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.
