Tips to Help Your Child with CP Thrive, From an Adult with CP

A guest blog by Kathleen Downes. Note that the author prefers identity-first language (e.g. referring to oneself as a “disabled person” rather than a “person with a disability.” However, both terms are used in the following piece.

More elusive than the Loch Ness Monster! Less media coverage than squirrels eating cheeseburgers! Harder to spot in the wild than Bigfoot! Who are we? Disabled adults! If you went based on the media and most existing social service systems, it would be easy to think that folks with cerebral palsy (CP) vanish into thin air when they turn 18 in a triumphant blaze of paperwork. But don’t believe the stories. We’re here, lurking in your very neighborhood! Jokes aside, we’re actually everywhere…doing mundane things like working, going to school, and complaining about the lack of walker color options once one grows out of the pediatric size.

Do you have a kid with CP? Are you confused by all the acronyms in disability land? Are you wondering what life will be like for your child? Putting on some AFOs (leg braces) and wondering how people survived before Velcro?

It can be overwhelming looking for information and finding the best resources for (and with) your loved one with CP. But as you embark on this adventure, don’t forget disabled adults. We are a unique and tremendous resource. I am 27 years old and I love meeting kids with CP. Besides enjoying the nostalgia rush when I see tiny AFOs with pink straps, I truly enjoy showing younger people with CP the way. It is the honor of my life to play some role in helping the next generation of “my people” thrive. And when we work together, there is less fear, more joy, and more rousing discussions about cute sneakers that fit over AFOs.

I cannot speak for all adults with CP, but as one member of this fabled, fabulous group, here is some of what I’ve learned and would like to tell parents and guardians without CP raising kiddos with CP:

We are the real experts and carry with us a trove of real-life experience.

Adults with CP have a perspective that no non-disabled parent, sibling, therapist, or doctor can offer. We have the scoop on cool camps, recreational programs, and equipment. Most importantly, we know exactly how it feels to have CP. Want to know what life is like with CP? Listen to those living this story. Our perspectives are often ignored and drowned out by the opinions of parents and professionals without disabilities. But if you want real (probably overpriced, adapted, AFO friendly) boots- on- the- ground experience, adults with CP are your best source… because we’ve been there.

Help your child connect with other people who have CP and other disabilities early in life.

Community is so important. Peers who are living with CP and other disabilities can offer support and camaraderie that no one else can. The disability community has its own history, humor, and rituals. Our shared experiences are vital. In fact, a 2017 research study[1] by Silverman et al. concluded that young people who have friends with similar disabilities report a higher quality of life. The sense of belonging among my disabled friends has sustained me throughout my life and given me pals to turn to for those “found a fry on my footrest before giving a speech” moments that…well, only make sense if you’ve been there.

Ditch the “overcomer” narrative.

Society puts a lot of pressure on kids and adults with disabilities to “overcome” the disability. Mainstream culture has told us that we are victorious, successful, and courageous if we minimize our disabilities or encourage others “not to see the disability.” However, many of us feel that CP is a part of who we are and should not be treated as something to overcome– because it’s not a negative trait. Having CP comes with many struggles, but also with many joys, like the people and places I’ve come to know because of my disability. The expectation that I should overcome an essential part of myself is deeply upsetting. Instead of focusing on overcoming my CP, I prefer to focus on living well in a disabled body. If you can’t see my disability, you can’t see a full picture of me.

Don’t be afraid of mobility aids.

Unfortunately, many people have been taught that wheelchairs, walkers, and crutches are symbols of “giving up.” But assistive devices do not have to be constraints—think of them as tools. My wheelchair has allowed me to keep up with non-disabled people, go out without an assistant, and navigate without fear of falling. If anything, my wheelchair has made me more independent, safe, and comfortable. What if we reframed assistive devices as symbols of freedom? There’s still time!

Be prepared to talk about ableism.

Ableism is discrimination and prejudice based on disability. Sadly, every adult with CP can share multiple instances of ableism. It doesn’t always look like overt bullying. Sometimes, it looks like an event not made accessible for wheelchair users. It can look like the exclusion of disabled folks in the media. It can look like being passed up for a job interview when the employer gleans that you have CP. Conversations about ableism are difficult and often uncomfortable but always necessary. Naming these occurrences will help your children to feel that their experiences are valid and fully acknowledged. Helping young people with CP to cope with ableism is essential to supporting their mental health. Helping them to cope also means knowing that many experiences with ableism can’t be fully understood by someone without a disability. The best way to be an ally in these cases is to listen.

Know that independence looks different for everyone.

The stereotypical idea of independence for people with CP is walking unassisted and performing all activities of daily living on one’s own. But independence is not one-size-fits-all and it doesn’t have to mean doing everything on your own. For me, independence means hiring and supervising my own personal care assistants—I will always need help but I want choices about who helps me and how they complete their tasks.

And finally…Don’t let therapy rule your life… the occasional “day off” won’t halt the universe.

My mother and I were recently reminiscing about when I was a little girl and she felt like I would shrivel up and disappear if I missed one session of physical therapy (PT). I am fortunate to have had great PTs, but sometimes a skip day can be a good thing. Don’t get so bogged down with appointments that you forget to live. In retrospect, we wish we had realized sooner that the world doesn’t stop turning if one day Dollar Day at Carvel sounds better than physical therapy. It tastes better too!

So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs.

Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.

Kathleen is a 27 year old from Floral Park NY and one of the Weinberg Family Cerebral Palsy Center’s first patients.

References:

[1] Silverman, A.M., Molton, I.R., Smith, A.E., Jensen, M.P., & Cohen, G.L. (2017). Solace in solidarity: Disability friendship networks buffer well-being. Rehabilitation Psychology, 62, 525-533.