Don't get me wrong, this is in no way a preachy, smug lecture - purely a mental note to myself. One man's meat is another man's poison and all that. What works for one child doesn't necessarily work for another. So, in no particular order, these are just some of the things that help us to help J:
- Dust off your sense of humour. The comedy stair-walking mime is an essential string to my bow, as is the perfect arm-pit pump! My Vic and Bob-style "Oh, I fell" move has got us out of many a sticky corner. For J, people and animals falling over is hilarious. Not very PC but funny, nonetheless. Sometimes distraction is my only weapon against an all-out meltdown. Unfortunately there are no guarantees that this will work and I often end up looking like a prize plum! Our household is quite a noisy one. J's volume control is either set to very quiet or very very loud. A common sound chez Hughes is that of giggling. I love that. J responds well to a bit of banana-skin slapstick and I'm delighted to say that he makes us laugh a lot too.
- Street cred, looking glam, walking the walk, talking the talk: forget it!!! Worrying what people think is exhausting. Grow thick skin and embrace your inner plonker.
- Take Hart - yep, find the artist within. Stick men are fine. Actually the simpler and easier to understand, the better. Visual schedules are all to J. We never leave home without one. Sequencing is a problem for people with autism, so a clear reminder on a bit of paper in J's pocket is very reassuring. We show him: who is going, how we're getting there, where we're going, what we'll do there, how we'll get back and that we're getting home at the end of it. For a chap with high levels of anxiety, this is essential stuff.
- Patience is more than a virtue. Breathe, Breathe, Breathe. It will soon be over. Breathe, Breathe, Breathe. Count to ten. Count to 100. Count to 500. At this point, leave the room, run outside and kick something soft really hard (try to avoid the cat). A lot of patience is required with kids generally. Multiply that by 1000 and you'll need that much patience. Study Mother Theresa, Ghandi, Take That - whatever. Just be patient!
- The Sound of Music. God, I love that film. It's like a big hug from your granny. Sorry, I digress....... Music is magical. Sometimes when asked a question like "Do you want sausages or chicken for your tea?", J appears not to hear me. I try again, clear and precise. Still nothing. I try again, this time with eye contact at his level. Nada......... Recently, I've discovered that if I sing the question to him (particularly in the style of Julie Andrews), I get an answer!! Normally a musical answer, but, hey, sausages it is lalalalala!
- If you are an ungodly fishwife like me and a little swear bomb accidentally falls from your lips when you stub your toe/skid in spilt food/loose patience (sigh)..whatever... make sure that the word can be easily converted when it is inevitably echoed back to you - duck, spit, wrap, dollops, kiss, boring duck wigs (answers on a postcard for that one!) etc - you get the picture!
- Unless you are a total masochist, never EVER go to a park, playground, swimming pool etc without phoning ahead to check that it IS open and the wrong type of leaves/staff plague haven't forced it to close unexpectedly. Hell hath no fury like J with an unfulfilled expectation. If you forget to do this (like I do half the time), laminate a card with the word "OOPS!" on it. Carry it everywhere. Actually, just get this word tattooed onto yourself. It is really useful. It is teaching J that some situations don't go to plan and that us adults do make mistakes.
- Don't be precious about your house. Even after 3 hours of (boring boring boring) housework, it will look like a gang of rioting mongeese have rushed through it within ten minutes of the boys coming home. Wait until your home looks like Steptoe's yard before unearthing the hoover - take a photo when it's clean and tidy.
- Remove your head from your arse now and again. You may be totally embroiled in the intricacies of caring for your kids but your friends and family deserve time and attention too. I'm bad at this. Life goes on outside and you need to show these lovely people some love and appreciation for everything that they do (you know who you are xxx)
- Expect the unexpected - good and bad. My boys amaze me every day - little acts of kindness from G; a new song from J; a brilliant new drawing; an entire draw-full of socks all over G's bedroom floor; a new piece of poster-paint art on our white (bought pre-kids!) sofa; a sudden punch-up over who is and isn't allowed in the living room (give me strength!); a misplaced poo; a very very long game of hide and seek (!); feeling like you can't take another minute when suddenly it all gets better again; and a sudden "I love Mummy" from J...... It rarely happens how you think it will.
It's a big learning curve. The Autistic Spectrum is massive. There are no guide books on your individual child. This list grows all the time and changes continually. The secret is to go with the flow and remember that you'll get it wrong a lot of the time. But no cash bonus/medal/lottery win etc can possibly match the brilliant feeling you get when you get it right!
