Tuesday, January 12, 2021

Hindsight is 2020~

So, back to our update about Miss Jenelle. My last update left off when we discovered that Jenelle's two front teeth were infected and needed extraction. Poor baby girl. I was devastated that this had been going on for a few months and we didn't get it treated soon enough. On an emergency basis, Jenelle finally got into CHOC for the dental procedure on January 28. 
For a child like Jenelle, all dental procedures like filling cavities and full cleanings have to be done under anesthesia. Our Dentist has privileges at CHOC, and they were able to get her in quickly. While under anesthesia, they got a good set of x rays showing that Jenelle had fractured a third tooth next to her two front teeth. During the procedure, the dentist came out to ask my permission to pull all three. It really was the only option, and I felt miserable. I sent a group text to the family to update everyone and ended it with "Jenelle has shitty parents''... Jack replied quickly "No Comment" which lightened the mood considerably.
Jenelle looked like a Rugrat with her bloody, gummy smile, but she got through the procedure with a smile and looked as if she felt better immediately. In the coming weeks, we noticed that once the infected teeth were gone, Jenelle's smile came back. She was drooling less and obviously in less pain. The bigger problem however was trying to get her to eat by mouth. Also around that time, Covid 19 reared its ugly head.

When the world stopped on March 13, 2020, I decided to stop trying to feed Jenelle by mouth. There was no need to risk aspiration ending in pneumonia or worse with a global pandemic. Basically, we were going to try to avoid anything that could land us in the ER.

All special needs kids function best when on a strict schedule. In talking to a lot of other parents in support groups - the global shut down from the pandemic came with mixed reactions from special needs kids. We were very fortunate that Jenelle loved it. She loved having everyone home, including big brother and as a result, we saw less seizures.

Like everyone, we had to find a new way of doing things - like school. From March to the end of the school year, Jenelle attended class twice a week via Google Class Room for a 30 minute check in with her teachers. I became her teacher and while also trying to work part time as a paralegal, I had to figure out how to do the teaching job of Jenelle's Special Education team. IT was not easy. We watched a lot of Kid You Tube - SAG/AFTRA Storytime, Science Guy, videos of dominos setting up and tumbling down, and a hamster who liked to run through obstacle courses. When June rolled around, I think we all (and with that I am including Jenelle's Special Education Team) realized this was not enough.

Because of the severity of Jenelle's special needs, she qualifies for what they call Extended School Year (ESY). The week after the last day of the 2019/2020 school year, Jenelle began a more rigorous schedule with Google Meets twice a day for 30 minutes for the next 5 weeks. Her teachers and therapists introduced me to many apps to use on her school issued Ipad, including SoundingBoard which had a "yes/no'' switch. I also found cause and effect Apps that Jenelle immediately recognized and enjoyed playing with. Over these 5 weeks, I began to learn how Jenelle communicates. I learned her likes and dislikes and really began to appreciate the education she has been getting. Without witnessing it, I had such a misconception of what "should'' be happening and why. 
Although Jenelle is non-verbal; she can communicate. She has a definite head nod for a yes, and looks to her right for no. She loves music, and any video with classical music especially. When I show her the communication board we created for yes or no, she will specifically look at the "button" she wants to select. She enjoys seeing her teacher, aides and classmates. She hates PE. By the end of the ESY, the Team (her teacher, her aides and me) really have an excellent routine that is working with the goals of her IEP.
The new school year arrived, Jenelle's Senior year, and we are still in this pandemic. Staying the course, we kept her at home with online school. Things are going well.

Another huge milestone in 2020; Jenelle turned 18 in October. What this also means is that we had to hire an attorney to file for Limited Conservatorship for Jenelle so that we can continue to guide her medical decisions and such. Our hearing was two days before her birthday, and she got to keep her right to vote, and voted in the 2020 Presidential election.

I really meant for this update to publish sooner, but this year has been exhausting. We are very blessed in that Brett and I have jobs that are thriving, we've spent extra time with our kids at home, and we've really gotten to know Jenelle even more than we did. 
Today is January 12, 2021. Jenelle is still taking online classes and I don't imagine she will return to in person class until after Spring Break, maybe even ESY. We received an email allowing us to register for an appointment for the vaccine, but every day that I check it, all the appointments are taken. But it will happen, and life will get back to a "new normal".

And now, because I am just so incredibly proud of this "normal" milestone for Jenelle - I give you her senior photo... Tustin High School Class of 2021!