Cerebral palsy: Understanding and embracing the journey
October 6 is World Cerebral Palsy Day, a movement to increase awareness about the #1 childhood motor function disorder. In our efforts to encourage open discussion in all topics, we reached out to influencers impacted by cerebral palsy, to get their views on the condition, misconceptions, and sources for help.
For today’s interview, we chatted with Ellen Seidman from the blog Love That Max. She and her husband have three children including Max, who is now a high-schooler! Ellen started the blog in October 2008 – it’s turning nine years old and is one of the most well known Cerebral Palsy blogs on the web! Check out her answers below to our questions about her family’s cerebral palsy journey.
| This is the first in a two-part interview series on cerebral palsy. Read the second interview with Alicia Searcy. |
Lindsey Pasieka, ConsumerSafety.org October 4, 2017
| What’s one thing you wish you knew at the start? |
I wish I’d accepted earlier on that children with disabilities proceed on their own timelines. I was perennially anxious about Max’s development—I wanted to know what he’d be able to do. Would he walk? Would he talk? How would his cognition be? I’d torture myself by reading the child development books and email blasts about what kids should be doing at every week/month/year. I finally tossed the books and unsubscribed, and learned to embrace the inchstones.
| What’s something you want people to know about Max? |
I wish more people understood that a disability is just one part of who someone is. Sometimes, people look at Max and see only the cerebral palsy. (Well, and his amazing hair!) But Max is so much more—he’s a bright, congenial, charming person with all sorts of abilities.
| How do you deal with staring? |
Sometimes, I break the ice by saying “Hello.” If you view it as a chance to educate people, it’s less irksome. That said, at times it gets to me, especially when people are being rude. I once wrote a letter on my blog to a mother who walked by us and gaped blatantly at Max.
| What is the right way to approach you if someone has questions about Max, or CP? |
Well, I can’t speak for every parent of a child with disabilities but I’d personally prefer for you to come up and say “hi” to both of us. And then, talk to both of us. When Max was younger, especially, people had a tendency to address only me and ask me questions about him while he was standing right there, because they presumed he didn’t understand. Always presume competence.
| What’s your experience been like with doctors? |
Overall, good. I’ve worked really hard to come up with Team Max, a group of therapists and specialists who are both wise and encouraging. I learned, early on, how important that is. When Max was a few months old, I took him to see a neonatologist, a relative of a good friend of mine. He examined Max and informed me, “His future looks ominous.” As I sat in the social worker’s office afterward, sobbing, I told her, “No doctor should ever say that to a mother. What good does it do our children if we don’t have hope?” I never went back to that doctor again. Sometimes, you may not have a choice of doctors but as much as possible, find supportive ones.
| In hard times, who do you turn to for strength? |
My community. I started the blog to inform and inspire other parents, but also to connect. I’ve gotten such great feedback over the years, as well as on Facebook. After we had a worrisome bus incident the other week in which a driver got lost getting to our home and wasn’t able to understand basic directions—not exactly someone you want to entrust your child to!—I ranted about it on the blog’s Facebook page and heard from many other parents who’d also dealt with bus situations. It was reassuring.
| Why do you think CP is so misunderstood? |
Until I had a child with cerebral palsy, I didn’t know much about it myself. People lack the knowledge of what CP is. They don’t know that there are various forms of it; that it’s a condition, not a disease; and that you can be physically disabled but cognitively fine. (Here’s more information about what it means to have CP). Sometimes, they think having CP is a downright tragedy. I mean, look at this boy. Does he look like a tragedy to you? Exactly.
| How does Max advocate for himself? Is there something he’d like to say for this article? |
Max says, “I’m a smart guy.” He would also like everyone to know that he is going to Las Vegas in December with his dad and grandpa, a trip he planned himself!
| Ellen Seidman writes Love That Max, an award-winning blog for parents of kids with disabilities who kick butt. Its namesake: Max, a teen with cerebral palsy who… kicks butt. A mom of three, Ellen’s also a magazine editor and writer, web content and consultant, and professional snacker. Find her on Twitter, Facebook, Instagram, her blog, and web site. |
Source ConsumerSafety.org
