DIAMONDS IN THE ROUGH
‘I don’t know how you do it,’ said the sales assistant in the chemist’s shop.
I had just been telling her about our latest episode of sleep deprivation. Honestly, if I had a pound every time someone says that to me, I would be rich by now! When you tell people that two of your three children have severe autism and relate some of the things that happen, they always assume that it must be a terrible life. I admit, when things are not going well, like the time my ten year old daughter attacked me so badly in our market town, that passers by intervened to restrain her and the emergency services were called, I have moments when I wonder how I do manage. It is certainly possible to understand how some families just cannot cope and make the agonising decision to put their children into residential care facilities, but for all the bad days there are good days too, times my wonderful children make you feel proud and privileged to know them.
Stepping out of the shop into the bustling market square, I check my watch and walk out of town, down the hill to collect my daughter from her special school. She hasn’t been there long, but already we are seeing an improvement in her behaviour at home. It is now several months since she last attacked me. The school, however, are not finding her the easiest of pupils to deal with. I’m a little anxious about what mood she’ll be in this evening and, to distract myself from thinking about it, I chat brightly to some of the other local parents waiting for their children.
The children begin coming out; they are individually escorted to their parents by school staff. As Hazel comes towards me, my eyes take in her appearance, the expression on her face, the belongings she is carrying. Has she got everything? Is she stressed or happy? In seconds I have worked through a mental checklist, which will influence the course of the evening and night to come. She looks tired but relaxed, that’s good.
‘Bye Hazel’ says the young blonde teaching assistant, as she hands her over to me.
Hazel’s eyes flicker, but she doesn’t respond.
Taking her bag from her I prompt; ‘Say goodbye.’
‘Ba,’ says Hazel, with a half hearted wave of her hand.
The teaching assistant gives me a brief wave of her hand, before turning away to escort another young person out of the school.
‘Hello Hazel, did you have a good day?’ I say, not expecting a response. I rummage in her bag, for the home/school diary which will, hopefully, tell me what Hazel cannot. Today there is no message. Well it can’t have been a bad day then! Pulling out a small bundle of letters to home, I find a laminated certificate:
Student of the Week
Awarded to: Hazel Grant
Presented for: Super cutting and sticking and excellent numeracy.
The certificate is already crumpled from handling; I show it to Hazel,
‘Good girl Hazel, well done!’ I back up my words with signing.
Hazel looks at it, smiles and signs ‘good’. She might not be able to talk, but there’s a lot more going on in that head of hers than she is often given credit for.
Arriving home, I switch on the gas under the vegetables prepared for dinner earlier in the day. In a household like ours, where there are always more tasks needing to be done than can be realistically achieved, being organised is imperative. Inevitably, we spend a considerable amount of time in meetings with an array of professionals who seem to be chasing a pointless paper trail of procedures that prevent them from supporting us effectively and us getting on with the practicalities of day to day life. I imagine a wall with parents one side and professionals the other, everyone continually banging their heads on the brick wall of bureaucracy.
Settling into the better organised evening routine of a day unhindered by meetings, Hazel and I wait for the rest of the family to come home. His arrival heralded by the car being reversed down the drive, my son, Jamie, comes bounding in, followed by my husband.
‘Spurs, are on their way to Wembley,’ Paul hollers. He will have also done a quick-fire assessment of Jamie’s mood; the fact that he’s singing football songs means all is well.
Jamie might be seventeen now, but he is basically a very large toddler, totally reliant on us to meet all of his needs. Affectionately nicknamed Tigger, he literally bounces through life. Hyperactivity is part of his character, it is a regular part of our life that the day may dawn without him having actually been asleep at all the night before; leaving us remarking on the irony that someone who is unable to speak can spend all night making so much noise. He has a wonderful falsetto yodel, considering that his voice broke a few years ago! This evening it is good to see that our ‘Tigger’ has his bounces back after being very unwell with a nasty cold. He is also very affectionate tonight and comes for a cuddle, bending down to rest his head on my shoulder, he flutters his ‘too long for a lad’ eyelashes at me, gazing up with his gorgeous eyes, whose colour are an elusive, greenish, blue/brown.
‘Ahh, mmmmm, dadadada, mmmm.’ he babbles contentedly with the cheesiest of grins on his face.
Eventually our other daughter, Heather, arrives home, having, in the way only teenage girls can, made a ten minute walk home from high school take over an hour. She is frustratingly normal and after grunting an unintelligible reply to greetings and dumping her schoolbag in the middle of the hallway, where it is an immediate trip hazard, ensconces herself in front of the computer and plugs herself into online music and social networks. This is where she’ll stay for as long as she can get away with. She’s a different person at school, where she is seen as a quiet, thoughtful and potential A-star student, but for us, long gone are the days of ceaseless childish chatter and, like most parents of gruesome adolescents, we can’t wait for her to grow out of the antisocial and rebellious stage.
The evening progresses in the normal manner, organised chaos. Whilst Paul attacks the floor under the dining table with a dustpan and brush, I tidy dishes with the somewhat dubious ‘help’ of Hazel. Jamie was upstairs watching an ancient and well loved kids video in his room, but suddenly appears downstairs, stark naked. This is what difficulties with social interaction look like at our end of the autistic spectrum!
‘Jamie, trousers.’ I say to him; he only understands very simple sentences.
As he goes back upstairs, I think back to just a few months ago, when I would have been trailing up the stairs to assist him with this simple task. Out of the blue one day, to our surprise and delight, after endless years of trying to teach him dressing skills, Jamie had put his pyjama bottoms on, appearing downstairs, trousers on, inside out, back to front, but unmistakably, independently, on! As we celebrated as if we’d bought a winning lottery ticket, Jamie had escaped back to his room, not liking all the fuss.
Hazel has now taken herself upstairs and, finished with the clearing up, Paul goes up to check on the pair of them.
‘Hey, what are you doing to him?’ I hear him exclaim.
Thinking to myself that the evening had been going a little too well, I run upstairs, to see what minor catastrophe has occurred. There is blood everywhere.
‘Jamie’s had a nosebleed and Hazel was dabbing at his nose with some tissue.’ He explains.
‘What a good girl Hazel, were you trying to help, that’s very kind’ I say and sign to her.
Not only am I grabbing at the opportunity to use the word ‘kind’ in context, but this is a prime example of how such children can prove all the theories wrong. People with autism are, apparently, supposed to have little or no empathy, but here is one severely autistic person coming to the aid of someone more profoundly disabled than herself. It’s not a one off incident either. I remember the night when Jamie was sick whilst we were asleep. In the morning we discovered that Hazel had tried to clean him up, then got him some clean pyjamas and helped him put them on.
Paul and I exchange looks of mutual understanding and pride.
‘Aww, what a little sweetheart, she is!’ I say.
Like raw diamonds my children may look unrewarding, but look a little deeper and you will see glimpses of the glittering purity and pricelessness that lies within. They truly are diamonds in the rough.