I can’t tell you what day of quarantine we are on because honestly, I have stopped counting. At this point it does not matter. Day 1 or day 26 isn’t going to impact much other than my sanity. Each day is the same battle. Did CJ do his homework? Did Ella get what she needed? Did Jack manage to survive another day without eating dog food? That’s right. Making sure the dog eats his food and not Jack is a daily battle in my house. I can’t keep the food on the shelf all day. Gibbs needs to eat too!
Today was definitely a day I spent more time worrying about Ella than usual. As the reality of school possibly not opening soon set in, I began to wonder how much Ella would begin to regress from not having her weekly related services. Currently Ella gets PT 4x a week, speech 4x a week, OT 3x a week, and vision 2x a week. As a parent of a child who receives services, others in the same boat can attest to the incredible importance of the consistency of having said services. Like with core subjects in school, constant reinforcement needs to take place in order to improve skills.
Unlike math or ELA with CJ, I can’t do everything with Ella at home that her teacher and therapists do with her at school. They have specialized equipment they use, and specific tools that help her do the most simple of tasks much easier. I am working with her each day to strengthen her core, properly use a fork and spoon, track objects, and appropriately play with toys. With two other children in the house, she is not getting as much time as she would at school and I have barely touched upon the academic piece. We do use a communication book which allows her to make academic and daily living choices based on pictures that I show her. I can’t honestly say that I have not made much progress there. Ugh.
In addition to missing school and her related services, we have also had to reschedule her second assistive technology evaluation for an eye gaze machine, her weekly medic therapy appointments, an evaluation that was going to provide her with new physical therapy opportunities, and her weekly visits to the chiropractor. These visits are super important to keep her body aligned and GI system in check. Sitting all day with little movement isn’t an ideal scenario for anyone.
On top of all of that we still have to bring Ella for three rounds of blood work, and somehow manage to collect three samples of stool, in four days, from a child that maybe poops three times a week if we are lucky. I keep telling Steve as these quarantine days tick by that I am in survival mode. I am sure a lot of you feel the same. There are literally some days I go to bed at night and try and think back on what I accomplished during the day. If the kids are safe and sleeping soundly by the time I am ready to shut my eyes, I am calling the days events a victory, whether I can remember them or not.
To top it alllllll off it was confirmed today that Ella’s IEP meeting for Friday has been postponed to a later unknown date. My phone was also buzzing all day with texts and emails from Ella’s teacher, therapists, case worker, and advocate checking in to make sure we had all we needed, and that Ella was okay. They have been great at providing suggestions for what to do at home and are available to talk anytime I need them. She has a large team supporting her, not just at school but at home too. When I start to get overwhelmed with everything going on I try and remember that we are not alone. It’s okay to ask for help. That is something that I am still working on improving.
In the midst of all the worry Jack decided he was going to stand on his own tonight. Watch out world, Jack is coming for you. He was taking steps with the help of big bro and each time he fell he was more than happy to get up and try again. He will be running around the house in no time. If only I could get him to stop playing with the damn dog toys. I thought him crawling after the Roomba was going to be my biggest problem for a little bit. Boy was I wrong.
CJ managed to finish his school work for the day and spend some quality time with daddy before he headed back to work. Then, as we do every Wednesday night after the littles are asleep, we watched LEGO Masters. In typical CJ fashion, he talked through the entire show and had opinions on everything that was being built. Tonight was a tough episode. SPOILER ALERT. His two favorite masters, Aaron and Christian, were sent home. He cried. It was a rough couple of minutes and he is still pretty upset, but I think he understands that just because YOU think someone should stay, doesn’t mean they will. He said he is going to take this next week to decide if he wants to continue to watch the show. My guess is that he will see it through to the end. They have now reached the final three teams. He won’t want to miss the finale to see who wins. He’s too invested.
Tomorrow is another day and with it will come new challenges. I continue to pray that everyone stays safe and healthy, and that life can return to normal sooner rather than later.
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