What a Father Learns by Reading With His Special-Needs Son

By Craig Morgan Teicher Essay I love reading aloud to Cal. He’s 11, and it’s one of the warmest ways we have of spending intimate time together. We’ve been through all seven Harry Potter books, Roald Dahl’s “The Witches” and “Danny, the Champion of the World,” lots of Sherlock Holmes, several Narnia books and “The Hobbit.” Now we’re in the middle of the last book of the “Percy Jackson and the Olympians” series. Sometimes I think […]

We Are the Original Lifehackers

By Liz Jackson Ms. Jackson is a disability design advocate. It was 1988 when Betsey Farber found herself hacking through a dried-up nest of wild thyme in the backyard of a rental home in Provence. The scene was aromatic and picturesque, except for the pair of children’s scissors she’d stuffed her grown-up knuckles through. She couldn’t find anything better for the job. Who is going to leave their good kitchen tools in a rental? She […]

FDA Approves BioMarin’s Enzyme Therapy for PKU

The U.S. Food and Drug Administration approved BioMarin Pharmaceutical’s Palynziq for adult patients with phenylketonuria or PKU, a rare genetic disease that results in the inability to breakdown proteins in foods and can lead to toxic accumulations that can affect the brain. PKU is marked by an inability to break down Phe, an amino acid that is found in all forms of protein. Left untreated, high levels of Phe become toxic to the brain and […]

Caregiver Initiative For Individuals With Down Syndrome

NDSS has partnered with the Alzheimer’s Association and National Task Group on Intellectual Disabilities and Dementia Practices to author a guidebook specifically for those caring for an individual with Down syndrome diagnosed with Alzheimer’s disease. BY SARA HART WEIR For members of the Down syndrome and disability communities, caregivers play an important role in helping members of the community lead a healthy, productive and happy lives. It is not uncommon for caregivers to put the […]

Study Finds Facial Analysis Software Able to Identify Patients with Williams-Beuren Syndrome

A new study has shown that researchers have successfully used facial analysis technology and clinical information to successfully identify patients with Williams-Beuren syndrome, a rare condition that causes cardiovascular problems and intellectual disability. Though Williams-Beuren syndrome is a genetic condition, most case are not inherited. It affects about 1 in 7,500 to 10,000 people. People with the condition have distinctive facial features including puffiness around the eyes, a short nose with a broad tip, full […]

This New Autism Genetics Study Could Help Explain Why It’s Such a Huge Spectrum

One disorder or several?  BY MIKE MCRAE Genes responsible for a number of autism’s characteristics come in two varieties, which could help explain not only the condition’s diversity, but also how it’s inherited. A new study on the genetics behind the disorder has revealed the kinds of mutations associated with lower IQ are also linked with impeded motor skills. What’s more, the severity of these mutations might also explain why many aspects of autism spectrum […]

Screenings Miss Signs of Autism, Especially in Girls

By Dennis Thompson MONDAY, May 21, 2018 (HealthDay News) — An important checklist used to screen for autism can miss subtle clues in some children, delaying their eventual diagnosis. Researchers found that the Modified Checklist for Autism in Toddlers, or M-CHAT, can fail to detect developmental delays that are tell-tale signs of autism in 18-month-olds, according to findings published in the June issue of the journal Pediatrics. Because of this, a small percentage of children […]

The Traps and Gaps of Special Needs Parenting

by Colleen Berlingieri Recently, my husband had surgery for prostate cancer. Not to worry. All is well and the procedure was a success. However, the process was grueling. It was a long s-l-o-w recovery filled with pain, exhaustion and pills – and that was just me – he had a hard time too! During the long weeks of his recovery we watched a lot of TV. One afternoon a commercial for a cancer drug came on. […]

CPA athletes and sports manager selected for the CP World Games

Peter King, Manager Sport Development at Cerebral Palsy Alliance (CPA), has been named Manager of the Australian team to compete in the 2018 CPISRA CP World Games, in Sant Cugat, a town north of Barcelona, Spain, in August. CPISRA stands for Cerebral Palsy International Sports and Recreation Association and when Disability Sports Australia (DSA) announced the selection of the six athletes who will compete they said it is the largest Australian team to ever travel to […]

Swimming Lessons May Be A Life-saver For Children With Autism

By Tim Newman A recent study investigating injury mortality in people with autism spectrum disorders delivers some surprising and disturbing results. According to the authors, swimming lessons for children with an autism diagnosis should be a priority. Autism spectrum disorders (ASD) are characterized by a difficulty with social interactions, communication problems, and repetitive behaviors. They are estimated to affect around 1 in 68 children. Above and beyond the symptoms of ASD, individuals with a diagnosis […]