What do these have in common?
Woollen jumpers, clothing labels, falling-down socks, seeds in shoes, fingernails down a blackboard, peach skin fuzz, polo necks…
Did you work it out? They’re all well-known sensory irritants.
Each of us has at least one sensory bugbear, the one thing that just has to be dealt with before we can continue or even begin whatever it is we’re doing. It’s different for everyone: what some people hardly notice, others can’t stand. And these little irritants don’t really interrupt the ebb and flow of our daily lives.
Most of us deal fairly quickly with these sensory issues. We cut off the label, pull up the socks, remove the shoes to shake out the seed or stone, opt for the polar fleece instead of that cosy-looking jumper, mentally block out that loud noise. Understanding the stakes, we submit to the temporary discomfort of blood pressure monitors, eye examination machines and dental instruments in our mouths.
Imagine then, how uncomfortable and distracting it must be for those who experience a multiplicity of these irritants – things we mightn’t even be aware of. And consider, what can you do when someone’s inability to manage those sensory inputs has real implications for their health and, potentially, their life?
I was reminded of this when I took my Dancing Wombat daughter to the optometrist recently. Eye examinations have always been challenging for her but, with her vision around -17 in both eyes, a necessity.
Last year, modern technology gifted her sight. After a double lens replacement, she could function without her glasses for the first time since she was 21 months old. It seemed nothing short of miraculous. The operation improved her vision to something approximating -3. I say “approximating” because she struggles with standard eye tests.
Six months after the operation, she was back for retesting. However, after waiting for nearly an hour, she was so tired she was completely uncooperative. We emerged with no clear idea of how her vision was going, knowing simply that she could read and walk around without glasses (significant in itself, admittedly).
After this year’s teacher started making noises about Dancing Wombat needing glasses, I thought it was time to try again. I made a weekend afternoon appointment. Perfect, I thought. We’d have a cruisy day, she wouldn’t be tired, the waiting room wouldn’t be crowded or noisy and she’d breeze through the tests. Wrong.
First step was the machine which objectively assessed her prescription. “All” she needed to do was place her chin on the chin rest, put her eyes to the eye part, look at the light and stay still. Not as easy as it sounds. Dancing Wombat has certainly come a long way from the days of totally refusing to even put her chin on the chin rest. But we’re not there yet. Chin on – tick. Eyes looking in the right place – tick. Stay still – cross, cross, cross.
There’s an awful lot of fiddling and adjusting required to get these instruments in juuuust the right place. If the patient moves, well, you have to readjust. Knowing just how hard it was for my daughter to sit still, I was in agonies watching the minuscule changes being made to the instrument’s position. At any moment Dancing Wombat might move her face, scratch her cheek, brush away a stray hair, do something which would demand yet more adjusting.
After five minutes of futile adjustments, I politely suggested trying the traditional approach. I didn’t want to say too directly that my daughter found this process hard. Firstly, this was reasonably obvious. Secondly, I want her to develop the ability to cope with these machines and not give her a reason to stop trying. You can’t precisely measure someone’s vision when they’re unconscious, the only time Dancing Wombat can keep her head still for more than a handful of seconds. So she needs to get better.
We moved to another room. Time to put the paddle in front of one eye, while checking what the other eye could read. She’s been doing this since she was 21 months old, but not today. Okay – let’s try the pirate patch. That looks good, doesn’t it?
“What can you see with your good eye, sweetheart?” Oh, you’ve shut it. Hmm, not terribly helpful. The optometrist enlarged the letters.
E Z B
“What can you see, gorgeous?”
She leaned forward, tilting her head sideways. “I can’t see anything.” She started to get out of the chair to walk towards the letters. I pushed her hastily back down.
“No, remember, you have to read them from here. Come on, I’m sure you can read these!”
She shook her head.
“Come on, have a go. Please. Just try,” I pleaded.
“H… R… F”
Okay. Maybe she’s seeing something. But I wasn’t convinced she was actually reading the letters. We unsuccessfully tried a few more lines. She looked down, and recited a few letters. If it’s letters we want, it’s letters she’ll give us. It’s a neat strategy. Unfortunately, it’s also fatally flawed!
We tried patching the other eye. Worse. Now she was actually looking down AND her good eye was closed.
“Oh, come on. You can’t see anything with your eyes shut!” I tried to keep a joking, light-hearted tone, far from how I felt.
The optometrist was very sweet, but gave up, suggesting I book with a senior colleague. “Could we maybe just try with her glasses?” I asked. The glasses that we got for “distance” vision, but which Dancing Wombat refuses to wear. The ophthalmologist (also her eye surgeon) said this was probably because her vision was so poor before, that even slightly blurry vision now without glasses is better than with them. Problem is, it doesn’t seem to be helping at school. Hence our visit.
I gave Dancing Wombat her glasses. She put them on and read some of the larger letters correctly. Well, that was something.
The end result was that we were advised she should – or at least, could – wear her glasses all the time again, even use them for close work so she needn’t take them off and put them back on. Fine. So at least we had a strategy to pursue, and I’d make an appointment with a different optometrist for a different time.
The optometrist is close, so walked there. Before we left, I asked Dancing Wombat to put on her glasses. “The lady said it would be better for you to be wearing them sweetheart,” I explained. “So let’s start by wearing them home.”
“I don’t want to. I want to wear my sunglasses.”
“Well, you can put your sunnies over your other glasses!”
She tried. “No, it doesn’t feel good.”
Fair enough. “It’s not sunny anyway, so just wear your normal glasses,” I told her.
She demurred. “They don’t look good.”
“Yes they do. They’re lovely! In fact, I think they’re better than the glasses you had before your operation. And you used to wear those all the time!”
“Even in bed?”
“No, of course not, you duffer!” She giggled. “You don’t need to wear your glasses when you’re asleep! Now, put them on please.”
“My eye’s itchy!” Oh, great. Now the myriad excuses will start tumbling out.
“It wasn’t itchy before,” I replied suspiciously.
“It’s itchy and it hurts.”
“Just put on your glasses. We’re not going home until you put them on.”
She put them on. We walked a few paces, then she stopped to check her Fitbit. “I can’t read it with the glasses on,” she complained.
Deep breath. “Okay, so take them off, then put them back on again,” I suggested. She did so. Further delay. Further refusal to put the glasses back on. Time for the stick. I’ve run out of carrots.
“If you want some iPad time when you get home, you have to wear your glasses.”
“But my eyes hurt.”
Grrr. I was really losing patience. But she wasn’t trying to be difficult. She was as frustrated as me.
“Sweetheart, that’s why we were at the optometrist. That’s why you had your appointment. So we could work out what sort of glasses you needed. But you weren’t very helpful, so we weren’t able to help you.”
And so on. My daughter has walked into things before – walls, poles, people. Her head is usually down, so she’s not looking ahead at the best of times. Last weekend, she walked into our open fridge door then, ten seconds later, into the wall around the corner. It’s essential that when she looks up, she can actually see. What do you do?
I know these eye tests are really, really hard for her. The sensory onslaught is significant. She can’t keep her head perfectly still beyond about three seconds at a time. She feels confined by the supports around eye testing machines. She struggles with asymmetry – like covering only one eye. She doesn’t understand the need to be distant from the letters she’s trying to read – it makes no sense to her. I can practically hear her thinking, Gee, Mum – if you want me to read the letters, I need to get a bit closer…
For now, my task is to get her used to wearing glasses again – after more than a year of being glasses-free. Then we’ll have that follow-up appointment.
So the next time you complain about that itchy tag in the back of your clothes, or wince at a stomach-churning sound, spare a thought for those whose sensory struggles are harder to overcome, and have a much greater, even debilitating effect on their lives.