In 2012, my second child Henry was born with special needs. When I was pregnant with him, I caught a common virus called cytomegalovirus (CMV), and the virus impacted his brain.
About 1 in every 200 babies is born with what's known as congenital CMV, according to the Centers for Disease Control and Prevention (CDC)—and about 1 out of 5 of those babies have birth defects or other health problems.
Over the years, as complications have arisen, the list of health care providers we see in order to support Henry has increased. Today, he currently checks in with nine doctors. We see many of them quarterly or bi-annually.
Finding a doctor you love is hard. But finding one for a child with special needs can be even harder. Because we see his team so often and depend on them so much, it's important for us to find people we trust who we believe will support him best. And finding the right medical professionals has made a huge difference in both our lives and in Henry's care.
Here are some of the traits, characteristics, and qualities I look for in a provider for my son with special needs that I encourage other parents to look for too.
A Provider Who Sees Past a Disability
Henry is unable to walk or talk. But he is smart and keenly aware of his surroundings. I always look for providers who interact well with Henry despite his inability to communicate with words. They see the sassy way Henry gives side-eye when he's unhappy or his responsiveness when he's engaged.
A tuned-in doctor can sense when Henry feels well and when he doesn't. The ability to look beyond a disability and see a child for who they are takes the pressure off of me as a parent to bridge a potential gap in communication. I've found that medical recommendations are also often better because they aren't based on his diagnosis alone.
A Provider with Good Bedside Manner
When we first meet with a nurse or doctor, I fill them in on any changes in Henry's health history since our last visit, but once the exam begins, the conversation should shift from me to my child. At that point, the professional needs to explain to Henry what is going to happen. A demonstration before touching is great as is explaining that he won't get hurt or that he might feel a quick pinch.
We both feel more comfortable when the doctor shows Henry respect. It makes him more relaxed during an exam. He's then more himself and easier to diagnose and treat. And the next time we visit that same doctor? Henry will anticipate a positive experience.
A Provider Who is Readily Available
Easy and open communication is key in any relationship. When I'm relying on a doctor's advice and recommendations, it's important that I'm able to reach out with follow-up questions or concerns. Sometimes, I need a prescription or a letter of medical necessity to order equipment. Sometimes, I forget to ask a question at an office visit.
Our most supportive doctors are the ones who are a quick email (or portal message) away. We, of course, have mutual respect for each other's time—something that results in quick and efficient support outside of office visits.
An Open-Minded Provider
We are always brainstorming new ways to help Henry continue to move forward in his development. Thinking outside the box is crucial. Recommendations for new types of therapy can help him capitalize on recent gains. Perhaps something that was difficult years ago will be productive now.
For example, Henry recently received another diagnosis and is taking new medication. As a result, he feels great and has begun to move his body in new and exciting ways. Because of this, we are now able to put him on a treadmill with supports. We tried this years ago, but he wasn't motivated to move. Now, he's stronger, more determined, and benefiting from something we gave up on in the past.
It's important that we continue to revisit options and work with providers who are open to this so that therapies can be applied at the most beneficial time.
A Provider Who Shares Our Joy
Henry's accomplishments are not typical. He hasn't met many age-related milestones. But we celebrate the "inch" stones in a big way. Henry is super proud of himself and loves to show off.
Last month, we hadn't seen one of Henry's specialists in quite some time. We explained his recent accomplishments, and the doctor was genuinely excited to see his mobility gains.
With so many doctors and therapists constantly pointing out the challenges Henry faces, the celebrations are that much more important. Positive feedback from medical professionals makes it easier for us to keep moving forward with things like his many physical therapy appointments.