Going Backward to Move Forward (a COVID-19 Post)

It occurred to me today, as I was driving around aimlessly with RJC, that I had done this before. Many times and years ago, when my gals were toddlers and preschoolers we had done this - hopped in the car and just drove around with no actual destination.  Circumstances are such that I find we are doing it once again. 


The summer when RJC was five years old, and NMC was two years old, was a hot and muggy one. We had no air conditioning in our home and my mom had been laid up - I believe she had hurt her foot - so I was on my own during the day with the two girls. At that time, RJC's behavior was volatile and she could run incredibly fast, not to mention she loved to climb and jump and was generally impossible to keep up with. On top of that she was lacking in both expressive and receptive language. There was a huge amount of yelling and tantrumming occurring. NMC was a mild mannered toddler, but a toddler nevertheless. It was not safe for me to be out with both of them by myself. One went one way, the other went the other way, and it was nerve  wracking trying to keep them safe. As a last resort, I would put them both in their car seats after lunch and drive around for hours. Usually NMC fell asleep and RJC was mostly happy enough to drive around while I played her music. It was the quietest part of my day.


Fast forward twenty-two years and I find that RJC and I are together, 24/7. There is only so much we can find to do with our time. We take a walk every day, we do some chores at home, sometimes we bake or she will "chat" with somebody on the phone, and then she spends a huge amount of time on her iPad - with Barney the Dinosaur, Sesame Street, Wee Sing, and Shari Lewis, to name a few of her favorites. Being home that long with little stimulation has lead to various behavioral incidents over very small issues, the likes of which we have not seen in years. She is truly lacking stimulation. What to do, what to do?


Without thinking through any details, I spontaneously asked her if she wanted to go for a car ride. She immediately responded 'yes" so we zipped out to the car and we were on our way. I put the Beach Boys station on Pandora (she does enjoy their music), opened the windows a bit and off we went. At first, she was asking where we were going. "For a ride" I replied. It took her a while before she stopped asking because usually when we are in the car we have an actual destination. A few times she asked "Where's dad?" and "Where's home?" I just kept telling her we were going for a ride then we would go home and then see dad. After a while of repeating that same response and as she had the time to process it she happily looked out of the window and began to comment on everything she saw. Everything.


"Look, it's a girl running exercise."
"The boy is on the bicycle."
"It's a city" (when we were coming down a mountain and she saw buildings in the distance).
"How many dogs? One, two, three, four!"
"It's a big truck and construction."
Each time she made a comment, I would respond in some way. If possible, I would ask her a related question so that she would need to continue to use her language. It wasn't exactly "conversation" but for us, it's the closest thing we have.


Every once in a while we would enjoy moments of complete quiet then something would catch her eye and she would comment again. She seemed truly relaxed, was enjoying looking out the window and once in a while she would start to laugh. It's a wonderful sound, by the way. She has a great giggle and sometimes it grows into an actual belly laugh that makes me laugh in turn! It is a rare and delightful sound.


Today was the second time we decided to take a ride, but this time we included two stops at friends' homes. We pulled into their driveways and had some social distancing chats. She was perfectly content to say her "hellos" and answer a question or two. Other than that, while we were chatting, she was sitting and listening, looking out her window, and was content. Truly content. Never once getting loud, never once asking to go home.


I am not a fan of wasting time with her. Of course we have "down time" but we are also often thoughtful about what we will be doing or what skill we will be working on. These are unusual times, however. We do not have access to places where we can practice skills like waiting in line, how to order, navigating stores, etc. As she is not generally conversational and the one and only person she has long-term access to is me, her language skills are not getting much practice. While driving around in the car is not ideal, there is something to be said for having a calm and happy gal. Certainly watching her anxiety melt away as we drive up into the hills and twist and turn on the back roads, is a gift. A gift for both of us. Acknowledging her comments and encouraging her verbal skills is quite fun for me and often leads to new vocabulary. It is also nice to have exchanges that are not calendar related!


So indeed, hopping in the car for rides to nowhere has been a few days of déjà vu. At first I felt like we had regressed and I had somehow failed in planning ways to keep her engaged and continue to teach skills. Time to call a bit of a time out, cut myself a break, and see this time for what it is. These are difficult times for everyone. I truly do not know anyone who has not had moments of frustration, fear, or anxiety. Why would I expect that this would be different for RJC who literally has not one iota of a concept about what is happening in the world right now? Of course she is anxious. Nothing is the same, nothing is predictable, nothing is how it should be. For her, these rides are relaxing, stimulating and an opportunity to practice her language. 


No more guilt feelings here. Sometimes we need to go backward to move forward.

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.