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.
9 thoughts on “Podcast: Parenting an older special-needs kid”
I started listening to this and stopped shortly into the interview, as I had to with the last episode. The sound quality was terrible, but I am also increasingly uncomfortable with Laura’s mode of questioning, which tends to lack empathy. While I find your work truly meaningful and important, on the podcast I feel like there has been an increased deafness towards those who have not moved through life as easily as you have. The discussion with Sarah in a previous episode on whether or not it was worth it to pump for so long is an example: it’s not a position you’ve been put in, and I felt that you were almost bullying Sarah into saying it wasn’t worth it.The way that you asked this episode’s guest about her daughter had a similar tone: anthropological and perhaps overly clinical rather than conversational. I look forward to the sound issues being resolved, but as a long-term listener and reader I would appreciate greater respect for the myriad ways in which priorities play out across life’s challenges.
I felt similarly about this recent episode – I just could not finish listening to the interview and had to turn it off. I’m a long time reader of Sarah’s blog and have listened to your podcast since the first episode, so it was a bit of a bummer. I’m unclear as to how much y’all know about your guests prior to episodes, and the degree to which questions are planned in advance, so maybe there is something to that process that makes the interviews come across as a little stilted and clinical?
Laura, your straight forward no nonsense tone and perspective is professional and refreshing. Your willingness to ask matter of fact questions, that stretch listeners to challenge their own assumptions and cultural narratives; ones so many women readily accept! Also, I am grateful for your “owning” your choices and acknowledgment that some things aren’t a priority for you. Thank you!
I find Laura blunt, but not needlessly so. I think it’s a difficult task to get people to drop the natural instinct to retroactively call our past choices good. People are prone to tell positive stories (and Laura is a big fan herself). However, they also justify their past choices as good by default, even if they would not advise others to do the same. Pushing to probe and evaluate past choices is difficult, and she is very very good at it.
I really hate to trot out the sexism card, but how many men are criticized for being too blunt in their interviews? To the contrary–those are the ones at the top of their field.
Laura, yours is one of the very few podcasts I listen to because I’m not a fan of people apologizing for every question and difference of opinion. It eats up airtime and distracts from the subject at hand (and it’s just plain annoying). I trust that if your subjects don’t like your approach, they’ll speak up for themselves.
As the guest on this episode, I wanted to clarify that I found the interview to be a positive and valuable experience. I hope the insights I shared were interesting and informative; whether you’re a fellow Special Needs mom, or a person who will no doubt come across Special Needs moms and their families.
It hadn’t occurred to me that any of the questions were clinical.
Having said that – discussing such a personal and emotional topic would have been a lot harder for me personally if I’d felt that my situation was being pitied in any way. So if there was any conscious decision from Laura and Sarah to veer towards hard/practical over soft/sympathetic, I’m glad they went the way they did.
@Katie – thanks so much for coming on the program and for sharing your perspective! My goal is generally to ask questions that will get interesting and informative answers. I thought it was a great episode, which is why I approved publishing it despite the technical problems.
Related to the opening conversation about superficial things, clothing and weight, please have Stasia Savasuk on as a guest. I really like how she talks about clothing and body self image, and she’s a parent and entrepreneur. https://www.stasiasavasuk.com/stasias-style-school/
Thank you Katie for sharing your experiences. I found it very insightful.
Laura, I love yours and SHU’s show and have been listening from the start. It has empowered me to think about my thoughts around time and energy (helping me to enjoy life & work more), and to have guests on who can give different perspectives and life experiences. I know many of the people listening, like me, are so grateful. Yes perhaps your approach is direct (but best not to waste time ‘going around’), and you are respectful, and empathetic too (there are different ways to show that, and I think you do that) and ask interesting/different questions. So thank you again!