While others debate the pros and cons of the COVID-19 vaccine, some desperate special needs families hopelessly search for resources to get their kids vaccinated.
By Shiri Ronen-Attia
Some time back in February 2021 I got a call from Boston Children’s Hospital that my then sixteen-year-old son was eligible for the COVID-19 vaccine and that they had a vaccine ready and waiting for him.
This was great news! I had been watching all the news about vaccines carefully and was very interested in getting him vaccinated as quickly as possible. There was just one problem…
When I asked the nice lady on the phone if they were equipped to administer the vaccine to someone like my son who can be strong and uncooperative, she said she was not sure and would have to check with his neurologist.
The neurologist’s response was disheartening. “I’m sorry,” she said. “Since he can’t sit still or sit in your lap we currently don’t have the ability to support your son’s needs at the hospital.”
Why is this so hard? My son is seventeen, bigger and stronger than most of his caregivers. He is nonverbal, autistic, and totally blind and can be (and usually is) a very sweet and happy young man, but when he is in an uncomfortable or unpredictable situation, his mood can change quickly.
Doctors’ offices are probably the worst places for him. He has terrible anxiety about doctors and all medical procedures, even something as simple as a stethoscope to his chest.
He can become the Incredible Hulk when he’s upset, and suddenly he is so strong and almost impossible to control. He might hit himself or attack others around him. He panics and goes into pure fight or flight mode. He doesn’t understand exactly what is happening and can grow very scared in these situations.
How Many Times Are You Told “No” Before You Give Up?
In all the months since February I received multiple reminders from Boston Children’s checking in to see why I hadn’t yet brought my son in for his vaccine. They seemed to forget that the problem was with their inability to provide the level of support he would need, not my hesitancy.
I checked every resource available to try to find a place that would be able to support his needs and successfully administer the two dose Pfizer vaccine.
His pediatrician had no answers, his neurologist had no answers (even though she did advocate for hospital administration to create a program for patients like my son), even his special needs school couldn’t offer any resources.
I talked with the town health board, asked about home options, and tried to find out what other special needs families with a similar profile were doing. Unfortunately, I got nowhere.
After much consideration I came to the conclusion that our best chance for success would be at my son’s special needs school. The staff there know him and are comfortable with him, they are trained in both behavioral support and medical needs. And maybe even more importantly, unlike in a doctor’s office or clinic, my son is comfortable at school and trusts his classroom staff.
Unfortunately they weren’t offering vaccines at school. I got on the phone and made some calls. And more calls. And sent some emails. Eventually after a lot of pressure, I finally convinced the administration at his school to provide vaccines for all students who were eligible and wanted it.
I sent my son to school that day wearing a tank top and I felt optimistic that he would finally receive his first dose, but to my surprise I got a call from the school’s social worker saying that they tried, but it didn’t work out. They couldn’t vaccinate him and they were not going to try again.
I was extremely disappointed. I had fully expected the staff at his school to be able to manage his behavioral needs.
And that’s when I gave up.
There’s Always Another Answer
Well, I gave up trying to get him his first dose while awake anyway.
I knew that in a few months he was due for a dental cleaning and X-ray appointment, which is done under anesthesia, and I decided to try to combine that with the vaccine. Surely we can vaccinate the Incredible Hulk while he’s anesthetized!
While planning for the dental procedure, his pediatrician sent the hospital, a month in advance, all the blood work she wanted to have tested while he was under anesthesia and included the COVID, flu, and meningitis vaccines.
I called the hospital a week prior to the scheduled appointment to make sure everything was all set with the vaccines, and to my big surprise (but why should I still be surprised at this point?) was told they didn’t have the COVID-19 vaccine and would not be administering it. They said the hospital just didn’t have access to vaccines anymore.
By this point it was October and vaccines were widely available, so that answer didn’t seem appropriate. I questioned them, got transferred around, and eventually made it to the manager and told her very directly that it’s either them or nothing at all for my son. We simply didn’t have any other options.
The operating room called me back and told me that if I brought a vial of the Pfizer vaccine with me to our appointment they could administer it, but that I needed to supply it myself. Have you ever heard of such a thing? To say that answer surprised me is an understatement.
When I tried to inquire with the nurse where exactly she thought I could get the vaccine to bring to the operating room, her reply was to call CVS or Walgreens with a prescription from our pediatrician and they will give it to me.
Just from my general knowledge I knew that it wasn’t that simple and that at the very least the vaccines had to be kept at a very specific temperature and not something I can just take with me from point A to point B.
To play along I called a couple pharmacies and even sent a message to his pediatrician to ask if this was even a possibility or just another runaround tactic.
Needless to say, I was turned down right away and was told that it’s not even a slight possibility.
When I called the hospital nurse again to confront her with the responses all she said was, “That’s what the hospital pharmacist told me to tell you.”
Since I was so frustrated at that point, I called the school social worker (the same one that called me a few months earlier when the school vaccine attempt failed) and told her that I give up and if she wants she can contact the operating room nurse and hopefully explain the situation better and find him a vaccine.
Apparently she came through! Somehow the hospital did manage to get the vaccine and my son received the first dose while sedated. He was tired the next day, but otherwise was his happy self again in no time. Score: COVID 0, Mom 1.
Who Says You Should Stop at Good Enough?
At that point, I was thinking he’s had one dose and that’s good enough. One is better than none, right?
But then in November disability-friendly vaccination sites were finally introduced. I guess it wasn’t just us having this problem! His pediatrician, neurologist and even school all made sure I heard about this initiative.
I signed him up and talked with the organizers to make sure they could help and understood his level. I was promised a separate room, behavior support and that they would be ready.
At the same time I was also introduced to a private behavior specialist, Rui Carreiro, with twenty-five years experience advocating for and working with children and adults with autism spectrum disorder. Rui said he could join us at the vaccination site and assist.
We met with Rui a few times beforehand so we could develop our strategic plan and he did indeed join us for the weekend appointment at the vaccination site.
This should now be the perfect environment! A separate room (oh, actually that wasn’t available), a behavior specialist on site (oops, they must have been on lunch break when we got there), and everyone prepared for his level of needs (seems they weren’t as prepared as they thought).
Everyone around us at the vaccination clinic had the “pleasure“ of hearing and witnessing a very scared and loud teen who was fighting as hard as he could.
Rui was our golden ticket. He did not give up quickly and, although he admitted that he was surprised by my son’s level of resistance, he managed to change his approach in the moment. He had planned to hold my son for the vaccine, but when that proved too difficult, Rui was persistent and was able to verbally coach my son to have a calm body for the requisite five seconds it takes to administer one shot. After it was all over, Rui gave full credit to my son for following his prompts and not moving despite being scared and in an unknown place.
And now I can finally say that, ten months after initially being offered the vaccine, my son is fully vaccinated.
Why it took ten months I will never understand. I thought living in a state with so many advanced and world-renowned medical hospitals, facilities and schools nearby there would be more options for the special needs population.
Why it took so many arguments with the school, hospital and others and why it worked out only when I came with a privately paid, experienced person to a disability-friendly site that should have been offered long ago still makes no sense to me.
Extra time is not something as a special needs mother I have to spare, but unfortunately had to spend way too much to get this done.
I can only hope that six months from now, giving him the booster will be an easier mission…