BOBW Featuring Alyce!
Those of you who have been reading for a significant chunk of time may feel like you know some of the commenters. I definitely do! Alyce has shared her wise insights over the years and I was thrilled when she agreed to be a guest on BOBW!
Alyce is an attorney with a large amount of professional responsibility – she manages a team of nine attorneys that provide legal advice to both 30+ permanently authorized federal programs and a large number of of temporary programs, such as pandemic relief programs. She is also married to an attorney and has a gorgeous child named Simone with a rare form of epilepsy called Dravet Syndrome.
She shared a lot of actionable and practical advice in the episode, as she has navigated so much over the past few years. She wanted to add the following:
One very important qualifier – when you asked about support, I totally just focused on paid support, which totally belies the unpaid support we’ve received from my in-laws, and my mother in law in particular. In addition to taking care of her when we go out of town, they come and watch Simone every weekend, giving us a much needed breaks. Since quitting her teaching job after the end of the 2021 school year, my mother in law has almost always been our backup care when daycare is closed. And, as I mentioned, she takes Simone to her private therapy appointments three times a week.
The other very important support we’ve had has been the therapists through the county provided Infants and Toddlers program, which we first heard about from our pediatrician. It’s a federally mandated early intervention program that’s available across the country. It’s a free resource run through the public school system if your kid qualifies – and a ton of issues will qualify. We’ve had a team of three therapists (in addition to her private therapists) who have worked with us and Simone 2-4x/month since she was about 7 or 8 months old. They have been amazing for troubleshooting issues that have come up over the last three years – sleep issues, sensory issues, behavioral issues, literally everything. They’re basically been deeply qualified parenting coaches who know a tremendous amount about supporting kids in general, and also supporting kids with disabilities and special needs, and they share their knowledge freely. They helped us develop a plan of attack for every issue, or every transition, and because they see her regularly, they able to see very clearly where our daughter is in terms of her growth and development, and tell us what was out there that could help her – like orthotics, shoes that fit over orthotics, child sized strollers, walkers, etc – so that we knew what to request from our insurance company. In working with them, it’s clear that, although we feel like Simone’s issues are totally unusual, they’re actually not novel. I’m not reinventing the wheel here, and I don’t need to become the expert to get Simone the support she needs. I just have to find the experts. It has saved us so much time and mental energy.
I just wanted to be sure I clarified this, because I don’t want to leave people with the impression that I’ve done as much as I have with just three hours of support from a college babysitter a week and a housecleaner every two weeks. There’s definitely a reason why I would tell people to seriously consider significant life changes like switching jobs, switching bosses, switching insurance providers, moving closer to support networks, etc if they find themselves in a situation like we are with a kid with significant lifelong disabilities – especially if they want to continue to work (as I do, but also as I need to, since I’m the primary breadwinner in my family).Alyce
Anyway, I just wanted to feature the above comments + interview here as I know many of you might not be regular BOBW listeners but interested in hearing Alyce’s voice and thoughts. Alyce, thank you again for a such a great conversation!
The Deep Life
I was listening to Cal Newport (as one does) and lately he has done a lot of discussion of The Deep Life, which I find an interesting concept. I will definitely be reading the book he is writing on the topic.
He provides a lot of Deep Life examples, and they are typically writers who live in cabins or scientists winning prestigious awards, but also finding time to cultivate an enormous bonsai garden (or something to that effect). In this earlier post exploring the idea, he introduces 4 elements of The Deep Life, shown below:
- community (family, friends, etc.),
- craft (work and quality leisure),
- constitution (health), and
- contemplation (matters of the soul).
You know what? I feel confident that I am living the deep life, right here right now. I am not winning awards. I am not solving theorems. But I am living intentionally and enjoying my time here on this planet and generally putting my heart into my endeavors.
My “community” bucket includes my family and friends, and also includes my patients and colleagues and trainees and blog/podcast friends and more peripheral relationships.
My “craft” bucket is this my clinical + other work, plus blog and my podcasts, and to some extent some of the creative ways I try to make planning fun + useful.
My “constitution” bucket is my workouts (strength, running) and general desire to care for my body well so I can hopefully life a long and active life.
My “contemplation” bucket is addressed by my reading habits, meditation, and probably ALSO this blog to some extent (double duty!).
I think sometimes when I’m listening I am unsure if my kind of life is what he is referring to, but from my standpoint I think I’m checking the boxes. Maybe I can be his first ‘regular person’ guest 🙂
(PS: in reading the above what appears to be missing is some reference to deep connections with others, unless that is included in what he means by ‘community’. Because that strikes me as a very important element of living deeply!)
((PPS – added after reflecting on my run – the above is not to imply that I am special in any way for having something to put in these boxes. I am sure many if not most of you reading this could say the same!))
(((PPPS – upon hearing the rest of his most recent ep #204, there is more to his current definition, some of which I am not sure I love – particularly the part about doing something radical being a requirement. If we are ALL off doing radical things . . . who is left to do the regular things? Just an initial thought. Need to reflect more!)))