My younger daughter is one of the greatest joys of my life. She is full of energy, gives great cuddles and has a fantastic imagination, often involving her Marvel friends Black Widow and Captain America. She also has disabilities.
It has been a long, uphill battle to make sure she gets the services she needs for her disability and developmental delays at school. The struggle includes having to educate myself and my family about her special needs and what she needs to be successful.
Being a parent advocate for my Black child, who is spirited, hilarious, full of energy and also has special needs, feels like a never-ending quest to make sure that I’m doing everything “right.”
I am constantly educating myself on best practices and her rights to services. As I venture into the world of disability advocacy, I’m learning that what I thought was my greatest strength—my unyielding, unstoppable Momma Bear, who is ready to fight the world to make sure my daughter has everything she needs—might also be harmful.
As a mom, I fear for my daughter all the time. This natural parent fear is exacerbated when your child has a disability.
I want the best for her and I never want to put her in a situation where I think she will be unsuccessful. When I see her have “breakdowns” or “failures” in settings that aren’t geared for her, it breaks my heart. And, as a Momma Bear, I never want to see her hurt or fail, so I naturally try and plan activities and events where she will be most successful.
But I’m learning that, even though she has special needs and a disability, she still has the right to decide what activities she wants to take part in. And—the hardest part for me to grasp—she still has the right to make decisions about what she wants to do.
Sometimes You Measure Success In High-Fives, Not Home Runs
One recent example is that my daughter wanted to play baseball. More specifically, she told us she wanted to “be on a team and get a trophy.”
She sees her older sister playing on a team, wearing a team jersey, and sees all of her sister’s trophies in their shared bedroom. So she has repeatedly asked me and my husband to let her play on a team.
As her parents, we observe that she gets overstimulated and really tired in noisy places. She has a hard time following directions, staying still, or doing multi-step directives. We thought sports would be overstimulating for her and that she wouldn’t be successful on a team because of her disability. So, because we wanted her to be successful, we didn’t allow her to participate in organized sports because we thought she couldn’t handle it and we didn’t want to see her fail.
But my daughter still wanted to play sports. She wanted to play sports and do activities with her friends.
But while attending an Illinois statewide leadership training, Illinois Partners in Policymaking for parent advocates helped me find a way through this impasse. Expert Teri Sternberg introduced me to the concept of “person-centered planning,” which puts the person with special needs—their thoughts, wishes and strengths—at the center of planning for their future.
Through this training I now see that part of being a good advocate is to allow my daughter to be the main driver of decisions as much as possible. Although this tool is used for older children when developing IEPs, it is extremely eye-opening for me as well.
I’m learning from adults with disabilities just how vital and life-changing it is to ensure that people with disabilities can use their own agency to make decisions about their lives. Whether in her IEP or in other kinds of life planning, my daughter’s thoughts, feelings and goals should be prioritized.
So, with nervous hearts, we registered her for baseball. And she enjoys it so much! She loves that she is on a team and that she will get a trophy.
My husband and I realized that when she goes to baseball practice, she may not hit the winning home run, but she gets to play on a team and give people high-fives. And to her, being a part of a team, wearing the uniform and high-fiving her teammates is a success.
She does get over-stimulated and has a hard time following directions, but that is only a small part of her experience. By letting her coach know about her special needs, he was able to accommodate her and adapt the experience so she will be most successful. Seeing how much joy being on a baseball team brings her, I am so embarrassed and sad that I almost denied her this important opportunity.
Sometimes Even Momma Bear Needs to Back Off
She is still young, and like other children with special needs, her issues will change over time.
As her parents, we will have to change and adapt to be her advocates. But I also want to be respectful of the fact that she is not only a person with a disability or special needs; she is also a person. And as a person, she deserves to be able to make decisions about what sort of activities she participates in. The activities she chooses to participate in might not always go well. I am not going to pretend this easy; it’s not.
As a Momma Bear who fought so hard to make sure that my daughter has everything she needs and that no harm comes to her from anywhere, it is hard for me to accept that avoiding harm isn’t part of my role as her advocate or her parent. The truth is, as a parent, I can’t protect her from all harm.
Having special needs and a disability is going to hard enough for my daughter.
She shouldn’t have the added burden of having parents—even well-intentioned parents—telling her what she can and can not do with her life. Thanks to person-centered planning, I’m learning that for people with disabilities, parents can sometimes be an obstacle to their children’s happiness and joy and goals. My job, as her mother and her advocate, is to protect her and to give her what she needs. But sometimes what kids with disabilities need is for their parents to back off and let them make some of their own decisions.