Fairness, anxiety and disability

After the annual ‘Ride to School Day’ (where I fell off my scooter) our school introduced a monthly ‘Ride to School Day’. Jeremy, Damian and I have participated in it several times since (with me on a bike not a scooter). Each time that we have done it has been somewhat stressful for me (and my boys but they still insist on doing it) not because of the risk of injury but because of the risk of meltdowns. What usually happens is that one boy insists he wants to turn around and go home and the other boy insists he must and will go on.

Although, my boys have many strengths they also have some challenges due to their unique autistic traits. Traits that make participating in events that test their endurance more challenging than for many other children. Jeremy has anxieties around order, routine and doing things the ‘right way’. Damian has many anxieties about things he perceives to be dangerous and has greater sensitivity to touch, pain and internal discomfort. Regardless, of how their challenges affect them on these events they insist on doing the ‘Ride to School Day’ anyway.

This morning, Damian initially said he didn’t want to do the ride, which was fine by me. I said reassuring “That’s fine your Dad can drive you to school with the school bags”. Of course, as soon as he realised that he had the choice he changed his mind and with a sharp intake of breath I said “Are you sure? I don’t want you to come if you are going to complain the whole way.” He was sure.

So off we went and the usual challenges ensued. Damian scratched his leg on the bike pedal (no broken skin) and stopped to whine about it, both boys kept trying to overtake one another and got upset about whose turn it was to lead and Jeremy complained about tired legs but ten seconds later was riding too close to Damian saying he was going too slow. I had offered 3 tokens (to add to their reward charts) for a ride without complaints and reminded them to good effect until…

50 metres before the bridge Damian stopped and refused to go any further. It was a very well-built wooden bridge with thick wooden pylons and planks. I’ve never seen a more sturdy looking wooden bridge before but it was high up over a body of water (an inlet) and from a distance may have looked imposing. We had all crossed this bridge many times before. In fact, before, it had been Jeremy and not Damian who was nervous about it.

Damian insisted he wanted to go home. I offered another token for crossing but to no avail. I explained how safe it was and how he had crossed it many times before but fear was resolutely setting in. I recognised that Damian had passed the limits of effective coaxing and external motivators. I could have offered him 20 tokens and scientific evidence from a construction engineer and it wouldn’t have made any difference.

I tried going on ahead without him. I thought, if he sees Jeremy and I on the bridge he might realise it is safe. I even jumped up and down to illustrate the point that it was safe. It didn’t work. I called Andrew on my mobile phone and he suggested I carry him across. However, the idea of it only intensified his feelings (I guess carrying him would make him even higher off the ground). I thought if we go back home we will be very late for school and Jeremy will refuse to go back anyway and become just as upset as Damian so I had no other option.

I told Damian that I was going to have to carry him against his will because we had to go to school and that he would never have to cross that bridge again after that. I picked him up and carried him to the bridge. Once on the bridge, I put him down knowing that finding that nothing awful was happening it would reassure him a little. He was still very anxious but I held his hand and he walked with me while I constantly reassured him until we got to the other side.

Jeremy had been so helpful just by being understanding and patient and I told him as much and how much easier it made things for me. However, when we got to the school and I confirmed that they’d both be getting their full quota of tokens, Jeremy was less understanding. Jeremy didn’t think it was fair that Damian could complain so much about the bridge but still get just as many tokens as him. Jeremy is very insistent upon what he considers as fairness.

Fortunately, I had explained to Jeremy before about Damian’s anxieties and how it made things harder for him and how we had to be understanding of his disability (not penalize him for it). Crossing that bridge was extremely difficult for him but he did it, so he gets the tokens. His complaints were expressions of great distress in this case and therefore didn’t count. Jeremy knew how distressed he was. In the future, it would just be Jeremy and I doing the ‘Ride to School Day’*.

Anyhow, now it is clear to me that I need to have a bigger discussion with Jeremy (and Damian) of what it means to be privileged (not just disability) and the social model of disability so that he can challenge his perception of fairness. Wish me luck. I’ll let you know how it goes.

*we can’t avoid a bridge on the way to school, the alternative way includes a road bridge and Damian is equally terrified of riding on the road.

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