Parenting a kid like Solly has taught me more than I could have imagined. I mean, I could probably write a book simply listing everything I’ve learned, from medical terms to therapy movements to assistive technology and more.
My biggest takeaway so far is this: it’s ok to disagree with a doctor, specialist, therapist and find someone who is a good fit for your child.
Growing up, we always heeded our doctor’s advice: when I dislocated my shoulder, we took an X-ray and I went to physical therapy; when my adult teeth started growing crooked, it was three years of braces for me. Simple and straightforward. However, what I’ve found over the past (almost) four years is that medicine, particularly when you’re dealing with a unique organ like the brain, is often times more an art than a science. There’s no one correct way to rehab that unique organ.
It took me over two years before I realized that not all doctors and therapists are created equal, especially not for a medically complex kiddo like Solly. Part of the delay in learning this is because we were insanely fortunate to be paired with the perfect physical therapist less than one month after Solly was discharged from the NICU. Her name is Miss Laura, and she still keeps tabs on Solly’s progress even though we haven’t seen her since we moved away from Washington, DC. What I’ve found in physical therapy is that many institutions approach rehabilitation by setting goals for gross motor skills and then moving a child towards those goals even if they aren’t ready for them. And what I mean by this is a common goal for Solly in the early days was sitting, holding quad position, walking, etc. But, often times, he wasn’t ready for those goals and would grow frustrated with therapy sessions because the therapist was essentially forcing him into and holding a position that he wasn’t physically ready to do.Back to Miss Laura.
In addition to physical therapy, Laura has training in something called NDT – Neuro-Developmental Treatment, which, for lack of a better description, means that they move the body through space to guide normal movement patterns when it’s impossible for the brain to do so on its own. Laura spent the first year of Solly’s life teaching him how to self-soothe when he was super irritable, teaching his brain to pull his head, arms, and legs front and center when they wanted to flail backwards naturally – in an unnatural way – and then teaching him how to move his body correctly towards the first milestones like rolling, sitting, pulling up to quadruped position, and crawling. She was in no rush for him to meet his major milestones – she wanted him to do them correctly because that impacted how he would move for the rest of his life.
Because Laura was the first physical therapist we worked with, I assumed that all pediatric stroke cases were treated in the same manner. However, I found out when we moved cities and had to start building our team from scratch, this really isn’t the case. I’ll begin by saying that while every therapist we worked with was wonderful, knowledgeable, and sweet, we learned that not every pediatric therapist was the right fit for us. When we moved to Nashville, our neurologist and developmental pediatrician gave us referrals to rehabilitation at Vanderbilt, we took the first available appointments for feeding, PT, and OT, and we dove right in. A year later, despite having therapy every day of the week, Solly was barely making any progress. On the surface, I started doubting his abilities and fell into a bit of a depression, but deep down and based on our experience with Miss Laura, I knew he could do so much more. I knew that we could find therapists that understood him and “got” him despite his physical complexities.
I decided to trust my gut and began researching other options. I learned to reach out to local networks – parents, therapists I trusted, and support groups – to find other providers that might be a better fit for our situation, and I realized that, yeah, there are other ways to approach rehabilitation. For example, many Occupational Therapists, Speech Therapists, and Feeding Therapists that we’d worked with so far tried sitting Solly in a chair for their entire session, but I found that there are therapists who use wild and crazy play as a way to engage their patients while incorporating speaking, fine motor skills, and, yes, even eating. A new feeding therapist we saw (and now see weekly) incorporated physical therapy and stretching into her appointments, wanting to prepare Solly’s entire body for feeding time. She also talked to us about how his body was processing food (like many CP patients, he suffers from constipation) and helped us come up with a plan to help him so he was actually hungry and wanting to eat. There were even more alternative therapies – Anat Baniel Method, hippotherapy, intensive therapies, hyperbaric oxygen therapy, stem cells, and more. In short, we needed to find the people who have had tons of hands-on experience with children like Solly to build our team. He’s not a textbook case of cerebral palsy, but that doesn’t mean that there aren’t people out there who can’t help him. We gave some of these different therapists and alternative therapies a try and, wow, did it make a huge difference!
While reaching out to new therapists, I also learned that it was ok to say goodbye to therapists whose methods weren’t the right fit for us, understanding that while it might be a good fit in the future, it just wasn’t the right fit right now. I also learned that it was pointless to fill our week with therapies where we were not seeing any benefit. This philosophy also applied to doctors and specialists: even though they had a medical degree and certainly knew what they were talking about, some doctors just aren’t the right fit for us because they don’t share the same philosophies as us. Taking this leap of faith and trusting my instincts has been a huge learning curve for me, but I think the payoff has been great as we’ve built a strong team of warriors for Solly and, as a result, Solly has made so many gains in the last 18 months and especially in the last 6 months.
Our Favorite Places
If you’re in Nashville and wondering which doctors, specialists, and therapists are the right fit for us, right now, head over to our Nashville Resources page.
What I’m Reading
“When the Neurologist Really Knows How Patients Feel”
I came across this article in the New York Times written by a soon-to-be pediatric neurologist who had suffered a stroke as an infant. Her words are on point and so in line with what we’re finding: it’s so important for there to be some level of experience to truly understand a medically complex kiddo like Solly.