Saturday, September 20, 2014

Franklin sisters’ bond used to highlight Down Syndrome Awareness Month

by Cheryl Makin from My Central Jersey:
Caryn Croll is a determined woman. She has come up against many obstacles in her 27 years, but has always pushed through to reach her goals. With her feisty and “can do” nature, Croll, born with Down syndrome, achieved academic and athletic success as a high school graduate and Special Olympic gold medalist.
Now the Franklin Park resident has her sights set on increasing awareness, opportunities and research for those with Down syndrome and other disabilities.
“We are all in the same boat,” she said. “We need to spread the word.”
Her face on Times Square
To this end, Croll will be featured on Saturday as part of the National Down Syndrome Society’s (NDSS) annual Times Square Video presentation. Croll’s photo helps highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. The image of Croll was selected from more than 2,000 entries in the NDSS worldwide call for photos. More than 220 photographs will appear in the video. Croll’s photo shows her along with her “little sister” Michelle Croll, 23.

Friday, September 19, 2014

Saudi govt to bear cost of treating kids with autism and Down syndrome

by Saad Al-Qabousi from the Okaz/Saudi Gazette:
The Ministry of Social Affairs will bear the entire cost of treatment and rehabilitation of children with autism or Down syndrome at domestic care centers, an official source at the ministry has said.

The official, who did not want to be named, said in the past the ministry was bearing only half of the cost. He said: “There are about 6,000 children with severe disorders who are unable to benefit from education in the government or private schools.

“The ministry will pay the full cost of their rehabilitation in the special centers inside the Kingdom.”

The official made it clear that the ministry's offer will not include children who are taken for rehabilitation abroad.

“The ministry will bear the full cost of the rehabilitation of autistic and Down children in the day centers that are licensed,” he said.

Thursday, September 18, 2014

homecoming king will make you smile

KMSP-TV
from My Fox 9:
Blaine High School homecoming king Brock Shepard fits the stereotype -- a popular, three-sport athlete with an amazing smile. More than 2,000 students selected Shepard as their homecoming king not because he has Down syndrome, but “because of what he means to the school in spite of it,” the school said.
“Everyone loves him,” homecoming queen Britney Monteon said. “He means a lot to the school. He's amazing.”
Shepard is known for his “infectious” personality at BHS. He's the manager of the Bengals wrestling and plays on the school's adapted floor hockey, bowling and soccer teams.

Congratulations Brock! Watch his coronation at http://youtu.be/nWZML9g52X4

Wednesday, September 17, 2014

Wednesday, September 10, 2014

Thank Chairman Camp and Ranking Member Levin for Their Support of the ABLE Act!

To Down Syndrome Advocates from the NDSS:

We are closer than ever to the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S.313) being brought to the House floor for a vote. We need your help in thanking Chairman Dave Camp (R-MI) and Ranking Member Sandy Levin (D-MI) of the House Ways and Means Committee!

We need your help! Please call and thank Chairman Camp and Ranking Member Levin for their support! Call-in script provided below.

Chairman Dave Camp: (202) 225-3561
Ranking Member Sandy Levin: (202) 225-4961

TALKING points

-I'm calling to thank Chairman Camp/Ranking Member Levin for all his efforts to reach a bipartisan solution and encourage you to do EVERYTHING he can to pass the ABLE Act (H.R. 647/S. 313) before Congress adjourns next week!

-The ABLE Act is the most bipartisan bill in this Congress right now - 80% of the entire Congress supports it. There are 74 Senators and 380 Representatives cosponsoring the bill.

-Your boss is a tremendous champion for all people with disabilities and the ABLE Act will make a HUGE difference in the lives of the disability community! Thank you!

Thank you for helping us #passtheABLEact; and as Sara Wolff said in her testimony, this year!

Best Regards,

Ginny Sessions
NDSS, Manager Grassroots and Development Programming
gsessions@ndss.org

Schwarzenegger congratulated by former staff

Former California Gov. Arnold Schwarzenegger gets a hug from John Masterson, 28, who has Down syndrome, after he unveiled his official portrait at the Capitol in Sacramento, Calif., on Monday, Sept. 8, 2014. The photograph-like giant image of the Republican governor was made by Austrian artist Gottfried Helnwein and will hang on the third floor of the Capitol. Masterson worked in the mail room when Schwarzenegger’s was in office and continues to work there today.

Tuesday, September 9, 2014

ALS Ice Bucket Challenge takes ugly twist

from Ken Amaro from First Coast News:
This summer the ALS Ice Bucket Challenge went viral and now the ugly side of an ice bucket challenge is spreading on social media.
"I can't even look at it," said Leslie Weed, the parent of an autistic child and founder of The HEAL Foundation, which stands for Healing Every Autistic Life.
"There is an explosion of bullying among disabled children," she said.
It happened in Bay Village, Ohio. A 15-year-old autistic boy who was lured into taking the ice bucket challenge got a bucket full of urine, feces and spit dumped on him.
" (It is) very disturbing," said Weed. "This young man didn't even tell his mother she discovered it on his cellphone."
Weed said what parents and advocates for the disabled have come to realize is, traumatic events like this have long-term effects.
"Their sleep patterns are disturbed, their anxiety levels really rise, their behavior tend to get worse and worse," she said.
The outrage on social media is loud and clear.

Monday, September 8, 2014

10 Things my Child with Down Syndrome has Taught Me

by Bleigh Ahl Garcia from News of Salem County:
It has been 1 year since Tristan was born, and 360 days since I received he news that he has Down Syndrome. As I sit here in amazement at the whirlwind of a year we have had with Tristan in our lives, I just wanted to share a few things I have graciously learned so far in this journey.
1. Always try to look at people through God’s eyes…. if you look with your own eyes, you might miss something.
Having Tristan has taught me to see people for who they really are. I’ve always thought I was pretty good at this because of how I was raised, but I have to admit that I was giving myself way too much credit. After having a child with Down Syndrome, God has softened my heart so much and has given me more compassion for all types of people. I didn’t realize how much I needed it. I no longer am fearful of or uncomfortable around people with developmental disabilities or brain injuries. That fear came from a place of ignorance and misunderstanding. Tristan may have different needs and need a little more attention and care, but raising him as been just as “normal” as raising our son without Down Syndrome. He is a child who needs to eat, sleep, poop and be changed. He smiles when he’s happy, and he cries when he’s not. He has feelings. He has a spirit. His life is precious, and he has a specific purpose and calling. Most of all, he is loved by a God who doesn’t make mistakes. When God looks at him, He is overwhelmed with love. That’s how He sees all of us. My prayer is that I have the ability to look at people and see the value of their spirit first, rather than their disabilities and outward appearance.
2. Celebrate the Small Victories.
I’ve come to realize that every effort that Tristan makes to make a sound or move on his own is a HUGE accomplishment. Have you crawled recently? Like, literally gotten on the floor and army crawled on your belly? Well if you haven’t, just trust me….it hurts. For a child with a developmental delay, a heart defect, low muscle tone, vision problems, and breathing problems… crawling 2 yards is like running a marathon. That is something that most of us ‘normal’ and healty adults would complain about on a daily basis without realizing it. So, we will celebrate every single “milestone” whenever it happens, even if it is 2 years later. Though some victories may seem small to others, they are huge to Tristan….and that’s worth celebrating.
3. Slow Down & Enjoy the Ride.
I have to admit, although we have our struggles, my husband and I could win an olympic medal at getting things done on a schedule. More specifically, healthy meal planning while on the go for a family of four. We

Sunday, September 7, 2014

Here is a great resource to share with your child's teachers

by KidsHealth.org from Nemours:

What Teachers Should Know About Down Syndrome 

Down syndrome (DS), also called Trisomy 21, is a chromosomal condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies born in the United States.
Kids and teens with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, and a protruding tongue. They tend to grow at a slower rate and remain shorter than their peers.
Cognitively, DS can affect learning abilities in different ways, but most kids and teens with DS have mild to moderate intellectual impairment. Children with Down syndrome have delays in speech and motor skills, and may need assistance with self-care, such as dressing and grooming.
Medical problems associated with DS can vary widely from child to child. While some kids and teens with DS need a lot of medical attention, others lead healthy lives. People born with Down syndrome are at risk for:
  • congenital heart disease
  • vision and hearing problems
  • thyroid problems
  • obesity
  • seizures
  • neck problems
Students with Down syndrome may:
  • need to go to school nurse for medications when necessary
  • miss class time due to frequent medical appointments
  • have behavior issues
  • need visual and auditory accommodations for classroom instruction
  • require physical, occupational, and speech therapies
  • need extra time and assistance with class work
  • require therapeutic staff support in the classroom

What Teachers Can Do

Students with Down syndrome can have a range of abilities, and there's no way to tell at birth what they will be capable of as they grow. Students with DS are capable of learning and developing new skills throughout their lives. They simply reach goals at a different pace. Remember to focus on the individual and learn firsthand about his or her capabilities and special needs.
Be aware of any medical concerns associated with Down syndrome that are specific to your student.
Students with Down syndrome are often enrolled in mainstream education systems and enjoy participating with peers in all kinds of classroom activities. Encourage physical fitness and involvement in all school activities, as well as extracurricular programs. Realize that you can make a big difference in your student's life. Learn the student's interests so you can create opportunities for the student to be successful in school.

Saturday, September 6, 2014

Woman says school guard played racist prank on son with Down syndrome

From The Times Herald Record:
A black New York woman says a white school security guard forced her 12-year-old son with Down syndrome to pose for a photo in a way that made it look like the boy was being frisked.
Brandiss Pearson's complaint has led Syracuse school officials to suspend the guard.
Pearson tells The Post-Standard of Syracuse the racist prank happened on Tuesday, the first day of school.
Pearson says she and son Brandon stopped in a hallway to snap pictures. She says the guard turned Brandon to face the wall and lifted Brandon's hands above his head on the wall, as if to be frisked. She said the security guard was laughing and said: "Now take the picture. He's in the right position."
The employee is suspended while the district investigates.