Wednesday, 16 November 2016

WonderfulWednesday: @GrumpyCarer searches for a sippy cup

Bens blue cup

A fab dad took to social media this week to try and find a replacement little blue cup for his son with autism. Marc Carter's 14 year old son, Ben, has severe autism and will only drink out of a specific sippy cup that is on it's last legs. The cup is no longer made so with the fear that without it, his son will simply stop drinking altogether, Marc asked Twitter for help.  And Twitter responded.

Apart from the obviously and wonderful kindess that is (as I type, now probably much more than) 15,000 shares from one of Marc's tweets alone, this story is wonderful in many ways.  Yes, people have rallied to the cause.  According to the BBC website people across the country have been emptying their cupboards and Tommy Tippee have staff trawling through their stored samples looking for the elusive cup.  Several cups have been located and are making their way to Devon to be used and safely stored for future use.

Wouldn't it also be wonderful if in searching for a cup for Ben, people found some understanding and awareness about what this means. Ben may only drink out of his cup for several reasons.  It may be that it's routine and he can't comprehend drinking from another receptical or source,  It may be that there is a sensory connection and feeling he gets from this particular cup.  He may only feel safe drinking from this cup. He may simply not recognise anything else as a beverage. And these kind of things can be the case for many other children with autism.

garlic bread

Our son David has a restricted diet.  Like Ben won't drink from another cup, David won't eat many different food items and then only one's from specific places. Yes, he eats chicken nuggets - but only Tesco own brand breaded ones. Yes, he ate garlic bread... but then Tesco changed the recipe.  How do I know?  David stopped eating it.  And so on.  Just like Marc thinks Ben would become dehydrated to a life threatening point rather than drink from another cup, David too would rather go hungry, and I mean really hungry than eat something he wasn't sure about.  One day he only ate breakfast and ate nothing else until the next morning.

It's really hard to explain to someone. We went through a period last year of force feeding David in an effort to expand his diet.  It was awful and mostly unsuccessful. We take snacks with us when we go out.  I've had some looks when I'm in a cafe and I hand David something out of my bag.  And this is just us talking about David and food.  This kind of thing can filter into many parts of his life.
It can take David weeks to try on new shoes because they aren't the ones he has.  We tend to buy some shoes in packs of increasing sizes.

boy in rain coat

David's older brother, Anthony, is also on the autistic spectrum.  Some would consider him 'mild' as apposed to 'severe' though I'm not sure I agree entirely with those terms.  I tend to consider how well they function in society (low vs high functioning).  Anthony has some difficulty with food but he has similar problems in other areas too.  Don't get me started on what happens if we go out and it starts raining.... and we don't have his raincoat with us.  And these are just two tiny tales from their lives.

So I guess it's a wonderful story of a wonderful dad, and wonderful people helping out - and hopefully the wonderful kindness and support will be felt by other families dealing with similar issues in cafes, shops, playgrounds and everywhere really. That would be great and undoubtedly make the world a better place for Ben and for many others too.

You can read about Marc, Ben and the blue cup here.  If you've found a cup for Ben you can contact via twitter @PMPProject.


Think you know a kind person - why not take their photo and share it on your social media with #CapturetheKindness to be with a chance of winning The Clangers goodies in the #CapturetheKindness photo competition.  For further information click here.

5 comments:

  1. Good morning, thank you for the lovely words. I'm far from a fab dad - didn't you note my twitter name! I do my best, I had to stop work to care for my 3 children (my oldest lad is an adult - I own a man now!) who all have special needs. I really needed a new cup for Ben, I've searched daily for 3 years and thought I'd ask twitter. I honestly thought it would be incredible if it got shared a few hundred times and so,done shouted 'found one!'.

    And then it went a bit crazy I guess. Some of the places it's been shared have been viewed and shared hundreds of thousands of times, it's been picked up by news agencies in Australia, Canada, the US and Nigeria, it's one of the most read articles on BBC Newd, I'm about to go on Virgin Radio and the BBC are coming later for a follow up.

    In all this it's so important to realise this isn't about me, it's not about a little blue cup, it's about autism. Autistic children don't choose to have their life controlled by their condition, I can tell stories about adults I've supported that would shock even those parents who think they can't be surprised by autism.

    My heart goes out to all of the carers who have to struggle daily with things that seem so trivial to the rest of the society - I think you are all fab parents and I admire you all.

    Best wishes

    Marc

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    Replies
    1. Marc, thank you so much for reading and taking the time to comment. I couldn't be more pleased for you. I wish you all the very best in finding enough cups and much more too - in all that you do and in all that's to come for you, Ben and your family. We are here, right with you.

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    2. Thanks Marc for highlighting the difficulties that many face. Of course it's not just about that one cup, though I'm glad you found help and more than one cup! You are of course a fab dad, we can tell even though we've never met you - and you wouldn't be doing all the interviews and knock-on events if you didn't care about everyone else too. Thanks on behalf of all of us!

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  2. I hadn't heard about the beaker story but that's amazing. You're right though that people should show a bit more compassion when they see a situation like your son with food. We never know enough about what is going on with people to form rash judgments. Thank-you for the reminder! #DreamTeam

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  3. This is the most wonderful example of good human nature coming together. I've just spent the last hour catching up on the #CupForBen story after reading your post. I really hope that this opens others eyes to autismn and other similar disabilities that affect so many. Such a great post to share x Emily #DreamTeam

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

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