People often say to me ” I don’t know how you do it” when they meet us, or they hear our story. In fact I’ve had Dr’s, social workers and even a behaviour therapist say it. My answer is always that we laugh more than we cry.
To give you some background I come from a family where humour is a way of dealing with life, I mean if I fell over my family would pick me up – but only after they had finished laughing ( they may even check I was ok ) and misfortune is met with sympathy and support , but after a decent amount of time has passed you will forever be teased about the time your trousers fell down in public or the time you sneezed and farted in a restaurant ( of course neither of these things has ever happened to me , ahem)
So it is little wonder that we deal with the day to day trials of living with SLOS in the same way.
Today for example Jack told a woman that her moustache was beautiful, I of course apologised and guided Jack out of the shop , but I was laughing my arse off when we got back to the car. A few years back Jack and I attended an event for Autism at the Senedd ( Welsh Government building) we had to be searched going in and our bags etc scanned, cue a minor meltdown from Jack when he had to hand over his Empty DVD cover that he was carrying for it to be scanned. Anyway we sat in the audience whilst I silently prayed that Jack wouldn’t say or do anything silly, alas my prayers were in vain as one of the speakers droned on and on , people began to fidgit in their seats as the speaker continued. Jack had had enough and shouted ” please stop talking , your boring me. Oh and your tie is horrible” . The audience dissolved into laughter as the speaker apologised and quickly wound up his speech. As the speeches ended we quickly darted for the door only to be stopped by several people who really wanted to meet the boy who had said what the room was thinking. Among the people wanting to talk to us was a Welsh Government minister, it was all going swimmingly until Jack blurted out ” I really need a poo” then proceeded to lick her from her neck to her eye.
Jack and Lucy always speak their minds , and I mean always. Now don’t get me wrong those of you that know me will testify to the fact that I myself pretty much always say what I’m thinking but as I have become older I like to think that I am little more diplomatic these days. But my kids have absolutely no filter. For example last year Jack and I were at the Dr Who experience in Cardiff ( as an aside when we arrived the lady at reception asked if I had proof of Jacks disability, he was licking the counter as she asked) we walked around enjoying the exhibits when we saw a man dressed as Dr Who ( Tom Bakers Dr Who to be precise) and Jack asked him where the gift shop was, the man just looked at him. I explained to Jack that the man didn’t work there and attempted to move on . Jack however stayed firmly planted in front of the bemused guy , pointed and said ” so why the fuck is he dressed like that?” I think we broke the four minute mile trying to get away.
As part of his disability Jack has some difficulty with his speech. He mispronounces words frequently , like calling a Wok and wank for years, calling a fork a fuck and every December he sings that family favourite ” wanking in a winter wonderland”
I asked Lucy why her iPad was in the floor to be told ” gravity”
As a family we laugh every day, it really does get us through the tough times. People should really and try and laugh at themselves, and if they can’t then they should give us a call and we can do it for them,