Holiday clubs are not for us!

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

Summer holidays. Time for much excitement as children break up from school for what feels like a ridiculous number of weeks. Time for trips away with family or friends, to the seaside or the country side, or to the hustle and bustle of a city. Time for holiday clubs and activities away from Mum/Dad. No? Not sounding familiar.

Don't get me wrong, school holidays can be lovely, and spending time with Heidi can be lovely.

It can also be bloomin’ hard work! Keeping her entertained can be a challenge, getting out and about can sometimes be tricky (hurrah for the venues that have Changing Places by the way!), and maintaining the same energy levels that her teacher and one to ones have at school can be nigh on impossible!

We also don’t have the luxury of holiday clubs. Friends’ children are bounding off to basketball camp, or dashing off to dance school – they sound fantastic and must be so much fun, I’m not in any way taking their enjoyment away from them.

Heidi is non-mobile though, so there are restrictions as to what activities she can do, but more importantly, like many of our kiddies with additional needs, Heidi has to be with someone dedicated to her, who knows her well, and in our case, is fully trachi and gastrostomy trained. This somewhat narrows our circle of support. Add in to the mix the fact that me and Steve both work, and the 6 weeks’ “break” across July and August really does start to test our parenting skills as well as our patience.

This sounds a like I’m grumbling, doesn’t it? I’m sorry, I don’t mean to.

We have a lot to be thankful for, but the school holidays are just another reminder of how different our life is.

Everything has to be planned, and it sometimes feels restricting. We do of course do our upmost to make sure that Heidi has fun. We take her to as many places as we can, see friends, take in different sights and smells.

I sometimes have a moment where I wonder if she does have a nice time, but then you see her smile (we waited so long for that smile!), or notice the look of concentration on her face as she’s focusing on a particular sight, and it’s lovely.

She may not be able to talk, but she can certainly communicate and once you’ve tuned in to her, her blinks and eye-brow raises can really say so much.

I would love to be able to set up a holiday club for children like ours – fully accessible, all inclusive, fun and supportive. There’s the slight issue of being able to fund this, and I’m guessing there may be a few health and safety or OFSTED hurdles to jump over, oh and we’d need to find fully trained staff/volunteers to run it, and a suitable venue of course, but I’m not defeatist! If you know of a place like this that already exists then please tell me – I want to move nearby!

So yes, in summary, our school holidays are different to most, but that’s ok. It’s time we have together, and for each day of that I will remember to count my blessings.

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