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Extreme Changing: Special Needs Families

Extreme Changing: Special Needs Families

Sadly, I’m not talking about anything spicy in our relationship, just the sometimes rather urgent need to change our daughter’s nappy (diaper) coupled with her innate ability to need this at the most inconvenient times and places.

The ultimate nappy change came at a rather important and highly public event.

We had been asked as a family to light the Advent candle at the Christmas fundraising carol concert for Demelza House Hospice.

The venue, Canterbury Cathedral holds over 1,000 people when full and that night there was standing room only.

As well as helping our daughter to light the candle I was giving a reading to the congregation, which would have made the most experienced of public speakers nervous.

My main concern, however, was where to change the star of the show’s bottom.

I needn’t have worried however as a kind Verger showed us to the Chapter House (a 12th century stained glassed room with carved stone benches) and said we could do it there – probably a first for the Cathedral and definitely one for us!

There are other times however when the simple facilities of a, ‘baby’, change or drop down bench really should be part of the offer.

I include motorway service stations, shopping centres and visitor attractions as essential places to get this right.

They are after all places where families are going to visit.

I’ve become a bit anal (excuse the pun) about the size and strength of change beds as some are suitable for my slight but growing 6 six year old and some require the balancing skills of a gymnast whilst I prop the bed up with a raised knee and stand on one leg grabbing nappy, bag, cream etc with one hand and holding onto my child with the other.

I have also experienced once too often the humiliation and fear of changing her laid down on a smelly toilet cubicle floor.

I happily name and shame Euro Disney as one of those places, shocked as I was that there were no facilities for changing older children or adults.

On my return home, I emailed them directly and was told that they make the bed in the first aid room available for this.

My question, “What happens if there is an ill person on the bed?” was left unanswered.

My frustration lead me to think there must be a solution that puts the power back in the hands of parents and carers.

Firefly then launched H.A.T.C.H inviting ideas for possible products to be created by them.

I jumped at the chance and submitted a basic plan of a light weight portable change bed that parents/carers can fold up and take with them.

It’s still early stages but I’m excited to say that Firefly like the idea and have agreed to take things further.

It’s not a Changing Places, and yes there should be more of those, but it is a simple answer that many parents of disabled children face and I’m really hoping that if successful, visitor attractions buy them too as part of the Firefly Space to Change Campaign.

In the meantime, I’m keeping a log of our strange nappy changing adventures, the latest being a dedicated, ‘baby change’, portaloo at a cider festival, now that’s what I call service!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sam Bowen

Meet Our Blogger

Hi I’m Sam, Mum to Lucy who is has complex special needs but is the happiest person I’ve ever had the pleasure of meeting! I own Hip-Pose Ltd, a brand of clothing I designed for babies with hip dysplasia (which Lucy had). I’m also a fundraiser for her school PTA and in my spare time (if I get any!) I sew and make crafty stuff.

View Sam’s Profile

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