By SWAN UK Member & Blogger - complicatedgorgeousness.co.uk
“You got something going on with the MILF music teacher with the backward lad?”
What would you do if you overheard this little gem of a conversation? Laugh? Not blink an eyelid? Bop them over the head with a heavy book?
It is not big, funny or clever really. Yet this is what someone said just last week. It wasn’t directed at me. I am not the MILF music teacher, though I’d gladly take the MILF nod these days (no, no, no… sorry I digress… the sentence is terrible on all levels in this day and age). *puffs up hair*
I mean what sort of mean, unenlightened person would say this?
It was an affable meant-no-harm policeman chap actually. A line in the new UK drama The A-word, which follows a family’s journey with autism. A programme that has drew mixed reviews from our cousins in the autism community.
I’m rather enjoying the series and especially like the mum’s hair and taste in jumpers (I’m in the shallow stage of my special needs journey). Apart from a small squirm, I took no offence in the statement – simply because it was put there to highlight the antiquated views that still surround a person with an intellectual disability.
Expressions like this still occur up and down the country (some better, some worse) and they seem to make the bridge between our reality and perceptions of it that bit wider.
Our distinct situation is hindered further by the fact there is no collective terminology. Because how do you describe a child like my son who has no actual diagnosis and therefore no label? A child who at five has the “medical sticker” of global development delay that will before long become a “learning disability” stamp.
Even in our own community, the term “special needs” splits camps and I personally struggle with the mouthful that it is “child with additional needs.” SEN or SEND (special education needs and disability) are gaining popularity, but it is another bit of jargon placing a gap between us and our “normal family” peers.
The hole then starts to become a gulf. The “us” and “them” camps seem further and further apart and soon nobody can be bothered to make the trek between the two.
The “I don’t know how you do it” and “God sends the special ones to special families” lines perpetuate this further. It is like when you have a child with extra needs you are placed in a box marked “dismal”. That it is the ultimate tragedy, the end of the world as we know it. Do not pass go. Off you trot to smelly Holland and all its ghastliness.*
*Holland is lovely, but apparently not Italy. Who knew!
There is undoubtedly challenges in raising children like Gabe and I bang on about them as much as the next person. Yet, what seems to get a bit lost in translation is just how blooming lovely our children are Try bonus, not burden (most days).
Alas there are still sizeable swaths of the population who get spooked in the presence of a SEN child. Maybe they think disability is catching, or they will eat them or something.
Silly maybe. Yet there it is.
So, what is life actually like with a “backward lad“?
It is average and normal, annoying and frustrating. It is glorious and magical. It is one filled with cuddles and snuggles. So many – all of the time. On your shoulder ones, curled in your lap ones and if I could open-you-up-and-climb-back-inside burrowing type ones. It is witnessing such simple joy. Pleasure expressed as soon as it is felt. Happiness shining out making you glow. It is the hand flapping and shrieks of delight. It is the life ahead with simple black and white emotions. It is the comical absurdness. Strange situations that make you chuckle. Hip dancing in church, horse hat wearing for homework and checking for sock droppy-offage in the dead of the night.
It is 30 fake sneezes for that one dirty giggle. It is the Teletubbies on loop (and cutting old flame Iggle Piggle dead). It is breaking your back re-stacking DVDs and watching with pride as they are flung again with a cheeky grin and carefree abandon. It is remembering which uncle does what funny trick. It is shuffling over and sitting on feet until someone picks you up. It is putting your fingers in every mouth that you meet.
It is your brother saying you are the cutest thing he has ever seen. It is singing twinkle little star for the 8912th time in ten years and knowing there is thousands of renditions yet to come. It is hiding under tables and getting stuck in corners.
It is Rocky-style fist pumping when a meal is eaten without fuss. It is coffee and cake in hospital canteens. It is learning the meaning of friendship with no words.
It is your sister saying you live like a lord. With a life to be envied. Spoon fed, lifted and groomed. It is being surrounded by people who adore you – that champion you along. It is working hard. Every day. Pushing your body to do all those difficult things that should be easy.
It is all the small successful steps, so hard won that they feel like lottery wins. It is knowing that there is still many battles ahead, but not looking too far ahead. It is living only in the moment. It is realising that nothing is perfect and that as long as they stay well and happy, you’ll take whatever is flung your way.
The aim of Undiagnosed Children’s Day is to raise awareness of undiagnosed genetic conditions and SWAN UK (syndromes without a name), the charity that offers support and information to families of children affected by these conditions. The theme this year is The Big Ambition and the aim is that all families affected by a syndrome without a name get the support they need, when they need it, regardless of whether their child has a diagnosis or not.