My Huntington’s Disease Journey

Decided it was time to come out of the genetic disease closest and own my disease: go from hidden-HD Seth to a new Seth with no secrets. BY SETH ROTBERG When I was about 12, I started noticing something wrong with my mom. She wobbled from poor balance, often tripping and falling over, as if she were drunk. She had severe mood swings; one minute she was fine and the next, she was angry, frustrated, […]

A Lifetime Of Good Health

In recent years, Health Promotion has been spreading outside the screening “tent” and to the field of play and community with Special Olympics Athletes serving as health leaders. BY PEYTON PURCELL, MPH Like any athlete, Special Olympics athletes who are fit, at a healthy weight, have strong bone density and normal blood pressure are better able to compete in their sport, contribute at work and enjoy activities in their daily lives. But people with intellectual […]

Making Sense of School Evaluations Without Losing Sight of Your Child

by Vaughn Lauer An interesting title, isn’t it? But the truths are these: Data (aka behavioral and measurable information, including test scores) are necessary for making good educational decisions. and Test scores do not define our child; they simply help to understand our child’s strengths and needs, so that we can make informed decisions. I think we can all agree on the first statement, that is: Information (data) in behavioral and measurable terms is essential to […]

Endrew F. Supreme Court Case: Strengthening The Voices Of Families At IEP Meetings

Many parents have had an experience similar to the one faced by Endrew F.’s parents, in which their child’s IEP goals don’t vary each year and there is lack of progress. BY DIANA AUTIN, MARIA DOCHERTY AND LAUREN AGORATUS, M.A. The recent Supreme Court case, Endrew F. vs. Douglas County School District, has implications for parents participating in the IEP (Individualized Education Program) development for their child. The decision clarifies the rights of children with […]

Identifying Educational Approaches To Support Students With Dyslexia

In order to integrate a specialized academic focus to learners with dyslexia and other reading differences, it is essential to understand and integrate the six strategies noted in this article to increase support, understanding, and communication that is essential to a collaborative team of educational caregivers. BY ANGELA SHAW The International Dyslexia Association (IDA) suggests that as many as 15% to 20% of the general population could have some degree of dyslexia (2017). Dyslexia, a […]

My Son’s Autism Diagnosis

My wish for you and your child is that you get the information you need, the resources that can help, and the acceptance to be able to move forward with your lives following an autism diagnosis. BY KIMBERLEE RUTAN McCAFFERTY Over the years people have asked me about how and when Justin was diagnosed with autism. My boy got an official diagnosis at 17 months from a developmental pediatrician, received a spectrum diagnosis at a […]

Building Supportive, Person-Centered Communities For Adults With Autism

According to the Centers for Disease Control and Prevention (CDC), 500,000 teens with autism will age into adulthood over the next decade and housing will become one of the greatest concerns for them, their parents and other caregivers. Right now, an estimated 80,000 adults with autism in the United States are on waiting lists for publicly-funded residential placements and services. The waiting periods can run up to 15 years and the number of those waiting […]

Starting ’em Young

Young Athletes engages families by highlighting the power of play. Young Athletes includes a series of structured physical activities, songs and games to teach basic motor development skills for children with and without intellectual disabilities, ages 2 to 7 years old. BY REBECCA RALSTON In a small community near Phitsanulok, Thailand, a young boy named Kongpob Yangkam lives with his grandparents and 17-year-old sister. Kong, as his family lovingly calls him, has intellectual disabilities and […]

Parents Perspective: Caring For A Child With A Feeding Tube

BY JULIE & TONY BOMBACINO “IT TOOK US A LONG TIME TO GET HERE, BUT WE NOW SEE AJ’S FEEDING TUBE AS AN INTEGRAL TOOL IN KEEPING HIM AT HOME AND HEALTHY. ” Our son has, and gets all of his nutrition from, a feeding tube. Serving nutritious food that everyone will eat is hard enough for any family at mealtime, but caring for a child with a feeding tube presents a new set of […]

While everything in the world seems to be moving too fast, one term comes to mind: RESPITE

BY ADEOLA SONAIKE, PHD, MPH, CHES There are steps to assist you with selecting a local Respite provider that meets your family’s needs. Respite is your time as a caregiver for self-care, your time to respect yourself and your role as a caregiver. Respite, which originates from the Latin word ‘respectus’, literally means consideration, the act of looking back (or often) at oneself. It is also no coincidence that ‘respectus’ is the Latin origin for […]