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Introduction

Welcome to the Club You Never Wanted to Join!

                                                               

Having a child with a disability is wonderful. Okay, I haven’t always felt that way. As I look back on it now, I realize my early thoughts were not so upbeat. I felt myself being pulled into a dark hole, filled with issues, legal ramifications, and … honestly…people I hadn’t wanted to know better.

 

It wasn’t that I didn’t like this mysterious group of people, “the disabled”; it was that I was totally ignorant of their power and strength, while well educated on their deficits. In this regard, I do not think I was at all unique. Most of us, unless specifically trained in special needs, are introduced to the deficits of those with challenges from pre-school forward. Indeed, in an effort to teach us compassion, the difficulties faced by others are often “taught” to us. 

 

And so, I, like you, embarked on a path of discovery. It seemed I had to learn the assets and capability of people who were different from me. Nowhere in the motherhood manual was this option described! I am hoping that this information provides some insight into learning about the joys of those who are different from us; indeed learning that we are all bound by our similarities and not our differences. Ideally, you will find the differences challenging, stimulating, frustrating and rewarding—often all in the same hour! I want this to be your reference of information and primer on not merely surviving, but thriving through the slightly different life now unfolding before you.

 

In the early days, after Jordan’s birth, I needed to hold him constantly. When I held him and looked into his dark blue eyes, he was my son, Jordan Emerson. When he wasn’t with me, I had more of a tendency to think of him as someone with Down syndrome—in capital letters.

 

It is this labeling that we need to rid ourselves of early in the discovery process if we are to effectively fulfill our roles as parents. Our children are not flawed; they are total, complete people ready to embark on life. Your willingness to become an advocate is critical to that journey.  I feel strongly about this; I am often asked if all parents must advocate and the answer is an unequivocal “Yes.” The fact that you were shy before has become irrelevant; the idea that you must learn to overcome that is a real challenge for many people. But I don’t think you or I have a choice. Children with differences need a voice and there is no better voice than that of a parent.

 

This section of the website will provide you with ideas on how to best advocate for your child while still staying sane; not always an easy task. I will try to give you anecdotal information that may be helpful, as well as practical advice and phrasing that will assist you in developing clear goals for your child. I provide options based on the differing abilities of children as well as the real constraints of different school systems. Every now and again, you will have a really easy time of things; on those days, weeks, or months—relax and enjoy! It doesn’t have to be difficult all the time.

 

Finally, I do welcome you to the club. The best thing about this path for me has been the opportunity to watch learning take place at a different level. It’s sometimes as if I can see the gears working inside Jordan’s head and can actually watch him learn. You will be equally enthralled as you watch your baby grow into a child and adult with so much hope and confidence.  Congratulations!

 

Cynthia Kidder


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