Plans Interrupted and Finally a Date Night OR Finding a New Normal (a COVID-19 Post)

Plans Interrupted:

This week was not what we expected. This past winter we had signed RJC up for two weeks at her overnight camp and my husband was able to get vacation for both of these weeks (practically unheard of)! We were excited because these are the only two weeks we have when it's just the two of us, 

We had started to research vacation possibilities and had finally settled on where we wanted to go and found a hotel. At this point, the virus was in its very early stages. Our state was not yet sheltered in place, not many people were wearing masks, and all businesses were still open. We were, however, beginning to hearing more about it and decided to wait and see what would happen. It was just a few short weeks later that things began to explode quickly and we put our plans on hold. Though still hopeful, as the weeks went on it became obvious that our gal was not going to camp and we were definitely not going on vacation.

Finally a Date Night:

It has now been four months since RJC and I have been together at home. Other than my once a week grocery shopping trip we are literally together. She cannot be unsupervised and we are not comfortable going places as she has not mastered wearing a mask for more than 15-20 minutes (though we are working on it). This week we asked our younger daughter, NMC, if she is comfortable watching her sister for a few hours. My husband decided to take one of his two weeks vacation and the idea of having just a few hours together, by ourselves, was just too good to pass up. She immediately said yes and lo and behold, we had a date night.

Now this may not sound like the biggest, fanciest date on the planet but to me? I may as well have been Cinderella at the Ball.  First stop? Coffee! The coffee shop we hoped to go to had already closed so we went to our regular standby. We found a parking spot in the shade and sipped coffee while chatting. Uninterrupted. We mostly discussed the future, especially RJC's future. We had a great deal of "what if" situations and eventually settled on the fact that we could not make plans now because things were changing on a daily basis. We discussed the fact that whatever we decided would be for her benefit and not for ours. We would not necessarily do what is easiest but what we think would be most meaningful to her. It is somewhat scary to think about how much she still depends on us to make every life decision for her. It has been 28 years and it will be forever. Forever that we are making decisions for her based on what we believe she wants, she enjoys, and allows her the best quality of life. Honestly. That is a huge amount of pressure. It is also what a parent does - for as long as their child needs. We concluded the conversation by realizing that right now decisions cannot be made much in advance as things change in our world on a daily basis. Still, it was nice to have expressed, out loud, philosophically what we both wanted - for her to be happy, safe and healthy.

From there we were off to husband's eye doctor appointment. I waited in the car and had a conversation online with a good friend about our girls. It was nice to be able to do so without interruption. I could think before I wrote. When we were finished, I read. It was quiet in my car. There was literally no noise other than my own breathing. I started to drift off from my reading and just sat with nothing in my brain. It was an odd feeling but I was starting to (gasp) relax. He came back to the car and we were off to...

Dinner! We chose a restaurant where we could never bring RJC and where we could eat outdoors. We checked out the area first and noticed that the servers were all properly wearing masks and gloves. We looked to see if there was an outdoor table with plenty of space. This was our first time eating out and it was pretty strange. Once we were settled, we were just so happy to chat. We chatted about all sorts of things - but not about our kids. Sometimes we just sat quietly and appreciated each other's company. It was lovely. There was a nice breeze and awesome company. We enjoyed it so much we checked in with NMC to see if she needed to get home or if we could continue our date. With the green light to continue, we went to...

An outdoor mall! It was not busy at all. We could walk without our masks and when we got to the one spot where we saw more people than we had hoped, we simply turned around. We zipped into one store for something I needed for our house and then - CHOCOLATE! The store was going to close shortly but we made it! Hubby was happy with his dark chocolate and I was thrilled with my large chocolate pretzel with small peanut butter cups on it. We found a bench to sit on, across from a restaurant that was playing mellow music through speakers. We may have snuggled a bit, sitting close together with his arm around me and just - being us.

All good things must end, right? So it was time to head home. We chatted a while with NMC before she needed to leave. RJC had a great evening and was perfectly content to hang out with her sister. NMC brought her dinner over and they did some baking together. It reminded me that we need to find ways to have some sense of normalcy when we can. NMC said she'd be happy to come over more often and stay with her sister so we can go out, even if just for a walk or to run an errand together.

So, though our plans were interrupted, in their place was this wonderful time together. I wasn't two weeks, it was four hours. It did not matter. It was exactly what we all needed. Hubby and I needed time together and some quiet. RJC needed time with her sister and enjoyed her time without me hovering around. 

This virus has changed life drastically for us and so many, but today?  Though our plans were interrupted we found a new normal. Date night may look different but it is just about being together. And so we were.

Tired but Still Kickin' - (a COVID-19 Post)

Here we are, mid-July.

RJC has been out of her Day Program for approximately four months and we are unsure when she will be returning. For now I am being a bit like Scarlett O'Hara and I'll think about that issue another day. For now, we have been mostly doing ok with some continued bumps in the road. Some bumps are small, others are more like boulders, but mostly I would say we are someplace in between the two.  

I am making a conscious effort to focus more on the positives than the negatives because it helps me to sleep and because I do not want to be that cranky, negative person. It's not a character trait I like in myself and I definitely do not want to get caught up in the pouty, negative stuff. On the other hand, it is our reality so I'll share a few of the negatives we have been experiencing:

• She is often loud and I am not sure why that is. There is a great deal of very loud self-talking going on which then leads to yelling which then leads to slapping her arms and face, jumping up and down, kicking things etc. I am sure there is a source but I often do not know what that source is, so it appears to come from nowhere. We can be having a really great time and then...BOOM. This has happened pre-pandemic for sure, but it is occurring more often. 
• Other than the hour and change per week that I head to the grocery store, we are together. That is lots of together time. My concern is that she is getting very attached and it will be more difficult when we get back to some semblance of pre-pandemic time and she is with other people. There is nothing I can do about this right now, but it is something I think about.
• She is spending lots of time on her iPad. Lots. I feel guilty, then I don't. I imagine there are plenty of neurotypical kiddos on electronics these days. I do need to pay attention to when it's time to take a break though. Sometimes I just cave in and go with the electronics because she is quiet - and appears to be happy. I suppose that it's a negative because it goes against my general instinct to keep her engaged more in the community BUT the community isn't available so...
• She truly does miss going to her favorite spots - the farm, the Aquarium and the Zoo, especially. She is actually expecting to go to the Aquarium and the Zoo in the August as they are on her calendar. I haven't figured out how to handle that since they are indeed open but they have very strict guidelines that visitors need to follow. Unfortunately I do not think we would be able to handle those guidelines appropriately yet. This makes me both stressed and sad and soon I'll need to tackle this one.
• Her obsessive-compulsive issues are definitely kicking in. This has always been an issue but it has intensified. While at first glance it may appear nice to have an organized refrigerator and pantry, it has become a bit frustrating when we cannot find things we have put away. She moves all sorts of foods into various plastic bags and puts food we left in the fridge to defrost back into the freezer.  We are working on trying to talk her through this as well as labeling certain items with "Do not move." She is also spending time with her hundreds of videos, moving them from here to there and back again. It isn't a problem per se, as we certainly do not care what she does with them, but it is an added issue that we can see is bothering her so much that she is compelled to move them around yet again. 

Now the positives. I have been thinking about this quite a bit and at first I was so deep into all the negatives that it was hard to come up with positives. Once I started, though, I was surprised to discover that this time does indeed come with some advantages. So here is the flip side of our reality:

• Her language skills are improving. Over the years I have fallen into a habit of trying to extend a few phrases into actual sentences. Much of the time we spend in the car on our "rides to nowhere" she is communicating about what she sees. Instead of just saying "yes" or "ok", I will give her a short response and then I will try to ask a question to keep the exchange going. I have noticed that her grammar is generally improving and that she is a very willing participant in back-and-forth verbal exchange. She may still be scripting but she is also a bit more impulsive in her use of language and she is beginning to self-correct. Sometimes I need to remind her to slow down and that often helps her to gather a thought.
• We are exercising! Every morning we are walking about 1 1/2 miles and we have hit the 2 mile point a few times. We tend to walk at the same place so we often see the same people there and they are beginning to recognize her. It is beyond heart warming to see her give somebody a big "Hi!" followed by some sort of compliment ("I like your hat" or "I like your pretty yellow sneakers"). Just as heartwarming is when they reply back or when they initiate a greeting! She looks forward to going in the mornings and usually after our walk we each have a bottle of water and we take a short drive through town. It is nice to have a routine like this to start our day.
• She is eating more healthy. It is easier to skip buying certain foods when I am the only one at the grocery store. Instead of baking cookies or a cake every week, we are baking once a month. We also have gotten into a routine of having an apple for a snack. My husband thought of using a bit of protein powder in her pancakes. She's even eating hamburger (I have no idea why but I am not complaining). Also added to the list of healthier foods these days are bananas and humus. 
• She is enjoying driveway visits. We take a ride to visit face-to-face with friends, from an appropriate distance away. It has been enjoyable for her to see familiar faces. We sometimes get out of the car and set up chairs (I keep them in the car now - just in case we have an impromptu visit). She has never said "no" to a suggested visit and she is happy as a clam to hang out with people. She has been especially happy since we have been able to see grandma and grandpa!
• The saying, "it takes a village" definitely applies here. She has received cards and gift boxes from various friends and it makes her day to see her name on an envelope or box. She does not necessarily understand where they are coming from but she thinks it's a blast to open something. Getting the mail every day is one of her highlights and this mom is very grateful to all who have thought of her. 

Our days are not particularly interesting nor are they particularly varied, but we are definitely trying to make the best of our time. I so wish I could get a peek into her brain and figure out how she is processing all of this. This major life style change, of which she has no control must be puzzling. Yet over time, she has managed to figure out that life is different and she has even found ways to make her days more routine - something that she strives for and thrives on. She is generally content, if not thrilled with the situation. 

I wonder if there will be long-term effects on her that we have not considered. Of course, I wonder that about myself, the rest of our family and friends, and everyone in the world who is finding their way through this time. Yet this is out of my control, so I will continue to focus on the positives and try to find even more ways to make this a positive experience. It is definitely challenging my mama skills. 

Would love to hear positives in your lives right now, so please...share!