Therapies, appointments—Self-time is also good therapy

When a child has a disability, the entire family -- not just the child -- is affected.  The child’s needs must be considered within the context of the family’s needs.  I’m both the parent of a child with a disability and a health care provider.  Since having a child diagnosed with a disability, I’ve gained insight into what works for our family. That knowledge has helped me understand the opportunity health care providers have to help families prioritize.

I clearly remember the small, sparse office my husband and I sat in as the speech pathologist summarized the testing, gave us the diagnosis of autism, and handed us a list of recommendations.  I felt I was in a black hole.  I was exhausted from taking care of two young boys.  I was stressed out from one son’s constant screaming and tantrums.  I felt guilt for placing my other son in the playpen for a lot of his day in order to keep him safe.  I felt isolated and distant from my husband as we took separate shifts to manage the boys. We were too tired for anything else. 

The thing that stayed in my mind since that moment of diagnosis was the long list of therapies and activities we were supposed to do.  I felt myself sinking into despair at the idea of providing such an intense schedule at the expense of a normal childhood for my sons, my sanity, and my marriage.

I want to be clear.  I am supportive of early intervention, research based practices, and providing all the opportunities one can for these kiddos to succeed.  Over the years we have participated in everything from speech therapy to vision therapy.  I have often felt like a “noncompliant” parent as I have chosen to look at each therapy in light of how it affects me and the rest of my family. 

The activity that has benefited our family the most is the money we have spent to hire a babysitter each week so my husband and I could go out for dinner and have a quiet evening together. This is a type of “therapy” that health providers can help families prioritize. Health providers have an opportunity to give families permission to not feel like they have to do it all. 

 My son with autism is now an integral part of our family, and our family has defined our own “normal”.  My son has a good sense of who he is and where he fits in the family.  He also has a happy mom who is still married and who totally adores him for the quirky, funny kid he is.