Every Day Is Normal
Shawn heads off to work early and so often it’s just Sul, Riley and I when we get up in the morning. It seems that, ever since the beginning of this alternative life we are now living, each day is so totally different than the one before… I remember my friend (Mentor, Board Trustee, Instructor,etc., etc.) Misse used to always say, “every day is a normal day” implying that the wild days and the tame days are all the “normal.”
Some Days for Sul and I, “normal” feels like we’re really in the groove. When we do, it looks a little bit like this:
7:00 - 8:00 We eat breakfast, and while we eat we talk about the calendar and the weather because we put it on the wall right by our kitchen table. We sing our weather and calendar songs we sing at school and post small square of paper on the wall for each day, kind of like we do at school.
8:00 - 8:30 When we’re ready, we clean up, Sul feeds Riley Dog, and then wanders off to play with his toy trains or cars while I do some work around the house. We call that “Help the House” time.
8:30 -9:00 We come back together and play a bit longer and then we get dressed. Note: Getting dressed is still one of the hardest parts of our day. I feel like I’ve tried all of the tricks I can think of and it’s still a daily struggle. Ugh.
9:00 -9:30 We then try to do a little movement - we have a mini trampoline in our living room right now and we put on some music while we dance and Sul jumps. We try to match our tempo to the music and it uses a lot of energy. Sometimes this leads to some dancing around the house, and sometimes if fizzles out after one song. Each day is different :)
9:30 -10:30 When the movement time fizzles out I know Sul is ready to do some activities. We move to another room where I have some activities already set up for Sul on a shelf. We usually do 2 or 3 things - a puzzle, a matching game (as shown above), a counting activity, some painting or drawing.
10:30-11:00 When our activity time seems to no longer feel productive, we clean up and head back to the other room to have a snack and read a story with Auntie Kath.
11:00 - 12:00 After a snack and some down time, we’re ready to head outdoors to take our dog for a walk. Sul loves to ride his balance bike while I walk Riley. We cruise on the back streets here in town and this is definitely the highlight of our day. Sul loves to zoom around and Riley is a happy dog. Often times we get to see Dani, or Rob and Polly, out walking their dogs and it makes me so happy to live here in town.
12:00 - 1:00 We return indoors, and Sul has some free time while I get lunch ready. We sit at the table together to eat and clear the table when we’re done.
1:00 -1:30 We head upstairs for nap - reading books and singing songs.
1:30 - 3:00 Sul will sleep anywhere from 1 hour to 3 hours (though the 3 hours is pretty rare these days). I usually use this time to do a mad dash on all the things I’m not getting done while Sul is awake. My heart feels like it’s in my throat most of the time these days, so getting some items crossed off my list while I have the time helps me feel a little better. But some days I read, or zone out in front of the TV for a while depending on how much sleep I got or how urgent my tasks at hand feel. Again, each day is different!
3:00 - 3:30 Sul wakes up and watches a show. It was a routine we had gotten into on the weekends and now it’s our daily jam. He’s super into Daniel Tiger and I can’t say no to that. This usually allows me to finish up whatever task I was doing before Sul woke up and he can transition from sleeping to awake in a way that works for him.
3:30 - 5:00 Sometimes we pick back up on an activity we had started in the morning, but usually we just play or read books. Sul uses his toy cars, model animals, or toy trains for all kinds of imaginative play. He loves to call them by his friend’s names at school, or have “arguments” with them, or be defiant. It seems like this is his way to work out a lot of things he either thinks about or wants to do himself but for some reason doesn’t. I LOVE listening him during this time and when I play with him, it’s mostly him talking and me following along or chiming in every once in a while.
5:00 - 5:30 My mom and dad usually call around this time through facebook messenger and we chat about our day or they read to Sul. Sometimes my dad will take out the toy cars they have for Sul at their house and they’ll pretend to drive them around together. The ability to see each other is amazing. We are so glad to have that and we try to talk every day.
5:30 - 6:00 Shawn usually gets home around now and I’ll be getting ready for dinner while Sully plays. Shawn tries to play with Sul right when he gets home because they miss each other and it gives me a bit of a break.
We try to get Sul to bed by 8:00 each night. We eat dinner, take a bath, and watch StorylineOnline by the SAG AFTRA foundation. Then it’s up to bed for a couple more stories and songs.
But Some days, our “Normal” is not in the groove. We’re grouchy and irritable. We can’t seem to get on the same page, but have trouble occupying ourselves when we’re apart. These days have some tears and some yelling…and I feel terrible about it. It can be hard to re-set ourselves, but usually we manage to do that for periods though out the day. What can you do other than try to reset and do better the next time?
Overall, we fall somewhere in between Groove/No Groove and we’re doing alright. Sully seems to be learning some new academic concepts, he’s getting TONS of practical experiences through dressing, washing his face and hands, serving himself food, setting and clearing the table, taking care of our dog, etc. Our whole family tries to read to him whenever we can and Sul soaks that up like a sponge. And, which is incredibly important to note, we’re getting to spend time together. I often wished for more time to dedicate to Sullivan and here we are.
So whether we have a lovely little schedule, or we spend the day feeling frustrated with each other, EVERY DAY IS A NORMAL DAY, right Misse?
Every Day Is Normal…right?!
