Get with the programme Mother!

Toileting issues are a huge deal for parents of autistic children. Many worry about the social aspects of this delay. Others are weighted down with the practicalities of laundry. [translation = as well as carpet and upholstery cleaning] If potty training is a hill to climb for the average parent, then toilet training is Mount Everest. [translation = jolly big European goal] There are so many complexities associated with this ‘basic skill.’ It’s not just the sequencing of doing the business in the right order, or having the fine motor skills to fiddle with zips, buttons and snaps but also the motivation. [translation = why should I stop what I am doing now, to go and do something so dull and or challenging?]

As the parent to two autistic children, I have a tendency to trample all over them. Although I frequently complain that I don’t understand them, more often than not this is because I’m not listening properly. As a result, I steamroller over my children without so much as a by your leave. I make assumptions. [translation = the wrong ones] I am too quick to judge. [translation = cynical, pessimistic old bat]

From a few months back……

I stand at the stove stirring supper. [translation = lay the table, wash up, make pack lunches and do all the tasks possible during their 30 minutes TV time] My son appears in the kitchen before me make a statement of intent.

“I need wee!”
“Oh! O.k. thank you for telling me that dear.” He doesn’t move, so I watch him for a second, uncertain. We moved past that stage a long time ago. [translation = we had a long period when they would announce that they needed to use the toilet. This was great progress because they were recognizing the ‘urge’ and verbalizing a need.] I thought at the time that they basically wanted me to ‘empty’ them by remote control so that they didn’t have to leave an activity, but it may also have been inertia – ‘please prompt and remind me of the next step.’
“I need wee!”
“Great! Nip into the bathroom dear.” What is going on here? We are way past this. Is this regression? Is he losing skills? Help!
“I need a wee!”
It doesn't seem that long ago, that I would have to carry someone to the bathroom. A child would sit cross legged on the floor with a toy or talisman in each hand. I would lift him like a statue. He would hold his position, cross legged and toy in each hand. More often than not he would be naked, so I would simply park him on the toilet and wait. His arms would remain bent and holding the toys. [translation = he had no active role in this exercise]
“Do you want me to come with you?” Accompanying individuals to the bathroom has only faded in the last 6 months. Prior to that neither would enter the denizen of the toilet alone. Does this mean that it’s come back to haunt me? I dither. Do I accompany him and take a step backwards on the progress scale or do I risk him having an accident where he stands?
“Off you go!” I twirl him around and point him in the direction of the bathroom, just in case it’s slipped his mind where that room is located. [translation = often during times of sensory overload, he forgets some of the basics, or can’t retrieve them, or they’re not important enough to bother retrieving]

He takes a step or two towards the bathroom and then stops dead. He pauses to process and then snaps back round towards me to shout “I need wee!”

I give up, as minutes are passing. He is so much older now that the occasional accident causes untold distress. Self esteem is pivotal, I will not permit it to be eroded. His sense of social awareness is zipping ahead. I take him by the shoulders and propel him towards the bathroom, “I’ll come with you dear. Come along.” [translation = wiped out six months of progress with one moment of weakness]

His hands fumble about his trousers as they often do at such times. I’m tempted to yank his trousers down to speed up the process, but I know that he can do this. I wait. I watch. Should I prompt or wait for him to join the dots? [translation = exercise those synapses, strengthen those neural pathways] What is he being distracted by? Where has his sequencing gone to? Hundreds of carefully engineered little steps come back to swamp me. Teaching people to use their hands to assist - 'hands are our friends, they help us.' [translation = 17 steps to task completion] Not to mention hand washing and drying! [translation = thirteen steps]

“I need wee!” he repeats. Is he stuck? Is this one of those little word circles? Has he caught this exceptionally annoying motor mouth habit from his little brother? Will I be deaf, if this ends up being double motor mouth? His trousers flop to his ankles as he sits down on the top of the lid of the toilet, “I need wee!”

I am becoming more and more confused. Why sit if he wants to wee? We've already mastered that step. “Up you get dear, you forgot to lift the lid, quick before we have an accident.” He's losing it! Do I need to stick up the sequencing charts again? Where are the sequencing charts? Did I recycle them? I am an idiot! [translation = too swift to assume that a skill once mastered, will remain mastered indefinitely] He stands hobbled by his trousers, hesitant, neither up nor down. He lurches away and stumbles out into the family room. No! Not Houdini time again! I bumble after him. He points at the television screen, “I need wee!”

I look too. What is that? It’s a Wii. Poor benighted child!