Maddy is getting older. Our challenges are changing – the ground always feels as though it’s shifting underneath us. No matter how much we will it to stop moving, it just keeps shifting, ever so slightly. It shifts so slowly, that the changes are almost imperceptible… until one day… they’re not. One day you wake up and look at your partner and think, “Wow, how could we have been missing this?”
We had one of those moments a couple of weeks ago. Eric and I were exchanging our current thoughts on Maddy and we suddenly realized that we’d each come to the exact same conclusion independently. Let me back up a bit to give you some context.
We do split shifts in our house. Eric is on morning Maddy shift. I’m on evening Maddy shift. Night Maddy shift rotates. This has been working for us. It’s too much to be a part of all of the shifts. It doesn’t give us enough time to recharge our batteries, and we get short with Maddy and with each other. Split shift makes for a happier home. Split shift also means that I have no idea what morning looks like, and Eric has no idea what evening looks like.
We independently trouble shoot our own shift. We sometimes throw suggestions out to one another, but we know that only the person on-shift really knows what is working and what is not. For months now we’ve been trying to create a routine for each of our shifts, knowing that the structure a routine provides is good for all kids, but particularly good for kids who have the challenges Maddy does. We tried… and tried… and tried. We failed… and failed… and failed. Or, we thought we were.
What we didn’t realize, is that in all of that failing, we were actually succeeding. We just didn’t know it yet. Our failing was that our routine looked something like this:
Home from daycare
Our ultimate success was discovering that the kind of routine Maddy craves actually looks something like this:
On the way home from daycare I repeat for 10 minutes: “We’re going home for juice, pretzels, and TV. We’re going home for juice, pretzels, and TV. We’re going home for juice, pretzels, and TV.” If I stop saying those words the crying will start. If I start saying them again, usually the crying will stop.
Once inside the house, without putting Maddy down, I immediately get a small juice box with a straw and place it on the same spot of the same coffee table. I place Maddy in front of the juice box. I do not touch the juice box. I repeat, I do not touch the juice box. When Maddy squeezes juice all over herself, I tell her, “It’s okay, just juice” while I clean it up. I repeat those words until I’m done cleaning it up. She will stand while she drinks her juice. While she’s drinking her juice, I let Loki out.
When she is ready, she will ask for the TV to be on. It has to be one of four things on the TV. Once the TV is on, she will ask for the fire to be on. I turn the fire on.
Next we sit on the same spot of the same couch with some pretzels. Always pretzels. I press ‘pause’ and ‘play’ on the TV at Maddy’s command – likely a few dozen times or more. The fire will also be turned on and off at her command. Maddy will not touch her pretzels for about a half hour – but I cannot touch them. During this time Loki must be on his bed. If he leaves his bed, chaos will ensue.
After 45 minutes, Maddy will want to sit on my lap. She sits the same way every time. I must not move. I must not touch her. Maddy will ask for her clothes to come off. The clothes must be removed in the order she requests (socks are always first).
When Maddy is ready, she will request a book – the same book – everyday. We read ‘Pete the Cat‘ ten times in a row.
Once Maddy is done reading, I start to ask her questions:
“Do you want squeezes?”
“Do you want mommy to do your joints?”
“Do you want rocking?”
“Do you want rubbing?”
“Do you want ka-boom?”
If her routine has been followed without any slight changes, she will be regulated enough to pick a sensory activity.
Now, both Eric and I managed to figure this out – her morning routine, though completely different from her evening routine, is just as detailed. We have found something that helps a bit with her crying. But, as any parent knows, life is just not that predictable.
Sometimes, it takes me a few minutes to find the remote control, or the book is missing, or we only have apple juice and Maddy wanted orange juice. Sometimes Eric lies in a different position on the couch because his back hurts, or Loki needs to be let out earlier than normal. Sometimes someone is blocking the driveway and we need to do another tour around the block. Sometimes we run out of pretzels. Sometimes it’s too warm to have the fire on. Sometimes Loki moves. Sometimes the phone rings. Sometimes someone is at the door. Sometimes life happens. When life happens, crying starts. Uncontrollable, inconsolable crying.
How did we miss Maddy’s intense need for such detailed routine? How did we miss it for so long? It’s all in the shifting of the ground. It just shifts, ever so slightly, until it cracks. But, the crack is obvious. The crack is so obvious, it just glares at us, and we wonder how we couldn’t see the hairline fracture that existed before.
Now we see the crack, so we need to learn how to adapt to the crack. How do we provide the structure Maddy needs in order to feel safe in the world, without encouraging this rigidity? We have no idea, but we’re damn well going to learn.