Appointment

The appointment is a follow-up with the optometrist, who was last seen at the very start of pandemic times. It looks so innocent there, pencilled into the daytimer, sandwiched among all the other work and home life obligations. “C-optometrist 3pm”. I’ve disregarded it for the most part, until the day before, when a little bit of dread and uncertainty starts to sink in. I reassure myself that she has managed this appointment in the past. There was that one time when she went with her papa, and he was so proud of the way she was able to peer into the eye measurement machines and follow the instructions. It’s been awhile, but she often surprises us with what she can manage. We can do this.

We arrive early, masks on, apply our hand sanitizer and respond to the health check questionnaire. We get our temperatures taken with the air gun thermometer and then are sent on our way to the waiting room. She is excited. It will be hard to wait. It is hard to wait. And it is pandemic times. “No C, you can’t go down that way, we have to stay here at our chair to wait.” “No, it’s not our turn yet, we have to wait here, we have to give people space.” Strictly following instructions in pandemic times when we are out in the world is of the utmost importance and also a crapshoot with my child. I know that any extra/non-approved movement around other people in public spaces is frowned upon, and nobody likes to be frowned upon. The stress builds.

Finally she is released from her waiting room purgatory and it’s time for the ‘eye measurements’. The instructions that are given to her by the technician are minimal to none, so I fill in the blanks for her. I suppose most children her age who have been there before know the drill. It seems so simple, to rest your chin here, lean your forehead against the bar, look straight ahead, do you see the farm in the distance? Keep your head in that position until you are told otherwise. This is not simple for my child. I help her find the correct position – she struggles with knowing where her body is in space. I help her hold her head still – maintaining stillness in any position is an even bigger struggle. I count, but realize I don’t know how long she is expected to stay here. “How high should I count?” I ask. “20?” It is a moot point, as we are not getting past a count of 3. I suggest we try another machine. “What about this machine?” “Does she have to stay still for as long?” “Longer”, says the technician. “It takes a picture of your eye!” “Let’s try the camera!” “Chin goes here, head against the bar!” I am trying to stay enthusiastic, encouraging, optimistic about the possibility that we can achieve what we came here to do. She’s done it before, I think to myself. But not today. We return, defeated, to the waiting room to wait for the optometrist’s exam.

More waiting. I don’t know for how long, and if I were on my own, because I have no trouble striving for and take pride in achieving the ideal patient behaviour, I might even enjoy the time waiting. But when I’m with her, and there are others, and it’s pandemic times, and I don’t know how to keep her next to this chair, our waiting spot, for a second longer, it feels like hours.

Finally it is her turn to do what she was so excited to do. Sit in the big chair with Dr. H. Dr. H is experienced, kind, patient. She has this under control. She isn’t fussed about not getting the measurements. “There are other ways to do it”, she says. Okay, we’ll get something accomplished, I think. And we do. I stand back and allow C to rise to the occasion. She is in the big chair on her own, being presented with tasks that she is having varied success with. “Look through here” “Tell me the letter you see” “I’m going to play you a movie now” (I hold my breath…she is scared of movies…will she flee?…but no…she bravely stays put as I calmly narrate to her what is happening on the screen to help her manage the stress) “I’m going to put these glasses on you now” “What letter do you see?” And this second time, with glasses on, she nails it. She correctly identifies almost every letter. It turns out she needs those glasses.

“I get a prize!” she exclaims, hopping out of the chair and out the door. The appointment isn’t over. Dr. H is trying to explain her recommendations as C is prying the glass cabinet open. This is the prize cabinet that has been implemented during COVID to prevent kids from reaching into a communal prize bucket of potential germs. I imagine what this process looks like for most kids. They calmly point to the prize they want through the glass, and a staff member retrieves it. They thank the lady for their prize and patiently wait while their parent listens to the instructions from the doctor. They carry on to the booking desk to schedule the glasses fitting and away they calmly go. This is not my experience.

Once she has acquired a prize after two attempts to open the glass cabinet and retrieve it herself (this is how it has worked in the past, after all? Just reach into the prize bin and take what you want?), she takes off down the hallway to see if there are some people to meet. Normally I would not worry too much about this, but…COVID. I try to attend to what Dr. H is telling me about the prescription, the myopia, the glasses only being needed in the classroom, scheduling an appointment for fitting. C is down the hall talking to staff and I am reassured that it is fine, but is it really? What room is she in now?

It is time to move to the reception desk for the appointment-arranging. But C has other ideas and has returned to the doctor’s exam room, where a bewildered boy and his mother sit patiently waiting for their exam. My child has burst into the room and is refusing to leave. I give her a choice to come out on her own or I can help her. I count to three. She is not coming out on her own. I gently put my arm around her and move her along as she shouts and resists. We are a spectacle. “Sorry!” I say as I guide her out. I steel myself for the final steps before leaving. She asks to use the bathroom. That explains some of the difficulty with staying still I guess.

The receptionist and I struggle to communicate with each other through masks and plastic barrier as my daughter shouts out random demands from the chair behind me. “I see kids!” she says, demanding to see the kids from the eye clinic photos that she has been looking at in the days before this appointment. In my fluster and stress I tersely reply “No, there are no kids to see here!”, and she bursts into tears. She will be in flight or fight mode now so I have limited time. I finish up and cleave myself again to her side as she bolts for the front door. “Thank you!” I say as we swiftly exit, not a shred of genuine gratitude in my tone of voice.

I drive home with my emotions peaked, not crying but thinking about crying. I review how I did. Was I calm and patient enough with her? Did I do well with ignoring what others might be thinking in my efforts to do what was best for my child? Could I have prepared her better so that she knew more about what she would have to do? What could I have done differently so that the experience was easier for all of us? I don’t really come up with any answers, I am too wiped out to be my own worst critic. And the successes that were achieved (she read the letters! she tolerated the movie! we know she needs glasses!) are buried in feelings of exhaustion and overwhelm.

Once we are back in our safe space at home with no expectations, no audience and no protocols, we re-regulate. And I consider how she woke up that morning at 6am, an hour and half earlier than usual. I look at her lunch bag from school and see she barely ate lunch, and though a snack was offered on the drive from school to eye clinic, she had refused. She was hungry and tired. There were many expectations. People did not tell her in clear and simple terms what those expectations were. I was stressed about following protocols. She is sensitive to my stress. Of course that was how it was going to go.

And then again…what if there were more supports provided by the environment to allow my child with a disability to have a better chance at success? What if all staff were prepared and trained in how to give better direction to a child with an intellectual disability? What if an exception to the rule of waiting was created for those who need this accommodation? What if we could feel comfortable entering all of the same spaces that the abled access without a thought? What if there wasn’t a need for dread when it came to a standard health check-up, because the system was set-up for all? What if I didn’t have to come up with all of these ideas based on a poor experience and advocate for them myself? What if they were just the norm?

There are those of you who will never have an experience like mine when going for a simple eye exam with your 10 year old child. Whether they are tired or hungry or not, they will understand their role as the good patient and adhere to it. They will do what they need to do and the appointment will simply be another task in the day that is checked off without incident. The systems and environment are designed to fit you and your child’s abilities, and you don’t give it a second thought. You do not dread returning to the clinic for the glasses fitting that comes a few days later. Perhaps you will even look forward to it. You will take all of this for granted. Or maybe, after reading this, you won’t. Maybe the next time you see folks like us, doing our best in a world that stubbornly struggles to adapt, accommodate and accept disability, you’ll recognize your privilege in moving through spaces, appointments and protocols with your able bodies and brains. Perhaps you will recognize the privilege of moving through a system that was set up with you in mind and think about how to support doing things differently for families like mine. We would appreciate it. In the meantime, we will prepare today for that glasses fitting appointment tomorrow.