Ann Kagarise

Living in Uncertain times with a disability

Scary times! No politics here. No opinions here. Just uncertainty and fear! All I can do is speak from a perspective of someone with autism. These times would be scary to a typical person so to say that it is scary for someone on the spectrum, would not be surprising. Living in a house with four people on the spectrum can be challenging, to say the least, but trying to keep peace in a world that is so challenging is difficult right now. School has been disrupted in our house. Work has been disrupted in our house. Kids that knew and understood their schedules have been thrown into an unpredictable maze with no way out. Teachers are trying to reach kids through a computer screen that are hard to reach in a physical classroom. Kids that need a structured schedule are falling apart. I, for one, thought I could do this. I really did think I could reach my child on the spectrum. I had no idea that she would go out of control and her world would be so turned upside down that she would be unreachable. The only thing that helped, at all, was to put her back into school. Is it safe enough to put her back in a physical classroom? I have no idea, but it comes down to quality of life. I have three kids on the spectrum and myself. Crazy! I know! My sanity became a factor as well. I love teaching my kids at home, but at some point, I had to recognize that if I don't have my space, as well, I was going to lose it. I always say that people with autism need time to be in their autism bubble every single day. We work so hard trying to fit in and act like we are not on the spectrum. It is crucial that we make time for ourselves and get lost in our own passions. I have many passions that I have not been able to do in months. I love to write. I love to read about marvel. I love to blog and work on my photography. I love to work on projects I have at home. I love to play games with my kids. I love to watch binge-worthy shows on Netflix, etc. These are all so important to me. I'm obsessed with antenna tv and trying to find the most channels without paying for them. I love scanner radios. I love taking a bath. I love just having a few minutes to breathe. In these uncertain times, a lot of what allowed me to breathe easier, has been taken away. A few minutes just for me. A few minutes to calm is so crucial to the rest of my day. I have a passion for the news and being informed, but during these uncertain times, that can bring about more anxiety. The world we are living in, is very scary and I'm not even sure what tomorrow is going to look like. Two of my kids are back in school, but one has to be home because he is immunodeficient. We are just trying to make it through until tomorrow. We all are. We are all just trying to find our new normal, but there is really no way to find it when there is NO new normal. Every day is different and there is no place to settle. Imagine being on the spectrum during these times when your entire life depends on structure and certainty. Two of my kids with autism, well, I think I can say all three of them have anxiety issues. One of my kids on the spectrum has generalized anxiety disorder and her behavior has been out of control. Her fears have been dictating her every move and she is stuck in fight or flight. We can't blame her at all because after watching our news, from people taking over the capital to covid, we are all living in uncertain times just trying to find our new normal. I feel like our world is under attack and it is coming from within. I pray for our country and I pray for those on the spectrum that is trying to make sense where there is no making sense.