Wednesday 10 January 2018

Square pegs in a round hole

Where do you go when you don't fit it? It's simple really you usually go nowhere. I'm constantly frustrated that Bella is a square peg in the round hole that is society but that's no secret. I'm always spreading Autism awareness and understanding by blogging, talking to people and just refusing to not stop taking Bella out into the community.  I know lots of people through my work who all have children with disabilities, mostly autism but there is a very wide variety from very profound and rare conditions to ones that we hear of more often like Autism, Down Syndrome and Cerebral Palsy. One thing I have heard a lot from non-Autism SEN parents is that "Autism is fashionable" "There are so many Autism Friendly events." It almost makes me feel guilty for occasionally complaining that getting out is hard work.


But what happens when your Autistic person doesn't fit the mold that people expect. What if the Autism Friendly events (which I think are amazing by the way) don't suit your child? Logan prefers a dark cinema with loud sound..basically a regular show...but Bella finds all showings difficult unless it's a film she knows inside out.  Autism Friendly often doesn't account for wheelchairs which is an essential for Bella. 

I have two children on the spectrum with different needs but the same diagnosis.

What is the answer? Well I usually go to the regular showings as Logan invariably gets more from these types of things whether it be cinema, theatre etc but I still take Bella. She sits there with her headphones and iPad on, sometimes she'll sing songs (loudly always loudly) or kicking her footplate but at least she's not missing out. You have to grow a thick skin as a SN parents, you have to try and not make too much eye contact with people outside of your circle.  Most people are polite, even when they do the tut and huff, turning round in their seat to show their displeasure of the added accompaniments Bella is making they will realise...eek wheelchair...and snap their heads back round to the show or smile at me widely hoping I didn't notice their initial stern expression.  However some people just don't care and with grunt and tut their way through the performance wishing the noisy disabled kid behind them would bugger off.

I am not a brazen person, for the most part I am haunted constantly by social anxiety but Bella creates little for me.  Things have to go really far for me to feel embarrassed or awkward, even her shouting out "Ben and Holly's Little Kingdom episode one" "Ben and Holly's Little Kingdom episode two" at a recent showing of Stickman didn't really faze me..although it did make me giggle. She was in awe of the swirling disco ball lights and that was her appreciation shining through (she loves Ben and Holly!)  No, thankfully I lived in central London just long enough to grow my own set of blinkers, after month of walking through London Bridge tourist hoards at peak season you need them or you get swept away in the crowd.  Now I use them to block out the looks, the sniggers or the random pointed fingers.  Or maybe I just block out their intent, why wouldn't they look at Bella? She's beautiful. Why wouldn't they laugh or point? Sometimes her singing is so loud I can do nothing but laugh with her.  People used to stare at Logan when he was in his hat phase, well a kid rocking a woolly hat in July is a sight to behold, and then it was masks or costumes. It was just normal (well our normal) for him to have these comfort blankets that I'd often forget he was wearing them when people would point at him.

The public can be ignored, I don't care what they think.

What about when the places where you don't fit in are within your own family or friendship group? That kind of thing really stings. As a rule I rarely take Bella to new houses as she just has no boundaries, she seeks out beds and gets in them before even making it to the lounge. She'll run taps and line up your ornaments if you have them.  Often this doesn't go down well and it is then that my anxiety really kicks in. I've spent whole play dates following her around and trying to stop any unwanted behaviours, I've spent time at families houses holding my breath hoping that we can make it out without something getting broken.  Because of that we go to very few peoples houses. 

Luckily we have a small very accepting family and a few friends who are happy for Bella to roam. This makes all the difference and stops us from feeling like total pariah