Tyger has a cyst under his eye that’s been there for weeks now. This has involved quite a number of trips to both the GP and the eye clinic at the hospital. Lots of waiting. Lots and lots of waiting. Preschoolers are not known for their ability to wait quietly and patiently at the best of times and preschoolers with ASD in noisy, unfamiliar surroundings…even less so.
I try. The first time we went to the eye clinic was after yet another trip to the GP resulted in a referral for later the same day. Between allowing extra time in case of car sickness, the GP ballsing up the time and telling me the appointment was an hour earlier than it actually was, some confusion between the receptionist and nurse, and a 40 minute wait for a prescription at the hospital pharmacy we ended up waiting around for over two and a half hours. That’s a long smegging time for an adult to be hanging around with nothing to do, let alone a small child!!
I had not planned for such a long wait. I had a few toys and snacks for both the boys in the changing bag and my mum was with us but even so it was hard. Tyger was distracted by a little notepad and pen set I had in the bag for a while and did cicuits of the waiting room but by the end I had to carry him round restraining him. My neck, shoulders and arms ached the next day. Want an unusual workout? Try carrying and restraining a tired, bored, frustrated autistic kid for a while. Except, you know, don’t. The child’s parents will probably call the police.
Okay, so that was an unexpected one-off type of trip. Next time the Wolf worked from home so Baby Bear could stay with him whilst my mum took Tyger and I to the hospital. I prepared. I looked for inspiration online and got creative. I used an old DVD case as a carrier for paper and stickers and pens. I made a ‘hide and seek bottle’ where you fill a plastic bottle with rice and then a load of random stuff (buttons, tiny toys, small bits of cheap jewelry, beads, whatever interesting stuff fits in) and then the child has to shake and/or turn the bottle to make all the stuff appear out of the rice. I also stuffed a balloon with homemade playdough for a sort of squidgy stress ball type thing. Some proper Pinterest parent type of shit! Plus, I packed his backpack with a packed lunch and some of his toys (a few of them brand new since this appointment directly followed his birthday) and I took some books. I felt pretty good about it all.
(Maybe I need more wood and glitter before I could put this on Pinterest but it’s functional.)
The DVD case and bottle kept Tyger entertained for all of about five minutes combined. He refused to so much as acknowledge the books. He wanted to eat the chocolate biscuits from his lunch first and refused to eat his sandwich when I told him that needed to be eaten (lesson learnt there – don’t let him see the treat elements of a packed lunch until after the boring stuff has been consumed) but still kept declaring he was ‘soooo hungry’ at every available opportunity (of which there were many). He barely looked at most of his toys. The only things that kept him remotely entertained were his Thomas trains and the balloon filled with playdough. Oh, and a couple of nice ladies who were in seats opposite us and didn’t mind him talking at them.
But that’s okay because we were there at the right time on this occasion and there were two adults to just the one Tiny Tyger. No problem, right? Ha. We still had to wait an hour for our appointment because of the triage system at the eye clinic and neither my mum or I could keep him interested in anything for very long. So, he spent a large amount of time lying on the floor in the pretty large and reasonably busy waiting room, rolling around. It was pointless trying to stop him. It would only have resulted in lots of screaming and probably some hitting and scratching (directed at me or himself) and he’d almost certainly try to run away. Every time someone needed to walk past I dragged him across the floor out of the way (which was a source of much amusement for Tyger – less so for me). I got some looks. I ignored the looks.
Then, an elderly lady took pity. She came and sat down near us and started asking Tyger about his trains. She explained her grandson liked Thomas and asked Tyger which was his favourite. (Interestingly, Tyger normally makes quite a nuisance of himself with strangers. He likes to talk to them, order them around, tell them off, climb up next to them etc. But this woman instigating a conversation with him elicited silence and sideways glances for quite a while before he seemed to build up the confidence to answer. Evidently, interactions have to be on Tyger’s terms.) I wanted to hug that lady. Well, I don’t really like physical contact with strangers so I didn’t actually want to hug her but you know what I mean.
The last time we went to the hospital I didn’t try to be Pinterest Parent; I resorted to videos on a tablet. Yeah, that’s right, I was that mum but I thought better that than the mum of the kid rolling around on the floor. The Wolf ordered him kid’s headphones so we wouldn’t disturb the entire waiting room with the sound of cartoons and everything. Tyger didn’t like the feel of the headphones. He watched on and off for about half an hour whilst continuously taking the headphones off and then asking me to put them back on him again…but still ended up doing some rolling around on the floor. Nobody spoke to Tyger except one man who commented on his Thomas t-shirt and bag on our way out and gave Tyger a high five. Tyger was pretty chuffed with that.
We have yet another hospital appointment this coming week (because the ‘wait and see’ approach is not just reserved for ASD diagnoses but for anything regarding children, it would seem). I’m running out of ideas to keep Tyger occupied.
So, what am I saying? Am I ordering you to entertain every child you see in waiting rooms, on public transport, in shop queues etc.? Maybe even to carry around juggling balls – and put in effort at home to learn how to juggle – at all times, just in case? No, of course not. Although…no, that’s probably unreasonable. All I’m saying is it can be very daunting for me taking Tyger out. I know he might try to bolt out of the blue, he might suddenly decide he needs to take his shoes and socks off in the middle of this corridor, he might refuse to get up off the floor because he has some sensory need to roll around, he might find the noise when we’re out overwhelming and start screaming to drown it out. Trying to anticipate and respond to these behaviors is exhausting. But the worst part is – whilst I’m trying to talk him up off the floor like some cop in a film talking a jumper off a roof – I’m hyper-aware of everyone around me looking and judging. It makes it all much more stressful.
All I’m asking is you be a little understanding. If I let Tyger climb up on a chair next to you and start talking to you about your glasses it’s not because I can’t be bothered to parent my child, it’s because I can tell if I move him away he’ll start screaming and kicking and I judge that to be more unpleasant for you (and the whole waiting room) than having a small child chat to you for a few minutes. If he runs round a shop with me trailing after him, desperately making sure he doesn’t break anything or get in anyone’s way it’s not because I don’t discipline him. It’s because, again, keeping him in one place would mean a much higher likelihood of something being broken. His brain does not work in the same way as neurotypical people’s and that’s not his fault. It’s also not my fault, though it often feels like it is.
I have become much less judgmental, myself, in the last three years. Maybe that mum letting her child drink half a bottle of Coke is a bad parent who feeds the poor kid a diet of nothing but sugar and fat because she doesn’t care about her child’s health. Or maybe her child is diabetic and she’s merely trying to correct hypoglycaemia so the child doesn’t lose consciousness. Maybe that dad didn’t put shoes and socks on his toddler’s feet even though it’s snowing because he couldn’t be bothered. Or maybe he did diligently put cosy pairs of both on and the toddler – as toddlers are want to do – pulled them off and threw them out of the buggy and nicely drawing the dad’s attention to said toddler’s feet rather than sighing loudly as you walk past is more helpful.
What do people think their looks and tuts and comments are going to do? If these seemingly awful parents truly do not care, disapproval from a stranger is unlikely to change that. It might make the tutter feel a little superior for a while but that’s about it.
You know what also makes you feel good about yourself? Showing a little kindness to someone. A smile, instead of an eye roll. Saying ‘hi’ back to a little boy when he says ‘hi’ to you instead of blanking him. Answering his questions. Giving a little reassuring nod instead of a glare.
Any of those small kindnesses make my day (and Tyger’s) a little bit easier.