People are often amazed by how well my nine-month-old son Benny is doing despite the fact that he has Down syndrome and had open-heart surgery only five months ago. I often let them think that it’s because we’re such great parents, but the truth is we have a secret weapon. We have an amazing occupational therapist, Sara Ostrom.
Sara first met Benny when he was only 2 weeks old. Because of his hypotonia, a common problem for babies with Down syndrome, he was super floppy, like a rag doll. Most infants naturally pull their limbs into their bodies, but Benny’s limbs hung loose. When lying flat on his back he couldn’t even keep his head centered, it would just loll over to one side. We didn’t notice it much at the time because he was a newborn, and all newborns are sort of floppy, but looking back I can see that without intervention it would have taken him a long time to achieve his milestones.
Sara came over to our house as part of our initial assessment for Early Intervention. Because of his Down syndrome we knew we would want to start as soon as possible, so we had called our local provider from the hospital the day after Benny was born.
Sara arrived with the assessment team and was delighted that Benny was awake. She picked him up, gave him a big smile and talked to him in a high voice, which she explained we should do to help him develop social skills and language.
She also brought his arms and legs in close to his body, to help with his muscle tone, and supported his head in a midline position.
Before the assessment I hadn't known what to expect, or if there was anything that we could do for a baby this young. I had imagined that it would be some sort of baby test that Benny would get graded on. Instead it just felt like a little group of nice people holding and enjoying our baby.
It was decided that Benny would benefit the most from weekly visits with an occupational therapist like Sara. I didn’t know what that meant exactly so she explained that an occupational therapist helps with whatever the person’s occupation is. In this case, Benny’s occupation is being a baby, so she would help us with everything involved with babyhood – eating, sleeping and moving.
The weekly sessions with Sara started a few weeks later. She came to our house for an hour and showed us how to help our floppy baby grow big and strong. Some days she just helped us come up with solutions to help with weight gain or sleep, but most of the time we spent a busy hour working on early communication skills and building the strength and coordination he needed to start rolling over, playing with toys and eventually sit up, crawl and eat solid foods.
I always knew that we were lucky to have Sara, and I got a really good reminder recently when I attended a workshop on NeuroMovement for special needs kids. We hadn't discussed it so I was surprised when I felt a tap on my shoulder and it was Sara, there to attend the workshop too.
Seeing her there made me realize how much she goes above and beyond. She’s been a therapist for many years and could easily rest on her laurels. But instead she is constantly attending conferences and workshops and reading up on the latest techniques to help kids like Benny.
Thanks to Sara's weekly guidance Benny is now an active, happy baby achieving all the same milestones as his typical peers. She is our real life superhero, we couldn't have gotten this far without her.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!