Kindergarten. That’s how I ROLL.
August 2018: The first day of the school year. The day I began my first job outside my home in about 15 years, the day my firstborn became a senior in high school, and the day my baby entered kindergarten. (And not to leave them out, I also have a 5th grader and an 8th grader.) Lots of joy and lots of tears shed that morning. Most of them from me.
Lots of preparations were made for Adylaede to begin Kindergarten. Before the start of the school year, we had an IEP meeting with the staff of her elementary school. Accommodations were put in place to the best of our abilities. The hardest accommodation for me to accept was the bus. Sophea was able to ride the kindergarten bus with her big brother, and I envisioned Adylaede would do the same. But Adylaede’s CMD is a little more advanced than Sophea’s and deep down I knew she would not physically be able to climb the bus steps. That meant she would not be able to ride the bus with her best friend/neighbor and their big brothers. Every time, I talked about it, the tears would fall no matter how hard I tried to hold them back. I don’t know if this was all about the image of the big brothers helping their little sisters onto and off of the bus, protecting them. Or just something I fixated on to allow myself to grieve.
Aside from the physical aspect of school, Kindergarten is the first time Adylaede is around peers her age where she is old enough to have a sense of self awareness. The statements begin: “mommy, I do not run as fast as the other kids in my class.” “I can not climb on the playground like the other kids.” “They get up from the carpet way faster than me. I am the last one on the floor.” The questions will come later, but for now the statements are enough. My response may not be the best response but most of the time I try to acknowledge her feelings by saying, “that’s true, you may not run as fast as the other kids. But that is okay. You are good at other things (I list a specific when it comes to mind). Everybody is different. If we were all the same…” and then she interjects *usually with a bit of an eye roll*, “I know, I know. …the world would be boring.”
We signed Adylaede up for a program offered through our school district called Summer Sparklers. Summer Sparklers is a 4 day program which allows a select number of children to get acquainted with the school and the kindergarten teachers for a couple hours a day a couple weeks prior to beginning Kindergarten. It was a great experience for her and allowed us to fine tune her IEP plan a little more before school began. By the end of the 4-day week, Adylaede’s fatigue was notable, even though the days were much shorter than her actual school days would be. On the final day, at parent pick up time, Adylaede fell and skinned her knee on the ramp on her way to me. And these were only 2 hour days.
Click here to watch Adylaede pose for a photo with her BFF. Pictures always look so nice, but no one sees the wobbly legs or the fatigue behind the photos. She maintained her balance in the photo, but it wasn’t easy.
School began on a Wednesday. Adylaede had a great first few days, although she missed me as much as I missed her. The second week of school was a full week. She went to school Monday, Tuesday, Wednesday, Thursday… On Thursday, I get a call from the school nurse that Adylaede had fallen on the playground and bumped her front tooth. The only thing left of her top front tooth was a sliver near the roots. She wasn’t in any pain so we sent her to school on Friday. But by the week’s end she was so fatigued her weekend wasn’t even enjoyable. There was nothing she had energy to do but rest and recuperate for the following week at school.
She was barely rested enough for Monday, but she went to school. And again on Tuesday and Wednesday. On Wednesday I got a call from the school nurse that Adylaede had just come inside from recess and on her way to get a drink she tripped, presumably over the floor itself, and ended up fainting in the teachers arms from her chair. Her teacher slightly panicked and after quickly obtaining coverage for her class, carried Adylaede up to the nurse. Adylaede regained consciousness just as she reached the nurse’s office. Even though her teacher and the nurse were a bit shaken up by the event, the only concern Adylaede had was to be sure she wouldn’t get a shot! Before this happened, we had her episodes listed as a possibility in her IEP and IHP, but never had a plan in place for what the staff looking over her should do in case she were to have an episode at school. (We do now.) Adylaede hung out with the nurse for a few more minutes and went back to class at our approval. At the end of the day, when she was still not using her arm properly, we took her for an x-ray where we realized she had fractured her wrist in the fall. She went to school the remainder of the week, even though it was clear the fatigue was becoming an issue.
I should mention that Adylaede uses a wombat chair or a stroller to move from one classroom to the next (for specials, lunch, getting to recess, getting off and on the school bus). The only time she is walking is in the classroom itself. Sadly, we have removed her after school extra curricular activities from her week. From time to time she asks about when she can go back to dance class. She misses it and it was really fun to watch her dance, but she simply does not have the energy for that and school.
After the passing out episode at school, we decided that a 5 day week for her was too much. We requested that she have Wednesdays off as a mid-week rest day. On these days she gets to go to work with daddy to sit in his big comfy recliner and play or watch her tablet. She also works on iready on the computer to help her with reading and math skills. While the midweek day off does help her with level of fatigue, she is missing out on so much instruction. And more importantly, a lot of the fun school events happen on a Wednesday.
We decided to explore the option of a power wheelchair. In the past, we have tried a manual chair, but she does not have the strength to push it herself, so we ended up with an adaptive stroller. Unfortunately, the stroller does not give her any freedom; she goes where we push and that is it. Power wheelchair is her best option, but with her ability to walk, we weren’t sure if insurance would cover it. We decided to push forward anyway and set up the appointment. They too, agreed that a manual chair was not a good option for her. They told us that a power chair would not be approved if we didn’t have a way to get it in the house. We did not. And that’s where great friends come in! I was telling my friend at work about my dilemma, and asking advice because Mike, MartyPa, and I were going to attempt to build a ramp. She jumped right in and offered to ask her husband’s advice. Minutes later she said her husband would be willing to build this ramp for us! And 3 days later, they spent most of their Saturday afternoon at my house building this ramp and adding another railing to our front porch steps so my girls could have independent access to our house. I will never be able to thank them enough for their kindness and labors.
Karen and Martin Smith: You are the best! Thank you from the bottom of our hearts for spending most of your Saturday at our house. We are so appreciative of the time you spent working on the ramp and railings. To most, its a ramp and a railing- to us, it’s the confidence we see in our girls when they can independently go up the stairs or the ramp to get in to our house. To quote Adylaede the first time she went up the stairs without holding my hand, “Momma, I don’t need you anymore!” It was such a proud moment for her. I’m so grateful to you guys for giving her that! Thank you, friends.
Now, we wait on her chair to be ready. Insurance has already approved it!
I already purchased a couple of cute t-shirts from 3E Love (Embrace, Educate, Empower) for Adylaede. Do YOU even ROLL, Bro?!?! Adylaede does! (Or will be ASAP!)
Edit: After Adylaede’s fall where she broke her arm for the second time, she was assigned a PCA (Personal Care Assistant) at school. In the beginning, I was so nervous about having someone be with Adylaede full time. Will she lose some of her independence? Will the PCA understand Adylaede’s anxiety. Will she be cognizant of when Adylaede is having a harder time hearing people speak? Will she be willing to learn Adylaede’s signs of fatigue and know when to push her to try or when to allow her to rest? Well I worry no more; our PCA goes above and beyond. I am so lucky that Adylaede’s PCA is amazing with her. Adylaede comes home so often with a story about how her “helper” allows her to play on the playground with the other kids. She helps her up the steps and ladders so Adylaede can slide and enjoy the things she sees her friends doing. I am so grateful that her PCA gives me the confidence to send Adylaede to school 5 days a week when Adylaede gets to first grade. My favorite part is that her PCA sends me photos of Adylaede (and Giddeon too) in school when they are doing something that I am missing. I just hope that we have her for as long as Adylaede needs. 🙂 Adylaede loves her helper!
Here is another sweet part of her kindergarten adventure: Adylaede has her best friend by her side! Her best friend has been around since they were 8 months old. They adore each other. We were able to request that they were in the same classroom for Kindergarten. I am so thankful for that. Adylaede’s best friend helps teach other’s how to treat Adylaede. She plays games where Adylaede can be included. If someone suggests playing tag, her best friend will suggest playing hide and seek instead so Adylaede can play too. If Adylaede is having trouble getting up off the floor, her friend will wait for her and sometimes offer a hand if Adyladed is having a really difficult time. When Adylaede began practicing in her Jazzy, she gave her friend rides on it, but even when Adylaede is using it as a tool, her best friend is right beside her playing the same as before. She sees Adylaede as a person, and her chair as a tool or a device. It really is such a special friendship and I just hope that these girls continue to be friends throughout the years.