Outrageous Expectations – AGE OF AUTISM
By Cathy Jameson
It is very rare for someone to call the house phone. It’s even less common for someone to call the house phone and ask for Ronan. When the calls come in for my severely autistic son, I am immediately concerned. That feeling came over me last week when a young woman called the house phone and asked if she would like to speak to Ronan. I quickly considered several options. I could…
1 – toys with her,
“Ronan? Do you want to talk to him? OK stay tuned … ”
Hello ron Come here buddy. You got a call.
2- be rude to her,
“Are you serious? He can’t speak. Who is that anyway ?!”
3 – or be polite to her.
“Oh hello. Yes, Ronan is non-verbal. But I’m his mother. Is there anything I can help you with?”
I chose option 3.
I didn’t recognize the voice, but I had an idea why that person was calling. She said she was trying to reach Ronan to remind him of an upcoming appointment. After I announced that Ronan couldn’t speak, I could hear her typing in the background. I assumed she added a note to his profile: patient cannot speak. When she returned, she announced that the appointment would be at a clinic he had already been to, but Ronan would see a new doctor. She wanted to know whether he or now I wanted to keep this appointment. I said yes thank you. The young woman confirmed everything and said the doctor would be happy to see us both on Tuesday afternoon.
It wasn’t until long after I hung up that I realized I didn’t need to answer the usual hundreds of COVID19-related questions that I had to answer prior to earlier appointments. These questions have been part of life for a long time: Are you sick? Do you have a fever? Chills? To cough? Sore throat? Have you been diagnosed with COVID19 in the past 2 weeks? Have you had contact with someone who tested positive for COVID19 in the past 2 weeks? It was nice to have a shorter conversation that reminded me of easier days.
When we got to the clinic, Ronan didn’t want to go inside. This is not surprising and can lead to delays. He likes his caregivers, especially the ones he’s used to. But he’s never a huge fan of going to places like this. Sometimes it takes a lot of encouragement to get him out of the car and then walk through the door. It took a little more effort this time, but by the time he crossed 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 he finally entered, he waited perfectly in the waiting room before being called back.
A nurse opened the door and said, “Ronan? Hello, come with me. I’ll take you into the room. ”Ronan and I grabbed my hand, got up together, and followed the nurse. I’m so glad Ronan did this part of the routine no matter what clinic we are in.
The nurse spoke to Ronan and me, which always impresses me. She hadn’t worked with us before but was communicating directly with my non-verbal son. “Okay, time for you to get on the scales. Stand here when you see zero. Wait … okay, now you can stand on it. Well! Next, you have to turn around on the scales … that’s right, turn around again. Okay, stay upright. I’ll bring that to your head and measure you. That’s it … perfect. You can sit down now, ”she said as she led Ronan to the examining table.
Having never seen this nurse when I was there with my other children, I was grateful for helping Ronan calm down. I wasn’t so grateful when the questions started. I was even less pleased to see her bright pink bracelet – not out of prejudice, but out of genuine concern. When she flicked a list of questions my way, I had so many that I wanted to ask her. Why? Why did you get the vaccine? Did you do a thorough research or did you trust blindly? Were you forced to get it or was it a choice? Was there a reaction? If so, how hard was it? Even with a vaccine, not all restrictions have been lifted. Do you feel safer / healthier / freer after vaccination? Was it worth it? I had so many things I wanted to ask, but I kept my mouth shut.
“So Ronan’s here for the annual check-up,” the young nurse began. “I have a couple of questions. Mom, did Ronan get the flu shot?”
Flu shot? I thought you guys are still talking about the flu shot ?! I also kept my mouth shut about that and simply answered the question:
No He had a reaction to a year ago.
“So he doesn’t do that anymore?”
“Oh ok. I see. Does he have any new allergies?”
“Did he get the Covid vaccination?”
“Are you thinking of getting one?”
“Are there any papers that the doctor must have filled out after your visit today?”
That was a very thoughtful question – the nurse who was looking through Ronan’s file knew we needed papers to be signed by the previous doctor. I was grateful that the opportunity had arisen if I had brought any new documents with me that day. But my answer was the same as the one I had just offered.
But thanks for asking.
Years ago I would have given more detailed answers to some of the questions I was asked. That day I decided that monosyllabic answers would be my first answer. Why? Because sometimes less is more. Less is best in certain situations. Less is perfect for certain new people who don’t need a long, dirty story. The basics would be enough for the type of appointment I’d requested anyway. The basics, and nothing more, were what I offered until I had to absolutely open my mouth and share something else. Fortunately, these quick answers satisfied the nurse.
You also made the doctor happy. She never asked about the rejected flu shot. She never assumed that Ronan needed the COVID vaccine. Nor has she once belittled me or shamelessly pushed me to other unnecessary non-liability vaccines. She only did what we came here to do. She regularly checked out my non-verbal, medically complicated son.
Since we had been in her practice for a year, she suggested ordering labs. Ronan’s specialists order labs quite often, but doing some basic that day was a good idea. Additions to the trial have been suggested to help with some of the minor issues we noticed. Once we get the lab results back and have a bigger picture of what else is going on, we will tweak this supplement list. I am grateful that some problems can be treated at home and this doctor prefers a gentler approach. Drugs could be an option, but they are never their first suggestion.
Most of all, I’m grateful that we were able to check as many things as we could – although this doctor was not at the same level of practice as many of Ronan’s specialists, this doctor was already aware of some of the most important problems we faced in the practice were very knowledgeable about the past. A positive relationship with her and her team helped. That’s why I easily agreed to her treatment plan. In return, she offered to find out about a possible treatment that I had recently read about and shared with her. She then promised to be available in case anything should happen – including any papers we might need to get signed. Aware that paperwork is part of raising a child with special needs, such as: B. Therapy recommendations and drug overrides, we recently entered the world of guardianship for an adult child with special needs. She more than understands that life can be a bit more stressful for us, so I was very happy that she only offered support during the appointment.
On the way out, I thanked the staff who helped us. As much as I hoped Ronan could sit with 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 stay completely calm for lab work is not something I can do on my own. I tried. And the cute lab technicians tried too. However, with all their encouragement, Ronan still wasn’t going with them. He knew what was expected of that part of the appointment, but decided he couldn’t do it. Just like my simple answers before, his simple answer to my request to graduate from the labs was a signed no. Then he waved goodbye. They told the overly nice ladies that we would have to come back another day, praised Ronan for trying and promised that they would be there next time to help him. I said thank you and Ronan signed thank you.
I didn’t have too many expectations about going to the doctor that day, but next time I will. I expect to be greeted politely again. I expect a couple of helpful doctors to take care of us. I expect my adult son to be a little nervous with special needs but treated with a lot of charity and respect. These are the dates I dream of. These are the people I want. These are simple expectations that I also wish others to do.
Cathy Jameson is co-editor for Age of Autism.