My wife and I recently decided to put our son back on a medication. We had taken a break for a long time, and that break had coincided with a philosophical shift—i.e., that we didn’t want him on meds for the rest of his life. And now we’re changing course.
He had been on gabapentin for spasticity for a long time, and we weaned him off, hoping that he would be able to adjust. Our primary concerns were issues with kidney troubles, and the long-term effects of being on a neuro-inhibiting medication.
But then the doctor expressed some concerns regarding the spasticity in his arms. He told us that at some point our son might be at risk for contractures or other orthopedic deformities. He recommended that we get back on gabapentin to minimize those risks.
We were then left with a choice. What we wanted for our child versus what was best for him. Rock and a hard place really. So we decided to put him back on the medication. It was a difficult decision because we had to fight against our every urge not to, and do what we thought was best for him in the short term, and not really think about the long term.
The lesson we learned here is one of flexibility and one of living and thinking for the now and not necessarily the future. Maybe we’re missing the forest for the trees, but this is what’s best for him in this very moment. And honestly, tomorrow is a complete unknown, so why try to make decisions with that in mind?
He’s been on the medication for about 2 weeks now—and guess what? It was the absolute right decision. His mood is better. He has less spasticity. He’s just flat out happier. So that decision that we agonized over, that went against our earlier beliefs, worked out.
If I’ve learned anything from being a parent of a child with a disability, it’s flexibility. Roll with the punches and surf the waves. The right decision today might be the wrong decision tomorrow and vice-versa. I’ve found that instead of having a hard and fast decision, it’s better to develop a set of values by which to make decisions—and in this case, our values are based on what’s best for our son today and tomorrow.
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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.