NYSARC Sees Rough Year Ahead

Not exactly an uplifting story for the start of 2016, but important nonetheless.

People with developmental disabilities and their families are really worried about the New Year. Leaders at NYSARC, New York State’s largest advocacy and helping agency for disabled people, said they’re facing potential budget cuts and strict, new rules from the state. They also fear caretakers might quit their jobs in search of higher pay.

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.

Seahawks GM Knows Autism Affects Whole Family

John Schneider

RENTON, Wash. -- The 10-year-old son of Seahawks general manager John Schneider was diagnosed with autism when he was a year-and-a-half old. Schneider and his wife Traci got help for their son, Ben, who is doing well. Now the Schneiders are launching Ben's Fund, which in partnership with Families for Effective Autism Treatment of Washington will provide grants to families to help them cover the cost of medical bills and therapies.

Families to White House: Save 'Our Lifeline'

WASHINGTON -- On Saturday, families from West Virginia, Texas, Georgia, and Virginia joined The Arc at a meeting with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President to discuss the impact on people with intellectual and developmental disabilities (I/DD) if deep Medicaid cuts are included in a budget deal. As President Obama continues to engage in deficit reduction talks, The Arc, the nation’s largest and oldest human rights organization for people with I/DD, and its members are calling on Congress and the White House to keep Medicaid and programs that support those with I/DD intact.

Decoding the Language of Autism

A very interesting piece about communication--for both children on the spectrum and for their families.

Autism has its own language. Just ask any parent whose child has received a diagnosis of PDD-NOS and now has an IEP mandating EI that includes OT. But the specialized language of how we talk about autism is actually easier to master than the language -- spoken or not -- that autistic people themselves use.

This point came home to my wife and me during a trip we took to the Bay Area last month with our autistic son, Sam. Erika's grandmother died two years ago at age 97, and her family made the trip to California to inter her ashes in the East Bay city where she had lived for many years.

Our initial plan was for Sam and me to stay behind at the hotel while the rest of the family went to the cemetery. We figured the service wouldn't mean much to him and that he might be disruptive. Ultimately, though, we decided that since only immediate family would be there, there was no harm in bringing Sam. We told him we were going to "say goodbye" and crossed our fingers.

Child with Down Syndrome Helps Family Re-evaluate Life

SAINT PAUL, Minn. - Five-and-a-half-year-old Gabe King is a person of routine. This morning, Gabe likely woke up long before dawn in the room next to his parents in their Stillwater home. He took off his diaper, put on a clean pull-up and got dressed. Then he banged on his door, locked from the outside because he wanders, and yelled: "Awake! Awake!"

"He's an early-morning person. He'll wake up at 4:45 a.m. or 5 a.m.," Peter King said of his fourth and youngest child, who has Down syndrome. "I'm an early-morning person, too. And, you know what, I wake up to him every morning, and he has this grin on his face. And it's a great way to start the day - it really is."

Fatherhood changes a man. But some kids stretch you more than others. Gabe has brought Peter unconditional love and cheerful exuberance, tested his patience, humbled him, awakened fears about the future and challenged him to redefine success.

"We thought of ourselves as having the 'picture-perfect' life," Peter said about the years before Gabe's birth. "Three beautiful children. Their grades are good. They're athletic. They're healthy. And then suddenly you get this curveball, and your world changes."

Children's Lemonade Stand Supports Boy with Down Syndrome

A very sweet community effort!

WELLINGTON, Kan. — Every little bit helps, when a family is going through tough times. One group of children is helping out with a lemonade stand at 708 S. Washington Ave., in Wellington. Proceeds are going towards helping out a local family whose six-month old was diagnosed with Down Syndrome.

"Shortly after he was born he was diagnosed with Down Syndrome," said Dana Lago, about her son Aaron. "We've gotten really involved with the Down Syndrome Society since then."
Since being born, Aaron has had multiple operations.

"He's gone through open heart surgeries and stomach surgeries," Lago said. "And pretty much helping raise money to support him, and children just like him." The kids working the lemonade stand said it's been a good day, having sold a lot of lemonade, and received a good amount of donations to the Down Syndrome Society.

Illinois Families Relocating for Services

Chrisa Hickey, a northwest suburban mom whose 16-year-old son hears voices, has bought property in Wisconsin with an eye to the future.
She wouldn't leave Barrington for career, retirement or the more languid pace of small-town living. Her relocation plans are strictly a way to keep Tim in his $85,000-a-year residential treatment center, currently funded by the state of Illinois.
"People ask, 'Why spend that kind of money on one kid?' And I tell them that he's 6-foot-2, 200 pounds and could pick up a desk when he was 4. If he gets angry in class, do you want him sitting next to your kid?"
Although no one tracks why people leave one state for another, anecdotal evidence suggests Hickey is one of several who are planning to leave Illinois — or has already left — because of diminishing human services here.

Autism and Family Life: A Delicate Balance

AVON PARK, Fla. - Boat captain Rick Buell pilots yachts and boats to the Caribbean from Fort Lauderdale, and his wife, Nanette, is a flight attendant for American Airlines, but they have temporarily relocated to Avon Park where their 7-year-old son, Blake, is receiving treatment for his behavioral problems and autism.
Behavior outbursts in his elementary school led to Blake being suspended for a total of 20 days in kindergarten and first-grade, Rick Buell said.
Before receiving therapy, Blake's excitement would start to build, prompting someone to try to help by touching or grabbing him, Buell said. That intervention would cause Blake to blow up.
He would go underneath tables kicking and throwing books in class, and as he got older, his behavioral outbursts became more intense, but the school system was doing very little therapy and doing little to try to determine what was wrong with their son, he said.
In front of Blake's school in Fort Lauderdale, Rick and Blake ran into a special education advocate who recommended forensic psychologist Susan L. Crum, who has a practice in Avon Park.

When Your Brother Has Autism

As Autism Awareness Month comes to a close, a nice perspective from Patty Hastings, a student at Northwestern University's Medill journalism school.


CHICAGO -- One in 110 people is identified as autistic, up from one in every 10,000 in 1990 — the year my brother was diagnosed. Does the increasing prevalence signal an autism epidemic or, simply, that the autism spectrum is too wide?
"It's supposed to be worse than being blind, not being able to communicate," said my mom, Debbie Hastings.
I wouldn’t know because my older brother, William, can't tell me what it's like to be on the spectrum.
National Autism Awareness Month is coming to a close, but families of people with autism are aware of this pervasive disorder 24/7, 365 days a year.

Deeper Cuts, Deeper Pain

ELGIN, Ill. — For the next four years, Elizabeth and Chris Frederick know they will have services for Thomas, their 17-year-old developmentally disabled son.
However, after he turns 21, the South Elgin resident no longer will be eligible to get schooling, his parents said. It is during those school hours that they have at least some respite from caring for Thomas 24 hours a day, seven days a week.
Cuts proposed in Gov. Pat Quinn’s 2012 budget could mean the respite care they now have — and other services for those with developmental delays — could be cut not only for them but for the 5,400 people served by the Association for Individual Development in Kane and Kendall counties.

What Would Son Be Like Without Autism?

Laura Shumaker's piece on SF Gate.com, hits a note that many parents have thought quietly about at one time or another.

I called my brother at his office today just to check in, and his son Greg answered the phone.
"Good Morning, Bowhay Investment Group"
My nephew, who is just 2 weeks older than Matthew, is in business school. I'd forgotten that he was also working for his dad. We chatted for a few minutes and as I hung up, I was flooded with a feeling that I rarely let myself feel--regret. What would Matthew be like if he didn't have autism? What would he be doing?