While my son was hospitalized, a book like this would have been a welcome resource, particularly when my very young nieces had a host of questions about their cousin: Why is Erick in the hospital again? Is Erick going to be okay? Are the doctors going to give Erick a needle? Undoubtedly, siblings will have similar questions and this book is a helpful resource. Thanks, Christine Beall-Sullivan, for sharing your insight and experiences with all of us through Jack’s eyes!
Resources, Information, Help! That’s what I searched for far and wide after my son Erick was diagnosed with Cerebral Palsy, Mental Retardation (in 1989), and Developmental Delays. The Internet was just evolving then, so I had word-of-mouth and medical professionals. I’m thankful for the resources I learned about thanks to a great Pediatrician and Social Worker at Children’s Hospital of Philadelphia. Having help to navigate through what sometimes seemed like a massive ball of confusion greatly benefited me in securing the services it took to enhance Erick’s life.
Fast forward twenty five years, and today’s technology affords parents access to a wide range of resources. One such resource is My Child Without Limits, which operates under the UCP (United Cerebral Palsy) umbrella. Of course, there are blogs like this one and Terri Mauro’s Newsletter at About Parenting > Children with Special Needs that offer words of encouragement and parenting advice, as well as this beautiful poem she wrote:
You Are Blessed
It may feel more like a curse sometimes, but having a child with special needs brings with it abundant opportunities for grace. It slows you down and allows you to enjoy the little things — a calm quiet day, a hard-won skill, a spontaneous hug, a pleasant conversation. Where other parents are driven to find their children’s success in high grades and high scores on the playing field, you are granted the privilege of focusing on the things that really matter, teaching your children how to love and care and communicate on the most basic level. You know what’s important, and because you’re not caught up in trivialities you are able to appreciate that so much more deeply. Miracles happen every day, if you only know where to look for them.
What is the most helpful resource you have come across for your special needs child?
Why Them and Not Me?
Have you ever asked yourself that question – “Why Them & Not Me?”. It applies to a variety of scenarios and situations. For instance, why did they get the job & not me? Why did the NY Giants win the Super Bowl and not the New England Patriots? Why does my special needs child have to go through these challenges & not me? That question – “Why Them and Not Me?” – came up a few times on a recent episode of Blue Bloods. The Police Commissioner’s former partner died from injuries sustained during the 9/11 attacks. They were both First Responders during the attacks, putting their lives on the line; one ultimately sacrificed his life, suffering through a devastating illness and later succumbing. The Police Commissioner (Tom Selleck) questions his own mortality asking the question, “Why Them & Not Me?” – -“Why did thousands die and I survived?” (more…)