Professional parenting is a term to describe the way we parents of children experiencing disabilities must be when dealing with the medical and educational world. We did not pass an exam that certified us to have a child with a disability. And so, when our child was diagnosed, either at birth or later, it hit us like a ton of bricks.
We were thrown into grieving for that baby we thought we were going to have. That bright eyed bundle that would grow up to do everything we did, only much better. We went through it all: the anger, fear, denial, depression, and craziness. Nobody thought we could handle it. But, as we looked into our child's eyes we came to understand:
Not any other child. This is the one I have and I love this child. This child is my blessing. AND I WILL DO WHATEVER I HAVE TO FOR MY CHILD.
So, we studied. We learned about the disability. We showed people that we could survive. We became professional parents.
What is a professional parent? We study about the disability and about every aspect of our child's life that will make them functional in society.
And STRESS--we are stress experts. Juggling the schools, therapists, all the doctors, wrongful billing, insurance and not getting insurance, medicaid and medicaid screwups, durable medical equipment...wheelchairs- standers- hospital beds- lift vans- splints- OY!, the agencies, the stares, the STAIRS, special diets and foods, caseworkers, social workers (our social life is just fine, thank you), transportation, and all the people who make money off our kid's backs without accountability, we could actually go nuts. But we take stress classes and do coping techniques and let ourselves go a little nuts now and then.
Yes, it takes time and effort that the families without kids living with disabilities don't have to take. It is not fair. But we have our precious gift, our child, that has turned us into compassionate people and changed our lives. We ask for Grace and recieve it.
So, dear friend who does not have a child with a disability, when you see us don't pity us. And don't tell us we are your inspiration. Just smile at us and, if you can, be our friend. We are trying to be the best parent we can for our child, just as you are. And that is being a professional parent.