I was born with cerebral palsy (spastic diplegia), although my case is relatively mild compared to others, I wanted to share some things that would’ve been helpful growing up as a child with CP; things that I wish my parents would’ve done for me, in hopes that it may help other parents of children with disabilities.
- Remove the stigma and shame surrounding disability. Be open and honest with your child about their disability; teach your children (able-bodied or not), that every child is different in their own unique way. Focus on acceptance instead on hoping for a “cure,” because the “cure” mentality often displayed by my parents and those around me, always made me feel like I was fundamentally broken. There’s a kids book by Sonia Sotomayor called “Just Ask! Be different, Be you.” It talks about the different ways that disabilities impact children, and how some are visible and others are not (ADHD, autism, deafness, etc). It’s a great book, in my opinion.
- Try not to be so pessimistic about your child’s condition: This doesn’t mean pretend they don’t have CP, let them know that CP is PART of them, but it’s not ALL of them, and it doesn’t have to define them. Focus on acceptance and highlight their strengths.
3. Find out as much about your child’s condition as you can, and make sure they understand it: Growing up, I was constantly bullied in school for walking with a limp due to CP. Kids and even adults at times approached me to ask what was “wrong with my leg” or why I “walked funny.” My parents never really talked to me about my disability (other than telling me I had to wear my AFO), so I never knew what to say or how to react when it was brought up.
Knowledge is power, when you can explain your child’s condition to them in a way they can understand, it enables them to explain it to others and this removes much of the stigma and shame associated with having a disability. There’s so much more about CP that I’ve recently learned, that I wish I’d known when I was younger. For example, did you know that children with CP tend to get startled more easily than their peers? I’m super jumpy and didn’t know this was related to CP until recently. I also have a poor sense of direction and tend to get lost easily.
If I’d known more about my condition, I wouldn’t have felt so helpless and ashamed when it was brought up. If I’d been better informed, I would have been able to explain to others what my condition is and how it affects me, and it would’ve made a world of difference.
4. Make sure your child receives any accommodations he or she needs in school. Ask them how their day at school was and if they’re struggling with anything in particular. CP and other disabilities affects us in so many more ways that it may be easy to overlook some things. For example, I find that it takes me a while to sort through my thoughts and get my ideas down on paper when writing an essay, but as a child I was too timid to advocate for myself. It wasn’t until I was an adult in college that I asked for extra time on tests and writing exercises. I also started to voice-record lectures so I could go over them slowly on my own time, little things like these also make a huge difference.
5. Teach them self-advocacy skills. Your child may also be too shy or afraid to ask for extra help, so you have to be their advocate, but also teach them self-advocacy skills along the way. Make sure they know it’s ok to ask for help, it’s ok to ask for more time, etc..
6. Treat the WHOLE child. I can’t stress this enough. Because CP manifests itself physically, it’s easy to overlook the mental and emotional toll it can take. My parents always focused on treating or “fixing” the physical aspect of CP, but internally, I felt more broken than I ever did physically. Counseling would have been really helpful growing up, to help me accept my condition and be comfortable in my own skin, and teach adequate coping skills (learning to self advocate, voice my needs, be more assertive, how to deal with bullying, etc…)
7. Never underestimate, shelter or stop your child from trying something new. Tell them that they can do anything they put their mind to, even if they might need some extra help sometimes or some accommodations along the way.
8. Representation Matters Growing up I rarely encountered adults or role models with disabilities. It’s important for your child to see that others with their condition have thrived despite adversities. Thankfully, social media has made this easier than ever before; I’ve come across surfers, body trainers, therapists, actors, etc.. who have cp or similar conditions. It helps to know that you’re not alone and that there are others out there with your conditions who have thrived. Here are a few that I can think of off the top of my head:
Pronetoride on IG (surfer with cp)
@realchelseabear on IG (disability advocate with cp)
@chrisruden on Instagram (powerlifter and model)
And the list goes on…
I know that CP is different for every child, and some are much more affected cognitively and physically than others; The point is to approach the condition in a more positive manner, from a place of acceptance.
I have a much more positive self-image now than I did as a child.. but this is because I took the time to seek help (psychotherapy and medication) as an adult. I have anxiety and depression, and much of my issues stem from the way that having a disability was stigmatized and always viewed in a negative light.. as something that was “wrong” with me, instead of something thats just part of me.
I’m now a senior in college working toward my degree in communication sciences and disorders, to become a speech therapist (with a minor in psychology), and I’m able to see my disability in a much more positive light, but this took A LOT of reframing and conscious effort on my part. Reframing the way you and others around you view and talk about disability (shifting toward a culture of acceptance) will ultimately help your child be more comfortable and accepting of his or herself.
Disclaimer: the link to the children’s book is an affiliate link, should you choose to purchase the book using my link, I get a small commission (you are by no means obligated to use it).
