Best of Both Worlds podcast: Raising a child with special needs (plus doctor visits and sick days)

I just took the baby to his two month well-child visit yesterday. I quite like my pediatrician. She has six kids (mostly grown) and we are almost always seen promptly. The baby is doing great (11 lbs 15 oz, which is about double his lowest weight two months ago). This is a cause for celebration!

Even so, with the combo of shots, and general kid unhappiness with getting weighed/measured, etc., medical visits are definitely not one of the most fun parts of parenting. In this episode of Best of Both Worlds, Sarah and I open with a discussion of this, and how much we value providers who do their best to value patients’ time, and how Sarah tries to do this in her practice.

Then, in the body of the episode, we interview Lee Becknell, who works full time as a marketing manager and is raising a son with a rare genetic condition, and who is also on the autism spectrum. This has presented many challenges. Becknell talks frankly about them, including their uncertain future. Most of us go into parenting assuming our children will become more independent as they grow up. Becknell is not certain this will be the case. She talks about how her family makes daily life work, and the support system that makes life possible.

Finally, we end with a discussion of how to handle snow and sick days. My kids and I were just discussing that two years ago yesterday we had one of our worst snow storms in ages. I picked up my three elementary school aged kids at school and the walk across the field through the blizzard to my car was…memorable. We lost power for days. This winter, by contrast, has been mild. In any case, it’s always a good idea to think through how you’ll handle interruptions to the normal schedule. With snow days, this can be a great opportunity to team up with neighbors. With sick days, we discuss how much PTO to reserve for this (some…but hopefully not all! Sarah talks about the buffer she tries to maintain).

Please give the episode a listen, and be sure to rate/review us and share with a friend!

20 thoughts on “Best of Both Worlds podcast: Raising a child with special needs (plus doctor visits and sick days)

  1. I am a physician in private practice and while I strive to run on time, I would say I consistently run about 30 minutes late–sometimes better, sometimes worse. There are lots of reasons, but Laura is right, none of them are that am sitting around making people wait on purpose. We do double book against new people because about 30% of new patients don’t show up for their appointments. I do squeeze people into my schedule who need to be seen urgently. Follow-up patients are scheduled in 15 minute spots, but if a patient is 5 minutes late and/or complicated 10 minutes may not be adequate. Little things like patient mobility affect timing. And certain conversations cannot be rushed–in my world this is new type 1 diabetes and a new thyroid cancer diagnosis–I will be running late after those conversations. I always apologize if I am running more late than is typical. While I do try to make up time along the way, I don’t want later patients to feel I did not give them the time and attention they deserve after waiting. I see about 80 patients per week and I try to give each of them all my attention.

  2. Re: Providers being late; I have no tolerance for this; many providers have text enabled reminders that remind patients of appointments and ask that they confirm. If a provider’s office has this technology, then they should have a process implemented for texting patients when they are behind schedule.
    I will not wait more than 15 minutes for a provider, before leaving the office. I’ve found that providers respond quite effectively to this; they followed up, same day, via phone and have been on time at my rescheduled appointment.

  3. I struggle with the providers being late thing. I have been a patient at the Wilmer Eye institute at Hopkins, and I once waited 90 minutes to see a provider (luckily, I had brought my laptop and just continued working). That was not an unusual occurrence for that office, unfortunately, but I was unwilling to go elsewhere because I could just walk there from my own office and continue working while I waited. On the bright side, she did ‘no charge’ me once because I waited so long. Even though it was my insurance that benefited, I appreciated the recognition that I’d wasted a lot of time. But it makes me totally crazy to have to kill half a day on what should be a 15 minute appointment.

    On the provider side, I agree with a previous comment: it is hard to predict no-shows and even one patient being 5-10 minutes late can complicate the whole day’s schedule. And when you work in peds (as I did, for a time), it felt wrong to punish a child by not seeing them when it was more likely the parent responsible for the lateness (and unclear if those circumstances could be controlled – some families had to use public transportation with bus changes to come see us, and if they missed a connection or a bus was late or it snowed…then what?). When we didn’t double-book appointments, we sometimes ended up killing time for two hours because of no-shows – and the clinic was not in a location that made it easy to just run back to the office and do work during this time…especially knowing that if the family DID come, we’d see them as soon as they walked through the door to keep things moving.

    I don’t have a good solution to this, but am just commiserating that a) it also drives me batty when I have to wait to be seen, despite showing up on time for an appointment, and b) I know that the reasons for delay are not due to poor work ethic (most often, logistical things with no obvious solution).

    Today’s episode was great and near-and-dear to my genetics-loving heart. I’m sure you’ve also heard some feedback on this already, but we are taught in genetics to use person-first language: a child with special needs (as opposed to a special needs child). Some people are sensitive about this and others aren’t, but usually a good idea to err on the side of caution!

    1. I actually just changed the title of the podcast even before I saw this! My fault and the new title should come up in our feed for new downloads.

      1. Awesome =)
        (I realize it is never done with any ill-intent – I just have had person-first language drilled into me for so many years that I cringe whenever I see it not used…but, as I said, lots of people probably won’t even notice/care!)

    2. @KGC – we go to the eye center at Johns Hopkins too for one of our kids. But since for us it’s a 2-hour drive each way, the day is shot anyway! (Actually from what I remember we’ve been in relatively promptly, but that may be based on each provider’s different schedule and we’re pediatric).

      But yes, I very much also sympathize with the family being late — imagine taking 2 buses to get there and having late public transportation mean you miss your window and then can’t be seen after you’ve taken half a day off work to get there. Very frustrating.

  4. I am a family practice doctor and I am on time about 90% of the time. I would say I am almost never more than 10- 15 minutes late.
    If my patient shows up very late for their appointment they don’t get seen. If they show up 10-15 minutes late then they get a very quick appointment with no guarantee that they will get to go through their whole list of issues. I hate being late because I respect my patients’ time and because it makes me anxious to be late.
    We also charge for no-shows, and patients always get a text reminder the day before the appointment.

  5. I loved my Ob/gyn practice, but once I was done having kids I switched to a gyn only practice. They run MUCH more on schedule, as no child birth/pregnancy related emergencies bump my regular appointments out. I’ve saved a lot of time with this small change.

  6. I really, really hate it when providers are late. I have changed providers twice because of ridiculous wait times – one was an OB practice where everyone (NP, PA, OB) seemed to be late. The other was a rheumatologist. I would sit for 90+ minutes at times. It was so maddening!! I agree with what others have said – if they expect us to be on time, they should also try to be on time. I know there are situations that are out of their control, but they could also proactively call patients and tell them to come in later. The pediatrician office where our son goes is super duper strict. You have to check in 15 minutes before your appt or they won’t see you and they make this very clear during appt reminders and such. It can be a bit annoying because I hate sitting in waiting rooms with an active toddler, but I am sure it helps their doctors stay on schedule!

    I have so much respect for parents who have children with special needs. one of my best friends has a son with Down Syndrome. Their son has so many appts every 6-12 months on top of therapies. They both work outside the home so have made it work but I know it’s super stressful at times and requires a very understanding employer(s).

  7. Your doctors are probably behind schedule because of kids like my daughter. She has epilepsy, and our visits are often long. We had to take her in last week in for her first ever fever (which increases the likelihood and severity of her seizures), to see if there were any underlying infections that needed to be treated. The scheduling system probably allows for a 15 or 20 minute visit, and that likely would have been more than enough time for your average uncomplicated patient. Our visit took 2.5 hours, and included our pediatrician coordinating with our daughter’s neurologist and her geneticist just to find out if it was okay to give her acetaminophen.

    Even though we’re at the doctor regularly, and you think we’d prioritize doctors who are never late, what we really prioritize are doctors who will give us the time we need to make sure our daughter is getting great care. The doctors I’ve seen for myself and my daughter are thorough, yet incredibly efficient in our appointments. If they’re late for my appointment, I can only assume it’s because they’re giving other patients the time that they need to be giving them. And I’m okay with that. I would have a bigger problem with a doctor who was always on time but rushed us out the door before we had the information we needed.

    And regarding a child with special needs – I would also highly recommend therapy. There is certainly a grief that comes with having to let go of your expectations for your child, and coming to terms with how little is within your control. Having someplace where I can talk through my fears and anxieties and concerns has been invaluable. And I strongly second being involved with groups that are organized around your child’s condition. In addition to offering a wealth of information (depending on your issue), it’s helpful to not feel like you’re the only one going through this.

    1. @Alyce – great advice! Knowing you are not alone is so powerful.

      As for scheduling, this is such an interesting science (and art). In general, I think most people are OK with not scheduling for events that are less than 5% probability. But what about 25%? To me, it seems that 25% happens frequently enough that it should be scheduled for. But that’s based on the idea that long waits are bad, whereas if someone perceives that the worst possible outcome is that a provider would not be booked for a potential time slot, well, that’s a different matter.

      I think smart scheduling would allow for several breaks during the day, which could then absorb the inevitable tendency to fall behind. This is why several executives I’ve interviewed make sure to build in at least 2-3 30-minute blocks per day so when meetings run over the afternoon doesn’t fall like dominos. I know that in health care, sadly, the physician’s lunch often serves this absorption function, which is probably why people get burned out. I also know that people want to both maximize revenue (which doesn’t sound so nice) and offer people appointments when they ask for them (which sounds a lot nicer!), which always works against building slack into the system.

  8. Thankfully I do not usually have to wait to see a provider. Maybe it is because I like to make appointments early in the morning– often the 1st of the day– so then I’m not as susceptible to back ups? I’m usually up pretty early anyway (thank you children!) so it’s not a hardship.

    1. @CNM – yep, I do this as often as possible. I sometimes get to thinking well, since I work for myself I can come in whenever, and then stop myself when I realize big chunks of the day might be shot. Better to ask for something a little farther out but early in the day.

  9. Interesting about the wait times to see providers. I hadn’t realized how lucky I am to never have had to wait more than 10-15 minutes to see my OB or the pediatrician. I have had to wait about 40 minutes for an extensive ultrasound during pregnancy but that felt exceptional (and was not in my usual practice location)

  10. Great podcast and thanks to Lee for sharing. I know a few mothers of children with special needs who have stopped working because it’s so demanding in terms of appointments etc. But I bet it’s also nice to have a job as a parent of a child with special needs, especially the kind of successful career it sounds like Lee does. It seems like it could be great for your well being to keep working.

    I just presume my doctor’s appointments will run 15 to 40 minutes late. I could book first thing in the morning to try to avoid this, but I booked in the afternoon as it’s my less productive time and I can just bring work or a book with me. It’s not that big a deal as at this point I do not have frequent doctor’s appointments.

    1. This is Lee from the podcast. I didn’t really get into this on the show, but I definitely think that working full-time helps me mentally. It sort of allows me to have another identity besides “special needs parent.”

      1. Makes complete sense! I find that even as the parent of a child who is on a typical developmental trajectory, I appreciate having another identity and place to go. There’s a lot of pressure on women in general to dial back work when they become mothers, and I imagine there may be even more pressure on mothers of children with special needs not to work or to dial back. And yet, it’s probably great for well being to have that other identity, not to mention practical things like the income and insurance employment bring!

  11. I am a working mom of a special needs child. My husband stays home full time. I definitely agree that having a separate identity via work has been a life saver. When or if it is no longer feasible.for me to work, I think I will need a support group. It is a hard, hard road.

  12. This episode was especially interesting for me, as two of my three children have autism. They were diagnosed at exactly the same time, when they were 3 and 18 months. The sheer volume of appointments and therapies is mind-boggling; at one point we had NINE weekly appointments (speech therapy, occupational therapy, physical therapy, and music therapy for each child plus an extra hour of speech for one child) PLUS habilitation for about 20 hours per week. Habilitation is like rehab except it’s teaching someone how to do it for the first time since lots of kiddos with autism don’t pick up on social cues or learn from observing their neurotypical peers. There was no way to for both my husband and I to work full time and coordinate this schedule of early intervention. As a CPA, I was able to take advantage of a few opportunities to work a minimal amount per month. When my youngest went to kindergarten, I picked up another part time CPA job working remotely. This has worked really well for our family; my husband is able to travel as needed for his job while knowing that I am handling the logistics of kids. I especially empathized with Lee about the uncertainty of the future. At this point, I *think* all my kids will be independent as adults but as toddlers, there was no way to know or predict. As the kiddos have progressed, we have been able to scale back on some therapies, but we are still at the clinic two afternoons a week for OT and speech, which can make homework or any extracurricular activities a juggling act. Thank you for sharing your story Lee!!

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