Like most things, getting vaccinated is complicated for Ben. Ben is almost 20 years old, with profound autism/nonverbal.
Prior Proper Preparation!
To help prepare Ben for a vaccination, Sue created a picture story so there’s no surprises.
Here’s a picture of the car, the hospital, the waiting area, the room where we get vaccinated.
We sit very still, we push up our sleeve, alcohol wipe, still sit still, small pinch count to 3 and its over! Bandaid and then Shake Shack.
We’ve talked about why we get vaccinated, not sure whether Ben truly understands, but presuming competence all the same. He understands more than you think.
Sue and I talked through the various scenarios of what could happen and we had a Plan B, C and D.
The day arrives!
We park in the hospital’s valet parking to avoid an exposure to unexpected noises/ refusal to walk situation.
At the clinic, they ran out of Johnson and Johnson (we thought it was the best option since it’s one and done), so we decided to just do a walk-through to get Ben used to the staff and rooms and let the staff get used to Ben.
“You’ll need someone who can bob and weave” I tell them helpfully. Ben isn’t aggressive “but he might grab your arm” Sue adds “and leave room around him in case he bolts up quickly”. Instead of appearing relieved we were leaving, they assured us all would go smoothly. They are also going to bring in the Child Life Unit (aka the Autism Taskforce) that would pull out all the stops for us.
The second try!
We rescheduled for Saturday. In the meantime, J&J was pulled off the market and the plan changed to one shot of Pfizer which was better than nothing. We could always try for a second shot but we thought it unlikely.
Saturday came and we tried valet again but they are closed on the weekend. Who knew? Luckily we found a good handicapped parking spot. So far so good. We checked in with security and were met by Shelby from Child Life who told us we would be going to a quiet area with a team who is experienced. Great!
The room we went in had a bed, chairs and calm stars projected onto the ceiling. They had some squishy toys for Ben, a vibrating bee that distracts from injection pain, and a numbing cream. They were open to anything. He could be on the bed, on the chair, whatever. Flexibility is key. The staff was friendly and super nice to Ben. It didn’t hurt that Shelby, the Child Life staff member, was very pretty.
Ben seemed a little nervous - I wondered if he remembered his EEG seizure study that took place 10 years ago in this very room. It took 4 of us to keep him from pulling off the electrodes. And this isn’t the room in our picture story.
Still optimistic, we pretended that I was getting the shot first. I remember in swimming classes growing up that it was a lot easier being the 4th or 5th person to try to dive than the first person (or would you rather go first?). Let Ben watch others first before his turn.
For Ben’s turn he was fine with the alcohol wipe. We all agreed to keep the directions simple without a lot of people talking. But should we tell Ben the shot is coming? Will this increase his anxiety?
In the story we read to him over and over, he knows the shot is coming after the alcohol wipe. Do we still announce Here it comes! Or should we just do it? It’s a tough call as we don’t want to make him more nervous. What do you prefer for you? Just get it over with- without a lot of warning? Or a narrative with every step? And what would Ben prefer?
We opted to just go for it- fast as possible. The moment the needle touched his skin he jumped up, grabbed the technician’s arm and screamed. After much time calming down and trying again- this time with a narrative- it just wasn’t going to happen.
During the debriefing, we agreed it wouldn’t have worked either way. He just couldn’t settle into it. He was too anxious. We’ve seen this before. He won’t let us cut his nails- we even file his toe nails. Anxiety is a fierce beast. At 6', 260 lbs, holding down his arm is not an option.
We talked about other options. Sedation at home with a late night mobile unit might work if we could convince them to do it while he slept. I don’t like this option either as it could set a dangerous precedent. Will he fear going to sleep in the future?
We could sedate and go back to the hospital but sedation with Ben doesn’t work like you think it will. He may seem sleepy but once he knows what’s coming, the adrenaline kicks in and it’s as if the meds don’t exist. He is big and strong so there is no holding his arm down.
So as I am waiting to hear back from the mobile unit (do we qualify as “homebound”?) and waiting to hear back from the psychiatrist re: what medication to use, I wonder about other options.
Dear Pfizer, Moderna and Johnson&Johnson,
Can we please convert the vaccination into an edible that tastes like chocolate? J&J- this is especially for you to develop as you really need a killer idea for your come back.