The Journey - Vaccinating RJC

I have been worrying about - and some may say obsessing - over how to get RJC vaccinated since before the vaccine was available. I knew early on that getting her vaccinated was important to us and not optional. Our history with our gal and vaccinations was not a positive one. In fact, it was quite the opposite. Even shots that they tried to give her the few times she had to go to the hospital for procedures were a "to do." I still remember the anesthesiologist watching my daughter running around in the pre-Op room saying to one of his coworkers, "If you think you have a problems, I have to find a way to knock that girl out." 

RJC has never tolerated shots of any kind. Actually she has never tolerated much of anything that was a "procedure." As a baby, as a toddler, as a young child and until her last required vaccine for school which I am guessing was around age 11 or 12, this was an issue. When she was very little we could easily hold her. When she was preschool/kindergarten age she went to a dentist who used to restrain her in a papoose board just for a cleaning. The last time we went to that dentist, she busted out of it - apparently unheard of - but when my gal is scared her adrenalin gets going and she is beyond strong. The last time she was vaccinated at the doctor's office around that 11,12 age I started out helping but had to leave the office because with all the body parts flailing I was more in the way than I was helpful. Eventually the doctor and nurses came out of the room (I was in the hallway and could hear the commotion and literally could see the wall shaking) and they were all sweating. My gal followed slowly behind, holding her arm and woefully singing "Nobody Knows the Troubles I've Seen" - a song she heard on a Wee Sing video. She didn't understand the words but she understood the sentiment. 

Interestingly, pain is not the issue for her. She has always had a very high threshold for pain. It appears that it is more of the idea of a shot. I received all sorts of advice and read all sorts of articles about what to do to make vaccinations less scary. All of the information was basically for toddlers and young children. Though RJC is preschool-like in many ways the big difference between her and an actual preschooler is her years of living. She has life experience. She's had shots as a child and even if the shot itself was not particularly painful the all around experience was not pleasant. She has also seen us getting shots and is very aware that the needle is sharp. She knows sharp things can hurt. So by default she has an understanding that shots can hurt. Added to that is her lack of receptive language and the difficulty she has in understanding abstract concepts. She has had no idea why, in these past 15 months, she has mostly been home with. No day program, no fun outings, not even a grocery store trip. Though she has adjusted and is generally happy that lack of fundamental understanding means we cannot tell her "Two weeks after this shot you can go to xyz because now you are more protected and can stay healthy." That means nothing to her. And really, to RJC, there is no reward large enough to warrant a shot.  

So that is her history which was making getting her this vaccination a very complicated issue.

We wanted RJC vaccinated, not only to help keep her safe from Covid but also so that she would be able to comfortably go back to being with peers, ideally to be back at the farm she loves as well as a possible Day Program. Of course we also wanted to feel more comfortable going back to the fun things she loved to do - go to the movies, eat out, visit the Zoo and the Aquarium, go to baseball games etc. 

I initially contacted our local Department of Health and spoke with a nurse who was very empathetic and truly wanted to help. I explained that I thought we would do best if she were vaccinated at home and with the J&J - one and done. We had a few conversations and at some point it became clear that the J&J was not going to be available. For me, this was pretty much a dead end. I could not imagine trying to do this twice. 

In the meantime we met with our Board Certified Behavior Analyst (BCBA) and as a team we decided to try to use a desensitization program to see if we could eliminate some of the aversive behaviors. In others words, help her tolerate a shot enough to get it done. As much as I wanted this to be a lifeskill forevermore, we did not have the time to do that. So the idea was to minimize the issues. We had a therapist come over to help with this, and both my husband and I were on board. We started with getting her used to seeing a syringe (the first time she  yelled and tried to throw it out) then we moved to her holding it and playing with it (water and paint - who knew there were fun things to do with a syringe) and eventually we were able to give her a pretend shot (turn your head, count to 3, as we held the pretend syringe with a pretend needle to her arm). We did this quite successfully over a period of time though it was obvious that she was well aware that mom and dad and her therapist don't give actual shots and she was clearly not in a doctor's office. But this was all we had to work with and her reaction was to no longer panic when faced with a syringe so that was positive.

At some point we knew it was time to give this a try. We saw that in our state, The CT Council on Developmental Disabilities created a partnership with The Town of Vernon, to help make vaccinations accessible to each individual. I called and emailed to get more information and received an incredibly quick response from the Director, Walt.  When we found out they were willing to send somebody to our home late at night, in the hopes that she would be sleeping, we decided that this may be the best option. Phone calls and messages went back and forth, and RJC's physician prescribed a sedative and a numbing cream. The doctor and EMT came over and we talked over the plan. Unfortunately she was not in a deep sleep so we ended up in our kitchen with me trying to reassure her and her literally pushing me away saying "No sharp!" It became obvious that it would not be safe for her or for the medical professionals to try to vaccinate her. Before leaving, the doctor mentioned that we should consider trying again and that it would probably be necessary to have PMT staff with her - staff trained in physical management. I could not even think at that point. I watched them leave and then I cried.

In the days that followed I really was feeling like this was an impossible task. I called Walt to let him know the vaccination attempt was not successful. He immediately offered whatever help he could for us to try again but admittedly I was not in a great place emotionally so I said I was going to take just a bit of time to think things through. He completely understood and reiterated that I could call any time.

About a week later I received a call from somebody from the town of Vernon to let us know that they were running another clinic. The doctor was the same one who came to our home as he was the medical director of their program. For me, that was a positive as I found him to be direct yet sensitive to RJC's needs and limitations. It so happened that I had also just read an article written by a mom who I knew. Our paths had crossed a few times as she is very active in the autism community and a strong advocate for her son. She had successfully had him vaccinated with PMT staff to support her son. I messaged her to get more information and we spoke further on the phone. She was reassuring and it was helpful for me to have the facts about how this could potentially work. Most importantly she demystified the concept of PMT.

It is not as though PMT was a completely new concept to me. My gal has had to be physically restrained in the past, both during her school years and as an adult. The difference is that it was never planned and I never saw it. I received the reports after the fact. The concept of planning to restrain her was new to me and I was hesitant. My husband and I talked it over and it became obvious to us that this was the only way to SAFELY get it done - safely for her and for those around her. 

The clinic is set up to produce success. Each individual's needs are discussed ahead of time. Individuals are given a one hour slot so there would be no rushing, no lines, no chaos. For a gal with sensory issues like ours, this is a huge bonus. Many messages went back and forth between me, our Caseworker, Walt at the Council, the woman coordinating the Vernon clinic, and the person who was helping us find the trained staff. The questions they had for me about the best environment for RJC were thoughtful and there was a great deal of reassurance offered. Did we think a therapy dog would be helpful? Videos? What would be fun for her that could possibly be a distraction?  How should we have the room set up? We had also heard that there were two PMT staff available to go with her. They each had many years of experience.

I am relieved and happy to share that four days ago our daughter was successfully vaccinated. Here's what happened:

We told RJC we were going to meet some new friends. When we got there, I went in first to meet everyone and see the set up of the room. It was just as I expected from our phone conversation. The medical people were in "street clothing" instead of scrubs. There was a large screen set up for her to watch a video. They brought stickers (which she loves) and a few other things to keep her distracted. There was a weighted blanket. I met the two staff who were very calm which was helpful to me. I saw the doctor again who reassured me that they were going to get this done and I met the woman who was organizing the clinics. Everyone seemed comfortable and unrushed. It was suggested that my husband and I did not need to be there if we preferred not to - and I took them up on that in a heartbeat. I honestly felt my jitters would make everyone less comfortable - especially RJC who definitely reads my moods. I went to the car to get my husband and RJC, introduced her to her "new friends" and watched as they went off together. Then we went down the hall to another room.

There were a few people in the room who I believe were there to help out with this program if needed. Looking back, I never asked many questions of them because I was too nervous, but we did chat a bit. I do not think we were waiting for more than ten minutes before we were told she had been successfully vaccinated. We zipped right out to her and she seemed fine but also confused. She was playing with the stickers. We quickly told her she did a great job, said a very quick thank you and whisked her off to her very favorite cupcake store. She seemed to be ok and was thrilled to choose her favorite cupcake.

The next day I did get a few more details when one of the staff who helped her gave us a call to see how she was dong. I was amazed and truly thrilled to hear that not only did she not resist much, but that when she saw the shot coming she said "1-2-3, 1-2-3" which is what we had taught her through the desensitization process. So somehow that stayed with her which gives me hope that she will one day be able to tolerate a vaccination independently. Not sure right now how to make that happen but I will be looking into it. It will be a long haul for sure.

She hasn't said much about the whole experience and so far she is a bit red around the injection area but she has not complained once nor has she obsessed over the issue. I expected to hear "No more shots" or something like that for months to come, but she's said nothing. We have told her a few times, "You did a good job with your shot" in the hopes that we can desensitize her to the word "shot" (which usually gets her screaming). 

In summary, this was an excellent experience - not traumatizing for her and a huge relief for me and her dad. 

This was tough to write and honestly it's still an emotional issue for me. I cannot believe how lucky we are to live in a state where my daughter matters enough for people to come together and help our family. We are beyond grateful and I would encourage anyone in CT to look into this. 

I chose to share this very personal experience because:

• I hope it may help a family struggling with this same issue. I encourage them to reach out to the Council. 
• I hope that people will have a clearer understanding of the hurdles our brave and resilient gal overcame in order to get vaccinated.
• I hope that other states will consider this type of program. Everyone who wants to be vaccinated should be able to be vaccinated safely and in a supportive environment.
• Most importantly - we are very very proud of her.  

Catching up and a Bit of Musing About a Special Day

It has been five months since I've sat down to write a blog post. I have thought about it but in truth, not much has changed for us except that both me and my husband are vaccinated. Long story as to why RJC is not yet vaccinated but we do hope we will figure out all of the moving pieces needed to make it happen. Not sure how long that will be. Since she is not vaccinated we are still cautious about being in public - which is why our lives have not changed much. We continue to take walks, rides, have driveway visits and do activities in our home. She has really enjoyed receiving mail, doing arts and crafts, and baking. When her sister visits and we go out she is sooo happy!  I think she gets tired of us at this point as we truly are attached at the hip. We are very comfortable outdoors though we still social distance and avoid large crowds. 

It is what it is.

On another subject, I've been thinking how odd it is that G-d willing, in just a few days, RJC is about to be the same age as I was when I got married. I cannot tell you how weird that it is to me. At her age I was newly married and getting used to living with my husband just across the border in a different state, working at an intense full time job that I loved, taking care of a crazy stray cat, hanging out with our friends, hoping to be a mom, and getting my Masters degree. Right after we were married my husband had to travel out of state for work every two weeks for two weeks at at time (though he often flew home on the middle weekend) so it was an odd period of adjustment but a very interesting and exciting time in my life. 

My gal's life in so different from my life experience. And yes, I know that no two lives are the same but the fact is that her autism limits many of her life experiences. I am not complaining about it as I thank G-d every day she is happy and healthy. But from my mom perspective it sometimes hits hard that even with the major strides she has made and the obstacles she has overcome, her life is complicated and yes, limited in many ways. Usually those moments hit hardest on special occasions - like her birthday which is just days away. 

A brief update:

She is still a huge Barney the Dinosaur fan and she knows how to pull up YouTube videos of the old shows. She watches in various languages including Hebrew and Spanish and we sometimes will hear her use a word in Hebrew or Spanish properly. One day she looked out at the rain, turned to me and said, "Look, it's geshem!" Her language is still very concrete with incredibly limited comprehension about anything abstract and her grammar is her own version of what a sentence should be but she can often still get her point across. She enjoys our walks and long rides in the car and will call out the things she sees. She loves music (especially toddler tunes and the Beach Boys and I'd say this year she really took a liking to Neil Diamond and The Beatles), baking with her sister, folding laundry and loading, starting, and emptying the dishwasher. She tends to be loud, usually when frustrated by the internet and it can be jarring to those of us in the house with her. She has definitely been frustrated by small things that have lead to huge tantrums.  I often wonder what she thinks of her life without the Day Program she was attending, without the farm she loved to go to, without Special Olympics, without the many day trips we would take to the zoo, the Aquarium, a favorite park she has, miniature golf, bowling, restaurants she has enjoyed etc. We continue to simply say "it's closed" when she asks about those places, though recently she called me out on that as we drove by a place I told her was closed and she responded "It's open" quite adamantly - I mean, she noticed the cars and the people! Yikes. So I said, "it's closed for RJC" and that will be my new response.  One day she specifically requested to "call daddy" (who was at work) so of course I obliged because I was totally curious about what she wanted). She wanted to verify that she could choose a specific dinner meal that weekend. Apparently mom's word was not good enough. Sheesh. 

But mostly she is happy and healthy and I am grateful that she is oblivious to the existence of Covid as well as the complicated political environment (both things which personally cause me anxiety). 

This week she is going to enter the last year of her 20s. We have always made a conscious decision to meet her where she is developmentally, not chronologically. So we will celebrate in a way that makes her happy while keeping her safe. We will be home and it happens it will be the start of Shabbos - the Jewish Sabbath - which she loves. We will light candles together, give her a blessing, and have one of her favorite meals - stuffed shells (no sauce on hers) and garlic bread with cake and ice cream for dessert. During Covid we have made it a routine on Saturday nights to bring in dinner and her favorite choice is cheese pizza and a special cupcake of her choice so that will be the plan. Sunday we hope to visit her grandma and grandpa and celebrate with them because they are a very big part of her life. 

Basically it will be a birthday weekend of celebrating our gal. And while she will only consider Friday as her actual birthday celebration (because the abstract concept of a birthday weekend makes zero sense) her dad and I will receive joy in celebrating each day in her honor.

If you are so moved to do so, please feel free to do some act of kindness in her honor. We always appreciate the kindness that comes her way and it would be so nice to know that perhaps on her special day, kindness would be spread in her name.  Sending light and well wishes to all! 

Thinking About a Post-COVID Life (A COVID-19 Post)

 It has now been 9 months since RJC has been at her Day Program and since I have been staying home to care for her due to the Coronavirus. We are currently in the midst of a scary surge of cases. Vaccinations have begun but there have been problems with their distribution.

Our lives have pretty much remained the same since the first time we were quarantined. Hubby is working, RJC and I are home together. We take rides, have driveway visits (which have also morphed into parking lot visits with coffee), and have become quite comfortable with Zoom get togethers. RJC loves to help around the house (dishes, baking, laundry, cleaning) which is both wonderful and complicated when her OCD issues pop up. We still walk outdoors though we have swapped our shorts and tshirts for winter coats, hats and gloves. 

The longer this goes on, the more time I have to think about the future. Life after COVID-19. Not just in terms of where I hope we will be vacationing at some point, or the excitement of the possibility of seeing relatives and friends and giving them huge hugs, or going to see a show, attending a hockey or baseball game, catching a movie etc. Nope. Not this lady. This lady is mostly thinking - some may say obsessing - over RJC and what her future holds...a time post-COVID-19.

I will preface this with saying: I have ZERO interest in arguing with anyone over whether or not people should be vaccinated. Everyone has their own opinions and I can be respectful of those who choose differently than we do. It is an especially touchy issue in the autism world as there are those who feel that vaccinations have caused or played a part in their child's diagnosis. Bottom line, we are aware of all of this and we choose to vaccinate. 

I have been obsessing over the vaccination process. Realistically, there is no way I can currently see that RJC will be able to be vaccinated unless she is under general anesthesia or somehow very very medicated. She is not small enough to hold down and she remembers her younger days and getting shots. We cannot even say the word "shot" without her starting her "no shots" scripting. We tried a trial run - attempting to get her a flu shot. We took her with us, letting her watch both me and my husband get our shots first. Nope. She was having none of it. We tried flat out bribery. Uh uh, no way. Her lack of cooperation is making me very nervous as I am unsure of how we will be able to go back to a "normal" life without her being vaccinated against Covid, not to mention my anxiety over trying to keep her safe has been sky high for a while now. While we are all about masks, social distancing, and washing hands, we are well aware that nothing is 100% so having the vaccination would give her an added layer of protection. In any case, this has been a huge worry that I cannot seem to figure out.

The second concern about her future is (hopefully) more long term, which is: who will take care of our gal once we die? This has always been a concern but watching what has happened in long-term care facilities, including group home settings, and how rampant the cases of Covid have been, it is a huge concern. Simply by their nature, I understand why the virus spreads. People are in close contact and employees come and go, back and forth from their "real lives" to these settings. Thus, there is more opportunity for Covid to be brought in. Added to that has been the awful heartache the residents and their loved ones have been going through in not being able to visit with each other. I know people who have been separated from their children for months (as have people with loved ones in other types of long term care settings). The thought makes me so very sad, so very scared, so very anxious. 

I have started to write down all of the important information that somebody would need to know about caring for RJC. Names and contact information about various professionals, agencies and social groups that she is involved with in the hopes that this will help with consistency and she will not lose any important services or support. I've added medical information. I still need to add specific behavioral info and just general tips on how to handle certain situations that may arise. Doing this has given me some small piece of mind but it also makes things very real. Especially as I enter my 6th decade. Tick tock, tick tock...

We have many unknowns, like so many people all over the globe these days. We will hash them out and at some point we will figure things out. 

It's what we do. 

 

A Not Very Exciting Update (A COVID-19 Post)

I realize it's been a while since I've written. So here is the not very exciting update.

I love getting calls and texts from family and friends and catching up on what is new. The thing is, not much is new. We are really in a holding pattern. We still take our walks, and we are still doing driveway visits and taking car rides to nowhere. RJC helps with chores around the house - and we have discovered that she does indeed know how to use the Swiffer and will do when so when she sees something needs mopping up. She loves her iPad and enjoys baking. Once in a while I can engage her in something artsy thought admittedly that is not my personal forte. 

We did have two fun adventures to the beach! There happens to be a special needs beach just about an hour away and we went one time on a hot summer day, and a second time on a cooler day. Both were a nice escape and it was fun to do something different. It is very COVID-friendly. There were not many people so it was very easy to stay the minimal 6 feet apart. In reality, we hardly saw anyone so that was never even an issue. Reservations are needed and they assign each group a specific spot (no more than four people per group). We had friends meet us there in their own car and we were easily able to chat while social distancing. It was a beautiful and relaxing setting and watching and listening to the waves was a treat. 

It was also nice to be someplace different. One of the more difficult issues we are facing as time marches on is that we continue to have the cloud of COVID hanging over us. Our days are almost frighteningly the same and we do not see many people. RJC does not wear her mask for more than 15-20 minutes so we are very limited in where we go indoors. Even with a mask, I am not particularly comfortable indoors with other people around so that really limits us. I have some serious concerns as Fall seems to be passing quickly and at some point we will be dealing with ice and snow and cold. None of those things are on my "favorites" list and I hate the idea of being stuck inside, day after day.

We did think ahead to winter and ventured out to buy snow boots and warm coats. The plan is to still be outdoors at least for a little while each day. Maybe not for as long as we can be now but I think the key to sanity will be found in nature. There is something both comforting and "normal" about hearing birds, seeing squirrels and chipmunks, and the smell of the great outdoors. 

We have definitely had some bumpy days. I often do not know the source of her angst which makes it particularly difficult to "fix" her issue. Those days seem to come in clumps and then we have some really great days that follow when she is giggly and happy. Some of this may be related to allergies - at least that is our current theory. Her OCD tendencies are also going through the roof. She has spent hours rearranging her video tapes. She also like to rearrange our kitchen cabinets and the food in the refrigerator. While that sounds lovely, it can also be a mighty big pain in the neck to not be able to find anything where we originally put it! The really problem is that she is beyond bothered by little strings on her clothing. She is constantly picking at them (some that I cannot even see) and ultimately rips her clothing then throws it out. I am not a shopper even in normal times, so this has been a definite problem. 

I do wonder if this COVID craziness will effect RJC in the long run. I do believe she is amazingly resilient. She has shown that time and time again so it is my prediction that she will be just fine. Still, I'm her mom and I worry.  I worry about all of us actually. We are living in an unusual time to be sure. It will be wonderful - and weird - to be able to come and go in buildings as we please. To walk through stores in whatever willy nilly direction we choose. To see people's full faces - not only their eyes and hair. 

The bottom line is that we are doing what we need to do, we are generally happy and we are making it work. 

Hoping the same for all of you. 

Taken from my FB Page ( A COVID-19 Post)

RJC just asked me, “Is it a stay home September with you?” When I said “yes” she nodded and continued on with what she was doing. It appears that she is adjusting to this “new normal” and while it certainly is easier than when she was fighting it, it makes me sad. This past weekend I had to let her know we could not go to the Aquarium or the Zoo. Both of her favorite places were in her calendar for this month. I had dreaded telling her (worked myself up into quite a tizzy) and Hal and I had talked about different tactics to use. We finally settled on the straight talk. I listed all of the places we couldn’t go anymore that she already knew about, then added “and no more Aquarium or Zoo.” She stared at me a bit then went to her calendar on her iPad and said, “delete?” I nodded. She deleted. That was that. This pandemic has really made life complicated but this new complicit, passively- accepting-bad-news behavior has oddly made me sad. Is that where we all are now? Just a sad acceptance of the inevitable that the world we know it - the pleasures we enjoyed are no longer possible so - oh well? Ug. There is no guaranteed way to avoid getting sick but at the very least I’ll wear my mask, social distance and wash my hands without complaint. Because I want my old life back. I want to see and hug my family and friends, I want to go to shows and movies comfortably, I want to attend synagogue and share simchas and kiddush! Mostly I want to take my gal to her favorite spots with no worries about ending up on the news because she took off her mask. Just sayin’. And - I would love an end to the illness and deaths and divisiveness that we are bombarded with every day. I would love to not have anxiety about getting sick and trying to figure out who will take care of my gal (and though her sister is an adult I absolutely still worry about her like crazy), about my family members and friends getting sick, about all of the teachers and first responders’ health and safety, and really - globally - it is all such a concern. All of these feelings surfaced because my gal didn’t tantrum, didn’t hit herself, didn’t go through a wall. I know - I should be thrilled. But it made me sad. From here it’s time to move on with our day. Headed out for a ride with my gal then to a socially distant gathering of Friendship Circle moms. Life goes on in a weird way. But it goes on and for that - I will be grateful ☺️

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!