When I realized my younger daughter was disabled, my belief in what was possible for her life changed. As her parent, I had to focus on her needs and didn’t have time to focus on her wants. In my head, her wants came second to meeting her needs, and that was a big job in itself.
Being a parent of a child with a disability fundamentally changed my expectations of my child. I went from expecting her to live a “normal” life focused on reaching her personal and self-guided goals, to focusing on survival. In my parenting, my goals focused on making sure she was able to exercise all her rights under the law to get what she needs to manage her disabilities.
Sadly, that means her personal desires are not prioritized and sometimes get ignored. Even though my daughter loves learning and school, I stopped worrying about academic success. Instead, I focused on her legal right just to be in the room with her non-disabled peers and how to get her needs met.
Honor roll, accelerated classes, spelling bees, and the other academic feats that I expected from my older daughter disappeared from my thinking about my younger daughter. Those dreams were replaced by need-based parenting.
Parenting a child is a non-stop learning experience. And, wow, did I learn a powerful lesson about my child and her potential to accomplish a full-life with the same ambitions as her older sister. While I was focused on my daughter’s IEP (individualized education plan) and therapy, I didn’t focus on academic success. But because of the amazing tools and accommodations of her school and other caregivers, my daughter is thriving academically, mostly without my belief that it was possible.
I’M LEARNING TO MOVE FROM PARENT-CENTERED TO PERSON-CENTERED PLANNING
All of this is forcing me to look at all the ways that I, as a parent, stop my child from living a full, happy, quality life. Here are a few examples:
- Deciding which places and activities “are too much” for her, without her input.
- Defining and limiting what she can do socially without even trying to see if accommodations could make it successful.
- Being so afraid of her failing, that I stop her from experiencing normal failure.
At the heart of this is both an expectations gap and a core belief: Parents believe we have to protect our children. Parents of children with disabilities feel this especially strongly. But without examining whether our desire to protect our children actually is helping them, our child’s life becomes parent-centered.
Instead, it’s vital that parents understand how “person-centered planning” works. I was blessed to attend a statewide leadership training for Illinois parent advocates. There I learned about “person-centered planning,” by expert and trainer, Teri Steinberg, which puts people with disabilities, including school-aged children, at the center of planning their life, interests, activities and future.
IT’S NOT ABOUT US PARENTS; IT’S ABOUT OUR CHILDREN
The key here is that our children should be planning their own lives and activities. We, parents, are there to help provide them access to the activities they want. Yes, we have to make sure their needs are met and they have legal access to all places; but we are the coordinators of their lives, not the directors of their lives.
WE LIVE IN A COUNTRY, THAT MAKES FIGHTING FOR PROPER HEALTH SERVICES FOR CHILDREN WITH DISABILITIES SO DAMN HARD, THAT WE DON’T HAVE ENERGY TO FOCUS ON OTHER THINGS.This is an important lesson for all parents, but it is especially important for parents of children with disabilities. When there is something wrong with your child’s health, especially if your child is disabled, all of your parenting energy becomes centered on health, and often success and happiness are put aside. This is mainly because we live in a country, that makes fighting for proper health services for children with disabilities so damn hard, that we don’t have energy to focus on other things.
It all comes from a totally normal reaction to having a child with disabilities: they have needs that often are not being met. The only way to get what your child needs, is by nonstop research and fighting. Fighting schools, fighting doctors, fighting insurance companies, researching new treatments, new treatments, therapies, and for many parents of children with disabilities, managing the chronic medical needs of their disabled child. Doing that is a full-time job and requires almost all of parents’ attention.
However, having this laser focus on what your disabled child’s health needs to survive often means ignoring what they want. It has been a journey for me to let go of controland let my daughter try activities like baseball, even when I think she might fail. I’m learning to remember to put her happiness, not just her needs, at the center of planning and decision-making. I’m learning to remember to prioritize her dreams, interests, hobbies and community with others. I hope this will help me when it comes time to journey with her on big decisions in the future, like careers.