So, life has been pressing on. It does not go on hold or on vacation for anyone or anything. Avi is still Avi. That kid is an absolute trooper. On Thursday night we had to sleep deprive him so that he could do an EEG on Friday morning. The kid made it to until 2:30 in the morning before he passed out and he has never complained about anything.
Some things have changed in the interest of being able to help Avi. We have installed cameras through out the house in the hopes that we catch an episode on them and we are able to use that to help the doctors know what is going on. A side benefit to these is it helps keep other kids honest about what they are doing or supposed to be doing. I didn’t think I would be the guy who installed cameras in his house, but here we are.
Misty and I are still struggling with this whole situation. It is bringing up a lot of negative emotions around the first time he had seizures and what we were dealing with all of the things that come with that. Everything from family saying that we were just not loving him enough to strangers coming to our house and making several hyper religious declarations. Then there was also the people that were negative and hateful. Lastly there was friendships lost because they did not know how to be supportive of us. We do not blame them for this, but know we mourned losing those friendships as well.
Now, like I said, life presses on. Misty and I are still in school and it is finals week for us and neither of us have been in the right mindset to do anything with that. So I will be spending today cramming all of my schoolwork into today. Misty’s grades are good enough that she could bomb and and still get an A. I am damned proud of her.
Nevaeh, my beautiful little bad ass. She got her green belt in karate this week and is still pushing hard in karate. The virtual sessions are bugging her, she really wants to spar in person, but she is killing it. She is loving drama and French class. I got the pleasure of showing her how to do “flybys” of the Eiffel Tower using the maps app on her iPad. She had to dress up for some drama class project for school and wore the above dress for the entire day because she felt bad that she could not wear it out and about due to pandemic. She is truly beautiful inside and out. We could not be more proud of her.
Kyler, he has been struggling with all of the recent changes. Not only is there the stuff with Avi and the cameras, but something that was in the works before all of this began was me changing my work schedule so that I could be there for his distance learning. With his ASD he really has some school issues that can be violent and destructive. It is manageable and will eventually go away, but right now he just needs some additional help and that is what I am here to do, help him become the good man that I know is in there.
Now, something about Kyler a lot of people miss is he is actually a incredibly compassionate person. He is also always looking for the next hustle. Sometimes those things work towards a common goal.
For example, he found out that people will pay real world money for pets from the game “Adopt me” in Roblox. So he has been working on it for months and coming up with ways to rope the family into working towards getting these pets so we can sell them. As an adult I look at the time vs effort reward ratio and I do not see that real benefit, but he is dead set that he can make thousands doing this.
This past weekend he revealed why he has been really pushing for this. He decided that he would follow in his big brothers foot steps and take Japanese as his second language in school. And he wanted to use the money from his hustles to take the family on this massive Japanese 3 week vacation. He was looking up flights and rental cars and packages. He literally talked to me for 3 hours outlining the details of it all yesterday. It was amazing to listen to.
Then one of his big schemes grumbled in the later hours of the day as the reality set in and he absolutely lost it. Before bed he went through and deleted all of his online games because he thought he got scammed. When in reality it was a built in limitation to prevent people from exploiting the system and disrupting the economy of the game. I felt so bad for him.
So today I am going to sit down with him and show him the realities of planning a trip like that. Complete with budgeting so that way we can save up for it. I do not want him to lose the passion he has for trying to help and find new things. As well as I want to show him that even though one part of a plan fails, it doesn’t mean that the whole thing needs to be scrapped. It just means that the plan needs to be re-evaluated and fine tuned in order to accommodate the change.
Here is what the upcoming week looks like for us.
- I installed a bunch of Assassin’s Creed games so I can use the tourist modes to show Nevaeh the world virtually.
- Avi’s EEG results will be back in and we will be able to get a better idea of what this is going to look like.
- Planning a massive vacation for the future with Kyler and stressing the importance of a budget. (I am very excited about this).
- No college for me this week!
Ok, I need to get to my coursework. Have a good one folks and know that this helps me.
Jarime's Blog 