Tag Archives: disability

Five Ways to Deal with Staring

There are few things as uncomfortable as standing in a public place, knowing that someone is staring at you. It can almost seem like an invisible laser beam is burning into your back. The experience is even more irritating when the gaping eyes are on your child. As parents, we have an intense need to protect our children from harm and shield them from the scorn of the outside world. So when our child’s disability attracts attention, going out in public can cause us to squirm with discomfort. Personally, my days of being bothered by stares are long over. Let’s … Continue reading →

Setting Appropriate Expectations for Your Child with Special Needs

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An important aspect of parenting a child with special needs is setting appropriate, realistic expectations. This is much easier said than done. Regardless of what your child’s diagnosis, or “label,” turns out to be, he or she is an individual. Your child is likely to have abilities or strengths which are unusual to her condition. Or, he may have difficulties that some children with the same disorder don’t normally face. There is no one-description-fits-all for any special needs child. You must create a balance of both a hopeful, positive outlook, and one that doesn’t expect more than what is reasonable. … Continue reading →

What is Muscular Dystrophy (MD)?

Muscular Dystrophy is the general term for nine kinds of genetic disorders causing degeneration of the skeletal muscles of the human body. Our bodies require and manufacture specific proteins to support muscle development (like “food” for the muscles). In muscular Dystrophy, an error in genetic information causes the body to manufacture those proteins improperly, or not at all. This causes the muscles to slowly deteriorate. Sometimes this deterioration becomes evident very early in life, and other times it doesn’t appear until well into adulthood. A common form of muscular dystrophy which appears in childhood is called Duchenne Muscular Dystrophy (DMD). … Continue reading →

Three Myths About Raising a Special Needs Child

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There are many misconceptions that enter our minds when we learn that our child has a lifelong disability. The diagnosis (or lack of diagnosis) can be crushing, and sometimes we cling to self-defeating notions that just aren’t so. Here are three examples of myths that can cloud our judgement: 1. My child is going to be unhappy and live an unsatisfying life, full of difficulties. It’s true that a special-needs child has challenges. But it is not true that these special kids can’t live happy, fulfilling, even joyous lives. Often the majority of the “woe” felt over the disability is … Continue reading →

Update on Extreme Makeover – (Accessible) Home Edition

Here’s a little update on the house in Bergenfield NJ which will be featured this July in a special 2 hour Extreme Makeover Home Edition. The family has received a charitable gift of $150,000 from the Pinnacle Foundation to cover the increased costs of property taxes for five years, assist with mortgage payments, and to fund the education of their children. Pinnacle Companies built the new house, which is a showpiece of technology that enables people with disabilities to lead comfortable lives. The technology goes beyond mere adaptations and accessibility, it has applications for everyone. The house shows that when … Continue reading →

Just How Open Should We Be with Our Special Needs Kids?

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Recently I took my two stepdaughters to the doctor for a dosage check on their ADHD medication. (They each take 30 mg. of adderall daily.) Before the physician entered the room, the nurse began entering information into the computer. Height, weight, blood pressure, etc. The girls, ages twelve and nine, gleefully teased each other and fought over the cushioned examination seat. When the pediatrician finally came into the room, he had a lot of questions. What were the behaviors I saw when the girls were off their medication? What behaviors did I see while they were on it? Was it … Continue reading →

Get ready for… SUMMER CAMP!

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School’s almost out and summer is just around the corner. If you haven’t considered it before, summer camps for kids with disabilities are fun, instructional, inspiring, and offer ways for kids to socialize. There are all KINDS of camps, and most likely several in your area, providing opportunities for your child to have a terrific summer-fun experience. My son Garrett loved attending his juvenile diabetes camp in San Diego, California. Camp “Wanna-Kura” provided fun activities that taught principles of nutrition, glucose testing, and insulin dosing. There were LOTS of other kids for Garrett to interact with, who all had diabetes … Continue reading →

“What Will My Child’s Future Be?”

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I received a phone call yesterday from an extended family member. She was concerned because a doctor had suggested that her son, age three, was probably somewhere on the autism spectrum. This young mom spoke very articulately about her son’s symptoms, like echolalia (the tendency to “echo” back another person’s speech), his inability to connect socially with others, and his aggressive tantrums. My heart went out to her, because she sounded like me a decade ago. It wasn’t so much what she said, but the worried tone in her voice. I remember having those fears, and I remember the intense … Continue reading →

Early Intervention: Give Your Child a Head Start!

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What is early intervention and why is it so important? I like to use analogies, so imagine that you are about to enter a bicycle race. At the starting line, you discover that your bike has a few problems. Some of the gears aren’t functioning properly, and one of your wheels isn’t correctly aligned. You can’t get a new bike, so you are given permission to start the race early. Along the way, you’ll be able to stop at various checkpoints where mechanics will assess how your bike is holding up. This is the principle of early intervention for children … Continue reading →

“How Can We Ever Be Friends?” Katie and Vincent’s Story

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I read an article in this weeks PEOPLE magazine that really made me smile. It’s a shining example of how peer tutoring, or mentoring, is a fabulous concept that should be promoted in every school in the nation. The article, written by Richard Jerome and Lori Rozsa (May 29, 2006), highlights a special relationship between two students: Vincent Benito, who is 15 and has autism, and his peer mentor, Katie Davis, 13. The two attend Thomas E. Weightman Middle School in Wesley Chapel, Florida. Before Katie made the decision to be a peer mentor, she thought it would be an … Continue reading →