Introduction to It Starts at Home


My intention in writing It Starts at Home is to bring you as a parent of a disabled child to a better understanding from the perspective of an adult with a disability. I want you to know that having a child with a disability is not the end of the world, although you may feel that way sometimes. Although I have Spina Bifida this book can apply to children who have a wide range of disabilities. At times it may seem I am referring to one specific parent however that is not my intention as both parents should be involved in the raising of their children.

I am not a doctor;  nor a trained professional, and I am not able to give you statistical information from a clinical point of view. What I can do is provide you with a practical guide to raising a child with a disability based on what I have observed and gone through as a person with a disability myself. My hope is that this book will empower you to make the very best out of a situation that may be seen as negative according to societal standards. As an individual with a disability, I have observed the negativity that can occur when a child with a disability is born into a family, especially a family that is ill equipped to deal with the situation properly.

Raising a child with a disability can be a challenge but it can also be very rewarding. At times it will try your patience and be exhausting but it will ultimately give you a sense of how precious life is. It may take you out of your element and your comfort zone, change how you think, feel and even react. The first thing you need to do is throw all of those preconceived notions that you have out the window because they are not real; start with a new slate. I want you to understand that everything happens for a reason and that your child has a purpose in life; that you as a parent have an obligation to do everything in your power to assist and inspire your child to realize that purpose.

You may perceive “things happen for a reason” to mean that you have done something wrong or that you are being punished for something horrible you have done. Know that you did not do anything wrong. If you feel that you are being punished this feeling will inevitably lead you to feel resentment, jealousy and eventually hate towards your child. Your child needs you to be emotionally healthy and if you have feelings that remotely resemble what I have described then seek professional help; your entire family unit will benefit from you being emotionally healthy.

Like it or not, we are living in a world where what our children hear, see, feel, and learn will affect how they grow up and who they turn out to be. How children are raised can impact their futures. At the heart of this book is my own experience as a woman with a disability and my strong belief that parents are the most important influences on the lives of their children. But working alongside and on behalf of adults with disabilities has taught me that many parents need support to become the best parents they can be and unfortunately not every child has a parent as a champion. I have a strong conviction that every child deserves a chance to live up to his or her potential and we should never give up on any child let alone a child with a disability. Resilient children with disabilities can be successful adults despite great obstacles. That is where parents step in, to nurture children and to provide positive role models. How you parent shapes the lives of your children. Parents of children with disabilities should be encouraged to participate and get involved in their communities. Certainly, raising any child can be complicated, difficult and challenging and so much more when raising a child with a disability. As you read further it may seem as though I am passing judgement however that is not my intention. I just have very strong opinions and want to help you do the best you can.

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