It’s very rare that someone calls the house phone. It’s even rarer for someone to call the house phone and ask for Ronan. When those calls for my son who has severe autism do come in, I am immediately apprehensive. That feeling came over me last week when a young woman rang the house phone and asked to speak to Ronan. Quickly, I thought of several options. I could…
1--toy with her,
“Ronan? You wanna to talk to him? Ok, hold on…”
Hey, Rone. Come here, bud. You got a phone call.
2--be rude to her,
“Are you serious? He can’t talk. Who is this anyway?!”
3--or be polite to her.
“Oh, hey. Yeah, Ronan is nonverbal. But I’m his Mom. Can I help you with something?”
I chose option 3.
I didn’t recognize the voice but had an idea of why this person was calling. She said she was trying to get a hold of Ronan to remind him of an upcoming appointment. After I shared that Ronan couldn’t speak, I could hear her typing in the background. I assumed that she was adding a note to his profile: patient unable to talk. When she came back on the line, she shared that the appointment would be at a clinic he’s already been to, but Ronan would be seeing a new provider. She wanted to know if he, or now I, wanted to keep that appointment. I said, yes, thank you. The young woman confirmed everything and said that the doctor will look forward to seeing us both on Tuesday afternoon.
Not until well after I hung up did I realize that I didn’t have to answer the usual hundreds of COVID19-related questions I’ve had to answer before previous appointments. Those questions have been part of life for quite some time: Are you sick? Do you have a fever? Chills? Cough? Sore throat? Have you been diagnosed with COVID19 in the last 2 weeks? Have you come in contact with a person who tested positive for COVID19 in the last 2 weeks? It was nice to have a shorter conversation and one that reminded me of easier days.
When we arrived to the clinic, Ronan did not want to go in. That’s not surprising and can cause some delay. He likes his caregivers, especially the ones he is used to seeing. But he’s never a big fan of going into these sorts of places. It sometimes takes loads of encouragement to get him out of the car and then for him to walk through the door. This time, it took some extra effort, but once he got over the threshold, he knew the expectations – check in at the front desk, wait for his name to be called, then go to the exam room. After finally walking in, he waited perfectly in the waiting room before he was called back.
A nurse opened the door and said, “Ronan? Hi, come with me. I’m going to take you to the room.” Reaching for my hand, Ronan and I stood up together and followed the nurse. I’m so glad that no matter which clinic we’re in, Ronan has that part of the routine down.
The nurse spoke to Ronan and to me, something that always impresses me. She hadn’t worked with us yet but communicated directly to my nonverbal son. “Okay, time for you to get on the scale. Stand here once you see the zero. Hold on…okay, now you can stand on it. Good! Next, I need you to turn around on the scale…that’s right, turn again. Okay, stand tall. I’m going to bring this down to your head and measure you. That’s it…perfect. You can sit down now,” she said as she guided Ronan toward the exam table.
Never having seen this nurse when I’d been there with my other children, I was grateful for helping set Ronan at ease. I wasn’t as grateful when the questions started. I was even less pleased when I saw her bright pink bracelet—not out of judgement, but out of honest worry. As she rattled off a list of questions in my direction, I had so many I wanted to ask her. Why? Why’d you get the vaccine? Did you research it thoroughly, or did you blindly trust? Were you forced to get it, or was it a choice? Did you have a reaction? If so, how severe was it? All the restrictions haven’t been lift yet, even with a vaccine. Do you feel safer/healthier/freer now that you’re vaccinated? Was it worth it? I had so many things I wanted to ask, but I kept my mouth shut.
“So, Ronan’s here for an annual check-up,” the young nurse started. “I have a few questions. Mom, has Ronan had the flu shot?”
Flu shot? I thought to myself, Y’all are still talking about the flu shot?! I kept my mouth shut about that, too, and simply answered the question:
Nope. He had a reaction to one years ago.
“So he doesn’t do those anymore?”
“Oh, okay. I understand. Does he have any new allergies?”
“Has he had the Covid shot?”
“Are you thinking about getting one?”
“Is there any paperwork you need to have the doctor fill out after her visit with you today?”
That was a very thoughtful question – the nurse, in looking at Ronan’s file, knew we’d needed papers to be signed by the previous provider. I was thankful that the opportunity was available should I have brought any new documents that day. But my answer was the same as the ones I’d just offered.
But thank you for asking.
Years ago I would’ve offered more detailed answers to some of the questions I was asked. That day, I decided that one-syllable replys would be my go-to response. Why? Because sometimes less is more. Less is best in certain situations. Less is perfect with certain new people who don’t need a long, sordid story. The basics would be sufficient for the type of appointment I had requested anyway. The basics, and nothing more, would be what I offered until I absolutely needed to open my mouth and share something else. Those quick answers thankfully satisfied the nurse.
They satisfied the doctor, too. Never once did she ask about the declined flu shot. Never once did she assume Ronan needed the COVID vaccine. Never once did she belittle or outrageously pressure me into any other unnecessary liability-free vaccines either. She did only what we came there to have done. She provided my nonverbal, medically complicated son a regular check-up.
Since it had been a year since we were in their practice, she suggested we order labs. Ronan’s specialists order labs rather frequently, but it was a good idea to get some basic ones done that day. Supplements to trial to help with some minor issues we’ve been noticing were suggested. Once we get the lab results back and we get a bigger picture of what else may be going on we’ll tweak that supplement list. I’m thankful that some issues can be managed from home and that this doctor prefers a gentler approach. Drugs could be an option but are never her first suggestion.
I’m mostly grateful that we could review as many things as we did – while not at the same level of practice that many of Ronan’s specialists’ are, this doctor was already quite knowledgeable on several of the major problems we’ve faced in the past. Having a positive relationship with her and her team helped. That’s why I comfortably agreed with her treatment plan. In return, she offered to read up on a potential treatment I’d recently read about and shared with her. She then promised to be available should anything come up – including any paperwork that we might need to have signed. Aware that paperwork is part of raising a child with special needs, like therapy referrals and medication overrides, we’ve recently entered the world of guardianship of an adult child with special needs. She was more than understanding that life for us can be a bit more stressful, so I was happy to hear her offer only support during the appointment.
On our way out, I thanked the staff who helped us. As much as I’d hoped that Ronan could sit through a blood draw, we’ll have to come back for that. I can do a lot of things for my son, but getting him to remain completely calm for lab work is something I can’t do alone. I tried. And the sweet lab technicians tried, too. After all their encouragement, though, Ronan would still not go with them. He knew the expectations for that part of the appointment, but he decided that no, he could not do it. Just like my simple answers earlier, his simple reply to my request to do the labs was a signed no. Then he waved bye. Telling the overly kind ladies that we’d have to come back another day, they praised Ronan for trying and promised they’d be there to help him next time. I said thank you, and Ronan signed thank you.
I didn’t have too many expectations for that day’s doctor’s visit, but I will next time. I expect that we’ll once again be greeted politely. I expect that we’ll be cared for by some helpful medical people. I’ll expect that my adult son with special needs will be a little bit nervous but will be treated with loads of charity and respect. Those are the kinds of appointments I dream of. Those are the kinds of people I wish for. Those are simple expectations that I wish for others as well.
Cathy Jameson is a Contributing Editor for Age of Autism.