You + your child’s ophthalmologist + the pediatrician + any necessary therapists + medical specialists who manage any chronic or acute problems = your child’s robust medical professional team.
You are a key member. Yet, it isn’t uncommon for parents to feel void of expertise and, therefore, to take a passive role or back seat in medical evaluations and interventions. I’m here to remind you that your child and his or her medical personnel need you, whether or not the need is acknowledged, as you are the expert on your child and the voice for your (young or nonverbal) child. The team needs you to remain informed, to advocate for your child’s needs, and oftentimes to educate them about blindness or a visual impairment.
If you suspect your child may have a visual impairment or if your child has received a diagnosis of an eye condition, you’ll want to confidently seek answers to lingering questions such as, "What can my child see, How can I manage the eye condition, What services does my child need now, and What questions should I ask the doctor?"
Serving as a roadmap for remaining informed as you work with medical professionals is the FamilyConnect resource, "Working with the Medical Professionals When Your Child Is Blind or Visually Impaired." I encourage you to read the collection of articles, giving you information needed to advocate for your child.
As you interact with your child and notice any possible need for medical intervention, it is you who seeks medical expertise and requests evaluations. You are your child’s advocate for medical services.
Emily Coleman gives you a peek into obtaining and declining therapy for her son, Eddie, who is blind with additional disabilities, in the blog post, "Growing Up in Therapy."
Oftentimes your child will receive medical services from a professional who is unfamiliar with blindness. It is then you will briefly educate the professional in order for your child to be most comfortable and to be treated with utmost dignity.
To help you consider what needs to be communicated with medical providers, read "5 Tips for Medically Treating a Child Who Is Blind."
So yes, parents and key family members, you are an integral part of your child’s medical team. Remain informed, advocate, and educate.
The Green Button: A Lesson in Hospital Advocacy Learned from My Sister Who Is Blind, Mayra’s Story
ADA Checklist: Health Care Facilities and Service Providers