I remember the first time I left my older, neurotypical (not diagnosed with autism) daughter Emma with a babysitter. I was nervous but excited to get out of the house. My wife took the babysitter around our home, showing her where to find various items and walking her through Emma’s evening bedtime routine. I jotted down our cell phone numbers on a sticky note. That was it.
Things are very different for Lily, my daughter who has autism. A simple house tour and jotted down phone number would be laughably, criminally inadequate.
So, my wife and I both decided early on that we’d need some sort of cheat sheet to give to babysitters and caregivers. Over the years, that first cheat sheet morphed into a repository of medical snapshots, answers to the repeated questions from each new specialist, and more. Eventually it expanded into a novella-sized tome and its practical use was greatly diminished.
It became necessary to parse the information into different documents, pare down descriptions, and make it more of an at-a-glance primer. At its most basic level, the “Guide to Lily” started with the idea that it should be enough information for a babysitter to view and address the majority of Lily’s most common needs and wants — but not so much information that it was impossible to find quickly amidst many pages.
Here’s what’s in it:
This is probably first and foremost. Lily verbally communicates pretty effectively with her family in general. But certain things that I take for granted — like her special names for different things (e.g. “red nono” means the first “High School Musical” movie on DVD) — wouldn’t be understood by a babysitter.
I wrote out an alphabetical list of terms, common words, and phrases to help decrease some of the frustration on both ends. Lily doesn’t always understand requests to repeat the things she says. She becomes frustrated when she isn’t understood, and will say “Please” over and over instead of repeating the misheard phrase or word. Understanding her could alleviate a lot of potential stress.
Lily does have some medical concerns. A mastocytoma (mass cell tumor) on her shoulder can grow into a welt and give her a full-body rash if it’s triggered. That can be pretty scary. Lily has suspected seizure activity.
Listing and discussing this can prepare a caregiver to more calmly and appropriately react to those sorts of situations. This is also a good place to list doctors’ numbers, parent numbers, nearby neighbors, etc.
Lily is pretty easy to get along with, but definitely struggles with transitions. She queues her life: Each next step in the queue is smoother to reach if there’s a set trigger. I always tell caregivers to set timers on their phones and give her verbal prompts for new transitions. Potty breaks, for example, go pretty smoothly in general if, five minutes before the next break, you tell her, “In five minutes we’ll go to the bathroom.” When the timer goes off, she’s typically prepared for what’s next.
There are things that make Lily anxious. While it might be important at some point for someone to know that gorillas and bathroom hand dryers really alarm and frighten her, the odds are pretty good that won’t come up.
Still, listing things that could — like thunderstorms and rain and strategies for helping Lily cope with them — can be very useful.
Lily doesn’t just “go” like other kids. She doesn’t associate that feeling with a need to go. She needs some intervention. Prompting. It’s nothing overly complicated, but it needs to be understood.
I’ve found outlining bathroom expectations — for Lily, as well as the person responsible for her — in three steps are enough to make sure that routine is consistent and stress-free.
What sorts of things does your child like to do? Lily’s different approach to toys is one of the things that contributed to her autism diagnosis. Because of that, children with autism may be a little hard to engage in what most babysitters might consider “typical” play.
When Lily was a toddler, she loved nothing more than playing with clean diapers. She’d play with almost nothing else — just diapers. That’s not exactly intuitive for a babysitter or caregiver to just pick up.
Now, apart from screen time sorts of activities, Lily does have a handful of things she enjoys doing. It’s useful to list her favorite activities for the babysitter and caregiver. Sometimes even I find myself at a loss as to how to entertain Lily. Some of what’s on your cheat sheet isn’t just for the babysitter!
Although Lily will typically tell you if she’s hungry, she won’t always. And when Lily gets hungry, she can get impatient, frustrated, moody, and defiant. It’s nice to have rough expectations not only about when Lily might be hungry, but also what’s suitable and acceptable for her to eat.
Directions to finding the food (pantry, basement, fridge, freezer), preparing the food, and whether it must be fed to Lily or not are a good starting point. Cues about when she might be getting full also help.
So are strategies for getting her to eat. In Lily’s case: turn on the TV so she’s not focused on the food, negotiate taking turns with rewarding food to get her to eat less preferred foods, negotiate breaks using a timer to return to the table, etc.
TV is a much larger subject in our house than perhaps it should have to be. But with Apple TV, Netflix, DVR content, DVDs, and iPads, it’s very easy to find programming to entertain Lily. The problem, however, is navigating to and from those things. Cable remote, TV remote, DVD remote, iPad remote … toggling between them … navigating back …
So, I took a couple pictures of our various remotes. I added notes about what buttons to push to access different devices, settings, or features so that babysitters could figure out how to navigate away from programming that was upsetting Lily and toward something she’d find more satisfying.
Lily expects things to be done a certain way. This light is on, this fan is on, this rail is up, this story is read, etc. Lots of caregivers forget the night light (more of a lamp with a very low-watt bulb, really). When/if Lily wakes in the middle of the night, she gets very scared.
The routine is calming for her. If it’s followed, she knows the expectation is for her to sleep. It’s even her expectation.
For the purposes of babysitting, it wasn’t necessary to overly complicate the cheat sheet. But things you could add if they apply to your family are:
Apart from an emergency situation, the sitter wasn’t allowed to drive Lily anywhere. This would get added back in for daily care, but for an evening at a restaurant, it wasn’t necessary to go into detail.
Lily doesn’t really have homework, as such. She has goals to work on, but she has therapists who work on them with her. Babysitters can focus on being fun.
You might have other things you want to include on your guide, or maybe some of my topics don’t apply to your situation. You might want to organize them differently. However you address it, the “Guide to My Child” doesn’t necessarily need to be comprehensive and all-encompassing. But it should be informative, concise, and easy to navigate at-a-glance.
Your guide can be more than just a handout for babysitters. Whenever Lily enters a new program, school, or therapy, I can hand it out to new staff. It gives them a little insight straight out of the gate. And as I find myself forgetting things in the hustle and bustle of the day in and day out, it can be a great reminder to me as well.