Adventures with Margot

ASD Roadmap

A Most Excellent Summer

Margot's summer routines!

Continuing as many of our daily routines as possible creates a seamless transition from the home to the road.

September 14, 2019

We all build our lives around pretty predictable daily routines, and for good reason. They help us weave tasks of daily life into our schedule, tasks that are essential to our health and well-being.  They also create a familiar and comfortable rhythm that can help to buffer us from the stress of the unexpected.

So while the uncertainty of a trip away from home creates excitement, it can also create different types of stress for Margot and for us.  It makes us less likely to stay healthy and creates a discomforting uncertainty, all this on top of the additional stress (and expense) that vacation planning requires. So whether we are on the road or have already arrived at our destination, we plan the following for Margot.  And we have learned in the process that many of these routines are just as important to the rest of the family! In the case of our adventures learning to ski, we discovered that creating a routine before and after skiing helped make the the whole experience even more successful.

So what is the magically mundane formula?

Begin with a predictable daily routine

  • We bookend the day with consistent morning and evening routines.  Margot regularly wakes up between 6 and 7 every day. We try not to rush the morning and try to build in time to chill, but make sure that we are out of door or on the road between 9 and 10am (that also gives us some time to catch up on some of our own work). In the evening, we make sure we have Margot ready for bed at 7 or 7:30, to give her a good night's sleep.
  • Ironically, Margot's tube feeding makes travel a bit easier. By ensuring consistency in her diet, it prevents the constipation or other problems that plague so many other vacations.  But this also means that we have to leave the house with all of her food prepared. So we adjusted her feeds to freeze the solids in 2" ice cubes, and dilute as needed on the spot with soy, rice, oat, or hemp milk. In this way, I can now bring up to 14 days of food either in my RV fridge or in my small portable electric freezer.
  • Most days include a trip to a store for food or for other sundries.  Sometimes we stop in the store to take a break from the house in the middle of day, when it is  too hot for outside activities.  Travel days that involve more than 3-4 hours of driving might include a 60 minute stop to pick up lunch and just stretch the legs.  We take advantage of chains that Margot is already familiar with (Walmart, TJ Maxx, and Wegmans, a regional favorite). If I want to quickly plan a travel day, I will just look for one of these stores 2-3 hours into my drive
  • Margot's videos also provide some continuity to her routine when traveling, and give us all some down time at home and on the road. Part of her morning routine involves hanging out in the kitchen with us or lounging in her bedroom with videos in the background.  We can also take a 30-60 minute break after lunch in the same way.  We replicate that wherever we are staying, and on travel days on the road. We have a TV in our travel vehicle, and Margot's favorite Disney and Pixar movies loaded onto a USB drive that we can just plug into the TV wherever we are staying.  Margot now also watches some different series on Netflix, which is also usually available on the TVs where we are staying (we have an Amazon Firestick we bring along as a back up).

Spice it up with daily exercise and adventures

  • Over the past 10 years, we have worked to explore many different possible adventures.  These include interesting places to visit or things to do.  Ideally, these get us outdoors and enjoying some exercise.   This is especially important on a roadtrip, where long drives in the van can drive us all crazy!! So I lay out different possible options each day whenever I am planning a trip. If we can fit 1 or even 2 trusted adventures into a day, we are all set. At Lewes, we learned to fit in 4 - beach in the early morning and again in the late afternoon, with a bike ride and a visit to a waterpark in between. By the end of the day, Margot is dragging us away to sleep!
  • The challenge with fitting adventures in a daily routine is the weather.  In the summer, we know that afternoons can be too sunny and/or hot, and so we have to plan afternoon adventures that are either indoors, in the shade, or in the water.  We keep Margot covered up or slathered with sunscreen. A rainy day requires a different plan.  There is not much we can do outdoors in the rain, except maybe bike (Margot's Wike comes with a rain cover).  In a worse case scenario, we will cancel a local camping trip if there there is a lot of rain in the forecast.

Get the right accommodations

  • We always make sure that Margot has her own bedroom. While this has made finding accommodations more complicated, it is essential for her (and for us) to get a good night's sleep. So AirBnB was a real game-changer for us.  We never felt comfortable with giving Margot her own hotel room, and the traditional holiday rental homes we tried for a while locked us in for a week. We are always able to find an AirBnB, unless we are looking for a 3+ bedroom  overnight stay in specific location on a roadtrip.
  • The other game changer was our RV.  We love our first travel van (we are already up to 70,000 miles), but the RV gives us A LOT more options.  Sometimes we use the RV in place of two bedrooms (for Margot, and either myself or Margot's nanny): we pull the RV up to a 1-2 bedroom AirBnB for the rest of us, and just plug in for our heat or AC.  Sometimes we will just find a campground at a state park for one night if we are traveling through.  But our RV also makes a state park a possible destination for a weekend or more  (Reserveamerica is the first place I look).  The RV gives us a fridge for Margot's meals, a food preparation/clean-up area, a separate toilet, separate sleeping area, and a TV with her favorite videos. If Margot's nanny joins us, I will pitch a tent or myself and leave them with the A/C and privacy.  The bonus is that the campgrounds themselves have activities; many are adjacent to trails and beaches, and sometimes Margot  is just happy to lounge around on her chair or take a walk around the campsite.
  • Of course, this is not only a trip for Margot, but this is meant to be a vacation for the whole family.  So we take care to choose destinations that work for our other kids.  Our routine also leaves some time for us at the beginning and the end of the day for work and emails.  The result is that we are less rushed to complete tasks before we hit the road on a trip, and less likely to be swamped when we come back.
  • And we choose adventures that we enjoy!  My go-to daily adventure is a bike ride with Margot: 60 to 90 minutes with 120 pounds is tow is a pretty good workout. With the travel to and from the bike path, this gives everyone else helping with Margot's care a 1 to 2 hour break.
  • None of this would work without Margot's nanny, Dinora, who has been with us Margot's entire life.  So we also check in with Dinora to make sure that these adventures and destinations work with her.  And my wife and I tag team with Dinora to make sure that Dinora has time off too.

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