High Court Seeks Input on Case

The U.S. Supreme Court is asking the Obama administration to weigh in as it considers whether to take up a case brought by the family of a girl with cerebral palsy who sought to bring her service dog to school.

The family of Ehlena Fry petitioned the Supreme Court to take their case last fall. Rather than accept or decline the case outright, however, the high court this week asked the U.S. solicitor general to provide the federal government’s viewpoint before the court decides whether to hear the matter.

Changing the Look of Advertising

Something a little lighter but just a wonderful initiative. You may want to share the challenge with families.

PALOS PARK, Ill. — Fairies are everywhere, their little wings hanging askew as they pose in front of a 100-year-old barn in a Palos Park backyard. But these are no ordinary fairies —s ome are in wheelchairs, others have Down syndrome, they’re every ethnicity and age. And in the midst of the fairy fray stands the person who brings the magic to the photoshoot—photographer Katie Driscoll.

Driscoll, a Palos Park mom of six children, is the force behind the Changing the Face of Beauty campaign, a grassroots project that aims to include children of all abilities in the media and advertising.

An Open Letter to Jet Blue

Interesting Blog post by Shawna, a mother of two children with special needs. It originally appeared on her blog — Not the Former Things

Dear Jet Blue Airlines,

I am writing this post to thank you.My son has high functioning autism and, because of the custody arrangement between his father and I, we fly 7-9 times a year out of sheer necessity. Flying, with all of it’s loud announcements and crowded waiting areas and unusual smells, is quite frankly torture for him. He has acute sensory processing issues that affect us even in simple every day situations, so you can imagine how complicated airports and airplanes are for us.

When Caregivers Need Healing

“This has happened before,” she tells herself. “It’s nowhere near as bad as before, and it will pass.”Robbie Pinter’s 21-year-old son, Nicholas, is upset again. He yells. He obsesses about something that can’t be changed. Even good news may throw him off.

Dr. Robbie Pinter and her
son, Nicholas.

So Dr. Pinter breathes deeply, as she was taught, focusing on each intake and release. She talks herself through the crisis, reminding herself that this is how Nicholas copes with his autism and bipolar disorder.

Asking Children with Special Needs to Clear the Same Bar

Jackson Ellis will soon head to fourth grade. Diagnosed with autism spectrum disorder, he's been receiving publicly funded services since he was 15 months old. Jackson's mother, Rebecca Ellis, a single parent, has made education advocacy her career. She's fighting to make sure her son gets the help he needs at his Mandeville, Louisiana public school. That's always been an uphill battle. But, since the state adopted the Common Core State Standards, Ellis says, it's become even harder.

"There's always been a gap — academically, socially — between what he could do and other kids could do," she says. "When the standards changed, the gap grew into this canyon overnight."

New School Filling an Educational Void

One of those times we are proud to share a story about our elementary school -- Manhattan Star Academy -- for children with special needs.

Manhattan Star Academy, a privately-funded, non-profit school, hopes to bring to the Upper West side and Manhattan something that many parents of special needs children feel is lacking in the city school system: a place for their child.The Academy is part of the YAI network, a network of schools, training and health and human service agencies in New York and New Jersey that focuses on special needs children, teens and adults. Manhattan Star Academy is in its fledgling stages, with 10 children enrolled at the YAI Central Building in Chelsea. But by next year, the school for children ages 5-12 (the first school in the network above the preschool level), hopes to be open at their new Upper West side location, for 55 students eventually, right around the corner from Lincoln Center.

Top 10 iPad Apps for Special Ed

The iPad takeover of public education isn’t just confined to the mainstream classroom: Special needs educators, too, are finding that iPads can be a vital tool to support independence. What sets the iPad apart from other devices is the simple and visually robust user interface that can be used by almost everyone. It’s also a highly customizable device that can be set up with applications and features to support a variety of special needs.
With nearly a million apps in the iTunes App Store, identifying effective apps is often an overwhelming task for educators.

Meditation Can Provide Perspective to Parents of Children with Special Needs

From Huffington Post's Eden Kozlowski, Founder and CEO of Just Be Meditation.

I am the mother of a child with special needs. My daughter is 11 and was born with her brain's prefrontal lobe not fully developed. The condition is called pachygyria. If you Google it (which is the first thing I did when we were given our official diagnosis), you will be presented with a stifling litany of sites professing the medical challenges and potentially dire possibilities.

The current reality for my daughter: She is physically agile but has fairly extensive learning delays and mood highs/lows... and, at this point, we are seizure-free.

Now, on the other side of my life, I am a long-term practitioner and teacher of meditation and mindfulness. With all of the challenges presented with my daughter, I can honestly say that this practice has been my saving grace. I've had periods of anger and deep frustration but never to the point of sheer depression or hopelessness. Every time I felt like I was at a point of no return, it always pulled me forward with new direction, hope and perspective.

An Experimental Drug's Bitter End

Holly Usrey-Roos will never forget when her son, Parker, then 10, accidentally broke a drinking glass and said, “I’m sorry, Mom. I love you.”

Holly Usrey-Roos, right, with
Parker, 14, and Allison, 10
. Both have fragile X syndrome.

It was the first time she had ever heard her son say he loved her — or say much of anything for that matter. Parker, now 14, has fragile X syndrome, which causes intellectual disability and autistic behavior.Ms. Usrey-Roos is certain that Parker’s new verbal ability resulted from an experimental drug he was taking in a clinical trial, and has continued to take for three years since then. She said she no longer had to wear sweaters to cover up the bruises on her arms she used to get from Parker hitting or biting her.

Now, however, the drug is being taken away

.

Paying for Finn, a Special-Needs Child

Author Jeff Howe with son Finn.

What's wrong with this child? There are a lot of ways to answer that question.I don't mean that in an every-child-is-unique-as-a-snowflake way. I mean that my wife, Alysia, and I are pretty sure that Finn hails from some distant, unknown planet.

Replacements Anger Striking School Bus Drivers and Matrons

School bus drivers and matrons
protest.

STATEN ISLAND, N.Y. -- Momentum on the picket line grew among the striking yellow school bus drivers and matrons as they watched newly-hired replacements pick up their abandoned routes on Tuesday morning.

Between 50 and 60 buses rolled out of the Atlantic Express depot in Chelsea, according to Huguenot resident Ernie Maione, a member of Amalgamated Transit Union 118 who has been driving a special education route for more than 30 years.

Wyoming's Medicaid Overhaul Taking Shape

CHEYENNE, Wyo. -- Wyoming lawmakers are still ironing out details of legislation that would overhaul the state’s Medicaid program.
The legislation, now before the Senate Labor, Health and Social Services Committee, would implement a number of reforms to Medicaid. State health officials and advocacy groups say the bill could decrease costs, while making new services available to those already enrolled in the program.
Health officials spent Monday detailing how the reform package could address the increasing cost of Medicaid, which provides health coverage to about 77,000 poor and medically needy people in Wyoming.

Flu Outbreaks and What It Means for Children

From Pamela Wilson, BellaOnline's Children with Special Needs Editor.

Seasonal flu vaccine is recommended for all children and teens with neurologic conditions, including babies over 6 months, especially those who experience difficulties with muscle or lung function, have smaller airways as is common in Down syndrome, or have difficulties swallowing, coughing, or otherwise clearing fluids from airways.

We continue to learn about how suspected flu pandemics will adversely affect children with disabilities as statistics and stories from the 2009 Swine Flu (A1N1 Influenza) and other recent outbreaks are collected. A high risk of life-threatening complications have been found for children who have intellectual disabilities, developmental delays, seizure disorders, MD, stroke, cerebral palsy or other brain or spinal cord problems. The nasal spray vaccine is not recommended for children under the age of two or those with chronic health conditions.

Autism Strains Yet Strengthens a Marriage

Nancy Clarke and Jay Petrow.

From The New York Times' Booming Blog's Making it Last column, profiling baby boomer couples who have been together for 25 years. This post is by Steven Petrow.

Last summer, Nancy Clarke, 54, and Jay Petrow, 53, celebrated their silver wedding anniversary with family members in the backyard of their Westport, Conn., home. As Jay's brother, I was best man at their 1987 wedding at our parents’ house in Southampton, L.I., and since then have watched as he and Nancy have taken on an extraordinary challenge — raising an autistic and seriously disabled son, William, who is now 19.

For two decades Jay worked “10 to 10” as a magazine art director, and then five years ago decided to make a new beginning, starting a landscape design company. Nancy, a Princeton graduate and former Wall Street trader, became a stay-at-home mom after William’s birth. They also have a daughter, Anna, who’s 15. Following is a condensed and edited version of our conversation about their marriage.

Opinion: It's Not About Cost; It's About Need

This letter is by Julie Cunningham, LICSW, who is the executive director of Families First Vermont. She sent it to Gov. Peter Shumlin, Sens. Patrick Leahy and Bernie Sanders, and Rep. Peter Welch. It pretty much could apply to any resident of any state who is concerned about cuts in services.
 
Dec. 17, 2012
Dear Gov. Shumlin,
Like you, I have been watching the tragedy in Newtown, Conn., and trying to comprehend how society has become completely unsafe for our children. I know that you have dedicated much time and energy to thinking about Vermont’s youth, and that you are invested in doing what you can to avoid a similar catastrophe in our state. Since our mental health and developmental services system have been undergoing major systems changes, I would like to share with you some of my thoughts about our shared concerns for our future.
As a community-based social worker for 25 years and for the past 13 years as director of a specialized service agency, I have worked closely with hundreds of families who are struggling with a child with a mental illness or a disability. I have noticed, over time, a steady decrease in services that are available for children — most notably in special education — but also in agency programming. Most families come into services at a crisis point. Prevention and outreach are non-existent. IEP and Coordinated Service Plan meetings are often uncomfortable, even excruciating, as service providers do not have enough funding to meet the needs presented. A child under the age of 19 who has a developmental disability can only receive a Medicaid (Developmental Services) waiver if there are repeated hospitalizations or the child is in DCF custody. We are a reactive system, and unfortunately our recent conversations about upcoming changes promise more of the same.

Sandy Hook Victim with Special Needs Died in Aide's Arms

NEWTOWN, Conn. -- Staring down the barrel of a rifle, Anne Marie Murphy pulled Dylan Hockley close to her, trying to shield him from the hail of bullets that would kill them both.
Dylan, 6, had special needs, his family said Monday. And Murphy was his "amazing" aide, they said. He loved her, pointing happily to her photo on the Hockley's refrigerator every day.
"We take great comfort in knowing that Dylan was not alone when he died," said his parents, Ian and Nicole Hockley.

Parents Feel Impact of Caregiving

Caring for an adult child with developmental disabilities or mental illness increased by 38 percent the chances that an aging parent would develop disabilities of their own, according to findings of a new study led by Dr. Subharati Ghosh, a post-doctoral research fellow at the Lurie Institute for Disability Policy in the Heller School for Social Policy and Management at Brandeis University.
The study, published in Psychiatric Services, highlights economic and psycho-social challenges faced by parents of adult children with disabilities, compared with parents of children without disabilities.

'I Could Never Do What You Do'

Came across this fascinating post by Rose Woodhouse, the mother of three children, one of whom has special needs, on The League of Ordinary Gentlemen blog.


There is a tendency, among people who do not live in Holland (i.e., who do not have a child with disabilities) to praise us Holland-dwellers. “I could never do what you do!” “You guys are simply amazing, the way you take care of him,” or “He’s lucky to have you.”
I’m not sure what to respond to these. (Well, to the last, I do say, “We’re lucky to have him,” because this is not something anyone says about my other kids.) Here’s what I am thinking, though, when people praise me. It’s not as if I had a choice, here. I’m doing the best I can with the hand I’ve been dealt, and so would you. What would you say if I didn’t take care of him? If I abandoned, or simply neglected him? Would you say, “Of course, that’s totally understandable!” I think not.

Connecticut Families Endure Long Wait for Care

Connecticut is fast running out of money for a residential program that many families with intellectually disabled children have relied on for years.  Families are concerned about where their children will live and who will take care of them as they grow older.

For One Parent, Fear is Part of Daily Routine

ST. PETERSBURG, Fla. -- The topic is fear, and Nila Benito is a reluctant expert.
Fear of today. Fear of tomorrow. Of meals not eaten, and dangers not seen. Of lives not lived to their fullest, and of all of the complications in between.
Mostly, fear of the anguish seen this week in another mother's eyes.