It was a school friend who invited me onto Facebook in early 2008. I was interested, but didn’t really see the possibilities, until I lost my job the following December. Within a few months my son had been diagnosed with aspergers syndrome and I was working with the Child Benefit protest group PACUB, and Facebook became the hub for special needs support and on-line campaigning.
PACUB is now dormant, but the friendships I made are not, and some have now become autism mums too. And it is the autism mums that I turn to on a daily basis because even though I also have a severely disabled daughter, it is autism that dominates my life.
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I was as excited as a small child going to her first birthday party. I’d bought the ticket forAsIAm‘s first autism conference back in December with no notion of how I was going to get a whole day away from the kids. But with the help of my wonderful babysitter and my eldest daughter, plus lots and lots of lists, it was done. And all went pretty well, except when I got one panicked phone call after lunch when Smiley got stuck in the hoist.
From the start it was clear that this was going to be a very special day. There was a stellar line up of speakers including the witty and wise Dr Peter Vermeulen, and the inspiring authorYvonne Newbold who has raised three autistic children and is living with incurable cancer, plus well-known psychologist David Carey; founder of AsIAm, Adam Harris, and many more.
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I have a confession to make: I haven’t read the book. But with so many people talking about Marie Kondo, I’ve picked up a few tips and I’m thinking that I might be able to reduce the stress in my life by removing daily activities that do not spark joy. Sadly many of them have to stay. But making a few changes by following the principles in the life-changing magic of tidying up has given me several reasons to be cheerful for this week…
Starting with Socks
In this family we like to know our own socks, so everyone has to wear a different style. As a result I’ve accumulated a drawer full of hastily bought socks with dubious patterns on them that do not look very stylish when peeking out from under the hem of a pair of jeans.
So this week I “treated” myself to another set of black socks (with coloured toes and heels) which meant I could get rid of all the old ones that just annoy me. There’s nothing worse than the glimpse of a Santa hat on a sock in July. Well you know what I mean…
It can be hard to find activities at home that I can do together with my adult daughter with special needs. But film and TV often works, and thanks to Netflix recommendations, Smiley and I can always find something to watch.
For the last few weeks we’ve been enjoying some gentle nostalgia and we both recommend these two classics:
Set against the background of World War II, three children are sent to live with a middle aged woman who is dabbling in witchcraft. With shades of Narnia and Mary Poppins, this children’s classic from 1971 has catchy songs, animation and lots and lots of adventures, with a few messages about redemption thrown in as well.
The plot of this lovely cartoon revolves around an aristocratic old lady who leaves all her worldly possessions to her cats who are left in the care of her loyal butler. But after her death he feels aggrieved that he should have to wait until her pets have died before inheriting, and so plots the demise of the kittens and their mother. Their luck changes when they meet the charming roguish alley cat, Thomas O’Malley. The film also features stylish swing music including memorable tunes such as Everybody wants to be a Cat.
And next on our list is this film, which is available on Netflix for one month only until the end of April. So get watching…
Needs no introduction: Smiley and I are looking forward to watching this on the big screen in the living room, and I will *have* to sing along to keep her entertained – and with the state of my singing these days, I’d say we’ll both be laughing!
Because even if you’re aware of autism, accept autism and understand autism, most autistic kids need extra help to navigate childhood successfully. And most parents need help too. Maybe some autism parents are able to instinctively parent their child. Most of us cannot.
But to work out how to help autistic* kids, you first need to ask “what is autism?” And there are as many answers to that question, as there are autism ‘experts’.
I would see it as a neurological difference that means that autistic people experience the world very differently and that can make it a frightening, unpredictable, illogical and overwhelming place. Lights really can be blinding and sounds deafening, people confusing and danger seemingly around every corner.
Of course, this is what I think right now – ask me again in a year and I could tell you something different. And hopefully, less negative too.
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I had a grumpy McGrumpy intro to this week’s reasons to be cheerful, but I decided not to publish it here. It would jar too much with all the happy stuff I have to report this week…
- A problem with Smiley’s hoist got fixed. My son did it on his own initiative.
- Eating cake with Smiley and watching ‘Holiday Homes in the Sun’ after a busy day. It may be my favourite programme ever. Calm, relaxing and sunny escapism. No grit, no anger, no manic presenters, and usually no rain either!
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