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.
