Update (a COVID-19 Post)

People always ask, "how are you?" when we first start chatting. HA. Well, that's a mighty loaded question. Here's the update on our family.


I like to think that I am a fairly even tempered, generally optimistic gal. I work through my anxiety - even laugh at myself - and I handle most of our complicated autism-related issues relatively well. I'm used to them, I have an amazing professional support team as well as a small army of wonderful people, relatives and friends, who care about our family.


This week I have not lived my best "Autism Mama" week.  It was rough. There was so much screaming and self-hitting from my gal, and there were some teary moments for me. I had to resort to giving her meds - something we have avoided for quite a while now. They are "as needed" and this week they were needed three times. Ug. Mostly I've gotten past that reaction and can be pretty stoic but this week was seriously trying. I've been trying to figure out why  I have had such a negative reaction and I truly believe it is the complete lack of control I feel. And lack of sleep. Usually, even when things are going awry, I can get a handle on what needs to be done. But this? Living with such uncertainty and a HUGE fear that we will get sick, is really playing into every inch of my anxiety. As RJC and I are very emotionally connected, I feel like RJC feels my mood and it is contributing to her difficult behavior.


In truth, currently the biggest issue for me is that if (G-d forbid) RJC should need to go to the hospital, she would not be able to have anyone with her. This is beyond a nightmare of mine. She has no communication skills for this type of situation - zero - none. If anyone were to ask her a question that happens to require a "yes/no" response, it is possible she will answer - BUT the answer would not necessarily be accurate and most likely she would not have understood the question. She would simply be taking a guess that "yes" or "no" was likely to make the person asking the question happy. She does not "do" medical procedures easily. If she has a cavity she needs general anesthesia and knocking her out is a problem in and of itself, even when we are with her, and if she sees somebody coming at her with a needle? Hoo boy. Not gonna be pretty. Then there is the safety issue. She is not about to stay in a bed by herself, she will be terrified to be separated from us, and the trauma she would suffer? I am not sure it would ever be able to be reversed. I have contacted DDS (Department of Developmental Services), the Governor, and my Representative. I am emailing and calling. So are so many other families around this state who have the same concerns.


So this morning, I woke up and my first thought was that it's a new month.  Then I decided to remind myself, "suck it up buttercup" and get a move on with the day. Reminded myself that yesterday was over and today was a new opportunity. Well, it's only about halfway through the day right now, but so far it's been significantly better.  Nothing has changed except my attitude. Now that sounds mighty simplistic, probably because it is. However, it's all I've got and I simply cannot continue the way I was. Taking care of RJC requires a clear head and a positive attitude so that's what I am doing for today. Just for today. I can do anything for twenty-four hours, right?


Amazingly, some truly lovely things happened today. Small things, but lovely things. First, it was supposed to rain all day, but the rain stopped and it was on the warmer side (60 F) so RJC and I were able to take our walk. We usually go a bit over a mile, but today we just kept on moving along and walked close to a mile and a half. Then I went through the drive-thru to get a cup of coffee and another car was trying to come in through a different entrance so I let her cut in front of me. When I went to pay for my coffee, she had already paid for me. Made me teary! Then when we got home, a package came for RJC with a  Sesame Street DVD for her that she's been asking for over and over. It wasn't supposed to come until Monday, but it was here! She was so excited to see her name on a package and when she opened it she literally kissed the DVD and said, "I am so happy." Melt my heart! Then Rabbi Shaya from Friendship Circle called her via FaceTime and it was one of the sweetest, most heartwarming interactions I've seen her have via technology. She knows him well and was beyond thrilled to share some easy "conversation" (he knows how to talk with her so it doesn't stress her out) and some Hebrew songs! As it also happens to be Friday night, I am looking forward to lighting Shabbas candles with RJC which is always a highlight for us. So there you go. A small change in attitude and a big change in how the day is perceived.


This are difficult times, no doubt about it. I also know we will have bad moments because that's just life. The point is - today has been a good day so far. I'll take it.