What is it like to be a parent of a child with disabilities? This has become a very common question as I’ve started to share more publicly about the challenges my child faces and how they impact her and our family. The truth is that there is no exact answer. Each parent has their own unique story and each child’s disabilities and strengths are completely different.
Each day more kids are born with disabilities. You would think that by this point our society would have grown to have tolerance, understanding, and empathy for these individuals and their loved ones; sadly, this is not always the case. Our society can be cruel and selfish. Instead of making things easier for these individuals, we often make it so hard for them.
That is why it is extremely important for me to provide as much support as possible for other parents and families supporting a child with disabilities. This spring I have been given the amazing opportunity to share my personal story of how to raise and support a child with a birth defect with other parents as part of a special outreach project through the North Carolina Department of Health and Human Services. It’s been a special thrill for me to be able to have these conversations with parents both in English and my native Spanish, reaching parents who might otherwise have been left out.
The parent panels are about addressing special needs, but it’s so much bigger than that. For me, it’s the opportunity to encourage and educate on so many levels and to help parents who are embarrassed, scared, ashamed, or overwhelmed move their lives from the shadows to a bright beginning. A beginning where it is okay to have a child with disabilities, where it is okay to feel hopeless at times but to know that you are not alone. There are many of us who once felt the same way and who are going on the same path as you.
It is very important for me to meet parents where they are at and go from there. Accepting having a child with disabilities comes in different stages, not everyone is always ready to accept it right away. Acknowledging this is the key to encourage parents in the right direction. At times, all a parent may want is to have someone there to listen to them, someone who has been there and knows the struggle. Empowering these parents is also a goal. Many of these parents, once they have accepted their child’s situation, discover all sorts of great things they want to do, not just for themselves and their child, but for others as well. Without the parents even realizing it, a movement has started among each group of parents for whom I’ve done a presentation. I have had parents wanting to write policies, asking for better park equipment for their kids and others, developing support groups among many other unique things.
The biggest satisfaction for me is knowing and helping other parents discover that they can use their voices and make things different for themselves and others. I discovered the desire to make a difference through my daughter’s struggles; I know everything we have experienced had a reason. My mission is to encourage these parents or caregivers, because if they are okay these kids will be as well. Every child deserves to smile, no matter what. The mission to continue to educate our society and to build tolerance for all kids continues.