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My Name Is Jackson Fukuda And I Have Arginase Deficiency

I AM A 26-YEAR-OLD GRAPHIC DESIGNER… BY JACKSON FUKUDA This is my story with arginase deficiency. A decent amount of information was told to me by my parents. I felt that they would be the best ones to tell my story when I was diagnosed and how life was for me at a very young age. At a young age they started to notice a big difference between other children my age and myself. I […]

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Safety For A Child With A Severe Movement Disorder

BY LUKE ROSEN No matter how relentless we are about making our home accessible, Susannah’s movement disorder is responsible for teaching her where to go when she feels the danger of her changing coordination. I’m thankful to her disease for that — for doing my job in some strange way. For somehow teaching her to be safe. Keeping our kids safe is every parent’s number one job. Even as an adult I associate protection and […]

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JACK’S STORY

  Jack’s father decided it was time to try a custom contoured back. The lightweight back support incorporates body alignment, pressure distribution, and directional forces for comfortable postural control. For an individual who relies entirely on a wheelchair for mobility, anything that increases comfort and support is a welcome addition to the wheelchair seating configuration. Not only does the new Ottobock Ortho Shape wheelchair back provide Jack Dunn with needed postural support, it also gives […]

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PASSAGES: A Letter To My Son In His Old Age

BY KIMBERLEE RUTAN MCCAFFERTY Dear Justin, I trust this letter finds you happy and healthy. I hope by the time you receive this I will have been gone for many decades, that this last missive in your mother’s attempts to parent you from beyond the grave will be delivered to you when you are old, but still well. Forgive me, but really, why should death preclude me from continuing to control everything? You may have […]

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Purposeful Partnerships: Make A Difference

BY VICKI MASON, D.HSC, DEBBIE BUCKINGHAM, OTR, MS, CVE, CCM, CRC, CHARLENE DICKINSON, RDH, BSDH, MS, AND SCHELLI STEDKE, BSDH, MDH Persons with developmental disabilities often experience challenges in getting appropriate medical, dental and health care services. Access issues (cost and transportation) and a lack of awareness on the part of healthcare professionals add to the difficulties according to the Centers for Disease Control (2016). Innovative partnerships can contribute to the health and well-being of […]

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Exceptional Parent Magazine Honors Special Education Teachers

EXCEPTIONAL PARENT (EP) MAGAZINE HONORS SPECIAL EDUCATION TEACHERS “AN ABILITY TO CONNECT ” Eileen Payraudeau EILEEN PAYRAUDEAU has been teaching at ECLC of NJ, Ho-Ho-Kus campus for six years. ECLC is a private, no n-profit special education school serving students ages 5-21 with severe learning and language disabilities including autism spectrum disorder, cognitive impairment, and medically fragile students. The school educates nearly 90 students from 11 counties in New Jersey. What makes Eileen so special […]

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Department Of Defense Summer Camp Experiences

When school’s out for summer, it’s helpful to have some activities planned to keep your kids busy, engaged and having fun. Department of Defense summer camps may be a great addition to your child’s summer lineup. Make it a summer to remember by checking out these potential camping experiences: TEEN ADVENTURE CAMPS These camps can be a great option for a teen interested in adding some excitement to their summer. • Teens ages 14-18 can […]

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Breathe

BY KIMBERLEE RUTAN MCCAFFERTY I struggle out of sleep, not knowing what woke me up but for once knowing it’s not my own body. I lie still for a few moments, and then I hear a thud, and I’m instantly awake and throwing back the covers. Justin’s OCD is back. He’s quite loudly rearranging his room at 6:10 in the morning, and there aren’t words to explain how much I don’t want his brother up […]

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Let’s Get Social

ONLINE SUPPORT COMMUNITY EParent Support Community connects individuals, families, friends, caregivers and health professionals for health and wellness support. Inspire works with trusted health partners to build safe and secure health and wellness groups. Follow us today and join the community.         Keep up-to-date with our newest EP articles, popular topics, current research & support! Use #EPconnect to reach us! We want to see your pictures, stories, and questions. Help us build the […]

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The Effects Of The ESSA (Every Student Succeeds Act) For Children With Disabilities

BY LAUREN AGORATUS, M.A. WHAT IS THE ESSA? The Every Student Succeeds Act (ESSA) is a reauthorization of the Elementary and Secondary Education Act. ESSA is replacing No Child Left Behind (NCLB.) The Council of Chief State School Officers has a chart and narrative on the crosswalk between ESSA and NCLB (see Resources). Some components of the previous law have been kept, some were revised, and other pieces are new. Here is an overview on […]