Blogging About Disability part two: A Firefly Community post

In the second part of this two-part post on Firefly Community, on the subject of blogging about disability, I talk about what we should take into consideration when choosing terminology to use when blogging about (another person’s) disability. 

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3/12/16 What Have I Been Reading This Week?


 

Read any of the often somewhat heated discussions to be found on any special needs parenting forum or Facebook group, and sooner or later you will find someone obliquely hinting that if a woman has the time and energy to think about anything outside of her child’s needs, then she is neglectful. This week, then, I must have been an appallingly bad mother, because I not only found time to read, but I found the time and energy to get properly outraged by one of the things I read, and even to tweet about it.

Articles:

I can tell you what I wish I hadn’t read this week – an article by one Damian Thompson in The Catholic Herald.

The really sad thing is that the article was intended to raise the profile of a very worthwhile charity which aims to teach vital skills to young adults with learning disabilities, to enable them to find and retain employment.

The thing that came through most eloquently in his words was his distaste at having to spend a day in the company of those with learning disabilities; a phrase he describes as a euphemism for (get this) ‘mentally handicapped’ or ‘retarded’. He then went on to say that those of us who object to such phrases did not care about the ‘mentally disabled’, just about whether or not they were correctly labelled.

He describes playing a game of table tennis with young adults who, he suggests, were more childish than children. When he proved to be clumsy at the game he says that you ‘would conclude that I had a learning disability of my own’. You could almost see him, as you read, pulling a face, doing a stiff-legged walk, and making ‘duuuh’ noises, like a schoolboy mocking the disabled in front of his friends.

Only two paragraphs in and already I wanted to burn this charming individual (a euphemism for ‘dickless little twat’) at the stake on a bonfire made out of copies of the Catholic Herald.

He almost lost me at that point, before I’d even got to the crux of the article, but I persevered. Though the rest was not openly mocking, it was patronising in tone, which detracted greatly from what should have been a positive message about a wonderful charity.

Of course, he was called out on Twitter. His response? Name-calling. We were ‘despicable’, ‘vile’, ‘vicious’, and ‘off the scale in nastiness’. He claimed it was a planned strategy to ‘provoke the language police’. What did he imagine he would achieve by doing that? At best it was immature and ill-conceived, at worst, wantonly mischievous. Potentially he stood to cause more harm than good to the charity whose profile he was supposed to raise. He called in friends, or perhaps just twitter contacts, to insult and intimidate some tweeters into retracting and apologising. When no one did, he threw his toys out of the pram, and announced in big shouty capitals ‘YOU’RE BLOCKED’.

It would be good form here for me to include a link to the article so that you can read it and make up your own mind, but I don’t want to give his poisonous voice any more of an airing. For every person reading that article who can see through his attitude, there will be more than one who assumes that because he is a professional journalist writing in a publication that purports to uphold Christian values, that his perception of learning disability is acceptable. It is not. If you really want to read it, you can find it on The Catholic Herald’s page or website, under the title ‘Charity without the Guilt Trip’.

I would urge you instead to go directly to the website of Team Domenica – the charity he was writing about – http://www.teamdomenica.com, where you can find out all about their enrichment programme for young adults with learning disabilities, in their own words. They truly understand the abilities and potential our young people have, and what an asset they can be in the workplace if given a chance.

Fiction:

For leisure, pleasure, and a healthy bit of escapism, I have been reading the novel White Teeth by Zadie Smith. It is fabulously well-written and absorbing, so much so that it actually didn’t provide the escapism I was hoping for; instead, it tipped me straight back into a former, less happy, life.

I didn’t realise until after I bought it that it’s set in the very area of North London where I lived for a time when I was in my late teens/early twenties. I found many echoes of my own experiences in the early chapters of the book, dealing as they do with relationships that straddle racial, cultural, and generational divides. In my own life, I viewed the breakdown of my (then) relationship as an escape. It will be interesting to note, as I read on, whether I will begin to see a different viewpoint: both of my own story, and that of the novel.

Read All About It…

Once upon a time, in an era not so very far away, it was believed that people with Down’s Syndrome were ‘ineducable’ – in other words, education was wasted on them because they could not respond to it. Even medical professionals gave this out as fact: and thus, no statuory provision for their schooling was made.

We now know that this is a myth. It has been proven to be a myth – nowadays all children with Down’s Syndrome go to school. But the belief persists among some sections of the general population. You made have heard it yourself. And it is natural to worry, when your child is diagnosed with a condition that brings learning disability as part of the package, about whether or not he/she will acheive the golden milestone of learning to read and write.

Don’t. Children with DS can learn to read and write, and the majority do.

Freddie, I would estimate is somewhere in the middle of the ability range for a person with DS, and may or may not have some autistic traits, but at the age of seven is already on the road to literacy.

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Children with Down’s Syndrome struggle with verbal/auditory short-term memory, BUT they are good visual learners. In fact, when information is presented in visual form, their information processing skills can be in line with their non-verbal mental age. So reading, like using Makaton and Signalong, is a great way to help support the development of their verbal communication skills – because it links sounds with a visual image of an object/concept, which, being easier for the child to process, helps them to understand and remember the sound (word) that goes with it. It’s a kind of ‘showing’ and ‘telling’ at the same time.

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This irritating electronic toy effectively combines sound and visual images to teach letter names and sounds. I bought it for Freddie when he was very young, not with the intention of teaching phonics, but because he liked noisy cause-and-effect toys – when a letter tile is inserted it sings a catchy little jingle using the name and letter-sound, and the image of the letter is both visible and touchable on the surface of the tile. As a result of playing with it, Freddie learnt his letters ‘by accident’.

I’ve read with Freddie since he was born (as with my older two). It got me some funny looks from other mums in the neonatal unit – really the only time I’ve been concious of being stared at – sitting by the incubator having ‘kangaroo time’, with an old baby book of his sister’s in my free hand.

He’s always loved to look at books and handle them. Yes, some got damaged, and a few were utterly destroyed, but we chalked that up to ‘collateral damage’. We were lucky to have a large stock of pre-loved books from his brother and sister – they’s already served two children, so it wasn’t the end of the world. And he grew out it; I haven’t seen him nibbling a book in nearly a year.

He tended to gravitate towards books with bold illustrations: perhaps because he is very visually orientated, and perhaps because , like many people with DS, he may have reduced visual acuity, even with his glasses on.

I think that school are teaching him to sight-read, that is: teaching him to recognise whole words, rather than by their phonic components. It certainly seems to be the way he does it, and I have learned that is the way that children with Down’s learn to read best – perhaps because, as part of their communication profile they tend to have difficulty learning the sound-structure of words. But here’s the great thing – when he reads aloud to me, if he comes across a word that he does not recognise, he doesn’t get disheartened (as I have often seen ‘typical’ children do), he just asks me what it is and then repeats it. I know we’ll have to do this many times until he can reliably remember the word, but it doesn’t matter to either of us, because we know we’ll get there in the end.

Another thing I have noticed, and it’s one in the eye for those who are adamant that ‘screen time’ of any sort is detrimental to children, is that he responds much better to a book or story once he has seen a visual version of it – such as a television adaptation. He adores reading The Gruffalo and Room on the Broom having seen the TV animations, and even managed to sit through a stage production. But he wasn’t at all keen on reading Stick Man until it was on TV this Christmas.Now he can’t get enough of the book.

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We have a bit of a Julia Donaldson obsession, but if it encourages his love of reading, why not? One of the best tools you have to foster a love of reading in your child is their personal interests and inclinations, which you can utilize to your advantage. So, watch TV with the subtitles on, read the cornflakes packet, or the logo on the dutbin lorry, whatever it takes.

IS MY BEST GOOD ENOUGH?

One of the first pieces of advoce that the Community Paediatrician gave me was: ‘don’t make life hard for yourself. Just do the best you can comfortably manage.’

I have abided by that advice. I’ve done what fitted in with our already well-established style of parenting, our family dynamic, our day-to-day routine. I didn’t go chasing rainbows: if something did was a chore, or didn’t work for us, I didn’t pursue it. And I freely admit I did almost no research at all into Down’s Syndrome.

In the early days of Freddie’s life I had no time or energy for anything beyond trying to get some nourishment into him and praying that hjios bone marrow function would stabilize and become normal. Ignorance is bliss, I decided. What I did not know could not keep me awake at night, worrying about what might lie ahead of us. I would rather cross each bridge as I came to it, one step at a time. I didn’t want to project difficulties onto him that he didn’t actually have, just becasue I’d read they were common in people with Down’s. I’d already discovered that not all the, undoubtedly accurate, information in the Down’s Syndrome Association booklets we were given to read on the maternity ward applied to Freddie.

My gut told me I had to let Freddie himself be the one to tell me what Down’s Syndrome meant for him; and I might be less open to hearing what he was telling me if I filled my head with preconceptions. There were enough people in the world ready to make assumptions about him. He needed his mum to remain open-minded and questioning. I acted on instinct, just as I always do.

Perhaps my lovely Paediatrician (and she was a lovely, positive lady, as is her replacement) should have added another item to her advice prescription: ‘don’t compare yourself to other people.’

Because sometimes, when I hear other people’s stories, or read their blogs, I feel like a failure. Their children who have Down’s, at the ages of six, seven, eight or so, are toilet-trained, they can read and write, ride a bike, play sport, or do drama or ballet. At six my boy doesn’t do any of those things. he generally does not follow instructions, he does not always feed himself, he’s only just starting to get the idea that it is possible to put on your own clothes. Despite being first introduced to the potty at two, he’s still dry only about 80% of the time, clean much less. Our friends’ three-and-a-half-year-old is beginning to outstrip him developmentally.

I feel like I’ve let him down; taken my eye off the ball; been too lazy, too complacent. I read what other people are acheiving and I begin to question every decision I’ve ever made for him.

Should I have sent him to a mainstream school, even though all of the Primary schools in my area seemed either unable or unwilling to meet his additional needs?

Should I be ‘hot-housing’ him with his school reading books, going over the words again and again, night after night? O do I stop when his attention wanes, and wait until bedtime, when I sit him on my lap with his favourite Julia Donalson books spread out on the quilt in front of us, and read them aloud while he looks at the pictures, remembering to leave a little pause at the end of each line because he’s deveoped the habit of repeating each one back to me? Do I  push functional reading at the expense of having the pleasure of sneaking in when he’s watching the TV adaptations we recorded for him, and hearing him substitute the line: ‘buzz off! That’s my witch’ for ‘buzz off! That’s my Lucy,’ as he stands between his sister and the dragon on the telly?

Should I be dragging him off the swimming and dance classes after school, when all he wants to do is chill out on our big, woolly rug, play with his toys and eat dinner with his daddy?

I never did such things with with my older children when they were small. I did what came naturally and enjoyed the time I spent with them. I never compared to their friend’s parent’s. I was never pushy.I let them just bumble about and be kids while they had the chance, they chose their own subjects at school, they’ll choose their own universities and courses, or not. I give them what help and advice I can if they ask for it, but otherwise don’t really interfere.

They were heading downhill for their teens when Freddie was born. My parenting style was already fixed, and I’ve parented Freddie in pretty much the same way I did them, with one or two small adjustments. They both ended up on the schools Gifted and Talented register. Freddie is in Special School. Perhaps they are what they were always meant to be, inspite of anything I did, or did not do? Perhaps the true value of my efforts will be to teach them that they are loved and cherished, and worth spending time with, just as they are. That, and some fun memories.