Amber-Joi
Advocating for your child
When my daughter Céline ("jelly bean") was diagnosed with SMA, I was warned that I should not expect her to crawl. She wasn't likely to develop the strength for that particular skill within the age-appropriate timeframe. I made it my goal anyway.
Crawling in an essential building block for advancing gross motor skills, especially for a hypotonic (low muscle tone) child, like Céline. I was (and still am) doing physical therapy with her every single day and, while I don't have a degree in physical therapy, I know my child. I felt crawling was within Céline's reach. I could see her slowly but surely gaining the strengh to crawl, so I continued to push her. Even though I knew it was possible that she might not achieve our goal, I knew that doing the work toward the goal could only benefit her.
We worked specifically toward crawling for a year and a half. I challenged Céline daily, but tried not to overdo it to the point of failure or frustration. I also tried to make the process as fun as possible - because, let's be honest, that's the only way to get a toddler to do physical therapy. We found a therapist whose visions aligned with my goals and six months after working together, Céline was crawling.
We parents know our children best! And if there is something that can be done to help them reach a goal, or to make life more accessible, then as parents, we should do our best to support them.
In conjunction with Céline's medical team and my husband, we make decisions that we feel are best for her, even if they do not fit the mold. I cannot stress enough that I take into account Céline's doctors opinions and hold them at a very high regard since they are the experts. But there are certain decisions that only a parent can make.
Now that Céline is three, she is starting to set her own goals, regardless of what ANYONE says.
“Recently, she told me that when she gets older, she is going to run and jump. So, I’m adding that to my list of goals for her future - and I will be advocating for whatever tools we need to fulfill that goal when the time is right.”
We are currently working on standing up without support from the floor and walking up the stairs. I'm also learning what it means to have a special needs child in school and that has opened up a whole new door of excitement, fear, uncertainty and, most importantly, advocacy for me.
“I did not wake up one morning and say to myself, 'I’m going to become an SMA advocate.' But the job comes with the territory and I’m content to do the work. The rewards are endless.”