They Don’t Know

Who doesn’t know??? The man poodling along on his bike. The lady taking a leisurely ride on her horse. The group of cyclists who are spread across the whole road. The person ahead of us in the queue who can’t decide what to order. The lady toing and froing for several minutes to park her car meaning we can’t drive past or the guys at the roadworks who are just doing their job.

None of them know.

I don’t expect them to, why should they, it’s not their fault. They are just going about their day to day lives as we are trying to. But what they don’t know is the disproportionate amount of distress they are unintentionally causing my son.

My son James is 28yrs old. He has complex needs including a severe learning disability, epilepsy and autism. He has always struggled to ‘wait.’ It’s a life skill that all children have to learn. We’ve all seen the toddlers in the supermarket having a tantrum because they have to ‘wait’ for something to be paid for before they can have it. As tough as it is for parents, most children will eventually master the skill of ‘waiting.’

My son never has. It doesn’t make him naughty though some may perceive his actions that way. I can honestly say it does make our lives very stressful at times because sometimes waiting just cannot be avoided. Wherever possible we do avoid it, we plan around it. My husband and I will go our separate ways if one of us needs to go to the till to pay or to the toilet, the other will do something different with James to occupy him or we’ll take diversions to avoid waiting in traffic.

We do everything we can to avoid his distress.

What people won’t understand is that if we get stuck in the car behind a cyclist or we can’t pass a horse, James will have a meltdown. At best he will shout and cry and become very distressed, at worst he will throw himself around on the back seat of the car, hitting the door and sobbing.

Usually, we avoid filling our car with petrol when out with James but the other day we just had to get some (I don’t like to be too low. My rationale since James had his heart surgery and first seizure was that we ALWAYS need enough fuel to get to the hospital)

On this particular occasion we pulled into the garage and a pump was free so my husband got out to put the fuel in while I occupied James by reading to him and pointing things out to look at. There was no hold up and my husband returned swiftly. This was a good result. James was fine. Phew! However, had we pulled into the garage and a pump wasn’t vacant and we’d had to wait in a queue it would likely have been a different story because in James’ mind ‘that’s not supposed to happen’.

In just the same way as when we drove into our road a while ago to find it blocked by a food delivery van. This is ‘not supposed to happen.’ This does not usually happen. We usually drive into our road and straight onto the driveway. When things do not happen as expected James cannot process it, it’s not what he was expecting and it causes him distress.

In certain situations he has learnt to cope.

Waiting for appointments, with lots of attention and distractions and as long as it’s not too long, he can cope with sitting and reading books with me or looking at pictures on my phone. It took many years to achieve this.

So that is what ‘they don’t know,’ that I’m always on a knife edge, watching, waiting and planning my next move or diversion tactic to avoid my son having to be distressed by the actions of others…..even though they are completely unaware.