I often get asked, when people haven’t seen Arizona for awhile or they’ve just learned about her special needs journey, “So, how is she doing now?” I always answer that she is amazing and doing well, because that’s mostly how I feel. But what does a typical day look like you ask? Are there challenges and struggles? Are things “normalized”?
I thought it would be fun, from time to time, to describe a day in the life at the present moment … I wrote this about an experience Arizona and I had about two months ago. It’s a little long, but I wanted to capture each detail of the experience, so you can get a taste of current life with Arizona.
A Day in the Life, Fall 2016
Once a week, I go on a dinner date with Arizona. Because of her dietary restrictions and aversions, there are only a handful of restaurants we visit in the area. Typically, it’s Kay ‘n Dave’s where she orders rice, black beans without cheese and a side of corn tortillas. Recently though, Arizona has learned to love sashimi and sushi rolls, so we have added Japanese restaurants to the mix as well.
Two months ago, on a gorgeous September evening after homework was finished for the day, Arizona and I headed out to Sake House, our newest sushi obsession. Arizona wanted to look “special” for the occasion and put together an outfit of : tights, frilly skirt, tank top, sweater, mittens, scarf, cross body bag, a fan and some eye shadow and lip gloss as the finishing touch. Nothing matched, of course, but Arizona just knew she was epitomizing HIGH GLAMOUR and needed everything to be absolutely perfect before we left the house.
We parked a block away from the restaurant and started walking down the street; Arizona oblivious to the other pedestrians on the sidewalk. She skipped along, colliding with and getting in the way of adults, children, dogs on leashes and everything else in her path. She was making up a story in her head about something (and narrating out loud) and was completely tuned out to everything else around her. This isn’t uncommon, so I gently guided Arizona toward my body, instructing her to “hold on to my elbow.” This usually helps her stay out of people’s way, without me having to constantly remind her to “take a look” at her surroundings.
On our way, we passed a French restaurant where a large hot flame was coming out of an outdoor fireplace. I knew this would be cause for concern and worry; Arizona stopping as soon as she saw the fire. “Mommy, it’s real!” she exclaimed loudly, “OH NOOOOOO! I DO NOT WANT TO GET BURNED!!” In these moments, I try to be as neutral as possible. I started narrating to her what was going on, “Wow, it’s a real fire. And it was probably a surprise to see it. You’re really worried about the fire.” “YES, IT’S GOING TO BURN MY HEAD OFF!” shrieked Arizona, her voice creeping higher in decibel. People passing on the sidewalk and sitting in the patio dining area started noticing my child’s outburst. It is my huge lesson to let Arizona process how she needs to process. Rushing her through it or trying to brush her feelings under the rug ALWAYS backfire. I wasn’t in the mood to push my 10 year old, fancily dressed daughter, toward a full blown meltdown. She perseverated on the fire for 5 more minutes; talking about her worries and fears as I repeated them back to her, calmly. We talked about how it probably wouldn’t be a safe thing to do for a restaurant to put their patrons in danger; and that the fire was simply for heat and décor. Arizona had to come up with all of these conclusions herself, as I guided her toward them. Eventually, she brought herself full circle, to the conclusion that, “Well Mommy, it must be safe, right? I mean, why would they want anyone to get hurt or die? Maybe we can make a plan to walk by the fire very fast.” She came up with this plan and that’s why we escaped an episode on the sidewalk. We hadn’t even made it to the restaurant and we had already had three episodes where I needed to talk Arizona through to the next step (getting dressed and picking out he perfect outfit, running into everyone on the sidewalk and getting past the fire).
Finally, Sake House was coming into view and we walked on to the patio. Arizona decided she wanted to sit inside and often wants to sit in the same place every time she frequents a place, so she bee-lined to a corner table we had been seated on our first visit to the restaurant. All of a sudden, she froze. The music system was blasting one of her favorite songs by One Direction “What Makes You Beautiful.” It’s hard to explain what happened next, other than she just got STUCK. She tilted her head to the side, poked her finger near her eye (this helps her process what’s going on better) and stood there processing what was happening. I could almost see the thoughts coming out of my daughter’s head … “Wait, I wasn’t expecting to hear this song here.” “I have a crush on the One Direction boys and I am feeling nervous about hearing them sing.” “I normally hear One Direction when I play it on my iPod touch or watch the vide on YouTube.” “I’m surprised that I am hearing this song and can’t think of anything other than the fact that I am standing here listening to this song.” “I am not aware of the bustling servers walking to / from where I’m standing, with hot miso soup and trays of sushi.” “I can’t even remember what I was doing before I heard this song and froze.” “I have no idea what to do next until this song is over.”
And there she stood, in the middle of the restaurant, until the song was over. She couldn’t hear what I was saying; couldn’t process anything else in the moment other than she was thrown off. She felt nervous, but excited at the same time. She felt anxiety for not being prepared to hear the song when she was expecting to.
The song ended and Arizona needed to process everything out loud. I reminded her that we were standing in the middle of the restaurant and still needed to find a table. Thrown off by the musical selection of the evening, Arizona spent the next 10 minutes going from one table to the next, to the next to the next. She wanted to go outside but then it was too close to the heating lamp. We went back inside and she was upset about an empty table that we were lead to being too close to the restroom. We headed back outside but then she saw a bee near one of the trees. She screamed and rushed back inside; nearly sideswiping a waiter carrying a tray of Sake. “YUM.” I thought.
Eventually, we found our way to a table where Arizona felt comfortable. This entire time, I was in Arizona’s ear guiding her through the process of making it through the decision of finding that perfect table. I was growing increasingly antsy and impatient, but remained calm outwardly so that Arizona could get through her moment. Everyone in the restaurant was looking at us quizzically. I smiled like I always do and didn’t apologize.
45 minutes after we left our house, which was 7 minutes away from Sake House, we finally sat down to eat. It was Happy Hour, hallelujah. I ordered a large Sapporo, immediately.
The night was far from over and I was drained. I flagged the waitress down and ordered our food quickly. I breathed deeply, said a silent prayer that we would make it through the dinner without any more challenges and pulled out a notebook and pen for Arizona and I to play our restaurant game.
Even though she’s 10 now, Arizona has never been able to sit still for long periods of time so I have to come up with ways to distract her; especially when she is waiting for her food. She is the type of girl who expects instant gratification and if she’s thinking about what she wants (in this case an order of salmon sashimi, salmon + avocado cut roll and a big bowl of steamed white rice), she has a hard time NOT asking where her food is every 2 minutes until it comes.
So, I came up with the restaurant game and that seems to help. We have a notebook that we share specifically for outings. I write a word (a noun), she reads it and then draws a picture of whatever the word is. Then it’s her turn. We do this a few times back and forth, me drawing out each picture by talking about it and making up funny stories. The distraction helps and our food arrives.
Arizona is learning to use chopsticks but has a hard time with fine motor skills in general, so she needs to have a “chopstick trainer” attachment that the restaurant provides. The problem tonight is that the chopstick helper is slippery and hard to grip. Arizona is frustrated beyond measure and shrieks out as the feeling arises, “MAMA!!!!!!!! I can’t DO IT!!!!!!” I sip on my Sapporo and gather the strength and fortitude to respond to the squeals. “Sure you can, Peanut,” I say, “You’ve got it.”
The chopstick struggle continues. It’s a loud struggle and I ignore it. Eventually, Arizona throws the chopsticks to the side and picks up the sushi with her hands. She stuffs everything into her mouth as rice spills out on the plate, table, chair and floor. I don’t comment or look up from my own meal. I’ve learned which battles to fight in this life; and food stuff isn’t worth a second of my time.
So, this is my reality some days. Two hours of our life is a very FULL footprint. We got through 5 roller coasters in this small period of time. I do everything I can to stay calm and engaged in the moment. The wait staff is surely whispering amongst themselves at this point; “What’s going on with this child? Why is she having so many BIG FEELINGS about everything? Why can’t she calm down? WHY doesn’t this mother know how to parent her child?”