Tools and ResourcesI am an adult with a disability, one which is most associated with children, so when parents discover that I am an example of what their child could be in the future they often have questions. One of the questions I am often asked is, “How did you become so confident with being able to speak for yourself?”

My honest answer is unexpected. It is not confidence as much as it is a form of self-defense. In everyday society I am not middle-aged, some might even still consider me young. But in healthcare circles, it is a different story.  Sometimes I feel so old that I feel like my first pet should have been a dinosaur instead of the standard goldfish.

My success in self-advocacy came much later than it should have, in my opinion, and I have made countless mistakes along the way. Eleanor Roosevelt was quoted as saying “Learn from the mistakes of others. You can’t live long enough to make them all yourself.” Since I cannot get a “life do-over” here are three things I wish I, and my family, would have learned sooner.

#1 – Start early

Big life moments, like transition from pediatric to adult care, do not actually happen overnight, especially if you want things to go as smoothly as possible.

Think about your own life, on your 16th birthday you were not handed the keys to a car and expected to know how to drive. Learning takes time. Take the time while you have it because you, and more importantly, your child, is going to need it. Time will go faster than you think it will.

 

#2 – Use correct terminology

This is often the trickiest tip for one reason or another. It is important to be age-appropriate but being realistic is just as important. You can tell a child that they have Special Needs as much as you would like but they also need to know their diagnosis, as in the real name as spelled out in textbooks and medical journals.

Thanks to advances in medicine, it is becoming more common for children with complex medical needs to become adults who still have complex medical needs. They will be interacting with medical professionals who will sound like they are speaking another language if families hold on too tightly to euphemisms. A part of creating a successful partnership is sharing language.

There is another benefit to ditching the euphemisms, community. We all want to find our people. If your child has Cerebral Palsy, for example, you are probably going to want to seek out other parents who have children with Cerebral Palsy. Assume your child will want to seek out their peers at some point in their own lives. Enable them to find people like them if, or when, they choose to.

 

#3 – Give ownership

Let your child make as many decisions as possible on their own whenever possible. Are they getting crutches or a wheelchair? Let them pick the color. Are they getting new AFOs? Let them pick the pattern printed on the plastic and the color of the straps. It will be tempting to narrow it down for them based on what you think is best, two options are better than twelve, right? Not always. Give them free rein.

Allowing children to make small decisions now will give them the confidence to make the bigger decisions later. Practice might not always make perfect, but it still helps a lot.

 

 

Sarah K. Perkins has spent her life navigating the healthcare system as a patient. As a result, she has seen the benefits of family and professional partnerships firsthand. She is currently part of the Children with Medical Complexity Collaborative Innovation and Improvement Network (CMC CoIIN) as the Family Liaison for Boston Children’s Hospital. She has a Master of Arts in Pastoral Studies from Catholic Theological Union in Chicago. She also holds 3 US Masters Swimming Top 10 times as a relay swimmer.