Study Finds Autism More Challenging For Caregivers

By Michelle Diament from disabilityscoop.com

Caregivers of kids with autism report more trouble accessing services and a greater impact on their families than do parents of children with other developmental disabilities.

Despite having some similar needs, a new study indicates that the experiences of families living with autism differ significantly from those with intellectual disability, cerebral palsy, Down syndrome and other developmental disabilities as well as those with mental health conditions.

For the study, researchers looked at survey data collected through the federal government’s 2009–2010 National Survey of Children with Special Health Care Needs. They focused on responses from more than 18,000 caregivers of children ages 3 to 17 with autism, other developmental disabilities or mental health conditions.

Read more HERE.

ESPN, Ben Affleck To Honor Man With Cerebral Palsy

Actor Ben Affleck is set to present an award for perseverance to a father-son team who have competed together in more than 1,000 races despite the younger man’s severe disabilities.

Rick Hoyt, 51, has cerebral palsy and is unable to use his hands or legs. But with the help of a custom-made wheelchair steered by his father — Dick Hoyt, 73 — he’s blazed through finish lines at triathlons, marathons and other endurance events for over 30 years.

Now the duo, known as Team Hoyt, will be honored at the ESPYS, an awards show presented by ESPN highlighting the best in sports for the year. Affleck — a Boston native — will present the Hoyts with the Jimmy V Perseverance Award at the event July 17, ESPN said.

The Hoyts had indicated that this year’s Boston Marathon would be their last. But after bombs exploded at the event when the men were just one mile shy of the finish line, they vowed to compete again next year. ESPN indicated that the Hoyts’ commitment to race again is testament to the pair’s “determination in the face of adversity.”

Read more of Shaun Heasley's Disability Scoop article HERE.

Jack Carroll - Britain's Got Talent

Talk Therapy an Option for Those Using Assistive Technology to Speak

Orlando

When asked to work with patients who don't speak, but use assistive technology to communicate, psychologist Amy Szarkowski said yes.

Szarkowski, of Harvard Medical School's psychiatry department and Children's Hospital Boston, works with many clients who are deaf and hard of hearing, so she had a lot of experience overcoming communication challenges to provide therapy.

"We know the communication language is not perfect, so let's work around it," she said while presenting her work at the American Psychological Association's annual convention here earlier this month.

These new cases were a new challenge, however. (Other psychologists had already turned them down. And in one case, the insurance company was reluctant to cover therapy—because the patient couldn't speak.) One was an adult with cerebral palsy, the other a teen with the same condition. Neither had cognitive disabilities. Both had extremely limited ability to move, which made using their text-to-speech devices slow-going. The adult used a tool attached to his head to tap the device. But would Szarkowski really be able to tell what these patients thought and felt through a piece of equipment?

Before meeting with the clients, Szarkowski met with a speech-language pathologist. She realized that she would have to guess, at least a little, at what her new patients were saying—the opposite of what psychologists are trained to do.

"You don't want to put words in their mouths," she said.

Read more of Nirvi Shah's On Special Education article HERE.

In Breakthrough, Study Finds Cerebral Palsy Treatable

Medication may be able to sharply alter the course of cerebral palsy, scientists said Wednesday, after finding that animals with the developmental condition responded remarkably to a new treatment.

Within five days of being given an anti-inflammatory drug, researchers found that newborn rabbits with cerebral palsy made dramatic progress. The animals were able to walk and hop, tasks they’d had great difficulty with prior to the treatment.

The findings, reported in the journal Science Translational Medicine, offer tremendous promise for people with the developmental disability, researchers said. “This suggests that there is a window of opportunity to prevent cerebral palsy,” said Roberto Romero, chief of the Perinatology Research Branch of the National Institutes of Health and an author of the study.

For the study, researchers replicated in rabbits the brain inflammation often seen in people with cerebral palsy. They then used tiny molecules known as dendrimers to deliver an anti-inflammatory drug called N-acetyl-L-cysteine, or NAC, directly to the affected part of the brain. The rabbits that received this treatment showed marked progress as compared to those who received saline or NAC alone without the targeted drug delivery, though benefits were seen in both groups that received medication.

“This is an exciting breakthrough and it certainly points toward new hope for those affected by cerebral palsy,” said Rangaramanujam Kannan, a chemical engineer at Wayne State University who worked on the study. “More questions need to be answered, but the potential is immense.”

Read more of Michelle Diament's Disability Scoop article HERE.

Advocates File Complaint Against District Over Use of Walker

By Nirvi Shah from On Special Education

An advocacy group filed a complaint this week against the New Caney school district in Texas because the district won't let a 5-year-old student with cerebral palsy use her walker at school.

The girl, LaKay Roberts has been in preschool in New Caney for two years. She uses a combination of a walker and personalized wheelchair to help her get around.

Her education plan, worked out between district staff and LaKay's family, says that among her goals is one to "increase her balance while walking in walker," the Austin-based advocacy group Disability Rights Texas says. LaKay's doctors and therapists say she needs to use her walker as much as possible to become less dependent on her wheelchair and help her legs become stronger.

Read more HERE.

College Hoops Star Puts Sister With Disabilities First

One of the most closely watched players during March Madness this year almost gave up basketball entirely to be near her sister with severe disabilities.

Elena Delle Donne was the top women’s basketball recruit in the country when she decided to play for the University of Connecticut in 2008. But just two days into her tenure at the highly-ranked program, Delle Donne abruptly left.

She returned home to Delaware and wouldn’t play basketball again for a year. Delle Donne was, however, able to be with her older sister Lizzie who is blind, deaf and has cerebral palsy.

“She knows me by my smell and my feel, so, physically, physical contact is the only thing she knows,” Delle Donne told ABC News. “So when I did leave, I lost Lizzie basically. Well, she lost me and I wasn’t OK with that when I left.”

As a junior this season at the University of Delaware, Delle Donne averaged 27.5 points — more than any other player in the country — and helped her team win an NCAA tournament game for the first time ever. They lost Tuesday night in the second round to the University of Kansas, but the young star says she’s not looking back.

Read more of Shaun Healey's Disability Scoop article HERE.

Junior with cerebral palsy reminds Greenview (Il) it’s about more than wins

Joel Washko was a talented athlete in high school, and he went on to play NCAA Division I college baseball. Sports are all about winning at that level.

But Washko knew that victories, at least in the literal sense, could be few and far between for the boys basketball team at Greenview High School when he accepted the head coaching job for this season. The Menard County school has an enrollment of 67 students, and there was very little varsity experience on this year’s roster.

With small-school regional tournaments starting this week, Washko will remind his players that everyone starts the postseason 0-0. But the Bulldogs, 1-23 in the regular season, will be underdogs tonight when they meet Hartsburg-Emden in the Class 1A Mason City Illinois Central Regional.

Washko admits this season’s experience has led him to measure success in different ways. And if he needs to be reminded about keeping things in perspective, Washko thinks about Shelby Bard.

“I played on high school teams that were really competitive,” Washko said. “But this has opened my eyes a little bit. I knew coming into the season, talent and experience-wise, we weren’t there. But they’ve all gotten better and made strides.

“With Shelby, it’s really nice to see what happens when he plays. It definitely shows you a great side of high school athletics. For our kids, Shelby’s their brother. They take to him. I think it says something about Shelby and about small-town mentality.

“It’s nice to see. They’re all very close.”


Special player

Bard, a junior, does not carry impressive statistics. He’s not a starter, and he usually doesn’t enter a game until its latter stages. But he has a special place on the team, mostly because he enjoys being on the court — or at least in uniform — despite suffering from a form of cerebral palsy.

“It’s been a tough season, but watching Shelby is awesome; it’s amazing,” said Justin Whitcomb, one of just two seniors on this year’s team. “I look forward to watching him play.

“He and I are pretty close. He’s definitely great to have around.”

Bard has made six 3-point baskets in varsity play this season, although he’s also played in junior varsity games. He considers the long-range shot his specialty, and it’s rare if fans for both teams don’t stand up and cheer when Bard hits one.

Read more of Dave Kane's The State Journal Register article HERE.

Michael Kutcher talks about twin brother Ashton, life with cerebral palsy

OTTUMWA, Iowa - The motivational speaker had a lot of wisdom to share: How he overcame challenges, found out who he was and learned to accept himself with his good points and bad. And the students seemed to get it. But they also wanted to know how close he and actor Ashton Kutcher are.

"We're twins ... and I consider him my best friend," said Michael Kutcher, talking to kids Thursday at Ottumwa High School.

Christopher Ashton Kutcher almost grew up without a brother, Mike said. Their mom and her doctor thought she was having a boy. They were surprised when it turned out to be two boys.

Ashton was born first, at 10.5 pounds. Mike referred to his twin as Jabba the Hutt, the slug-like, gigantic "Star Wars" character. A few minutes later, Mike was born. He weighed just 4 pounds and was over-oxygenated.

"The doctor told my parents, 'You might want to name and baptize him. He may not survive.' Of course, Jabba the Hutt was fine. I tell people he must have ate everything while we were in the womb."

When the boys were 3, Mom realized that while Ashton was running around just fine, Mike was not moving the way he should, was lagging behind and just seemed generally "slow."

Doctors diagnosed him with cerebral palsy.

Read more of Mark Newman's Ottumwa Courier article HERE.

Join us for a free screening of the award-winning documentary, INCLUDING SAMUEL and discussion with the author

The Child Care Inclusion Challenge Project Presents

Including Samuel - A film by Dan Habib

Tuesday, January 10 - 6:00 to 9:00 pm

The Bay Theater at the Aquarium of the Bay, Pier 39

The Embarcadero and Beach St., San Francisco

Including Samuel chronicles the Habib family’s efforts to include their son Samuel, who has cerebral palsy, in every aspect of their lives. The film also portrays the journeys of four other individuals with disabilities and their families. Including Samuel is highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.

Join us and enjoy these Program Highlights

• 6:30 film screening followed by Q&A with Dan Habib

• Child Care Providers receive 2.5 hours of Professional Development

• Learn about the “I am Norm” national inclusion campaign

• Preview of Habib’s new film, Who Cares About Kelsey?

• Get a copy of Essential Best Practices in Inclusive Schools

• Light refreshments

RSVP for this Free Event

• Online at www.childrenscouncil.org/?q=samuel

• By phone to Maiysha Dickerson at 415.343.3309

Thank you for your support

• Children’s Council of San Francisco

• Support for Families of Children with Disabilities

• San Francisco Recreation & Parks

• Aquarium of the Bay

• Union Bank

About the Filmmaker

Dan Habib is the Filmmaker in Residence at the Institute on Disability at the University of New Hampshire. Including Samuel was broadcast nationwide on public television stations in Fall 2009. It has been screened at universities, national conferences and independent theatres across the country. The DVD is available in 17 languages, with closed captioning and audio description.

Kids' triathlon strengthens brothers' bond

By Jessica Bliss from The Tennessean

Applause swells through the aquatic center as Conner Green swims. Splashing with determination, he reaches mid-lap in his very first triathlon as the crowd of spectators urges him forward.

The 7-year-old stares ahead, peering through the lenses of his blue-rimmed goggles, and kicks hard. One hand grabs at the water in front of him. The other hand tugs the raft behind him, where his 5-year-old brother, Cayden Long, enjoys the ride.

Cayden has cerebral palsy. He can’t walk. He can’t speak. But with his brother’s help, he can swim, bike and run.

Read complete article HERE.

Study Finds Magnesium Sulfate May Offer Protection From Cerebral Palsy

In a study to be presented today at the Society for Maternal-Fetal Medicine's (SMFM) annual meeting, The Pregnancy Meeting ™, in San Francisco, researchers will present findings that showed that in rats, the use of magnesium sulfate (Mg) significantly reduced the neonatal brain injury associated with maternal inflammation or maternal infection.

See the Redorbit.com article HERE.

Non-verbal spelling bee winner

By Kevin Boie | MYFOXDFW.COM

RICHARDSON, Texas - Tanu Shivaswamy suffers from cerebral palsy and can't speak, but those obstacles didn’t stop her from winning her school spelling bee and moving on to district finals.

In fact, the 10-year-old Canyon Creek Elementary student on Wednesday afternoon was slated to square off in the Richardson Independent School District bee.

While the fifth-grader walks with a limp and shows signs of other physical limitations, her mind is unaffected by the illness, said district representative Tim Clark.

"Her cognitive ability is just fine," Clark said.

In fact, he said, Tanu is the first-ever non-verbal spelling bee winner in RISD.

To compete, Tanu listens to the questions and responds using American Sign Language. Her interpreter then speaks the answers to the judges.

The method clearly works for Tanu but her father was concerned that the district bee would not allow it. So, he shot video of his daughter during the school-level competition and uploaded the clip to YouTube.

The footage allowed district officials to see Tanu in action and approve the winning approach.

Clark said the remarkable girl not only has brains, but personality to spare.

"She lights up the room when she walks in," Clark said.

Watch Tanu in Action HERE.

Augmentative Communication For All

Recently I was speaking with a friend who has worked with special needs kids for a long time. She asked me who Augmentative and Assistive Communication is appropriate for. Many parents have the same question, and in my experience most of it find out about it outside of school-- at conferences, during those late night obsessive internet searches or from other parents. AAC is a subset of Assistive Technology. 

That is too bad, because AAC can be a miracle, a way to tap into the minds of children who are trapped in a body that won't allow them to communicate the way the rest of us do. CAC has been working on the area of Assistive Technology (AT) for two years now to learn more about the District's services and delivery and how they have improved as one of the areas of agreement in the consent decree. 

Under IDEA, IEP teams must consider Assistive Techchnology, including AAC, for every child with a disability. That is all well and good, but who is an AAC user?

Any child who is language delayed or non-verbal is a potential AAC user, regardless of disability type. If your child uses sign language or PECS, or even tries to communicate with you using a variety of strategies like gestures, leading you to things, or vocal approximations, he or she IS already an AAC user-- he or she IS already using alternative means to communicate. 

This means many students with autism, cerebral palsy and other disorders are potential AAC users. You can read a case study of a child with autism using a speech generating device here. You can learn more about the assessment process here.

If you think your child is a potential AAC user, or is an AAC user now, a full AAC assessment can help your IEP team to learn more about what devices and services would be appropriate in supporting their educational progress.