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Teens & Tech

BY CECELIA TAMBURRO Remaining aware and responsible in the social media age. It can be helpful to educate your child or teen about the ways in which social media use affects them. By increasing their mental health literacy, you can provide your teen with tools to improve their mental health. Modern day parents often worry about social media use amongst their teens. Unsurprisingly, recent surveys show 92 percent of teens report using the internet daily, […]

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Building Bridges and Breaking Down The Barriers That Parents of Children With Down Syndrome Face in Their Collaboration with School Professionals

BY JUDITH HARDING, Ed.D. Collaboration with parents of children with Down syndrome is legally mandated and pedagogically sound. This process allows parents and professionals to share in mutual decision making regarding the student’s educational program. Positive collaboration works because it makes available multiple perspectives, expands competence, and enhances the process for all involved. The benefits of positive partnerships between parents and professionals may result in improving academic achievement and functional life skills for students. Yet […]

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Music As An Alternative To Opioids Pain Management Stretches To New Paradigms

BY MARTHA SUMMA-CHADWICK, DMA Neuroscience professionals acknowledge that music is a direct conduit to the brain; specific rhythm exercises in the form of biomedical music protocols can help redirect neural networks for persons with motor, speech, and cognition challenges. Note from the Editor in Chief: Exceptional Parent magazine is dedicated to reporting on alternative modalities of therapies for a variety of conditions. The use of music as a therapeutic alternative in the treatment of opioid […]

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From Screening To Storytelling: One Mom’s Advocacy Journey

GENETIC ALLIANCE BY AMELIA MULFORD In a distant jungle, Max the monkey swings from vine to vine with his pals Minnie and Mo in search of a lagoon to take a swim. He quickly realizes that he is falling behind his friends and feeling sluggish. As Max discovers, he has medium chain acyl-CoA dehydrogenase deficiency, or MCADD. MCADD, as explained in the children’s book Max the Monkey Has MCADD, is a rare genetic metabolic disease […]

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8 Ways To Get The Best Medical Care For Your Kids

BOOK EXCERPT TIPS FOR PARENTS FROM HEALING CHILDREN: A SURGEON’S STORIES FROM THE FRONTIERS OF PEDIATRIC MEDICINE BY KURT NEWMAN, M.D. Over the years I’ve found myself giving advice to parents about how to tackle the confounding range of decisions involved in finding the right doctors and medical care for their children. A good guiding principle is that the more you use experts and facilities that specialize in pediatric care, the better your child’s experience […]

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How Shared Care Plans Help Children With Special Needs And Their Families

BY LAUREN AGORATUS, M.A. Shared plans of care are records of health information communicated with the medical team and patient. This allows primary care providers, specialists and others to communicate with each other, as well as allowing access to essential medical information to families of children with special needs. Why Does Your Child Need a Shared Care Plan? Sometimes children with special needs have multiple conditions which could be affected by each other. For example, […]

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Can You Hear Me Now?

BY JAMIE VALIS, PHD A coach stands on the side-lines, providing messages of strategy and tactics to an athlete. A referee blows the whistle to signal the stoppage of play. A teammate yells encouraging words on the field. The fans roar with applause after an athlete scores a goal. Athletes rely on hearing for direction, encouragement, teamwork, and safety. “The prevalence of hearing loss for adults with intellectual disabilities is higher than for persons in […]

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In Someone Else’s Shoes

PUZZLES & CAMO BY SHELLY HUHTANEN She knew these parents care for their children each and every day, knowing the difficulties they face. These parents may struggle each day to do something as simple as transporting them to school. I’ve always wondered if there would be more empathy in the world for people with disabilities, or for families who are raising children with disabilities, if those not affected could live in our shoes for a […]

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Playing The Rare Disease Card

BY LUKE ROSEN Parenting a kid with special needs requires a lot of writing. It seems like I’m constantly writing, which is ok  because… well, I’m a writer. Sitting at my desk typing a blog post is far less stress-inducing than the painful daily scribble that comes along with a rare genetic disorder. Early Intervention requests; reminders that doses changed because of a seizure yesterday; letters to the mayor about the ramp our building is […]