anxiety,  autism,  COVID life

It takes a village to get a vaccine

Vaccines have always been a tricky thing with J. No, not in the “do vaccines cause autism way” (just to clarify for the umpteen millionth time VACCINES DO NOT CAUSE AUTISM. THEY DON’T. PERIOD.), J has a lot of anxiety over needles. There was a stretch in his vaccine schedule where J was able to master his mindfulness techniques and aced those vaccines with a few deep breaths, but this last October J wasn’t able to channel those skills well enough to be successful. J and I sat in a cramped room in the clinic with our masks on for a full hour, practicing those breathing skills, taking short walking breaks every 5 minutes, but by the end of the hour, he just wasn’t able to make it. We were forced to hold him down and have another nurse administer the shot. It was one of the worst experiences I’ve had. J was kicking and screaming and thrashing so hard, he didn’t even feel the shot go in. The nurses and I were exhausted after the whole ordeal. That meningococcal shot took literal blood, sweat, and tears to execute.

A few weeks later we started small conversations about the importance of vaccines and how a vaccine was going to help us end COVID. J was initially really torn over this. He absolutely hates COVID and how it’s disrupted our lives for the last year. He also absolutely hates shots. Luckily he hates COVID more, and so we were able to at least plant the seed in his brain that taking the vaccine was something he could actively do to help end this pandemic. But anxiety loves uncertainty and so J’s question almost daily was “when are we going to get the vaccine?” and we honestly couldn’t give him a good answer.

J, Steve, and W in Minneapolis for our short 48 hour get away out of Fargo for Spring Break

“Sometime in the spring or summer” is all we could tell him.

Then vaccine rollout began with Group 1 in January and February. I talked to J’s special ed teacher about making a social story about vaccines, hoping that having school reinforcement along with home conversations would help reduce his anxiety. By the way things were going, I thought we’d have another 6 months before we’d have to get J ready for the vaccine (which was now 2 shots). When I told J that Grandma Gail got her vaccine and just had one more until she was safe, he looked terrified and said, “What–2 shots!?”

We had a new problem. There was no way J was going to take 2 shots.

W got her vaccine Tuesday. Since it was the Pfizer, she will be back for her second in a few weeks. I just saw in the news too that Pfizer is looking really good for teens!

March came around and so did a wave of vaccine rollout. Steve and I got our shots (I managed to get a shot with group 2 because they were trying to get rid of the day’s extra vaccine when Steve got his shot) and all of a sudden a few weeks later, everyone 16 and up was eligible. After months and months of waiting, it was go time.

I asked J’s special ed teacher to start reviewing the vaccine social story again, and we made multiple calls to Sanford (our health care provider) to see if we could make something work for a special needs 18 year old: a private room so if he had another panic attack it wouldn’t disrupt the whole vaccination flow of a pharmacy or empty Gordman’s, and–if at all possible–the one shot Johnson and Johnson. While Sanford said they could try to meet J’s needs, they didn’t have the Johnson and Johnson available. And while I totally understand, that in a pandemic “you get what you get” (Steve got assigned the J&J and I got assigned the Pfizer because that’s what they had available to give us that day), we were really REALLY hoping for the J&J. I knew, without a doubt, that after one dose, we would never get J back again for the second.

That’s when the village came in clutch for us. NDSU was having a vaccination blitz (of only Johnson and Johnson), facilitated by Sanford for faculty and staff. With a lot of phone calls (help from a good friend at Sanford and some very kind people) we were able to explain J’s special needs situation (especially about the need for one dose) and got a last second appointment at the NDSU blitz for J. J’s special ed teacher went over the vaccine story again the day before the appointment and on Wednesday at 1:00 (two hours before his appointment), we told J that “today was the day.” Immediately, his anxiety went through the roof. We read the school social story again and then I decided that we needed to write an additional one–specific to the NDSU experience. I pulled out my phone and we watched (probably 50 times) my friend’s daughter who took the vaccine a few weeks earlier (as a trial for the under 16 group). We packed up a bag of jelly beans and a water bottle and went.

J’s second social story. The “cry in the car and eat jelly beans cracks me up!” because I’ve been known to cry in the car after a few times myself. Maybe I need to keep the car stocked with jelly beans for those times.

The anxiety flared up while we waited in line. The longer we waited, the worse it got, even though we had the social story in front of us. Finally, when J was about to be seated, he started melting down and I had flashbacks of October’s doctor’s visit all over again. Except this wasn’t a doctor’s office. This was a basketball arena with about 100 people behind us. J sat in the chair and started bawling and yelling and I started the “remember the deep breaths,” but it was no good. Then, out of nowhere, a nurse lecturer came up and introduced herself to J, started asking him questions, and kept asking really gently and calmly “just look at me, okay?” and something happened. It broke the anxiety trance. All of a sudden, J was struggling between answering her questions and saying “just take deep breaths” and taking deep breaths. Between breathing and answering her questions, the other nurse administered the vaccine and it was over. No restraints, no kicking, no tears. It was done. And we were all relieved it was done.

Hooray for J!

I’m not sure how many people it took in the end for J to get his vaccine. Between all of the people we talked to over the phone who were doing their best to try to make it work for J, to our friends and teachers who kept encouraging J that he could do it, to the wonderful nurse lecturer who was able to get J to refocus. But like almost everything else in life, it took a village. And I’m so grateful for our village. I know J is too. He’s so dang proud that he’s got his vaccine (and is so relieved that he got one and keeps reminding his sister that she has to get two 🙂 )

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2 Comments

  • Crystal

    This story is lovely. You should submit it somewhere. I love the social story he wrote for himself. I think more people need one just like it. Also I’m so glad he was able to get Johnson and Johnson. My 36 year old sister hates shots as well and she felt so lucky to get that version! Plus one and done, immunity in two weeks!