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Thoughts on Raising a Child with Special Medical Needs

It was 14 years ago on June 14, 1994 when we learned that our son was born with something wrong. We had no idea what that something was until the doctors ran some tests and found that he had Velocardiofacial Syndrome (also known as Shprintzen Syndrome). He couldn’t keep his formula down, and he was not gaining weight. Doctors had to insert a feeding tube through his nostrils (NG tube) so he could be fed. Later the doctors had to surgically insert a tube into his stomach (G tube). My wife and I are glad we did not know what … Continue reading →

When Your Newborn Has Special Needs

The days surrounding your baby’s birth should be full of joy and excitement. Yet when your newborn has a medical problem, or is at risk for developing a disease or disorder, those joyous feelings are often replaced with fear, sorrow, and even disappointment. You might learn that your baby will not be able to come home from the hospital as soon as you hoped. Your newborn might be covered with tubes and probes, instead of being the healthy cherubic infant you imagined. He or she might be kept under special care in the NICU (neonatal intensive care unit) or face … Continue reading →

Drifting Away From the Truth

When we parent kids with challenges, it’s easy to drift from truth. Sometimes we “horrible-ize” our situations so that those on the outside-looking-in will sympathize. And when nobody seems to want to listen anymore, maybe we exaggerate and complain to the pictures on the wall so that we can feel justified in feeling sorry for ourselves. “I never get even one minute of sleep,” “My kid is completely out of control,” “My life is a total wreck,” or “Everything bad always happens to my family.” “I wasn’t meant to be happy.” On the other hand, we might minimize what is … Continue reading →

Ten Ways a Special Needs Child Will Change You Forever

Having a son or daughter with special needs transforms us. There is just no way around it—we are shaped and chiseled from the inside out. It’s a process not without pain, but the ultimate rewards are great. Here are ten ways that a special needs child will change you forever: Perspective shift. There’s something about having a child who is struggling to master simple language, develop motor skills, or maintain basic health that changes your perception of things. Now, whether or not you get a new pair of shoes to wear to the Brewster’s Christmas party doesn’t seem to matter … Continue reading →

Discovering A New Angle…

I’m not exactly sure when the perspective shift happened to me. But for parents of special needs children, it needs to happen, and hopefully it does before too much time is wasted. I’m talking about the change in viewpoint that brings us to a happier, healthier mindset in dealing with children who have challenges. The reality is that we can’t wish away or hope away the disability. And we certainly don’t want to delude ourselves and live in denial. “It is what it is.” Prior to getting to the point of acceptance, there’s a lot of pain and turmoil. There’s … 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 →