Mom Talks Raising a Son With Cerebral Palsy & Making a Film About It

kelly o'brien children Filmmaker Kelly O'Brien has made headlines for her moving film Softening, and its short adaptation, "My Brother, Teddy." Her aim: To capture the experience of raising a child with severe physical and developmental disabilities. In "My Brother, Teddy," Kelly illustrates the beautiful relationship between her then-6-year-old daughter Emma and her 3-year-old brother, who has cerebral palsy. While the film has resonated with many parents of children with special needs, the process of making it actually served various purposes for O'Brien.

Kelly talked to The Stir about what inspired her to turn to film to cope with Teddy's disability, why brutal honesty works best for her, and what she advises other moms of disabled kids.

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What inspired you to make a film about your son's disability?
Before I had kids I was a television producer. After Teddy was born and diagnosed with cerebral palsy, I realized my life suddenly had enough drama for a “good story,” but I was in too much pain to document anything. When Teddy was almost three, I decided to go back to school to make a film about this experience. Time had helped me process some of the shock and grief of what had happened and very slowly I started making little fragments of a movie that would take another three years to complete.

How did the process help you better cope with the emotions you were experiencing related to his diagnosis?
I think making such a personal film was healing in some ways, but not the ways you’d suspect. It doesn’t erase the pain of what happened, or ease the day-to-day stress of raising a kid with special needs in a culture that’s obsessed with perfection, but there is enormous satisfaction in making something heartfelt, honest and beautiful about the joys and challenges of raising a disabled child and putting it out there for people to see. Films can’t change the world, but hopefully mine can make a tiny intervention, make the invisible visible by sharing a different experience of parenting, of family, that most people fear and would rather not talk about. There aren’t too many films by mothers about having a child like Teddy, so I also hoped that my story would resonate with other parents who had kids with special needs.

Of course, I was plagued by doubt throughout – wondering who really cares about me and my family – but there were other moments when it felt like an urgent story I had to tell. The film began as a way for me to get back into the world and have some connection to what I used to do, but it became much more than that.

You've said that you feel as though you've been through so much that you honestly don't care if people don't like or agree with it. Do you still feel that way? Where do you think that comes from?
Just today I was in the changing room at the gym, and I started casually talking with a woman (who I didn’t know), very pregnant with twins, about her upcoming birth. She complained about how uncomfortable she was feeling. I’m by nature pretty empathetic, but today, I suddenly exclaimed, “I was on bed rest with my third for over a month in hospital and it was really hard!” Then, she started talking about her prenatal yoga class and her plans for a natural birth. I should’ve said, “Amazing!” but instead I blurted, “I’ve had two emergency cesareans! As long as the babies are healthy, it really doesn’t matter.” And she replied, “I’m such a type-A personality. I want to control everything, but I’ve learned through this pregnancy that maybe I can’t.” Then, she quickly got her things from the locker and said goodbye, and I wished her luck. I didn’t get a chance to talk about Teddy and how I experienced that life lesson more profoundly than most mothers.

It’s difficult to know when to speak, or what to say, or how to talk about my experience of raising Teddy to mothers who don’t have a clue what it’s like, but I’ve also discovered that I don’t always share the same philosophy or perspective as mothers who have kids with disabilities. I love Teddy, more than anything, but I don’t believe that he’s a gift from God or that he’s a blessing in disguise. I don’t believe that I got what I could handle or that things happen for a reason. I think bad things happen to good people all over the world and that you have to do your best to make sense of it and learn how to embrace the life you never planned on, which is, as far as I can tell, a life-long process.   

Have other moms come to you with their own stories since seeing your film? Any particularly touching/moving things they've shared with you
The New York Times recently commissioned me to adapt a shorter version of Softening for their Op-Docs section. So many of the comments people posted were heartening. One that stood out for me was by Dawn Hamilton from Los Angeles who said, “Wow. This stopped my breath and moved me to tears. So beautiful. Thank you for sharing it, Kelly. As the mother of a 3-year-old with CP, my hope is for the world to open their eyes to disability and accept our children with open arms; to look past their differences and see them as the amazing people they are. This mindset comes so easily to children and I can only hope that as more children grow into adulthood they remember this.” Another was from a mother from Cleveland, Ohio who wrote, “My daughter, Julia, is 8, and though she is challenged with a severe disability, she takes the most delight from the simplest of things. I've learned so much from her, and your film beautifully illustrated and reinforced that necessary perspective to all of us. Thank you.” Making the film was a difficult, painful process, but a comment like that makes it all worthwhile. 

How has making the film/your journey with your son changed your thoughts and feelings on disability? -How do you feel it maybe changed you as a mom?
Before Teddy, I was one of those people who would stare and feel sorry for parents with kids with disabilities. Now I understand their struggles, but I also know how children like Teddy can enrich one’s life in profound ways. Teddy reminds me everyday about what really matters. He always pushes me to be a better, kinder person. And despite the fact that he’s deaf and can’t talk or walk or see very well, he smiles and laughs all the time. He’s by far the happiest person in our family! My closest friend says that it’s only me who’s sad, Teddy’s not sad. But I worry so much about him. I worry about the future, about who will take care of him when we’re gone. And then there’s our day-to-day life – he’s a handful and raising him sometimes takes more patience and strength than I was born with. But as I say in the film, “When Teddy was born the doctors, the nurses, the social workers all told us to take one day at a time, to not look too far ahead. Most of the time the future is all I can think about. But being with Teddy, really spending time with him, is all about living right now.”

Any words of wisdom for other moms of disabled kids who are struggling as you did?
I find a lot of comfort and inspiration from reading other people’s personal stories. Mary Karr, one of my favorite writers, said that no matter how hard our daily lives are “we still fight for the light ... we lean into love.” Those would be my wise words to live by. On a practical level, the latest bit of valuable advice I’ve come across is from an interview with Darcy Fehlings, a developmental pediatrician at Bloorview Kids Rehab in Toronto, who says, “I think families of children with cerebral palsy often get stuck in this concept of ‘I have to do these intense therapy routines’ with my child. I wish that I could help families move towards appreciating how important it is for their child to participate in fun activities and focus on wellness rather than just focusing on repetitive motor drills to try to obtain function. I think focusing on socialization and leisure is super important. Often, families say, "I wish I’d figured that out earlier."


Can you relate to Kelly's take on her son's disability?

 

Image via Kelly O'Brien

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