Ben is a good looking 20 year old guy. He has profound autism and an intellectual disability which, for him, means that he cannot talk, read, spell or say his name. He is not aggressive to others but has some repetitive behaviors, such as hitting his nose, wringing his hands and loud vocals. “Stims” can mean different things at different times. Sometimes they mean he is anxious, nervous or just stuck in his current thought cycle.
He can understand many things and uses his iPad to communicate his wants and needs.
For example, he uses his iPad to say he wants to go to Park Lane Pizza for a pizza (even tell you what kind he wants- buffalo chicken or maybe pepperoni). He can request to visit his grandparents or go to the pool However, he can’t tell you if he has a headache or why he is limping.
He can dress himself (often inside out and backwards) but does not understand the dangers that surround all of us. He will dart into a parking lot and will dash in front of traffic, open a moving car door, or touch a hot stove. He adores water and will walk into a river in the winter if the mood strikes. Other times he will walk right by it.
Ben is unpredictable. He may suddenly take food off the plate of a stranger at a restaurant, but then again, he may not. Ben is over 18 which brings new fears regarding his unpredictability. Do you understand your rights as I have read them to you? No, he doesn’t.
He needs 1:1 support 24/7. Ben lives at home with his parents, 14 year old sister and his pandemic puppy. He goes to a special autism school during the day which he will continue to attend until he is 22 years old. He has 2 caregivers that help after school and on weekends. He looks forward to outings with them in the afternoon. Outings as a family without the help of caregivers can be most difficult.
Ben hasn’t had the need for an injection since he was small so we weren’t sure how he would react to the vaccination. We met as a team and discussed vaccination scenarios. The team included his doctor, psychiatrist, parents, case manager, 2 caregivers and his grandparents. We also discussed how we wanted to put a process in place that will be the best for Ben and we wanted to start with the least invasive approach. We want Ben to be part of the plan and include him as best we could but also know that talk about the vaccination makes him very nervous. We want to give him control and choices. As we will find out, a good plan is worthless if it doesn’t work.
Many Attempts To Get the Vaccination
Our first couple of vaccination attempts were at CCMC, a hospital in Hartford, CT.
Coincidently, in February we were at the hospital with an appointment for Ben to be put under anesthesia for dental work. We reached out to the clinic and tried to get a shot while he was still sedated. This would have made sense but the hospital for various reasons said no.
We made another attempt but learned that Johnson & Johnson was not being offered so we opted to take a tour with Ben to help with his anxiety. We took pictures and our caregiver, Sue, made a detailed social story for Ben with a picture for each step. The staff was wonderful and told us they would have someone from Child Life Services (aka the Autism Taskforce) there to assist us the next time.
Our third trip to the hospital, while a great experience, was also unsuccessful. The hospital has a specialist who is familiar with autism who would help guide us through the process. The specialist has seen what works, doesn’t work, and also recognized the old adage of When You Know One Person With Autism, You Know One Person With Autism. Everyone is so different. Some people hate to be touched, while others find a bear hug comforting.
It was decided Ben might prefer a room separate from the clinic- the room was perfect. Quiet, soft music, dimly lit, stars on the ceiling, option of chair or bed, limited people. The specialist had EMLA numbing cream, a buzzybee distractor, squishy sensory toys, games, etc. We had read Ben’s social story on his iPad over and over. He knew what to expect. We also knew he is afraid of pain like everyone. But could he overcome his anxiety? The social story said Count to 3 and it would be done. 1….2.…3. We practiced and practiced. He seemed ready. Alcohol swabs complete. You’re doing a great job! Sit very still…
But as the nurse moved towards his shoulder he grabbed her hand and jumped up.
At 6’1”, 260 lbs, there is no holding him back. We waiting until he was calm again. His anxiety was winning out. Perhaps distraction? We didn’t want to trick him. He looks to us with trust. But if you are afraid, don’t you just want to get it over with?
We wrestled with this and ultimately tried to distract him but of course he knew what was coming. He kept looking at the nurse fearfully and wouldn’t let her near him. We were asked if we wanted Ben to be restrained. He was so nervous. His eyes were pleading with us to leave, go home. We left.
Unfortunately, the COVID-19 pandemic has disproportionately impacted people with disabilities. Many people with disabilities are at higher risk because of underlying conditions and/or difficulty engaging in preventative measures (can’t wear a mask or are injection averse). As a result, there are higher death rates for people with developmental disorders and intellectual disabilities. We are determined to get Ben vaccinated.
What do we do now?
This isn’t just about getting the Covid vaccination. We are establishing the protocol used for Ben, the adult, to get blood drawn or other medical procedures. We want to give Ben choices and control over his own body as much as possible. We don’t want him to be traumatized with each procedure. The plan we put into place today will become part of his future journey. We felt his future care weighing on our shoulders and we weren’t gonna goof it up for him. We got you Ben.
A Mobile Housecall
I contacted the Mobile Unit- a new unit set up to vaccinate the homebound using the Johnson & Johnson shot (one and done!). While Ben isn’t homebound, would they consider coming over to our house while Ben is asleep? Late at night?
After much discussion with our doctor, psychiatrist, DDS caseworker and Mobile Unit coordinator, we are told the latest they can come is 2:00 p.m., and we should try a melatonin combined with an Ativan an hour before. At this point, the vaccination lists have leveled out and the Mobile Unit can only make an appointment with us if there are 4 other patients that day. Weeks go by with no appointment and the coordinator cannot commit that an appointment will be forthcoming. They will not come out for only one patient.
A Clinic Specializing in Treating People with Disabilities
In the weeks that have gone by, the long waitlists have all but disappeared and a few clinics were given a grant to establish protocols for people with disabilities. In CT, the CT Council for Developmental Disabilities provided a grant to a clinic set up at the Vernon Senior Center.
We spoke with Renee from Opportunity Works who is consulting with the clinic. The needles and equipment will be behind a curtain. The staff will be wearing street clothes. If we want, Disney movies will be playing on the TV. The room will have a calm vibe. We are hopeful. We come up with a Plan A and Plan B. We really need this to work. Ben is heading to a special overnight camp that he loves in a month and he needs to be vaccinated.
Plan A is a calm, solid approach. We distract Ben by filing the nails on his left hand, while the doctor comes from behind and administers the injection in his right shoulder. The doctor is confident Plan A will work. We are less confident because Ben is very aware of his surroundings.
Plan B is a rip-off-the-bandaid approach. If Plan At fails, 2 PMT (Physical Management Trained) professionals will jump in and gently restrain Ben while the doctor administers the injection and then immediately back off. Everyone is afraid of liability with this approach.
The clinic will not provide the help. The consultant will not provide the help. Is Ben the first patient who may need this? Finally, our caseworker, Jason, steps up and arranges for 2 PMT (Physical Management Trained) professionals to attend the clinic with us but the disability grant will not contribute to their cost. Fine.
What is PMT Restraint?
This sounds frightening. Big, scary, one-flew-over-the-cuckoos-nest guys dressed in white. No one wants this. We don’t want this. Ben doesn’t want this. Ben’s grandparents, who are also there for support, don’t want this. We sit down as a group with the 2 PMT (Physical Management Trained) guys and walk through the process.
Image: Jack Nicholson in One Flew Over The Cuckoo's Nest
We tell them about Ben and they talk about their experience with individuals with special needs. They are funny and confident. We like them. We talk about who will stand where, the guys demonstrate the hold on me and explain how the technique prevents injury. I try to move around and struggle- it’s true, it doesn’t hurt. I imagined them tightening their grips, causing bruises but that is not how the restraint works. They don’t tighten their grips. Their hold makes it hard for me to move but I’m not in pain. And now it’s actually not that scary. Will Ben see it that way?
The guys meet Ben and he shows them his iPad. We all get comfortable. Taking the time to discuss and understand what exactly is a PMT restraint is so important. We are not just holding Ben’s arms down. There is a specific way of holding his arms that prevents him (and those around him) from being hurt.
Restraint done wrong can, at worst ,cause injury and death and, at best, cause trauma for the individual and their family. But talking it all out made it less scary to us. These weren’t just guys- they were Mark and Ephron. And they weren’t just violently holding Ben down or sitting on him. They were PMT professionals conducting a very quick, gentle restraint to help Ben get a life saving vaccination in as quick and painless a way as possible.
As you can likely guess, Plan A (the Great Distraction) doesn’t work. As soon as the needle touches Ben’s skin, he jumps up. Some people with autism are less sensitive to pain. Not Ben. The doctor didn’t want the PMT guys around for Plan A so now Ben is suspicious, fearful and walking around. We aren’t sure how to get him to sit back down when one of the guys sees Ben’s sign language for “car”.
“We can do it in the car if he is more comfortable”. Luckily the doctor was amenable. Ben sat in the back seat and Mark and Ephron sat on either side. When the doctor was ready, they said to Ben "Ben, we're going to stabilize your arms so you don't get hurt" and they each wrapped their arms around Ben's arms and started counting to 3. The doctor leaned in and the shot was complete before they got to 3. They let go and High Fives were flying all around. Ben was proud. He was smiling and high fiving Mark and Ephron and Jason and the doctor. Everyone was in a pretty good mood. We had approached it as a team and it was over! Ben was happy and used his ipad to say “pizza” so of course we celebrated with pizza.
The doctor later told us that he was willing to go to our house at 11 p.m. that night if we were unable to get the vaccination. Everyone was truly rooting for Ben. Moments like this always make me feel better about Ben’s future.
I’ll admit I am jealous to see people walk into CVS for the vaccination and walk out with a bandaid. I don’t wish for anyone to have to be restrained. But if it’s necessary to receive a medical procedure, shouldn’t there be a humane protocol designed to prevent trauma?
Best Practices
If we were to write a Best Practices for a clinic specializing in care for the disabled, I would include some employees with PMT restraint training. Time would be set aside to determine (1) if a PMT gentle restraint is necessary and (2) if the individual and their family understand and agree to the process. Taking the time to humanize the participants and explaining what to expect can make all the difference.
Our reality is that our adult son will likely need to be restrained for medical procedures such as a vaccination. My hope is that by talking about his experience and taking the PMT restraint process out of the dark ages we can create a calmer and more humane health care protocol for people like him.