We finally took a trip we'd been planning for almost four years. In late 2019, we decided to visit Barcelona and Lisbon for our 10th anniversary and booked flights for May 2020. You can probably guess why that didn't work out.
We were leaving the girls in the care of others for a longer time than ever before, so we wrote some care tips to leave with our parents.
I really enjoyed writing Avery's doc, and I decided I'd do it every few months as a way of capturing text-based snapshots of her growing up. And maybe reviewing these at a later date will help us learn better ways to parent her in the future.
Since I am putting this on the Internet, a tiny bit of context feels necessary: Avery has special needs resulting from a gene deletion, which presents as significant developmental delays affecting motor function, speech, cognitive, play, and social skills. Her "talker" is an iPad with AAC software, which is one of her primary forms of communication in addition to the few words she knows how to say or sign.</context>
Here's the doc I wrote for our parents:
- School routines got her into a morning rhythm. She may fight you on going to the bathroom first thing but just try it
- Make sure she has access to her talker while eating breakfast
- Breakfast: she’s going to want a yogurt, then a muffin, then milk, then a waffle (probably). She will indicate / remind you of this order using her talker or just kind of whining at you as she runs out of the thing she’s currently consuming.
We have moved past super specific episodes of Spiderman. You’re welcome
We have programmed all specific episodes of Daniel Tiger into her talker. She probably doesn’t want to watch DT but if she does, the episodes are there and labeled by season dash episode number. When she taps a button it says the name of the episode but you can look at the button and see those season/episode numbers. DT is on Amazon Prime.
Main shows are all Disney+ right now. Use my profile, not hers:
- Encanto - (sometimes she wants the sing-along version even though it’s the same damn thing, it’s underneath the main version that’s in her watch list as a “related shows” item). Sometimes she will act like she’s twirling which means she wants to wear a dress, so just tell her to go find one in her closet. She’ll bring you one.
- Frozen Fever - a terrible short that is like 7 minutes long that she and C will watch a dozen times in a row. Try to establish a maximum number of “agains” at the onset, we usually suggest 2 or 3 times.
- Lion King - this one is big right now. We’ve gotten her to watch most of it without skipping but she will ask to skip the part where Mufasa dies by making the sound she makes for pig, signaling that you are to skip to the part where Simba meets Timon and Pumba. From there she’ll watch until it’s time for the climactic final showdown between Simba and Scar, at which point she probably wants to be done with the show and move on to another one.
- Coco - still sort of likes it but sometimes when she says Coco she means Encanto because well the titles are just too similar. If you start it she’ll be most excited about seeing Pepita.
- Moana - will watch, but C is really going to be the one trying to get y’all to choose it. If you start it, get Avery excited about how Te Kā is actually a volcano or how Pua is a pig.
- Frozen - will watch, but C is probably the one choosing. Try to get her excited about how Kristoff and Sven exist. C will only care that Olaf exists.
Hail Mary Shows - these are worth suggesting if she’s just spun out and can’t figure out how to communicate.
- Elephants documentary on Disney+
- Lava - a Pixar short on Disney+
- Into the Spiderverse - our Apple TV, go to the Apple TV app and scroll to “Purchases”
- Paw Patrol Movie - our Apple TV, go to the Apple TV app and scroll to “Purchases”
- Toy Story - any of them, worth a shot, on Disney+
There is a giant plastic bin of rice in the closet next to the dining room table. During C’s nap she may want to play with it. It is not advisable to get this out while C is awake as she is wont to throw handfuls of rice and it is a disaster. Avery will sometimes sign that she wants to do this by doing a peekabo kind of sign, meaning that she wants to hide little animal figures that are in their toy bin in the rice. This activity easily keeps her entertained for hours so use it whenever you need it.
Swings/slide - She has been very particular about her swingset activities lately and it’s hard to navigate. She will either want you to push her on the swing, or pull her legs and let her go. Best of luck, it’s honestly all annoying at the moment.
Upstairs - a great place of much joy and silliness. Go up there whenever, shut the child gate to help keep C from trying to launch herself down the stairs.
Stacking blocks - if she gets out any blocks, yours or the ones we have here, her goal is to make the tallest tower in the world. I find that a strong base of 4x4 is a good way to get her started so she can stack without help. C will try to destroy everything she builds, which understandably makes her very angry. Find something else for C to do when blocks are being stacked.
At school she’s fairly independent. Our house, your house, any house is not school, so more help is apparently needed.
Pooping - I do multitudinous slapstick routines to get this child to giggle, relax, and eventually have a bowel movement. Please don’t feel the need to do anything like that but also you will probably have to do something like that.
My go-tos are running face first into walls and acting like I’ve run into the washing machine and falling into the bathtub or sliding across the ground on my back while C tackles me. Writing this out is insane. Just try your best. She’ll poop eventually.
Amanda can usually accomplish the same by being silly with sounds and words and less physical danger.
If there’s something Avery really wants to do like swim, we tell her that first she needs to poop and that sometimes serves as sufficient motivation.
- Ice cream - Amanda says this is only something that A requests when I’m around so it may not matter. Every night I give her a couple scoops of her terrible Oatly non-dairy ice cream. When she’s almost done she tips the bowl and tries to get out the very last dregs so I help and call it the “very last bite” and I’m sorry I made it a thing.
- Volcano book: there is a fast version and a slow version. She signs this by way of waving both fists like she’s running for “fast” and looking like she’s directing traffic or princess waving for “slow”. The slow version is just reading the book, acknowledging whatever details you like but she certainly doesn’t have the attention span for you to read every word on the page so just describe the pictures with plenty of opportunities for her to say “boom”. Fast version is literally a couple words and/or sound effects per spread. Example of the page towards the end there is a spread where lava is dripping into water and there are pictures of what lava-heated water can do. I say “drip drip lava makes water hot so you can cook Eggs Monkeys and People” and she thinks that’s hilarious. Ymmv.
- I usually sing the Barney theme song but sing whatever you like (Beatles, Bruno Mars, T Swift, whatever comes to mind). In case you need a refresher on Barney it’s
I love you
You love me
We’re a happy family
With a great big hug
And a kiss from me to you
Won’t you say you love me too
- After Barney singing I tell her what day of the week tomorrow is and note any special plans (“tomorrow is speech with mrs anna!”) and then tell her I’ll see her in the morning when her light turns green. In the absence of lights turning green this is probably still a relevant statement as it seems to be an acceptable time to her, whatever it may mean.