We just finished building a house and let me tell you, it was not a fun experience. There were so many details to manage and so many little issues that popped up. A few people have asked me for advice on the process. The main piece of advice that I have for them is to “know your plans.”
The builder and contractors are too busy and not invested enough (typically) to be perfect. So ultimately, it’s up to you to know your home plans through and through. And to make sure everything goes according to what you want.
I realize that this philosophy applies to my son, too. He was officially diagnosed with autism this past Tuesday. It wasn’t a surprise at all. It was actually a bit of a relief. But it made me reflect back on a second opinion we got from a doctor.
We went to see the doctor to find out a little more about what was going on with our son. Based on a 15-minute appointment, he told us that dystonia (twisting writing motions) was more of an issue than spasticity (tightness). Which we just didn’t believe, but we’re not experts on medical stuff, just on our kids.
So, instead of taking his word for it, we decided to do some research.
We watched tons of YouTube videos on dystonia. We did a bunch of reading and asked our physical therapists (PT) to help us think about it. Our PTs agreed with us. So ultimately, we just kind of dismissed it.
This autism diagnosis makes us realize that the doctor interpreted Dom’s “flapping” (a common autistic behavior) as dystonia. Had we taken his word for it, we would have gone down a much different (and wrong) treatment path. But we “knew our plans” and we knew our son. It turns out that trusting our gut in that moment made all the difference.
I suppose this is a healthy reminder for us as parents. It’s our job to speak on behalf of our kids. And doing so means that we are constantly on and we have to think critically about every single piece of feedback we get. Doctors are great to work with. But ultimately, for this to be a working partnership, we have to do our part and “know our plans.”
Find out more about talking with your doctor.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.