A few months ago, Sarah and I featured Sarah Baldwin on Best of Both Worlds. Baldwin, a university administrator, is raising a young daughter with Down Syndrome. We had a wonderful discussion, and we got a lot of positive feedback, though several people pointed out that special needs babies and special needs older kids require very different things.
So we wanted to address the latter topic as well. This week we welcomed Katie Forrest to the podcast. Forrest is a UK-based criminal defense attorney. She writes novels (under a pen name that we are not allowed to tell you!) and has a 10-year-old daughter. Her daughter is autistic and has pathological demand avoidance, which is reasonably common with autism. Requests to do anything cause a lot of anxiety, even if the child has done the activity before and enjoyed it, and trigger a default “no” response.
As you can imagine, this makes daily life challenging. Indeed, I was fascinated by Forrest’s way of dealing with some of these challenges, which involves recognizing that a lot of things are mostly going to be fun in retrospect. Her daughter loves swimming, but getting to the pool is going to be hard. Forrest has to focus on the knowledge that afterwards, they can look at photos and all recognize that they enjoyed themselves. It’s human nature to give more thought to the “experiencing self” (what I feel like doing now) vs. the “remembering self” (what I will have been glad I’ve done). Forrest has had to consciously overrule this impulse to still give her daughter opportunities, which she definitely wants to do. For instance, after seeing Ratatouille, they’ve got plans to visit a fancy restaurant, which is actually a facility training culinary students, and that’s OK with diners who won’t necessarily sit quietly. She knows they’ll make memories.
Forrest talked about the challenges of finding a school that can meet a child’s profound special needs. She talked about her daily schedule, and how she finds time to write amid everything else. The short answer: first thing in the morning. She’ll get up at 5 a.m. and go to a coffee shop.
Our Q&A deals with another parenting challenge: sleep deprivation. Our listener and her husband fell into the habit that waking up with their baby was her responsibility while she was on maternity leave. Now that they’re both working, she feels like he’s working from the underlying assumption that his job is more important than hers (because he earns more). She has ambitions to move into leadership, and worries that her lack of energy is going to hamper her career growth.
This is definitely an important issue, so please give the episode a listen, and let us know what you think about our answers, and if you’ve ever faced this issue. We wound up having to record this on Zoom after our Zencastr software disappointed us again. Our producers did some heroic work to try to make the volume levels similar, and we’ll be switching to a new system soon (we successfully recorded two episodes yesterday on a new program). All these technical issues have been frustrating, and I appreciate everyone’s patience.