Thursday, 25 November 2010

Ten Ways to Live a Quieter Life (or How to Retain a Shred of Sanity!)




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:


  1. 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.
  2. 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.
  3. 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.
  4. 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!
  5. 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!
  6. 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!
  7. 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.
  8. 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.
  9. 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)
  10. 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!

14 comments:

wishihadakarmaanghia said...

Oh - I forgot:
10a) If you're going to try to raise awareness of autism, don't be naive. Long story...! x

Anonymous said...

Another fantastic article Mrs. I only object to one point - you DO somehow manage to retain the glam factor through it all. These tips are useful to anyone with kids but I'm sure particularly valuable to other parents in your situation. Nice one!
S

Tilly said...

I'm already doing no.8, need to do some serious work on no.4 and thanks for no.6 as I'll definitely be needing those words!

Sally said...

I absolutely love this. It is fantastic. And very helpful.You have a wonderful way with words and really know how to make us laugh, as well as make us realise we are not the only ones going through a similar journey. I would love it if you would consider appearing as a Guest BLOG on my own at http://www.blog.limemag.co.uk Let me know what you think.
Kind Regards

Sally Huggett

wishihadakarmaanghia said...

Thanks, S! My glamometer is fine as long as you ignore the dribbles of food down my front (my own work - nothing to do with J)!! And Tilly, yep - number 8 is the easy one - housework doesn't come naturally to me at the best of times so it's a good excuse! Sally, I'd be delighted to be a guest blogger - will contact you to discuss. Thanks for your comments x

Casdok said...

Think you have got it all covered! Good list :)

Shrinky said...

Oh Kristina, such a brilliant, insightful post, written in only the way you yourself can pen it - I am sure many of us can identify , I found myself nodding, wincing and chuckling throughout - bravo, dear lady, I think you totally nailed it!

Our Sweet Sam has brought the spririt of Christmas alive in our house again. Our other teens are far too cool to get over excited about such things. He loves (and demands) each rutual, we MUST have mince pies as we decorate the tree, and background Christmas music is essential and non-negotional (grin). Only this morning hubby and I wondered if we would still make such a production of it, were it not for Sweet Sam. There are certainly many highs to negate the lows with having a special chappie in the family mix!

Shrinky said...

I forgot to ask, when are you going to tell us the "long story"?
(Curling up by the fire, waiting..)

wishihadakarmaanghia said...

Ah - ho ho - yes, well..... I had a little dalliance with a certain popular Broadsheet - all in the name of raising funds for Dogs for the Disabled and putting in my 10 pence worth of awareness-raising. I was assured that it would be a positive article - senior journo - blah blah - none of the sob-story, sensationalised tabloid blurb. 2 and a half hour interview plus 3 photoshoots later - there it was: half a page of technicolour car-crash journalism, fit for The Sun!!!
I was less than amused - made my feelings clear and managed to get a re-write of the online article. It's a bit better but the whole process made me feel a bit grubby. I'm going to stick to the blog from now on - Control Freak? Moi??!
Here's the link to the re-write - I think you'll see what I mean.. xxx
http://www.telegraph.co.uk/news/telegraphchristmasappeal/8148888/Telegraph-Christmas-Appeal-Meet-Judes-four-legged-saviour.html

Shrinky said...

I'm sorry Kristina, I couldn't get the link to work, could you please check it again, as I would love to read it? I do sympathise if your best intentions were taken and twisted - ugh (hugs). I had a bad experience too, once. Do you remember that programme "7"? they film a group of kids from a wide variety of backgrounds and abilities, then follow them every seven years on, with another documentary? We were approached to include Sam in this as their token disabled kid. Let's just say I walked away with a bad taste in my mouth - still, they found another kid in the end (poor sod).

Hope you and yours have a fantabulous, gorgerific Christmas, bonny lass. We are snowed in, the airport is closed, my Tesco Christmas shop has just cancelled, and the satellite has gone down on the telly - but I don't care - my eldest and hubby both made the flight home last night, and I have all my family under the one roof - who can ask for more? (Grin)

wishihadakarmaanghia said...

Hi Shrinky! Yes I do remember "7" - sounds like you had a lucky escape. It's a tough one - protecting our "special" ones but desperately wanting the world to understand them better. Some parents seem to go all out to fight for awareness but personally I don't want to leave a paper trail that suggests that Jude's autism is an annoying problem. He is who he is and his autism is part of the many reasons why we think he's toptastic. That seems impossibly hard for journos/producers to grasp....!?

I can't get the link up so if you copy and paste the following into your top bar thingy, it should work:
http://www.telegraph.co.uk/news/telegraphchristmasappeal/8148888/Telegraph-Christmas-Appeal-Meet-Judes-four-legged-saviour.html

Have a brilliant christmas and birthday chez Shrinky. So glad all your chicks are home to roost, even if your Tesco man can't make it. There are always those wild chickens in the woods - look pretty tasty to me.......yum yum! Lots of love xxxx

Susan Wallman said...

Hi Kristina - I read the article...I hope you at least got some good photos out of the photoshoots?
Happy Christmas! (How about a Christmas post sometime?)
S

FoodMuster said...

I saw Fonzie and had to read this post, not knowing it was going to be about! I work at a school for children with mental and physical disabilities and a lot of our students are autistic, so I get just a little bit of what it can be like. Raising kids in general is hard and trying to make good decisions for them even harder, but add the fact your child is autistic or has a disability of any kind, that's just amazing and my hat goes off to all parents who are in this situation. I came across your blog at FYBF, but please also take a look at my other blog, I am in the process of posting about some of the syndromes the students have at our school, www.mummyrants.blogspot.com

Unknown said...

I love this! You're spot on with all of it!