Harry’s Game’ to benefit TOPS Soccer

by Joe Catenacci from Port City Daily:
In an effort to bring awareness to Down syndrome and improve tolerance and understanding of children with special needs, the UNCW men’s soccer team will play in a charity match against the N.C. State Wolfpack on Saturday, April 12, at the UNCW Soccer Stadium.

“Harry’s Game” is set for a 7 p.m. kickoff, with proceeds going to TOPS Soccer. The program provides opportunities for kids with special needs and gives them a chance to play the “beautiful game.”
Nearly two years ago, Harry, the son of UNCW Coach Aidan Heaney, was born with Down syndrome. Heaney hasn’t missed a beat on the pitch and couldn’t think of a better to combine two of his loves, his family and the game of soccer.
“Harry has been such a blessing for our family. We knew early in the pregnancy he would be born with Down syndrome and, naturally, we were in shock. My wife and I did our research on what this would mean for Harry and our family. We continue to learn on how to be a parent with special needs,” Heaney said.
Heaney got the idea for the game from a colleague at Xavier, who also has a child with Down syndrome. After speaking with coaches at N.C. State at the end of this past season, they both agreed that this would be a great way to come together in support of a cause so close to home, Heaney said.
“It’s never something you think about when you start a family. Our son is a unique child, but I can tell you he wakes up with a smile on his face every morning and I’m sure he will teach me some things as he grows. Our hope is that he is able to enjoy opportunities that every child has. He has made our family unity closer,” Heaney said.
Tickets to Saturday’s friendly are $5 for adults, kids 15 and under and students are free. There will be plenty of activities for the kids, free food, drinks and face paiting.  There will also be a silent auction at the game for UNCW game jerseys in addition to N.C. State apparel.
“I hope the community comes out and supports the event, has a wonderful night. Our goal is to bring a smile to some faces and raise some money for TOPS Soccer,” Heaney said.

Friday, April 11, 2014

When it’s harder to lose weight

from Times of
World Down Syndrome Day, celebrated last month, promoted a healthier and active lifestyle. Rosette Gatt takes a look at how the physiological and behavioural aspects of this condition place these individuals at an increased risk of obesity.
Down syndrome, a genetic condition that causes delays in physical and intellectual development, occurs in one in every 800 live births and is not related to race, nationality, religion or social status.
The condition carries various health complications, but with appropriate medical care and an active lifestyle, most individuals can lead healthy lives. Nowadays the average life expectancy of individuals with Down syndrome is 55 years, with many living into their 60s and 70s.
Early childhood intervention, screening for medical problems, a sound and caring family environment, proper individualised education programmes and a supportive community can all improve the quality of life.
Unfortunately, recent research shows that between 30 and 50 per cent of children with Down syndrome are obese. Specific associated health and behavioural concerns in the individual with Down syndrome foster the development of obesity. A prevention and management plan thus needs to be mapped out for each individual to avoid negative consequences.
Weight gain in people with Down syndrome is a consequence of:
• physical characteristics, mainly short stature and hypotonic musculature also affecting ligaments, joints, hips, knees, pelvis and the spine;
• health concerns such as cardiac defects, thyroid function disorders, a decreased basal metabolic rate, gastro-intestinal tract anomalies, sleep apnea and sight defects;
• an inadequate diet because of dental problems, poor oral musculature and oral sensitivity;
• behavioural difficulties such as oppositional behaviour, impulsivity, negativity and non-compliance.

Thursday, April 10, 2014

Kuwait affirms keenness to care for people with Down syndrome

from Kuwait News Agency (KUNA):
A Kuwaiti official in the field of health and care for people with Down syndrome said on Thursday that Kuwait, with all its health, educational, and psychological institutions, is always keen to care for its citizens with Down syndrome, providing them with the best support which guarantees a better future for them.
Dr. Sadika Al-Awadi, Chairperson of Kuwait Down Syndrome Society, told KUNA that Kuwait was able to provide people with Down syndrome, of all ages, with medical, educational, rehabilitating, and entertaining services through the Society, indicating at the same time that some individuals with Down syndrome, who went through the Society's psychological and educational rehabilitation, showed remarkable perceptional and behavioral improvement as they also became dependent on themselves.

Wednesday, April 9, 2014

Popular town crier nominated for Pride of Bucks

THE man who was the UK’s first town crier with Down’s Syndrome has been nominated for a Pride of Bucks award.
William Ellis, 35, of Bois Moor Road, Chesham, recently stepped down from his position as Chesham town crier.
He hit national headlines when he was appointed in 2011. Before then, he spent a year as mayoral ambassador to Chesham’s town mayor.
Last month, he gave up the voluntary town crier role, with a presentation being held for him.
Mr Ellis was put forward for the award by Kathryn Graves, who is policy and projects officer for Chesham Town Council. “William has been an inspiring ambassador for Chesham and for people with learning difficulties, showing just what is possible,” she said.
“By having such a visible role in the community, William has given many residents the opportunity to meet someone with a learning disability and discover the positive contribution that they make to the town, something they may not otherwise have had the opportunity to do.

Tuesday, April 8, 2014

Working adults with Down Syndrome hardly get paid

A week after a new law aimed at protecting the rights of those with special needs was passed in the emirate, Rebecca Corley, founder of the All 4 Down Syndrome support group, tells SHARMILA DHAL the challenges those with Down Syndrome face and how the new law could change things for them.
Rebecca Corley, founder of the All 4 Down Syndrome support group talks about the challenges Down Syndrome patients face and how a new law could change things for them. Excerpts from an interview:

What are the main challenges facing children and adults with Down Syndrome in the UAE?
The main challenge is for parents to get children admitted into nurseries and schools as around 80 per cent of them are not inclusive. But high functioning children with Down Syndrome have a right to function in mainstream schools.

So where is the problem?
Most schools have long waiting lists and there are more and more kids who need learning support these days. In nearly nine out 10 times, children with Down Syndrome don’t get a chance because they need a full time shadow teacher/learning support assistant (LSA) which the parents must provide.

Monday, April 7, 2014

This Kind of Love

from the Huffington Post:
Two weeks ago, I got in my car to attend the meet-up organized by the International Down Syndrome Coalition (IDSC). I wore my "Love Doesn't Count Chromosomes" t-shirt, and so did every member of my family.
My 7-year-old asked, "Why does it say that?" I listened close as my oldest -- only 8 years old -- responded. "Some people think it's bad to have Down syndrome, but it's not. Having someone with Down syndrome in your family means that you have so much love, and we are so lucky to have this love."
I smiled. How strange to think I was initially sad when my daughter was born with Down syndrome!
How incredible that we were traveling to meet with other people who loved someone with Down syndrome. The gathering was purposed to celebrate their lives and to kick off World Down Syndrome Day. Indeed, we live with so much love.