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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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How A Child Developmental Passport Can Help Families

BY DEEPA SRINIVASAVARADAN Developmental Passports can be used by parents to track the health, wellness, and development of their child. These are available in both English and Spanish for families. A STATE EXAMPLE The Child Developmental Passport in NJ was developed in collaboration with the State Ambassador of the Center for Disease Control’s (CDC’s) Learn the Signs, Act Early Program and the Help Me Grow and Early Childhood Comprehensive Systems Initiative of the NJ Department […]

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Finding The Right New Team

BY ALLEN FRIEDLAND, MD, FACP, FAAP I urge you to ask your current team for advice on where to look locally/regionally. It is not easy to do a web search to find these practices (wouldn’t that be nice). As a physician that has an interest in the care of young adults with special health care needs, I hear from patients and families all the time about how hard it is to find a physician that […]

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You Are Your Child’s Best Ally

Remember, it takes a village to raise a child and in our case, it wasn’t only a village, it was an entire Best Buddies community! BY PEG GRAFWALLNER On Thursday, September 15, 2016, I had the privilege of speaking at the Best Buddies breakfast at the Pfister Hotel. This presentation gave the audience the opportunity to learn more about this important organization and also learn more about my daughter, Ani, and her capabilities and successes. […]

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Stares and Whispers

SIBLING TIES BY PAIGE TALHELM The kindness you receive from strangers is such a rare thing when you’re part of a family touched by special needs. So when you get it, you want to embrace it as much as you can. The stares in the cereal aisle. The whispers from the customer behind you in line. The snickers from the table next to you. All of these are things we all want to avoid experiencing. […]

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Finding The Joy In Games For You And Your Child

BY KAREN KABAKI-SISTO, M.S. CCC-SLP Playing games at home is a great way to have hours of fun on the weekends or when your family has some downtime. Games, like real life, pose unique challenges like making decisions, taking different points-of-view, using language, and achieving an objective. Children with special needs experience difficulty with some games’ rules or physical actions, leading to frustration and unwillingness to engage. Maximize your child’s enjoyment and connections with all […]

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Hayley’s Journey

BY GAIL AND HARRY KOUJAIAN The Niemann Pick Type C (NPC) community is very fortunate and in an envious position. For being a rare disease, there are now several clinical trials in the pipeline with more on the way. Hayley’s childhood was mostly typical. She was a happy kid that participated in Karate, cheerleading, sports and met all her early milestones. Things however changed around 1st grade. She was clumsy and started to have issues […]

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The Education Of Grace And Her Classmates

BY MICHELLE BOUDREAU On September 1, 2016 Grace will walk into James Memorial High School in Madison, WI with her best friends, Luke and Nicole, and enjoy all the perks that come along with being a senior in high school.” ~ Grace’s mother Shannon As the summer is coming to a close and we move into fall, one thing that is certain and comes every year at this time is kids going back to school. […]

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Choosing The Best Therapist For Your Child

BY AMANDA JENSEN-DOSS, PH.D. The world of child and adolescent mental health is unfamiliar and often bewildering. Deciding whether your child would benefit from therapy and then finding the best treatment can be a difficult undertaking because it is hard to know who to trust with your child’s wellbeing and whether the treatment prescribed will be effective. On top of that, many parents do not even have access to therapists because they lack insurance coverage […]