Seeing the Gifts First
My daughter Dalia, Class of 2023, Future Ms. America, Teacher of the Deaf, Martial Arts Instructor, Professional Dancer, President of the United States
In trying to understand why, as parents, we work so hard to advocate for our children with disabilities to fight with districts and beg for laws to be implemented, I began to wonder if parents of children with disabilities might be sowing the seeds of difficulty right from the beginning.
When a baby is born with a difference or identified with a disability, we experience a variety of emotions before we accept, embrace, and live with that difference. Those emotional states might range from ignorance, worry, sadness, fear, guilt, helplessness, anger, confusion, disappointment, to shame or blame. By our example, as we interact with our children we model how they should be treated. In doing so, we pave the way for others to treat our children differently; we allow others to look down on them or treat them as if they are less.
The big question is: Why? Why would I love my baby less, accept my baby less, just because he or she is different? Why is it hard to embrace the difference? Would this be the case if he or she had blonde hair versus brown or blue eyes versus green? The big answer is: Intense focus and emphasis on the disability can be so blinding that as parents, we can’t see beyond it; as a result we can’t see the miracle in the birth of our child. We fail to notice the gifts while never failing to notice the disability. We yearn for a fix, as we do not want to experience any of the feelings (worry, sadness, fear guilt, helplessness, anger confusion, disappointment, shame and blame) and all we want is untarnished joy and happiness. Instead, we need to accept and embrace the differences in our children the same way we learn to accept difference in race, language, religion, orientation and other attributes we encounter in the world.
I used to think that knowledge and education would help me be an effective advocate and strong support for my child with a disability. During my research and readings, I came to the conclusion that knowledge and education are important, but they will only help us if we, as parents, have embraced our children first. We should learn from and with them, discovering their unique gifts and talents, looking at life from their perspective, and walking in their shoes.
We are the ones who should demonstrate to others how to shine a bright light on the abilities, gifts, and talents of children and of all individuals with disabilities. We need to be the cane they use to find the way, the sign they use to communicate their needs, and the hand that helps them reach for the stars. All the while, we must teach them to be as independent as they can be, as self-confident as they should be and to embrace life with open arms. This can only be accomplished if we treat them as children first and children with a disability label secondly--no shame and no blame.
It’s never too late to take off the “parent as professional role” that we seem to take on and be parents to our kids, to connect with them, to embrace them and to support them. If we can do that, we will be stronger, more positive advocates. School systems will enjoy working with us and our children will get the best education possible the law.
A few last words of wisdom that may help during this long journey: This excerpt comes from “Reading David: A Mother and Son’s Journey through the Labyrinth of Dyslexia” by Lissa Weinstein, Ph.D: “Remember that you can’t control everything; advocate shamelessly for your child, get support, intervene early, keep your eyes on the prize, and embrace their limits. Through them, new possibilities will emerge.”