Modern Life: The Joys and Challenges of Raising a Child with Cerebral Palsy
Photography by Amy Postle
Flexibility is one of the cornerstones of sane parenting, especially when you have a child with special needs. As the parents of 9-year-old Sabrina and 12-year-old Max, who has cerebral palsy, Ellen Seidman and her husband, David, have become flex masters—they don’t let challenges dictate how they live their lives. This attitude keeps the family strong and acts as a source of inspiration for Ellen’s award-winning blog, Love That Max. We talked with Ellen about going with the flow.
Which three words best describe your family?
Down-to-earth, adventurous, fun-loving.
How has having a child with special needs changed your outlook on life?
I've always been a person who likes to be in control, which has come in handy for making sure Max gets the services he needs. But having a kid with cerebral palsy, a condition for which there is no cure, has given me a roll-with-it sensibility. He can't catch the softball? Okay, so we'll just play a batting-only game of T-ball. Can't get him to go into a restaurant because it's too loud for him? Okay, we'll try another one. You have to be flexible when you have a child with special needs, or you will drive yourself up the wall.
How would you describe your parenting styles?
Me: Disciplinarian. Husband: Marshmallow-like—and he'll readily admit it too.
What is dinnertime like at your home?
First, I have to rip the kids away from the TV. At the table, we'll talk about upcoming activities and how school is going; Max uses an iPad with a speech app to help him communicate. A lot of times, Max will try to get us to hold the spoon and feed him, but we tell him he has to do it himself—we're all about encouraging independence.
What is your family’s favorite activity?
Traveling of any kind—road trips, plane trips, train trips, wherever and whenever!
How does Sabrina relate to Max and vice versa? Has being his sister made her a more empathetic person?
In many ways, my kids are typical siblings: They squabble, they're competitive with each other, and they want to make sure they get the same size of birthday cake. But because Max has physical challenges, Sabrina has to help him sometimes—say, with holding the Wii remote or drawing something he wants. As the years have passed, she’s become more likely to instinctively help him without my asking. Ultimately, I can imagine that this will translate to her having a hearty sense of empathy for others with disabilities—but because she can also see Max's abilities, she'll know that even though people with special needs have their challenges, they are capable in so many ways.
What is your pet peeve about how people treat Max?
The staring. It's so rude. Hello, didn't your mother teach you any better?! I'd much rather people come up to us and engage in conversation rather than gawk. Or even just say hi.
Photography by Amy Postle
Your biggest concerns?
They've changed over the years. When Max was a tot, I was anxious about his development and what he would and wouldn't be able to do, and when. While he's doing really well for himself (he walks and has some speech), I've come to accept him for who he is, keep hoping for progress, and keep getting him therapy up the wazoo! My biggest concern, which I'd venture to say is shared by every parent of a child with special needs: What will happen when my husband and I are gone?
How has your blog, Love That Max, helped you?
I started my blog to inspire and inform parents of kids with special needs. I'd been through so much grief after Max was born, and I wanted to help others who were in that dark place. I know from comments and emails that parents find comfort in my writing, which does me good. But I also get so much in return: new perspectives on handling Max's challenges and practical information too, like the best kind of sneakers to fit Max's foot braces. It's also been extremely satisfying to show people who don't know anyone with special needs how absolutely awesome they are. I don’t want pity for my son—just inclusion and respect. When I hear that I've changed the way people view those with disabilities, I'm damn proud.
What is the most important thing you’d like people to know about special-needs children?
It’s best for parents to explain to their kids early on that children with disabilities are more alike than different from them. They should teach them to not be afraid of those who don’t act, talk or move like they do. Please encourage your child to say hello to children with special needs at the playground, the park, a party, wherever. What surprises you most about parenting? How cute your kids remain, even as they get older! They are as yummy and adorable to me now as they were when they were roly-poly babies. I still can't stop kissing them. Only now, they're getting embarrassed about it.
Any New Year’s resolutions for you and your family?
We don't make formal ones, because the second you make them they are doomed to fail, so I'll just say that our unofficial resolution is: Find more time for fun!