Ridiculous Road Trips

On the recommendation of a friend I recently listened to an excellent piece on BBC Radio 4's Woman's Hour. The link's here if you want to check it out: http://www.bbc.co.uk/programmes/b08g2tng 
It's a fifteen minute interview with a very articulate, obviously intelligent lady on the difficulties of being both a carer and a mum to a disabled child. This might not be on the radar of many typical parents. I mean, how can you be a carer and a parent? All parents are carers right? Taking care of all kids is a tough task.....no?

Well. Let me spell this out clearly. 

Typical parenting tough - a bumpy journey from the shocker of Babyville to the comfortably predictable Grown-Man's-Land. Sure, there are rough points. Sometimes the kids all get carsick and the vehicle interior ends up redecorated with putrid smelling sweetcorn and carrot (wtf is with the magical veg-in-all-vomit thing?) But it's all good, you're prepared for that shit, and although unpleasant, you're well equipped to clean it up. Most kids get sick once in a while- no biggie. 

Occasionally there's a diversion en route- accident, fuck-off huge herd of sheep, roadworks, that kind of thing. Annoying, yes. Especially with Ten Green Bottles ringing out for the fiftieth time in an attempt to keep all hell from breaking loose in the backseat. Life-changing? Not so much. The Sat-Nav redirects, and you're OK. Sure, sometimes you end up pissing in a nettle patch and stinging your nethers along the void-of-all-reasonable-places-to-pee route. But other times the alternative scenery is totally breathtaking. 

Finally, despite varied and tricky deviations, you reach your picket-fence destination. Civilised. Expected. Peppered with universities and jobs. As a bonus you've picked up some mates along the way- other families on a parallel journey to yours. The kids are in tact, and by that I mean grown, alive, and half-decent humans. You congratulate yourself on a job well done and rest easy; the tough part's over, and you're no longer needed in quite the same way you once were.

By wild contrast, I give you parenting a la autism. First up, getting out of Babyville is like that scene in Independence Day after the aliens arrive and blow up the Empire State Building. Logjam. When you do finally make the next journey phase, your TomTom gives up almost instantly on negotiating routes through the green lanes of not-proper-roads upon which you find yourself. 

Nothing is expected. Nothing is easy. The usual service stations are nowhere to be seen, and the few you do stumble across resemble something out of a Tarantino movie; creepy one-man jobs selling hugely expensive fuel and dodgy snacks you're not even sure are edible. Nettle-pissing is highly preferable to the spider-filled outdoor portaloo, and you feel completely powerless as the phrase 'beggars can't be choosers' is tangibly realised in your life. 

Does any of this mean you're not still totally in love with the baby in the backseat? No. Of course it doesn't. Your kid is still absolutely excellent. But parenting that kid? That's rough. Autism is a hidden condition, and in my experience out of sight out of mind holds true regarding cultural attitudes toward 'invisible' disability. This, amidst obsession with rating each other's parenting capabilities, does not make for an easy road.  

That said, my boy is genuinely hilarious, and the punk in me loves his utter defiance of every social norm going. The following gems are actual real life shit I've been genuinely privy to in my time as an autism parent. 

- I've prised B's hands from cute little animals at Pet's Corner while he's squished them to within an inch of their life. I have, however, avoided mouth-to-mouth on a rabbit thus far.

- B's strong need for sensory input has resulted in making himself vomit through over-indulging on the gag thing. I've been forced to explain my child's bulimic-like behaviour to fellow humans in the supermarket while they've watched on in sheer horror. 

- Puddles are for water play - with your face. Obviously, everyone should know this fact.

- Three seconds without line-of-sight supervision results in dramatic airlift-esque rescue from behind the TV/through the stair gaps/wherever else he's decided to post his good self. 

- My reccie skills are honed to sharp perfection; I'm at least two seconds ahead of him on spotting anything in a room he might break or damage himself with, and at least one second ahead in swiftly removing it. 

- Running into people of the more cuddly variety is an absolute thing. I mean, really, who can blame the kid; we all need a squishy hug every now and then. Also a thing is dribbling down well-endowed lady cleavages. *sigh*

Since it's Autism Awareness Month, I thought as well as the insight, it might be useful to reiterate some of the things that aren't so conducive to the ASD conversation, and some of the practical things that really are.  

I couldn’t do it.

My problem with this little phrase is the embedded assumption that where you couldn’t, I could. The reality is this- we really can’t. We really can’t, but we absolutely have to. There are days I want to run away and start again, days where the daily grind crushes me to powder. Could doesn’t come into it- if you had to, you would.

It’s probably just a phase- he’ll grow out of it.

As humans, difference seems to sit uncomfortably and we automatically try and bridge any gaps with a jolly fix it comment.  Special needs parents are in a constant state of grappling with reality, and reminding us so harshly of what is NOT true for our children does nothing but delay this process. We're dealing with the differences- please join us in that too.

He doesn’t look any different to me.  

Well. You don't look ignorant. But here we are. 

It could be worse

This little throat punch is especially troublesome- to be told things could be worse means that we have already made ourselves vulnerable by letting you in on some struggle or another (but you’re right, my foot up your rear may worsen things for you today....) Of course tomorrow could be worse, but that doesn’t invalidate our trials of today. 

Having a child with autism defines our family. This is not our preference, this is just the way our shit got dealt. Let us talk about it without fear of being labelled obsessive or needy. Offer to help. Be authentically interested in the progress of our kids without trying to whitewash the chaos. Love them with us for the unique and incredible people they are. Don’t offer us advice. Take time to connect and hear us- I mean really hear us. Be patient when our fighting spirit occasionally overspills to you.

Happy Autism Awareness Week. By being aware, you respond differently. By responding differently, you change the world for our kids. By changing the world for our kids, you change the world for us. 

Thank you. 


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