I'd thought of calling this one "My Life is Sh*t" but it sounded too Britney Spears. I've shied away from writing this for a while because poo IS taboo and not particularly interesting to most, unless you're 7, like G, and think the word should be included in every other sentence for extreme hilarity. I've dwelled on the fact that, with exception to the under 3's, whether a person is continent or not, is an indicator of whether or not they are acceptable to the human race. It's really a low down and dirty fact of the world of "special needs". But it's been such a fundamental part of our lives for the last 7 months and, as I said before, it's a dirty job, but someone has to do it...
When you have a child with special needs, it's very easy to baby them for much much longer than you would a "normal" child. I'm speaking for myself here. The Autism label is the equivalent to a note from your mum for getting out of P.E. and cross-country runs when it comes to teaching any kind of skills that foster independence. I could (and often do) beat myself over the head with the "could be a better parent" guilt stick but, my reluctance to take the plunge with potty training J was all for a very good reason. It's bloody hard. Really hard. In retrospect, it's been like a kind of brown Marathon des Sables - but has, or is, taking several months longer!
For starters, the common incentive of being a "big boy" just doesn't cut it with J - he doesn't covet a skinny-cut jean with a peek-a-boo pant. He sees no shame in a man-sized nappy. Bribery is a minefield when the concept of cause/effect is shaky. And change is really frightening for him. Then there's the matter of the autistic bowel. I won't go into too much detail here because it feels unfair to J, but let's just say that when your own beautiful, beloved flesh and blood causes you to gag unashamedly, you start to revisit the Autism/Leaky Gut theories... You could build whole skyscrapers with this stuff.
So it was back in July when J started grabbing his crotch a la Michael Jackson and getting that far off "I'm shaking my lettuce" look in his eyes. We really wanted to help him achieve this giant step towards independence. I went on an amazingly clear and reassuring "Toilet Training for kids with Autism" masterclass (by Gina Davies - if you do have a child with autism check out her forthcoming website which will go live soon: www.attentionautism.com) and decided that the time was ripe.
The crux of the matter was planning and preparation and getting into a routine of "toilet timing" i.e. taking J to the loo at regular intervals until the penny dropped (so to speak). I bought an abundance of spare pants, socks, trousers and carpet cleaning materials. I positioned uncharacteristically organised baskets of "clear-up-without-any-fuss" materials around the house. We decided on the vocabulary that we should use (this had to be universally understandable words that J can use for the rest of his life - once words for things are learnt, they are very difficult to change at a later date.) "Wee", "poo" and "toilet" seemed acceptable (although, call me Audrey Fforbes-Hamilton... but "toilet" had been as far from my vernacular as "serviette" before July!) We laminated exacting visual schedules - "trousers down, pants down, sit on toilet, wee or poo in the water, pants up, trousers up, flush, wash hands" (extremely helpful to drunken adults too!) and blu tacked them into the bathroom.
So, in the optimistic spirit of building a piece of flat-pack Ikea furniture, we were off!
Day One involved a lot of distress and anxiety, frantic searching for well-hidden nappy stash and generally seemed doomed for failure initially. It took both me and the dog sporting pants on our heads to get J to so much as proffer a foot for this disturbing newfangled item of clothing. J wouldn't go anywhere near the "toilet" until I'd produced several sheets of suitably distracting maths artwork to adorn the walls. It was angst-ridden and awful.
The closest he came to hitting a target on that(first of many) angst-ridden, carpet-punishing day was a wee in the dog's water bowl. By close of play the washing machine was on its third cycle but I was just so immensely relieved to have taken the leap of faith that it didn't matter. As parents, we don't usually dwell on whether our kids will grow up to be independently functioning adults. As parents of kids like J, there are very few guarantees. We could easily inherit several autistic traits on the way: fear of change, being just one, because change is just so traumatic for J. And for us in relation to J.
Many months on, J is in pants. The accidents have become part of life but the we're almost there on the Number Ones. Number Twos, however, are a law unto themselves. Kind of like traffic wardens - they appear when they're least expected and when we're least prepared! There have probably only been 20 poops in the last 7 months that have found their way into the Thames Water system. That's a lot of dirty pants. As with some people with autism, J just doesn't seem to have that butt-clenching, "touching the cloth" (sorry!) sensation pre-poo. It's more like a sudden "filling the cloth" type surprise all round. Some autistic people have to set their watches to alert them to visit the toilet every half hour for the rest of their waking lives to deal with this lack of sensation.
The plus sides:
- The bathroom has never been so clean (it is disinfected at least once a day due to necessity rather than any OCD on my part)
- We have discovered that Labradors make excellent hoovers - they are really not fussy: cat-shit/fox-shit/kid-shit - all looks like chocolate buttons to them!!
- We are helping to keep M&S afloat in these tricky financial times with our bulk-purchasing of pants.
- We're losing that nagging feeling of being in charge of a de-pinned grenade. Small steps but it looks achievable.
- Yet again, I am humbled by the gargantuan effort J has to put into life. This isn't coming naturally to him. He isn't interested in conforming. But he's got the idea and he's really trying. I do believe he's just a little bit proud of himself. And that's worth every effort.
