Our Summer

This summer has been one of change and growth. How appropriate during a new season, right? As I get older and the seasons on the East Coast dwindle to two–a long, cold winter with little to no snow and a short summer–I cling to those precious sunny, hot days where I can walk out in a t-shirt and shorts, carefree and happy, drinking in the sun rays while wearing my sunscreen, of course. Adulting is fun, isn’t it? Summer has become my favorite season because it only lasts a couple of months, so I miss it more. I also find myself drawn to the ocean. I don’t know how to swim, but now I see the beauty and power of the water. My childhood friend and I went to the beach for the weekend at the end of August, and I found such peace as the waves crashed over me. Even though summer can’t last forever, my family and I made the most of it, embracing the weekends and taking a week off from work in mid-July. Sebastian attends an ABA therapy clinic 35 hours a week, Monday through Thursday. (ABA is the abbreviation for Applied Behavior Analysis.) His school is open year-round, so he doesn’t get a summer break. It was nice to spend time together and take Sebastian to some fun places. Albert and I took a day for ourselves and sent Sebastian to school so we could continue rewatching Game of Thrones. We wanted to have two days to do whatever we wanted without parenting duties, but Sebastian’s school was short-staffed on Friday, and we had to rearrange our plans. That’s parenting for you.

Before our mini-vacation, we took Sebastian to a sensory-friendly screening of Spider-Man: Across the Spider-Verse at a theater thirty minutes away, out of the city and in the Amish countryside. The place looked newer and very clean; we were really impressed by it. I was eager to experience the sensory-friendly accommodations because we took him to the movies for the first time to see The Super Mario Bros. Movie, and he wasn’t interested in it at all. He’d never seen the Mario Brothers before, so he wasn’t familiar with the characters. Sebastian’s more into monsters, animals, and anything with teeth. The only humans he likes in movies are Moana, Toy Story, and Spider-Man, so I shouldn’t have been surprised when he wanted nothing to do with the movie and kept getting up from his seat. We fed him his favorite, Oreos, but they quickly ran out. He immediately wanted his dad’s phone to watch his movies, so we just relented and gave it to him. We were able to watch the movie after that. I thought that where they screened Spider-Man would be set up differently, but it was a regular theater where they dimmed the lights and lowered the volume. Lights don’t really bother Sebastian (although he does like turning off the lights from time to time; I can’t tell if that’s sensory or if he’s just being annoying), and while he does cover his ears a lot, it’s not for loud sounds–at least not always. The smoke alarm could go off, and Sebastian will continue to run happily, clutching his tablet as he views his favorite movie.

I thought there would be more open space to run while he watched the movie. Sebastian’s stimming (repetitive or unusual body movement or noises) is on display when he’s flapping his hands in excitement, constantly rewinding his favorite parts on his tablet, jumping up and down, and running back and forth. If he’s watching Tarzan, watch out; he’ll even do the little Tarzan yell. Our seats were in the last row of the theater, and thankfully, we had it all to ourselves so he could run back and forth if he wanted—or rather, how I wanted. From the start, it was hard to get him to sit down, which is a problem at home, too, but he’s spoiled, and we let him be the jungle boy he is. It would have been perfect if he ran freely while the movie played, but he wasn’t interested in watching it. He preferred climbing over the railing and trying to go down the steps. I kept having to grab him and steer him to his chair. I was so sure he would be into the movie because he really loves the first one, Spider-Man: Into the Spider-Verse. One of his favorite scenes that makes him crack up is when Miles Morales comes into his superpowers and runs into pigeons on the side of the building. He also loves music and smiles when we first meet Miles, bopping along to “Sunflower.” But rather than watch his favorite character in a new adventure, he pulled at Albert’s pocket where he knew his phone was. I was disappointed he preferred to watch movies on his dad’s phone than watch Spider-Man with us. 

The Oreos finished at some point, and we just couldn’t get him to pay attention to the movie. Sometimes, he would look up, but I don’t remember for how long. Not long enough. We decided again to give in and hand him the phone so he wouldn’t be so disruptive, but Albert couldn’t get the Wi-Fi to work—the only downside to being in the country. We decided to leave halfway through because not only was Sebastian not into the movie, but we were also missing out on the action. I was a little let down that there weren’t more kids there. The sensory-friendly screening was in a smaller theater, so only two or three other families were present: a young adult wearing black headphones sat between his parents, and a small boy, maybe Sebastian’s age, sat perfectly eating a bucket of popcorn. Sebastian seemed to be the only wild one. After that, we learned Sebastian wasn’t ready for the theater experience yet, and that’s okay. I learned not to put any expectations on how things should be so I can go with the flow better. 

Growing up, my parents took my sisters and me to Dorney Park almost every summer, and we took Sebastian this summer as well. We’d taken him before, and it was just fun to create new memories with him in places that were the backdrops of my childhood. What was new this year is that he’s five now, more aware, and stubborn about what he wants to do. The morning of our trip was a little rough. Transitioning to sandals after our prolonged cold weather is hard for him, so we don’t even try to put him in flip-flops once the weather gets warmer. For Dorney, we needed him to wear these sandals that doubled as water shoes so he could go to the water attractions, his favorite. Showing him the sandals on our feet, we tried to coax him into his, trying to get him to understand that you couldn’t wear sneakers where we were going. But he pulled his feet away and kicked, crying and unwilling to let us put them on. In the end, it took us thirty minutes to finally get him to let Albert strap his shoes on. Suffice it to say that we didn’t try forcing him to wear sandals again for the rest of the summer. 

In addition to Dorney Park, we took Sebastian to Hershey Park, Sesame Place, and the Philadelphia Zoo. When we’re out with him, we can’t let go of his hand because he’s very likely to run wherever he wants to go without looking back or waiting for us to follow. It can be scary, so we hold on tight. At the zoo, we really have to hold his hand because he loves animals so much that his wish is to run into the cages with them. It can be challenging to veer him away from things he can’t do. There was a moment at Sesame Place when he wanted to go under a rope to get in a pool of water, not understanding that there was a giant slide three feet away with big kids falling fast. Albert had to run after him to catch him before he disappeared behind the thick rope. He also sometimes likes going on the same ride over and over without understanding that he has to wait in line again. He loves riding the carousel, and we often have to give him our phone to help him wait. He did a great job at Sesame Place watching the horses go around the merry-go-round and didn’t need the phone to wait his turn. That was a big win. We had a lot of fun doing anything with water because Sebastian’s a guppy. We keep his tablet charged and stowed away in the car so that when we stop to eat on our way home, he can have it and sit with us in the booth; he’ll just squirm a little. Appointments can be tough for this reason because he doesn’t like to sit, especially to get examined. At his dentist appointment, I had to help the assistant hold him down so the dentist could look in his mouth. That day was hard because Sebastian is routine-oriented, and I have the patience the size of a teaspoon. Changing his schedule turns his world upside down. I had made his dentist appointment at nine in the morning, so I took him there first and then dropped him off at school, but he didn’t want to go in. I decided after that to schedule appointments in the afternoons or keep him home afterward. At the ENT, I struggled to keep him on my lap, holding his arms down so the specialist could look at his tonsils. He needed to see the ENT because, apparently, snoring isn’t a thing for kids or breathing heavily; we had just accepted that he was a mouth breather. The ENT saw that Sebastian’s tonsils were huge and needed to be taken out. He’ll have surgery in September, and I’m nervous about it. I’m praying the silver lining is that he'll finally sleep in on the weekends. 

This summer, Sebastian got his own communication device, an iPad. In January, we went the augmentative and alternative communication (AAC) route and had a loaner device. He worked with his speech therapist and behavioral technicians at his school and is doing really well with it. I wasn’t surprised he picked it up quickly because of how good he is at navigating his tablet to watch his movies and shows. He has Disney books of his favorite movies and will flip through the pages, often lingering on the photos. It’s funny to see him watch one of his movies like The Jungle Book (sometimes switching between the animated version and the live-action) and then seek the book. He has folders on his iPad separated into categories he’s learned to use to request items. He’s great at asking for different foods, drink, home, and bathroom. He started potty training at school, and once he had more consecutive successes there, we carried it over at home. At first, he wouldn’t do it for us. Maybe he thought he only had to use the toilet at school and could do whatever he wanted at home. Wonder where he got that idea from. The first time he had an accident, he led me to the closet to get his wipes to clean up his puddle. Smart kid. We rarely get accidents anymore. He knows when he needs to go and will lead us to the bathroom or walks in on his own, waiting for one of us to lower his pants. Once he’s using his iPad consistently to let us know he needs the bathroom, we’ll feel better about taking him out of the house in undies. Still, I know potty training is a huge achievement, especially when you have special needs so I couldn’t be happier with his success. We have to prepare for nighttime training, but first comes taking down his baby gate. Yes, we still have a baby gate in our five-year-old’s bedroom. He’s up super early, normally by 6:30 a.m., so we don’t know if, without the gate, he would come straight to our room or walk straight out of the house. No, I don’t really think he would do that. The most he would do is skip down the stairs, grab his tablet, and lounge on the couch happily imagining that he made his parents disappear like Kevin McCallister in Home Alone.

This summer was definitely one of change for me. Albert and I had decided we didn’t want to have any more kids pretty much after having one baby. With one kid, we get what all the fuss is about: parenting is hard and fun all at the same time. No need to repeat. He got a vasectomy in January, and I went off birth control in March. The hormonal changes of getting off the pill is affecting my skin, and I’m dealing with breakouts again. Having bumpy skin triggers my mental health, so it couldn’t be better timing that I started therapy for the first time in July. I finally get to address my self-esteem issues and my negative tendencies. It’s been good for me to say my thoughts out loud to someone who can give me strategies to deal with my insecurities. Even though I’m not happy with my appearance at the moment as I work through my acne struggles, I do feel better about it this time around as I work with my esthetician and instill stronger products in my skincare routine. I know that, like a season, this rough patch won’t last forever.