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Saturday 25 June 2011

Communication

Seth has been a right git today. He's obviously feeling poorly so spent most of the time in bed and then when we did get him up he just kicked off. I managed to get some dinner inside him but even then he complained. So I finally got him out of his chair and we had a cuddle which was lovely until he got wriggly again. So I tried him on the beanbag that I have just bought him (he has one at school and loves it). He sat rocking on it happily for a while and then gradually wriggled himself onto the floor. He stayed there for a while chuckling and kicking toys and then rolled over onto his side and stayed like that giggling. I was pretty gobsmacked, but then he lifted his head moved his arm and rolled onto his tummy. Just like that. No fuss, just left to his own devices he does something he's had physio on for the last 2 years! But not content with that he then completed the roll to be back on his back. All this after a day of being really fed up and grumpy! Well he wouldn't be my son if he was consistent, I suppose.

On Thursday I went on an AAC Network Day. I wasn't entirely sure what it was about or whether it would be worth the effort but it was one of the most useful thing I've attended. For those that don't know (and I didn't) AAC is Alternative and Augmented Communication and after listening to presentations from professionals and a parent I realised that there is so much I could be doing to help Seth communicate. Yes, he's making more word sounds and yes he's starting to sign but he's obviously really frustrated and I certainly am. I had started using these buttons (you record a word so it 'speaks' for you when pressed) but Community took them back when he started at school and I lost all impetus with it. The parent who presented has a 17 yr old who uses eye gaze technology, but explained that they didn't start there and it's a long journey which evolves with the child. She used the example of a child wanting to go swimming. Now, your child might be able to communicate 'yes' to a list of options you offer, but you might not have thought to offer swimming. Therefore, they can't tell you they want to go. Or they might be able to just tell you they want swimming but it might not be something you want to do so you don't do it. However, if the child could tell you that she wants to go swimming because her legs ached, you would make the effort to arrange it and that's true communication.

Apparently there is a loan library of AAC equipment at Greenfields School and Wren Spinney School and I also know of a national charity loaning switch adapted toys which you pay an annual subscription for; www.stepscharity.org. I looked into it ages ago but never did anything about it. I think I will now! In addition, there is a new group just started in Northamptonshire called Yakety Yak (www.yaketyyak.org.uk) 'aiding communication in Northamptonshire'. It has a forum so you can ask questions and parents who've been through it can help and advise.

2 comments:

  1. HI
    my name is Jenna and i came across your site. Seth is an amazing, courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease. I love it when people sign my guestbook. www.miraclechamp.webs.com

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  2. Thanks Jenna :) Thanks for sharing your website and I've signed your guestbook x

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