By Kelly Wilton
I used to be that mum. The one who would make herself small and apologise for ‘those’ moments; whether it was apologising for myself or for something my kids had done (let’s face it, it’s mostly me, it’s where my kids get it from!)
I would try to bend over backwards to conform to what I thought the rules were – because that’s what we are told, right? Be good, do your school work, work hard, don’t answer back, don’t stand out (in the wrong way). Fit in, be cool but not so cool that you’re unattainable.
Then, I had kids. Kids with disabilities, chronic illness and a garden variety of generalised conditions when doctors won’t ‘name’ anything due to their young age.
It was different before my children with disabilities came along, when we were just a family of 3. It was all hunky dory because we ‘fit in’. We did not know the world of medical and disability jargon, the complexities of watching your child grow but not hit any milestones, and not track on the same developmental journey as their peers.
When my daughter’s younger brother and sister arrived (twins: no they were not identical – the amount of times I was asked that question – bizarre!) our world was shaken up and given a great big heave ho.
I won’t go into all the gory details about the early years right now (it’s still kind of triggering for me, years on and at times I need to just stop and shut up!). I tried my best to fit these 3 very individual little beings into our world as we knew it. I was out there attending all the things, going to all the things and doing all the things.
But you know what comes next, don’t you?
It stopped. I stopped. The clocked stop. The race for one thing after another, just stopped.
My husband ended up in a mental health ward and I wasn’t too far behind him.
Because in doing all the things, we weren’t actually doing anything.
We were struggling because we knew damn well that our family no longer represented a ‘typical family’ and society’s ridiculous notion of what a family should look like.
We couldn’t go to the family nights at the local school. We couldn’t attend parties, we had time limits on everything and sensory elements to consider. We still do. We factor in all this stuff in each and every time we go out. Fi
There is still not enough representation or places that welcome diverse families – sensory elements are not considered, not factored in. Accessibility issues are rife. Talk to any family experiencing this and they will tell you the same.
Our needs for the entire family, are not being met by a society that deems to be inclusive.
Only recently, I witnessed a mother being told to ‘quieten her child down’. The request was from a worker who thought the child was a toddler (the child was out of vision to the worker). However, the child was 9 and non-verbal. But those who know, agree that non-verbal does not mean nothing to say! Discrimination is everywhere, you notice it when you are at the end of it.
Why should our neurodiverse kids be made to feel uncomfortable, and our families too – the mums, dads, carers of children? We are just out and about, non-conforming to your stereotypical idea of a family that is quite frankly, out-dated and kind of boring.
If my friends kids get asked to leave, then we all do. We stick together.
It is time for change and it’s long overdue. There needs to be more places and spaces created for families like mine, like yours. We don’t want to ‘fit in’ – we want space created for us.
There are spaces popping up, sensory spaces, playgrounds, sensory times, sensory cinema screenings (albeit obscure times, not everyone wants to go to the movies on a Sunday morning!). And of course beautifully inclusive events where all diverse families can attend – Source Kids Disability Expo, theatre and dance experiences for the whole family where everyone’s needs are catered.
It’s actually not that hard, create spaces were people feel genuinely included by their fellow person. A safe space.
That’s what we are about – we will do it. We will make these safe spaces, we have started off small, but now the stampede is coming.