I don’t usually take him with me, but Ronan accompanied me to my doctor’s appointment last week. Since he had been to this facility previously, I wasn’t worried that he’d have any problems going again. The only struggle he’s had when he’s gone with me to my appointments is when I’ve had a blood draw. When the tourniquet is tightened around my arm, the panicked look on Ronan’s face speaks volumes. Not surprisingly, needles do a number on him. His immediate physical response to bat the phlebotomist away from me isn’t necessary, but in his eyes, he’s protecting me. I’m glad that he has that instinct. Since I wouldn’t be having any blood draws at this appointment, I knew Ronan would be fine to join me. Happily, he was.
Since it was not the first time Ronan had gone with me to this clinic, the doctor knew a little bit about my son already. He’d commented on the noise-cancelling headphones and asked about the signs he was using after meeting Ronan. I gave a short answer, “He has regressive autism and is non-verbal.” It wasn’t a complete answer, but it would do.
Because he’d taken notice of how different Ronan was compared to my other children, when we went over my family medical history later I made sure to say that, to my knowledge, no other relative shares the same combination of medical conditions that plague Ronan. That information made the doctor’s eyes widen a bit. I was glad to see that response. Sometimes that look is accompanied with a long pause which gives me enough time to add, ‘Yep, we saw him decline post-vaccination. The vaccines ended up doing more harm than good.’ But this guy returned his focus back to me quicker than others have and continued with the next question on the intake form. After all, it was my turn to be the patient, not Ronan’s.
That initial meet up was months ago. Months ago, I walked away deep in thought when I left the doctor’s office. I did so again last week. As with other appointments, both Ronan’s and my own, I had lots to think about. This time though, I couldn’t shake something that the doctor had said. What he’d said wasn’t about me or my health; it was about Ronan.
The appointment that brought me back to his office last week was for a follow up. A quick review of my previous tests and labs showed that things were looking good for me. With nothing new to discuss except how to continue to keep myself healthy and out of the doctor’s office, the physician asked what changes I’d made. I had taken a page from what had worked for Ronan and changed in my diet. I told him that and getting better rest have done wonders for me these last few months. Learning to say no to things – like the volunteering I’d been trying to squeeze in – gave me more time to rest and to eat better, and gave me energy to concentrate better on important, time-sensitive tasks that kept popping up. Being as thorough as he could, which I appreciated, the doctor then went back and reviewed the symptoms that had brought me to him and made sure they were no longer a concern.
While looking back through my chart to jog his memory, he asked me if I ever pinpointed when things started to bother me.
Had you been in an accident? No.
Had you changed anything in your living environment? No.
Had you been under any stress? I laughed.
Okay…had you been under any extra stress? I laughed again.
This doctor’s gotten to know me well enough to know that my plate is always full. If I’m not running here for one kid, I’m running over there for another. If I’m not holding down the fort by myself this week due to my husband’s job demands, I will be next week. Smiling and looking at Ronan, I reminded him that taking care of Ronan is a full-time job. It can sometimes take a toll on me physically. He nodded and said, “But that’s already a constant.” He went further and added, “…and Ronan’s been like that all his life.”
I didn’t try to tell him, “No, he hasn’t.”
The rest of the appointment was quick. Nothing recent had triggered the symptoms I had been experiencing earlier, so we went over what worked for me again. Since those changes had brought around better health, I was encouraged to keep at it. Walking me to the receptionist’s desk to check out, he reiterated, “…and don’t forget to take time for you and rest.” Ah, yes. That sage advice that so many moms need to take but sometimes can’t. Sheepishly, I said, “I will definitely listen to my body better because I know that if I don’t take care of me, how on earth will I be able to take care of anyone or anything else?” Shaking my hand, the doctor wished me well. He also waved bye to Ronan. More than ready to go, Ronan looked up and also waved good-bye.
Overall, it was a great appointment. I was listened to. I was part of the conversation. I was respected. But I couldn’t shake what that doctor had said about Ronan. He hasn’t been like this all his life. He was growing. He was healthy. He was developing. Then he wasn’t.
Walking to the car, I went back in my memories to a time that was easier and very different from today. My son didn’t have seizures. He didn’t need medications. He didn’t need a special diet. He didn’t need the 24/7 kind of care he needs now. He was not born like this. Things were different when he was a baby. Things were better. And I miss it. Some people don’t understand that. They may never understand until what happened to my son also happens to them. Since I’d never wish that upon anyone, I speak up about Ronan and tell them his story hoping they can avoid what we did not. But speaking up will have to wait until next time.
That day, in that exam room, with that doctor, it wasn’t time to tell that story. Dear friends suggested to me the last time I clammed up about Ronan, that that time will come. ‘You’ll know when it’s time to share the nitty gritty details of his vaccine injury. You’ll get an overwhelming urge to talk about it, and you’ll know that the person listening to you really needs to hear the details you are willing to share right there in that moment.’ Juggling everything can be tiring, including juggling emotions that pop up when I talk about Ronan, so I’ll save up my energy for that next time.
Next time, I will tell his story. I will also share how it affects our family, because it affects all of us. Ronan hasn’t been the way he is all of his life, but, if he remains as he is now – that is quiet, non-verbal, and in need of a tremendous amount of care, I’ll talk about why he still is the way he is. I have to, because as much as it is Ronan’s story, it’s become my story, too.
Cathy Jameson is a Contributing Editor for Age of Autism.