April is autism awareness month
Day 30: The Village
Public awareness events such as ‘locked in for autism’, autism awareness month and ‘light it up blue’, brings autism to the forefront of peoples thoughts and with every event there is a degree of further understanding, further insight into the everyday difficulties experienced.
But then invariably May comes, the marathon is over or the next campaign starts and the focus shifts away from autism.
And that’s fine – there is more to life than autism.
For Dylan nothing changes, he is who he is and autism runs through him like the writing through a stick of rock.
I cannot tell where Dylan stops and the autism begins, nor can I imagine if Dylan didn’t have autism or if he could speak freely, I simply cannot picture it.
But despite these differences Dylan leaps on, every morning we are greeted with a smile, a giggle and a grunt ‘hello’.
Dylan tries so very, very hard at understanding the complex and ever changing world we live in – the rules, the social expectations which are forever changing depending on where we are, who’s he’s with and how old he is. Every lesson learnt changes without warning but still he bravely faces every day with a grin and he continues to always try his absolute best.
He is so amazing. He’s my hero.
Dylan is a likable young man and it has taken us many years as parents to strip through the complexities of his autism and communication difficulties and get to know Dylan; his likes, his personality and the reasons behind why he has some of the behaviours that he does.
I have shared a lot of these experiences and lessons that we have learnt in the past 30 days.
One of the biggest lessons learned is the realisation that as parents we can’t do it alone.
Yes, we can bring Dylan up in a safe and secure bubble which protects him from unexpected noises.
We can queue for him so that he doesn’t have to.
We can get to know him so well that we can anticipate his every need and he won’t need to ever communicate because we will ‘just know’.
But where does that leave Dylan?
He is a fit and healthy lad who by rights should live until he is in his 70s, he should outlive us as parents, what would happen to him then? How would he cope?
It wouldn’t be fair to leave him so vulnerable.
That’s where the Village comes in – like the proverb ‘it takes a village to raise a child’. It does – it really does.
We can prepare and teach Dylan about the world.
We can teach and prepare the world about Dylan.
But that’s just it, after then, it’s up to village; we as parents can’t make it work.
Dylan can’t do it alone.
We need you. You are the village.
The posts over the last month have been quite therapeutic to write but also reflective. I think it is important to reflect on the past and realise our aspirations for the future. This also ensures our methodology and efforts for Dylan truly has his best interests or wishes at the core, confirming that we remain on the right path to helping him. By reflecting and discussing this publicly kind of makes the journey more purposeful, more concrete and it certainly helps it to make sense.
So looking back over the past few weeks Dylans posts have had a recurrent selection of themes which could be referred to for when Dylan needs his village.
1 – See him. – Don’t pretend he isn’t there. Don’t pretend you haven’t heard him, but also don’t gush at him, he doesn’t know how to handle that, any excessive interest in him confuses him as to what may be required which makes him more anxious.
Smile, be friendly, and be normal.
2- Give him time – Everything takes longer for Dylan; don’t think he’s ignoring you if there is no response straight away.
Don’t move onto your next customer or move away from him, just give him a few more seconds,
May be try again.
He can and will answer you.
3- If concerned, look out for the watchers. If you do see Dylan or someone like him in the street, or a shop, appearing aimless or skipping and flapping and you’re unsure of what to do – providing everything appears safe – just wait and watch for a minute.
I bet that if you look to the wider circle you will see a relative or a caregiver in the distance, probably looking super suspicious hiding behind the shelves of baking potatoes or I may be staring intently at my phone set to outward camera so that Dylan doesn’t realise that I am watching his every move.
Chances are he is safe and being observed but please just take a minute to check, if you can’t see anyone or you are concerned then pop over to him, say hi, see if he is okay or he needs help.
4- Be aware of overwhelming senses – pretty perfume to us smells so much stronger to Dylan, a dodgy lightbulb can seem to make the lights flicker and buzz loudly, unexpected noises are intensified, a gentle, reassuring touch can be startling if Dylan is already experiencing heightened sensations from his surroundings.
That extra bit of stimulus could challenge his concentration to keep everything focused in his head.
Be aware that the whole environment makes things harder for Dylan – there is not a lot we can do about it but be aware that it has an impact on his ability to communicate, to remain on task and to follow direction.
5- Friends with children; I know you teach your children how to be kind and compassionate but being inclusive is not always understood by children or adults alike.
Inclusion isn’t massive nor a big gesture, its offering to play, smile at each other, sit and eat a meal together.
Inclusion is remembering that being in each other’s company in silence is okay.
Taking time to talk is okay.
To slow life down a notch so that everyone can experience it together is okay.
In a world where teenagers are increasingly pressured to grow up into reality TV stars and live life online at a million miles an hour, my child is getting left behind.
There are lots of really good normal people out there in the world. Lets remind the next generation that it’s more important to be one of the good ones.
6- Finally always presume competence – Dylan can see and hear everything around him, he can see the looks and the smiles, even if he doesn’t acknowledge them.
Presume his competence, allow him an opportunity to try new things, to meet new people, to gain new experiences.