I want to explain what it's like living with Gabriel. How we manage. How he affects us - Christian, his older brother; Jacob, his younger brother; Neil, his father; and myself.
Gabriel is 14, quite good-looking, but - and I'm going to be blunt - an idiot. This is not an insult, it's a fact. It is the word that describes him most accurately. Terms such as 'mentally handicapped', 'disabled', 'people with learning difficulties' are all used to describe people such as Gabriel. One term succeeds another as attitudes change, and people attempt to dignify these fellow human beings. And rightly so.
But the words 'mentally handicapped' cover a vast range; Gabriel is to an able Down's syndrome child as I am to Albert Einstein. 'People with learning difficulties' needs to be qualified. After all, we would all admit to a few learning difficulties, even 'severe' ones.
No, I use the word simply to convey just how handicapped and utterly helpless he is. He does not speak and has very little understanding of language; he has no sense of danger, no skills (he can't play Beethoven by ear, or draw St Paul's Cathedral); he is hyperactive, obsessive and still shits in his pants. He's a wild boy, an enfant sauvage.
Half-term and home for the week. Just take it a little at a time. Try not to get wound up. Get up and get Gabriel dressed. Left to himself everything is on back to front, inside out, even upside down. He doesn't care. He doesn't even appear to notice when his shoes are on the wrong feet, it's all the same to him. Wash him - he hasn't a clue how to wash himself, or to keep himself clean. He couldn't care less.
Breakfast next. While I am in the kitchen he has started digging into the peanut butter with his hands. Here we go. The clean shirt has already been smeared with peanut butter and there is some on the wall. Never mind. But if only he would ask] We and his teachers have been trying to teach him to do so, but Gabriel has 'learning difficulties'. A wail comes from Jacob: 'Gabriel's taken my toast.' 'Why don't you ask if you want something? Don't grab.' Now what? He is tugging at my hand. We all know what he wants. He takes me to the hi-fi and pushes my hand towards it. He wants music, non-
stop, all day. I put something on, very low. If I refuse, he will ask each of us in turn, 10, 20, 30 times. We will tire of refusing before he tires of asking.
Breakfast over, I go upstairs and make sure all the bedrooms are locked, otherwise he would climb out of the windows. Or he might start paper-tearing - a favourite occupation - or turning out the drawers. All sorts of things a toddler might get up to - but he has the body and strength of a 14-year-old. Check the front door is locked and hide the key. He likes escaping; it's one of our main problems. The doorbell rings. It's one of Jacob's friends. Now, where did I put that key? Jacob and friend would like to go somewhere as it's half-term, but that's impossible. Gabriel's behaviour is too erratic and disruptive and besides, a visit to a museum or a zoo is of no interest to him. Jacob and friend go off to the park with the football. Sorry, boys, we'll go somewhere next time Gabriel is away at respite care. Jacob is nine, he understands. Christian goes to his room. He's doing A-levels. He locks himself in, or, rather, locks Gabriel out.
Ten o'clock and Gabriel is now into his main daily activity - running up and down, fiddling with a collection of his favourite things. Today he has several laces, a handkerchief, a belt, a dishcloth, bits of elastic, a glove, a funnel and a toothbrush. Damn, he's just snatched away the tea-towel I was using. Now he's got my glasses. Quick, before he breaks them. In and out he runs, twirling his laces, taking some new object to add to his collection. Fiddle, fiddle, fiddle. Back and forth, back and forth. Each time he goes into the garden he picks a few leaves, shreds them into little pieces. There are bits of vegetation (a lifelong obsession) all over the dining room floor. Never mind, at least he's happy. It'll be a lot more untidy by the end of the day. Wait a minute, where is he? Climbed into next door's garden. 'Gabriel, come here]' He ignores me and pulls off a handful of leaves. I grab him and bring him back. He's grinning, pleased at having given us the slip. These little escapades give interest to his day and keep us alert.
The watchfulness demanded from his carers is a constant pressure and, of course, is easier shared, so I'm thankful Neil is at home. Not by chance; he is a carpenter and usually contrives to have some home-based work during the holidays to help look after our son. I need to go to the shops and don't like to shop with him on my own. He doesn't always behave badly but it's quite likely. He has become more assertive with adolescence.
'Won't be long.' I slam the door behind me - a brief freedom, but I'm back within the hour. Neil is making a bookcase that requires a fair bit of concentration and doesn't leave much over for Gabriel.
'Everything all right?' 'Yeah. He got into the glue - made a bit of a mess. I'm afraid he picked some of your favourite flowers, too. I've changed him twice.' Neil does his share of the dirty pants.
Now where is he? 'Gabriel's got the washing-up liquid,' Christian calls. Damn, forgot to lock it up after breakfast. He likes drinking it (really]) and blowing bubbles. Rush indoors. 'Gabriel, give me that please.' No response. 'Give it to me.' He runs away, laughing. Keep calm. No point in confronting him - he'll probably win - but can feel my blood pressure rising nevertheless. 'GIVE ME THE WASHING-UP LIQUID'. Suddenly, surprisingly, he smiles and hands it over. Gabriel never does as he is asked first time and enjoys these little tussles. Lock the washing-up liquid in a cupboard with various forbidden objects and foods.
Gabriel spends the rest of the morning turfing out the cupboards and drawers. Neil says he's exploring. I'm not sure, but he's certainly intent on this new occupation. Still, it's lunch time already and he is hungry. 'Wait, I'm getting it. It's coming.' He's very impatient. 'I'm doing it as fast as I can. There. Now, put those leaves down. Sit down. No, you can't run round the garden with it. SIT DOWN. Now you've spilt your drink. Oh, Gabriel . . .'
The afternoon lies ahead and I really should take our wild boy out.
'Do you want to go for a walk?' Quick as a flash Gabriel puts his hand to his lips; his one sign. It says: Yes/Please/Sorry according to context. He likes a change of scene and fortunately we live next to the Grand Union Canal, which is always pleasant to walk along. Even better, there are no cars to worry about and Gabriel can swim so I'm not too nervous, but I'd better go upstairs and put my trainers on in case he does a runner.
Gabriel bursts out of the front door and off we go. He bounds along, continuously picking grasses and leaves as we go. Twirling them endlessly. Fiddle, fiddle, fiddle. It's the relentlessness that gets to you. But today I can ignore it. The sun is shining, the canal looks beautiful and I can hear a cuckoo. The steady rhythm of walking has slowed Gabriel down a bit and he is humming a little tune. He's being a good boy and we walk for a couple of hours.
Back home Christian is mad. He wants to go out but Gabriel has taken the laces out of his trainers and he can't find them. I tell him he shouldn't have left the shoes lying around. He should know by now. But it is exasperating and I sympathise really. Meanwhile, Jacob comes downstairs laughing. Gabriel is trying to unlock a bedroom door with a teaspoon.
As I cook Gabriel looks in saucepans, snatches morsels, sits on the wastebin, opens the oven door and doesn't close it, turns the taps on and leaves them running. I'm feeling harassed and patience diminishes as the day proceeds. Finally I lock him out of the kitchen and ask Christian to keep an eye on him. As usual he wolfs down an enormous meal. All that running uses a lot of calories, and he hasn't finished yet. Gabriel helps to clear the table - he takes things to the kitchen and then brings the same things back.
Eight o'clock and his pants are dirty again. My turn to change them. Calculate I have done this 10,220 times. I'm trying to teach him to put his pants on the right way round. He has four attempts. He is completely unmotivated. Be patient. Try not to shout. Remember, he's autistic.
Nine o'clock and we want to watch television. Gabriel doesn't like us watching and he stands in front of the screen. We all shout. He turns the set off. We shout louder. He runs away smiling, pleased at having provoked a reaction.
Bedtime. Neil washes him and gets him ready. I put on his nappy. There's something incongruous about putting on a nappy now that he has pubic hair. Put him in his room. Cross our fingers and hope he won't keep us up till midnight. 'Goodnight, Gabriel'. We hear him padding about and muttering for 20 minutes, half an hour, then silence.
'I think he's gone off.'
'Shhh, don't say it.' But he has.
So that's one day of the holiday gone. Quite a good day, really. Gabriel was happy. No outbursts and he escaped only once. He enjoyed turning out the drawers and his walk, and so did I. He's a charming, lovable little fellow at bottom, a bit trying at times, but he can't help it if he's autistic. Gabriel is Gabriel.
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