RJC's Covid Booster - Another Adventure

Last week, RJC received her Covid booster shot - but this time there were no special needs clinics we could go to and let's just say I am grateful we managed to get it done but holy cow - it wasn't easy. The truth is we need a public health system that takes everyone's needs into account, not only during a pandemic but all of the time.

If you haven't read about her first J&J vaccination yet, it would be helpful for you to go back and read the previous blog post. The shortened version is that about 4 1/2 months ago we were able to go to a vaccination clinic specifically set up for people with special needs. We received support from our state in that they provided us with staff skilled in physical management training, the atmosphere at the clinic was geared to help her. For example, only 1 appointment every hour was scheduled so we had privacy and did not feel rushed, they had a weighted blanket for her, videos that she enjoys on a large screen, stickers to play with, medical personnel were in street clothing etc. It was all organized by one person so all we needed to do was get her there.  

Fast forward to now. We found out from our doctor (and then I researched) that the "one and done" J&J was definitely not "one and done." At the six-month mark the efficacy rate was approximately 3%. Seriously. 3%. It meant that she would basically be walking around unvaccinated. I called the person who had been able to establish the special needs clinics and the funding was no longer available so we were on our own. 

It was disappointing and quite daunting. 

We needed to figure out where an appropriate place would be to get her vaccinated. Clearly, we were not about to walk into a CVS or Walgreens or any of the other public spaces where it could be crowded and her behavior could scare other people and/or be misinterpreted by other people (and in today's world of cell phones I would rather our family not be the next YouTube sensation). Another concern was that the person giving the vaccination would not have had any information ahead of time and possibly any training at all with her specific issues which would make for a dangerous situation for everyone involved. The space they reserve for vaccinations tends to be small and we would still be needing personnel support so this was a big concern as well.  We considered our local public health department and they were incredibly kind when I reached out to them but again, the potential for other people to be around and no specific training about RJC was a concern. It is always easier when people who have already been successful interacting with her are the ones who continue to interact with her. As a side note it is why we tend to visit the same stores/restaurants/entertainment spots etc. with her.

I still had the email of the doctor who vaccinated her the first time so I decided to email him and see if there was a way that he could accommodate her at his own clinic. He had already had a successful experience with our family and I was hoping he would be comfortable with taking us on again. He said he would and reminded me that we would need to bring staff with us. I knew then that he "got us." He understood the need for supports in order to keep everyone safe. I called the state and they were able to send the same two staff to support her that they had sent previously. I was so happy to know that the three people involved with getting her the booster shot were already familiar with her. Emails and texts went back and forth as we tried to find a date and time that could work for everyone. We did not go through the "regular" scheduling process that his clinic had. Instead, we directly communicated via email. I very much appreciated the amount of flexibility we were being given as trying to get a group of busy professionals available at the same time is a challenge. Eventually we settled on an early morning appointment.

We didn't tell RJC ahead of time. No sense in having her worry needlessly. That day my husband took the day off from work so we could do this together and support RJC as well as each other. We made sure to give her a short-sleeved shirt to wear. We went to the drive through bagel store, one of her favorite places.  We also have her a small amount of meds to hopefully help take the edge off. When she finished eating, we told her we were taking her to get a shot and that she would be able to see her friends again, Dr. X as well as Y and Z. We also told her she could pick out a cupcake at her favorite cupcake store. Amazingly she didn't respond in any way nor did she perseverate on the idea that she was about to get a shot. The ride to the clinic was quiet. My husband and I were shocked and guardedly thrilled. When we got there the staff went in to see what the space looked like. It was quite small. That was a concern. BUT the doctor and staff offered to come to our car and give her that shot there. We had a conversation about the pros and cons. We had been concerned about a few issues doing it in the car. Theoretically my quiet concern was if she would think that every time we went to the car she was getting a shot and would she then start refusing to get in the car? I put that thought aside as I figured if that was the case, we would offer her one of her favorite activities and that would most likely solve the problem.  I often overthink and I was able to put that concern aside. Practically we had bigger concerns - she would need to move her DVD player (that alone could potentially set her off) and the staff would need to get in the car with her to sit next to her (not sure how that would go) and we would have to get her to take her coat off and I would need to roll down the window to get the shot. Taking everything into account, and with the professionals leaving the final decision to us (which was so respectful and appreciated), we decided that the car was the better option in that it was safer and we felt we could work with the other issues if need be. 

Once again RJC shocked us all. She willingly took off her coat, put her DVD player on her lap and was fine with her "friend" sitting next to her. Once she was settled I opened the window and the Physician's Assistant dashed out, RJC closed her eyes and counted to three and quickly (and I mean super quickly) she got her vaccination and that was that. Everyone cheered, she got hugs and she was smiling so much! We thanked everyone a zillion times and we were just beyond shocked at how smoothly it went. We immediately went to her favorite cupcake store so she could choose her reward and all was well. We knew we had made the correct decision to take her to a place where they knew us and clearly understood our family and most importantly it was where they would be as flexible as necessary. 

I imagine that there are many families in need of booster shots who had previous success at the special needs clinic and now find themselves to be on their own. They may have a child who cannot tolerate crowds, or loud noises or lights, or who needs more physical space than the typical site offers, or who cannot stand in line and wait appropriately (we did all of our paperwork ahead of time in the privacy of my car) or who would be too worried to attempt this in a public space because they were unsure of their child's reaction to the situation.  They simply may not have the time to organize the visit as it is not a matter of simply signing up like the general public. They may need support personnel and not know how to go about getting that help.

We are beyond grateful that we were able to get this done for RJC in safe manner.  We are beyond grateful that we found a physician who was able to be flexible and non-judgmental and simply have the goal of getting RJC vaccinated one way or another. 

We are beyond grateful that our state was willing to provide us with trained personnel who were also flexible and communicated openly with us so we could make appropriate decisions for our gal.

Since then I was introduced via email to the person who is in charge of the vaccination program in our state and I shared our story in the hopes that we can start to make a difference for all of the families who need support in accessing appropriate health care for their loved ones - whatever that may look like. Not just now but post-pandemic as well, and not just for vaccinations but for whatever is needed - mental health support included. His reply was quite empathetic and appreciative of the effort we made to get this done and I took heart when reading his reply that this was an issue he will discuss with his team. If our country is going to be a leader in this world then we need to show we care about and make appropriate accommodations for everyone as necessary. This includes appropriate training for various personnel and sites that offer appropriate accommodations as needed. It will not be easy and it will not be a "quick fix" but it should be a long-term goal across our country.

This was exhausting - mentally and physically - but I will do this again and again if necessary. My girl's life matters just as much as anyone else's and she deserves access to health care that is appropriate for her. 

We can do this but we need to do this together. 

A Vaccinated Life - A Brief Update

It has been a while since I have updated the blog and about three months since RJC was vaccinated. The world is slowly opening up to her. We are still not an indoor with crowds sort of family and in general we prefer to be outdoors. RJC is very good with wearing her mask as at this point it has become routine for her, so going into stores for quick runs is now an option. 

By far, the biggest bonus of her being vaccinated is that she is back to going to the farm! She's there 3 days per week, for 5(ish) hours a day. It seems that for her it's as though she had not been away for a year and a half. I think it was very helpful that J, the person who she spends her time with on the farm, was in touch with her via mail during these many months. She fell right back into her general routine and now there are some added opportunities to her day - music therapy and therapeutic horseback riding. She is quite tired at the end of these farm days, often falling asleep on our living room couch by 8:30PM!

For me, it's been really nice to know that she is out and about, socializing with somebody other than me, her dad, or her sister. It gives her new opportunities for communication, adds variety to her day, lets her expend some energy while getting exercise, and allows for some independence. This is the perfect setting for her. Supervised independence while learning and practicing new useful tasks keeps her brain sharp and her body moving. What better way to spend time? There are tasks that are done over and over again and she enjoys the routine of doing them.

The other two weekdays we are still together. We take walks (we are up to 1.5 miles - an occasional 2 mile walk), we take car rides, we bake and do art, we have visits with friends (still mostly outdoors) and she helps me with household chores. She loves to organize our refrigerator and food items in the closet. A huge bonus is that we have noticed improved communication skills since the pandemic started. Her vocabulary has expanded and her comprehension is a better (though still tricky and we really need to focus on making sure we find ways to help her understand). The one factor that seems to make a difference is that she seems very willing, even eager at times, to make an effort to engage with us. One of the biggest accomplishments (which I'd say is still 50/50 and sometimes we are unsure if she is responding accurately) is being able to answer "why" questions. For example, sometimes she will just burst out laughing. In the past when we asked "Why are you laughing?" she'd automatically reply "I am laughing because I'm silly." Now when she replies that way we say, "Try again" so she will stop, think, and slowly say something like, "Because Tina went school drop book." Then I reply, "Oh no! Tina went to school and dropped her books!" Then RJC says, "Yes! Tina went to school and dropped her books! Silly!"  Of course it helps that I know she is talking about one of the characters from one of her Barney the Dinosaur videos. Still, with this general understanding of "why...because" she is now willing to try and communicate what she is thinking about and we can help her with her grammar. It's really amazing that we are here after 29 years. Amazing. 

This pandemic has been a bit of a mixed blessing for her, which I realize sounds ridiculous and perhaps even a bit sad.  But the reality is that she has adjusted to this new way of life which is of course very good because it is her reality, but also sad that she has given up even asking about many of her previously favorite activities. Perhaps it is the nature of her autism that makes it easy for her to be home, play on her iPad, obsess over her calendar, and enjoy hanging out with me, her dad, and her sister who comes by when she can. She does not ask to go to so many of the places she used to love. I do not remember the last time she asked to go to the Aquarium or to her favorite park. She does not appear to miss the Day Program she used to go to every day in the least. Maybe this has given us all an opportunity to rethink what she needs in her life and what makes her happy. Pre-Covid I felt like it was important for her to be with peers so we sent her to a program every day. While I do think that had its benefits (and practically speaking I was working at the time), I no longer feel like that it is necessarily a main goal (unless a really great opportunity was to present itself). I've always thought it was stressful for her to be with groups of people and I do believe without that daily stress she is more relaxed and happier. If I have learned anything in the last year and a half, I have learned to be open to change and go with the flow - because we never know what is to come.

I am so very grateful that we were able to get her vaccinated and open up her world a bit again. 

These are still crazy times for sure but I do feel as though our gal is a generally happy gal. 

And that makes me a happy mom. 

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.