When Céline was diagnosed with spinal muscular atrophy (SMA), her neurologist told my husband and I that physical therapy could, without a doubt, be beneficial to her. From that day on, we committed to focusing on physical therapy at home and incorporating it into our everyday lives. There are so many aspects of SMA that simply can't be controlled. Committing to doing physical therapy is not one of them. Since we can commit to doing it, I've put a lot of energy there.
I'm not a physical therapist. I'm simply a mom, improvising ways for my disabled daughter to reach her fullest potential physically. I get a lot of questions about Céline's exercise regimen, so thought it might be helpful to share what has worked for us.
In some ways, this role comes naturally. I'm a fitness enthusiast and health nut. Exercise was already a way of life. The real challenge was making this a way of life for a tiny person. Getting a toddler who has a lot of physical challenges and her own agenda to do physical therapy day in and day out is not an easy feat, but Céline is a trooper - and because she has been doing this since she was six months old, it has become a way of life for her, too.
“My approach to physical therapy with Céline is through fun or "informed play" as I like to call it. I try to make it as enjoyable as possible because Céline is a child, not just a patient.”
And she frankly won't cooperate if she doesn't like something. In the beginning, the majority of our physical therapy happened during bath time because that time already existed in our schedule, and she's always loved water. Now, bath play has turned into swimming, weight bearing exercises have turned into walking, tummy time has turned into crawling and so on. No matter what particular skill we are working on, I try to make it lighthearted and often provide rewards.
I can not take sole credit for Céline's exercise regimen. It is a team eort. If Céline doesn't cooperate, nothing happens. She is the most important factor in this equation. We work with physical therapists at home and in facilities that help us create short-term and long-term goals and exercises to accomplish them. I keep in touch with other SMA parents and we share tips, tricks and news on the latest equipment. Nothing motivates Céline more than trying to keep up with her peers, which is why she spends a lot of time in school, on the playground and doing extracurricular activities.
Now that Céline is in school, fitting in daily at-home exercise has become a bit more complicated. We generally do physical therapy before school, depending on how the morning is going. On Saturdays and Sundays, Céline does exercise with her nanny, who is a student working toward her degree in physical therapy.
There are days when we simply can't or won't do physical therapy, like holidays, sick days or when we're on vacation. On those days, we sneak in physical therapy in other ways. We might ask Céline to walk instead of using her stroller. On vacation, we may spend extra time in the pool. On rare occasions, we may not do physical therapy at all. However, we all need a break sometimes. But when vacation is over, we're right back to it, refreshed and ready to rock and roll.