Sunday, 10 June 2018

Why ‘I couldn’t do what you do’ isn't enough | How to really help parents with autistic children


A month or so back I was interviewed by Kate of A Playful Day podcast alongside fellow blogger and autism mum, Vicky from Owl and Accordion (you can listen to it here). On the day of recording we talked for hours about issues around parenting autistic children – what it’s like, the tough bits, and also how those around you talk about it.

I couldn’t do what you do’ was a comment we’d both heard many times, and it’s easy to see why many people say it.
If you’ve witnessed an autistic kid pulling his mum’s hair and screaming in her face because the IKEA café has a broken milkshake machine (true story: I know because I am that mum), you’d be forgiven for watching out of the corner of your eye and thinking ‘blimey, someone needs Supernanny’. If you know someone with a special needs kid, you’ll no doubt have seen similar and you might’ve said a little word of gratitude that your already complicated enough neurotypical life doesn’t have this layer of nonsense to deal with.

It’s taken me since then to work out why ‘I couldn’t do what you do’ bugs me so much despite its best intentions. It’s not that I don’t have a choice in the matter, I’ve long since made my peace with who my child is and I accept, no embrace, all the bad and good that comes with the autism. In the podcast, I pondered whether that phrase translates as ‘I’m glad I don’t have to do what you have to do’. But it’s not that, either.

To really understand what it means, you have to know a little background about my child and what it’s like to parent him (which is going to be hard to write while maintaining a level of privacy, but let’s give it a go).

My boy is seven but try to remember back to the toddler days where you couldn’t take your eye off them for a second, and you’ll have a little understanding of why I’m so tired all the time.

Eyes off? These are the sorts of things that could happen:

  • Gets knife from kitchen drawer and cuts his hand but is so terrified of blood he doesn’t tell you until you see it dripping on the floor
  • Tries to scratch/hit/strangle sibling
  • Pours seeds all over bathroom floor
  • Unlocks front door and runs out
  • Blocks loo with an entire loo roll
  • Removes every single cushion and blanket from the sofa, might knock over a table or two (< this can happen multiple times a day)

And so on. The only reason that list isn’t triple the length it easily could be is it’s too upsetting. It’s still exhausting just reading that short list, isn’t it? But maybe it doesn’t sound much beyond a naughty seven year-old. There’s more.

There are the BIG questions that keep me awake at night: whether he'll survive mainstream school or if he'll have to move to specialist school. If he'll even be able to take GCSEs, get a job, live independently. But let's not get ahead of ourselves.

Imagine how every minute of your working life could be and often is interrupted by a call from school. The name of the school flashes up on your phone and you’re immediately hit with that creeping anxiety that begins in the pit of your stomach and rises up to your lungs so you can’t breathe properly. What now?

Can you come and get him?

Why?

‘He’s locked himself in a room and we’re worried he might hurt himself’
‘We have to report that kind of language to the head’
‘You need to get him from the school trip now’
‘His behaviour has endangered himself and others’
‘We’re going to have to exclude him’
‘He can’t go to forest school unless you come with him’
etc.

And this is in addition to the many regular meetings you have with school, the teachers and the SENCO (school special needs co-ordinator), the educational psychologist, the speech and language therapist, the occupational therapist, the specialist autism team, and more. Every day I thank my lucky stars that I can work my day job around these constant interruptions. I don’t know how we’d survive otherwise.

Or how about the reality of the situation which is that he’s rarely invited to birthday parties but when he is, it’s to a Laser Quest party. Kids like him have incredibly complicated sensory processing needs. A dark room with flashing lights and people creeping up on you with guns? About the worst possible environment. But you want him to join in with his friends and so you call the laser place in advance and explain the situation. You’re allowed to go down for a dry run, you walk your kid through the empty archways, knowing it’ll feel completely different when that cellar is full of screaming kids with yours as their quarry. You accompany your kid to the party, offer to go in with him, wait around – the only parent there – on tenterhooks waiting for something to go wrong. A constant state of high alert. Mercifully, it doesn’t go wrong and the only thing you end up doing differently is to respond when, halfway through the birthday tea, he tells you he needs to go home RIGHT NOW.

You might have the tiniest glimpse of what it’s really like by now. And the above has probably just made you even more likely to say ‘I couldn’t do what you do’. I get it – and thanks. But here’s what I really need instead.

There have been two turning points in my thinking. The first is the film Wonder. It’s about a ten-year-old boy called Auggie who lives with a genetic condition that’s left him facially disfigured. The film is about Auggie starting school after being home-schooled. It’s as excruciating as you’d imagine. There’s a scene in which the headteacher (who is everything you’d want from a caring head – I adore this character) explains to a boy who’s been bullying Auggie: ‘Auggie can’t change the way he looks so we have to change the way we see’. Spot on.


The second was a session with the speech and language therapist. We were talking about my son’s speech and how he isn’t always able to make himself understood. She said the best way to respond isn’t to say ‘I can’t understand you’ but instead ‘my ears aren’t working today’. The reason? She explained that the load my boy carries is already so heavy and if we can take some of that load onto ourselves then why wouldn’t we?

It all became clear to me


He has a registered disability (yes, pink card and everything). He can’t change that. His load is unbearably heavy. He knows he’s different. That’s the problem with Asperger’s or high functioning autism (whatever you want to call it) – the knowledge that they’re different is always there, and it’s pretty much insurmountable.

So ‘I don’t know how you do it’ acknowledges that autism families carry heavy loads but it doesn’t go beyond that. It stops short of helping to carry the load. It acknowledges an imbalance in capacity but doesn’t offer to share the burden. It's like walking alongside someone carrying two huge bags of shopping and cheerily saying 'that looks heavy!' but not offering to take one.

Here are some examples of people who’ve taken some of the load from us and have allowed us to live just a little bit lighter, just for a while.

There’s the extraordinarily kind family who ask my boy over for playdates. They remember what toys he enjoys, what games he wants to play, and they set those up before he arrives. They ask in advance what he’d like for tea and they accommodate that. They send me pictures and updates during the playdate, just so I can see how it’s all going, just to put my mind at rest.

There’s the little girl in his class who takes an interest in his current obsession (right now it’s Pokémon) and brings him related toys from her bedroom she no longer plays with.

There’s the mum from school who used to be a teacher who gives SEN advice and support so freely, never making me feel that I’m a burden to her.

There’s the family who invited him over for a sleepover – the first he’s ever done – and never once made it feel like there was anything even remotely unusual about this.

Aren’t they brilliant? Want to know how to be brilliant too?


How to help parents with autistic children


• You can't always tell when someone has a disability. Respond kindly, not judgmentally.
• Don't make assumptions about a child's potential based on a label. People with disabilities have a range of capabilities, just like anyone else.
• If people seem to be struggling, ask: "How can I help?" or "What do you need?"
• Ask questions about what their condition means to them and to their family. Be curious. Too often people keep quiet because they don’t know what to say.
• Remember that there are over 11 million people with disabilities in the UK
• Autism affects more than 1 in 100 people. Over 700,000 people in UK are autistic, which means that 2.8m people have a relative on the autism spectrum.
• Saying "at least it's not cancer" is not helpful.
• If there is a child with a disability in your child's class, invite him or her over to a playdate, or include him or her on the birthday party list. Too many parents of children with special needs kids say their kids miss out on peer activities.
• A quick call to parents about practicalities – food, activities etc –  is never unappreciated.
• And one last time: don't stare. Really. Just don't.

(Adapted from Joanna Moorhead’s brilliant Guardian piece about the Mumsnet ‘This is my child’ campaign.)

And finally...

Think about the positive effect this can have on your child, equipping them with the emotional tools to interact with people with special needs. No one is saying that the relationship my autistic child has with his brother and soon-to-be step-brothers and sister is easy and doesn’t bring huge challenges and a lot of frustration. But by talking to them and explaining his needs has, they’ve learned kindness, understanding, patience and acceptance, all of which has made them genuinely better people.

Who wouldn’t want that for their child? And, actually, for everyone.

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