Finding The Words To Talk About Disability

Read More Here
http://www.huffingtonpost.com/amy-julia-becker/finding-the-words-to-talk_b_1449819.html

William came home from school a few weeks back and he said, "Mom." He said it as a sentence, the way he does when he has something important to tell me. And then again, "Mom. My friend Ashley is not good at listening. And she screams."

William is three. He attends a local public preschool, and he's in an "integrated" classroom, which is to say, a classroom where typically developing children learn and play alongside children with special needs. Three years ago, William's older sister Penny was in the same classroom, but she entered it with an "I.E.P.," an Individualized Education Plan. Penny has Trisomy 21, also known as Down syndrome, and that third chromosome impacts nearly every aspect of her development. She wears braces to support her flat feet and weak ankles. When she was in preschool, she relied on sign language in addition to spoken words to communicate. She received Occupational Therapy, Speech Therapy, and Physical Therapy as a part of her classroom experience.

Stormy Rich, Florida High School Student, Barred From School Bus After Reporting Bullying Of Special Needs Student

Read More Below

http://www.huffingtonpost.com/2012/05/28/stormy-rich-florida-high-_n_1551350.html

Stormy Rich, an 18-year-old Florida student, says she was punished after reporting bullying of a special needs student on a school bus, and standing up to those bullies when the school didn't take action.

Rich, an Umatilla High School student, was riding on a middle school bus because she had earned enough credits to avoid a first-period class, getting to school later by taking the bus for the neighboring middle school, the Daily Commercial reports.

But one girl on the bus -- a special needs student -- was regularly being picked on by her peers, but couldn't comprehend what was being done to her.

"Just because she doesn't understand doesn't mean that should be happening to her," Rich told WOFL-TV.

Why are anti-abortion legislators cutting essential funds for special-needs children?

Why are anti-abortion legislators cutting essential funds for special-needs children? 

Read More The Pro-Life Parad

On April 12, Governor Jan Brewer signed a bill making Arizona the eighth state in the union to ban abortions beyond 20 weeks. Like most other laws of its kind, House Bill 2036 had been camouflaged as a measure against suffering, predicated on the notion that a fetus at 20 weeks can feel pain. Every woman who’s ever been pregnant, however, knows what the law really means: Twenty weeks marks a crucial point in a pregnancy, when fetal abnormalities can be detected, often for the first time. Many women confronted with a grim prenatal diagnosis choose to have an abortion. Now, in Arizona, they can’t.
It would be logical to expect, then, that these new restrictions on abortion would be accompanied by increased public services for women and children—especially for children with developmental disabilities. The laws should also lead to stronger support for physically, intellectually, and developmentally disabled teenagers and adults—which is, after all, what the healthier and luckier of these babies grow up to be. You might expect the people passing these laws to rally behind the Patient Protection and Affordable Care Act, which bars insurance companies from turning anyone away based on a pre-existing condition; after all, no condition is more pre-existing than one you’re born with. 

Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

May 24 2012 by Rachel Flint, Chester Chronicle

GIGGLING, smiling and laughing, it’s hard to imagine that toddler Dylan Edge is anything but a healthy happy child.

But without constant care and medical treatment, Dylan – who has suffered from Patau’s syndrome since he was born and regularly lapses into fits and seizures - would have died when he was born.

Now, almost three years after Dylan’s parents Claire and Stuart faced losing their newborn baby, the couple are hoping to raise thousands of pounds for Alder Hey Children’s Hospital which they say helps keep their family alive every day.

“We really want to do this walk, we have done a lot of fundraising events but this is our biggest challenge yet,” said Claire, who last walked the Sandstone Trial when she was a teenager and will now be walking it with 23 doctors, nurses and friends and family.

Read More here
Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

New changes in LWT13

We are expanding!!

Living With Trisomy 13 is now AN OUTREACH FOR TRISOMY AND OTHER RARE DIAGNOSES.

We are expanding to encompass a larger group of families. There are many families out there with a diagnosis similar to Trisomy 13. These families to have now where to turn and need hope, courage and inspiration. Come visit our site www.livingwithtri13.org and see our albums. If you are a parent or family member facing a difficult rare diagnosis, have an encouraging story of hope, or a treasure memory story to share please contact me Vanessa@livingwithtri13.org.

I would also like to give a very warm welcome to our newest board member Robin Martin. Robin will be joining our organization as the Director of Administrative Services. 

Take care and God bless

Vanessa Hernandez

Executive Director

Living With Trisomy 13

An outreach for trisomy and other rare diagnoses

Global News Trending...The children survivors of Trisomy 18 and 13 are increasing

Global News Trending

The children survivors of Trisomy 18 and 13 are increasing 
http://www.gtdaily.com/the-children-survivors-of-trisomy-18-and-13-are-increasing

Children with Trisomy 18 managed to survive to older ages. This study result will be a great news for parents of children with Trisomy 18 and 13 because more children are surviving for this disease. Details!!!!!Trisomy 18 and 13: More children are survivingStudy shows children with disorder are surviving to older ages.
Trisomy 18 is a rare genetic disorder that is considered fatal, but according a new study, there may be hope for the children affected.
Dr. Shawn McCandless, Director of the Center for Human Genetics at University Hospitals Case Medical Center in Cleveland said that the treatment and care of the children with Trisomy 18 and 13 may impact their ability to survive. “We don’t know how well these kids can do until we give them every opportunity to do their very best,” he said. (Danielle Adams – collegenews.com)

Mother's fury after Facebook BANS her for posting pictures of her baby son who lived for just eight hours after being born with rare birth defect

Mother's fury after Facebook BANS her for posting pictures of her baby son who lived for just eight hours after being born with rare birth defect

Read more: http://www.dailymail.co.uk/news/article-2146588/Mothers-fury-Facebook-removes-pictures-baby-son-lived-just-hours-born-rare-birth-defect.html#ixzz1vK9c01kH

'They of course gave us the option to terminate,' said Heather. But they chose to carry their baby full term and turned to God for strength.

'My husband and I, we started prayer and we knew that God knew since the beginning of time that he had us for this,' she said.

According to Facebook's community standards page, there are nine types of content that may be deemed offensive and removed: Violence and Threats, Self-Harm, Bullying and Harassment, Hate Speech, Graphic Violence, Nudity and Pornography, Identity and Privacy, Intellectual Property and Phishing and Spam

Heather said she has no idea which category her child's picture falls under but has now launched a protest  - posting the picture several times and getting her friends and family to contact Facebook