Join me on the Firefly Community page where I’m getting all touchy-freely: Hands-on Learning
Quality of life is a topic I return to again and again on Extra-Ordinary; it’s a difficult thing to quantify, being a subjective thing by its very nature. There are a few things that would feature somewhere on almost everyone’s list. Good realtionships is one of these, I think. Marriage is apt to be more like a rose bed than a bed of roses; it can be fragrant and beautiful, but includes thorns, bugs and dirt as an integral part of the package. Here’s a post I wrote about a year ago about our attempts to negotiate the additional pressures placed on our relationship by being ‘special needs’ parents…
Getting quality time alone together is a challenge faced by many parents. Factor a child with additional needs into the equation and the problem increases, especially if, like us, your babysitting options are limited.
Tim and I inhabit the same space a lot of the time; but I can’t say that we spend a lot of time in each other’s company, because we rarely get to speak to each other, except to make purely functional requests. The moment we attempt to say anything more than ‘do you want a cup of tea?’ Freddie inserts himself into the conversation, loudly and persistently trying to turn our attention back to him. He has to be taken to the toilet, supervised while he eats, and even while he plays, as he is inquisitive, mischevious (typical third child), has no sense of danger, and views rules as a dare.
Although he’s in bed by eight and can be relied upon, most nights, to sleep until at least 6am, as his brother and sister did before him, we don’t really get any respite. When our older two were little, evening was our time. Once they were tucked up in bed we knew that they were unlikely to disturb us, and if they did need anything they’d shout rather than come down, so we could shut the living room door and enjoy some time as a couple.
But not any more. Our once well-trained, obedient older children are now teenagers straining at the leash. They don’t have bed times. They come down and raid the fridge, invade the living room, take over the YouView box and snaffle our peanuts, or any other treat we’ve got. Since the eldest turned eighteen even our beer isn’t safe.
Yes, we have a bedroom with a door, but they rarely remember to knock before they come galumphing in demanding a note for P.E. or more toothpaste, shower gel or hot chocolate powder. Or we hear a sudden howl of anguish from downstairs, because someone has exploded something (not neccessarily food) in the microwave, or is trying to sort out a most unfortunately blocked toilet with a coat-hanger.
And so our previously redundant bath-tub, made obsolete by that ‘Johnny-come-lately’ the power shower, is enjoying a new lease of life as a place of recreation. Not least because we can lock the door.
The whole thing takes on the air of a midnight feast: we take up wine and nibbles, and borrow Freddie’s spill-proof portable DVD player. We fill up the huge tub, add some Matey bubble-bath (you can keep your grown-up ylang-ylang and aromatherapy nonsense — Matey gives the best bubbles ever), and light candles. Then we can enjoy the luxury of, not just relaxing in deliciously warm, scented water, but of talking to each other, having our treats, watching something, all without being disturbed.
There is still the occasional rumpus from downstairs, but the threat of us hurtling down the stairs, naked except for a few bubbles, is generally enough to make the teens decide that manning up and sorting it out themselves is probably the lesser of two evils.
Join me on the Firefly Community page today; I’m pondering where difference ends and difficulty begins:
Freddie’s school, Merryfields, had more winning entries than any other school in any category. He was such a good boy at prize-giving ceremony: he walked nicely to the front with his teacher when his name was called, though he got a bit flummoxed when he saw me waiting to take a picture. The Mayor was very understanding and just came over to where Freddie was to present his certificate and pose for a photo.
Freddie sat nicely to eat his packed lunch, even though he didn’t like it. He got up and started to wander off once, but came straight back and sat down again when I asked him to. His prize was a voucher to spend in The Art Depot. All the other schools were allowed to take their pictures home after, but Merryfields pictures can’t go home yet – they are going on display in a shop in town over the summer. We’ll get them eventually, though. And then Freddie’s will get pride of place in his room.
Apparently (according to received wisdom) it is unlikely that a child with Down’s Syndrome will ever learn to ride a bike.
Some maintain that ‘they’ can be taught, but only with difficulty.
But Freddie has decided that these rules don’t apply to him.
Stubbornly (because, to be honest, we’re rapidly coming to the conclusion that many of the stereotypes about Down’s are just a load of Old Wives’ Tales, like “Your middle finger is the one with all the poison in it” and “If you get shingles and they meet in the middle, you’ll die”) we bought him a bike anyway, on his last birthday. It’s been winter ever since, so, apart from scooting up and down the hall on it a couple of times, Freddie hasn’t ridden it.
Sunday was dry and summery-warm, so Big Sister dug it out of the shed and took Freddie out into the street to have a little go on it (it’s a quiet cul-de-sac, leading off a road pimpled with speed-humps, and Big Sister is a responsible sixteen, and Daddyvwas out front too, washing the car).
First she hopped on the bike herself to give Freddie a visual demonstration of pedalling. Then she put Freddie in the saddle, placed his feet on the pedals, gave his leading leg a push … And off he went. Five minutes flat is all it took for him to get the idea.
I’m thinking of hiring her out …