Sunday’s papers, Tuesday’s Child and Wednesday’s sign language course.

Everyone’s away at a six year old friend’s sugar-fuelled birthday party across town. So I’ve just cheekily scoffed five Fig Rolls. I know it’s Lent and all, but Fig Rolls aren’t properly biscuits, are they? Not really. They’re more of a kind of healthy mulch food, a sort of veggie energy bar like you might find in a farmers’ market, where teensie women swing by in Range Rovers, wearing multicoloured wellies and carrying hessian bags with celery stalks peeking out. I mightn’t make it through this post without them. (The Fig Rolls, not the teensie women.) They’re possibly tax deductable. Must check.

What a beauty

Over the course of my Figfest, I read an article on journalist Kathy Evans, who has just published Tuesday’s Child, her story documenting the birth of her third daughter Caoimhe. It charts her journey, the shock, anger and grief she felt along the way, and the acceptance she now enjoys. Caoimhe (pronounced Kee-va, non-Celts) is five and a half and quite a little stunner. I grabbed this quote from one of the articles in the Irish Independent. It certainly sang to me.

Since Caoimhe’s birth I am gentler, on myself and on other people. Her vulnerability has taught me compassion; her learning difficulties have given me patience. If I slow down enough I can share her joy at things which I long ago stopped noticing. The way the sun melts at bedtime still surprises and delights her; watching the stars poke holes in the sky together elicits shouts of delight and not all of them hers.

I hope Caoimhe continues to teach the Evans clan such wondrous things.

************

Meanwhile, the fight against prejudice goes on elsewhere. I’m always encouraged to know that some of the people in the trenches actually have a good grasp on what they’re talking about. Dominic Lawson in The Sunday Times sure as hell does. I don’t uniformly agree with him, but I always respect him, and when he writes about those ‘suffering’ with Down syndrome, he nails it on the head. He writes with insight: one of his own children has Ds. Last weekend he spoke about the death from cerebral palsy of Ivan Cameron, the six year old son of British Tory David Cameron.

…if the Tory leader’s exposure of his son was part of a campaign, it was a campaign about something much more important than politics. The message was that he and his wife were not ashamed or embarrassed to have a child with such profound disabilities – and, by extension, neither should anyone else be, in the same situation.

I certainly respect the Camerons for behaving as normally as possible in the abnormal situation they find themselves in. Media glare, I mean. I sympathise too for their horrible loss.

As to Lawson’s point above, we’re never out of the woods, not by a long way, when it comes to external prejudice. I’ve made my personal peace with that, and will fight when a loud enough loudmouth needs a smackdown. I’m not even going to try to be on constant battle alert, but when the opportunity to shout out some positivity comes along, I’ll try to jump in there too. People like Kathy and Dominic, as journalists, are in a good position to do this. I’m thankful that they are actively helping anyone who is ‘afflicted’ with this ‘challenging’ ‘disease’ by just being normal. It certainly adds to my reservoir of faith.

************

lamhHere’s something else that helps: Lámh. What what, you ask? Sign language, I reply. Myself and Jacob’s Mammy started a three week course last Wednesday at St Michael’s House. Lámh (means hand, non-Celts, and rhymes with mauve, kind of) has a 600-word sign vocabulary and is the standard language used across Ireland for people with learning difficulties. Being in a room with 30 others who want to give their kids every possible break that they can is a very warm and fuzzy place to be. Can’t wait for next week.

Of course we need those breaks now more than ever, with the scythe that’s swinging its way through services for those with disability generally. Like it or not, we’re a marginal group, and people on the margins have to shout louder in order not to be left behind. The lack of proper speech therapy now in SMH is a case in point. It’s a basic need for anyone with a young child with Down syndrome. It has far-reaching implications for them. I’ll be coming back to this point, but it’s not something that we can afford to ignore.

Right. I’m worn out after that rant. Possible time for another fig roll…


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9 comments on “Sunday’s papers, Tuesday’s Child and Wednesday’s sign language course.

  1. Elbog says:

    Well, as to the first part, I just gave up for Lent a few years ago, and it’s been working pretty well for me. As to the second part, yes, of course. All I really have the energy to comment on, at the moment. Ok, this: We’ve reached the point here where Emma knows more signs than I do; the old dog’s not keeping up with the new tricks. Who’s the delayed one? It’s never straight up and down. . . go figger.

  2. NAN P. says:

    Lámh is actually fun to learn, and fun to use. The main thing is that it slows YOU down: I speak too fast, I rush through my thought. Talking/signing to Cathal means I have to relearn to take my time. It makes the shared moment even more enjoyable.

    And when the little one in question grabs your hand and shake it, twice, just after you have done it saying “again?” … oh my god! It is just precious, so so precious!

    So have fun!

  3. Jill says:

    We’re hoping to go on a course for Makaton soon – it’s a sign language for children with delayed speech, so am guessin it’s similar to Lamh (sorry, having a non Celtic keyboard means that no accent is available to me :-))

    Thing with Makaton is that the signs used are like a mini charade of the word (which you say at the same time as doing the action). End Result? We all look a bit like Peter Kay, doing the “want a drink?” and “want something to eat?” signs lol.

    On the plus side, it’s incredibly helpful in noisy pubs when you wish to converse with a friend over the other side of the bar!!!

  4. lisadom says:

    Lamh Lamh Lamh
    there’s nothing you can do that can’t be done
    Lamh Lamh Lamh
    there’s nothing you can sing that can’t be sung
    Lamh Lamh Lamh
    Nothing you can say but you can learn how to play the game
    its easy

    Yeah, lamh is like makaton, and both are easy. Watch ceebeebies “something special” to practice Nick and Nan.
    as for the rest of it all you need is love.
    xx

  5. haha, sign language in a pub…will have to try that…I can ‘text-speak’, since I know the sign alphabet.

    Lámh sounds like a good programme; and enjoy those fig rolls! 🙂

  6. Hi!
    Just wanted to say that you’re doing a very important thing with this blog.
    Here’s a link to The Simple Hearts Theatre, a Russian troupe of actors with Down Syndrome. They tour in Russia and abroad and have won some significant awards since 2000. It’s mostly in Russian, but you can have a look at the pictures here:

    http://teatrprosto.ru/?get=photo

    Read actor bios in English here:
    http://teatrprosto.ru/?get=troupe_eng

    Give our best wishes to Jacob!

  7. Martin says:

    All together now, bowl or dish, bowl or dish…we have been getting stuck into the Lámh with Noah and I’ve even found myself signing at work and once, even across a petrol station forecourt, well handy. Check out Something Special on CBeebies with Justin Fletcher aka Mr. Tumble, its great fun for the little ones and although its Makaton (UK version of Lámh), some signs are the same and you can still learn a lot from it. WE should start a campaign for something similar on RTÉ, Mr O’Tumble perhaps…

  8. Teresa says:

    i want to sign up for a lamh sign language course in co kerry but cant find any

    • Mary says:

      Lámh courses are organised at a local level by service providers. Usually staff members attend training organised by their employer, and families attend training organised by their service provider.

      Lámh courses are accessed in the following ways:
      (a) Through the speech therapist/ team supporting your child/ the child or adult you are working with who is using Lámh;
      (b) Courses for teachers are run each school year by the Special Education Support Service (SESS) http://www.sess.ie ;
      (c) On occasion, Lámh Tutors who are running Module One will offer places to external participants, through an email list at the Lámh office. Add your name to the Contact form on the website http://www.lamh.org
      (d) Lámh have set up a system of Lámh Contract Training. This means that groups can contract in a Tutor to deliver training for families or staff.

      You could also take a look at the Little Lámh app for iPad, the new Lámh Time App which features 6 activities, 2 stories and a sign video library, and the Lámh-a-Song nursery rhyme DVD An online resource of Lámh signs http://www.lamhsigns.org has been designed as a reminder and a support to those who have completed the Module One Lámh Course or Family Lámh Course.

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