Additional Needs

When Equipment Takes Over

Posted by Ceri-Ann Brown on 5th September 2018 Additional Needs, Advice & Support, Disabilities

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Doesn't equipment just take over your whole house?

When we first moved into our little bungalow a year ago I was staggered by how much extra space we would have.

Once Amy's equipment all found a home I was left wondering where all of our other stuff was going to live!

I am also sure that Velcro straps, fastenings and any other equipment attachments can breed.

We seem to have drawers full of it all.

I'm too scared to discard any of it in case at some point it becomes necessary!

I remember, three years ago, attending an event where they showcase and demonstrate various pieces of disability equipment.

There were wheelchair access vehicles, bath lifts, different types of wheelchairs and all sorts.

Back then, Amy was still just a baby and I hadn't yet seen just how much of this equipment would end up becoming relevant to us.

At the time, none of this stuff was relevant, we were more just excited to visit the Firefly stall - even though we already have all of their stuff!

The main thing I remembered seeing were these huge beds with really high sides and padded panels all the way round.

It sort of looked like a padded cell or a child cage in my mind.

I recall thinking to myself, "I hope we never need one of those".

Fast forward 3 years and here we are.

We have one of, "those", beds.

I'm not sure what my problem with it is.

After all our house looks a bit like an equipment warehouse.

A lot of the equipment does look "medical" and unfriendly.

Where possible our team have always endeavoured to get us nice colourful things but sometimes there is no avoiding the fact that all of this kind of sucks.

I like to joke that the bed looks a bit like a vivarium or fish tank...

I often use my humour as a coping mechanism to hide the fact that actually this is not the bed I would have chosen in a million years.

I had always envisioned her first bed being a really cool looking bunk bed, or one of those beds shaped like a racing car, you know, something like that that a child's friend would be really jealous of and you'd feel like, "The cool mum", for letting them get something so daft and impractical.

Prior to having this bed, we had one with far lower sides that went up and down.

But as Amy has grown, her involuntary movements are becoming even stronger and more damaging.

She was bashing her limbs on the sides of the bed and ending up covered in bruises; and whilst she's non-mobile there was still always the fear that she would somehow fall out of the bed one day.

So, I admitted defeat and called in our OT to come and assess her for something safer.

Each piece of equipment being hauled or wheeled into our home is a further reminder of the severity of Amy's postural needs.

I know it's all necessary and I am grateful that we have it, but I do sort of resent it.

I more resent that they require regular maintenance and service checks and that a lot of the equipment also needs servicing or repairing/replacing.

I have been delaying for months now getting some parts on her wheelchair swapped over.

I know it desperately needs doing, but I am only just over the trauma of the old bed going and arranging for the new one to be built!

The more I see the bed the more I see its merits - it is kind of like a den... and like many children, I used to love building a good den, and this one is the ultimate.

At night, with all of the sensory lights on, it seems quite magical staring up at the ceiling, safe in your little den.

I also like how it is the one place I can place her down unstrapped and know that she won't come to any great harm (except for getting stuck sideways or at the end of the bed... or pulling her hair. She often does all three at once).

Changing the sheets is much harder, and keeping opening and closing all of the doors is hassle.

I foresee this being her bed for a very long time and I am trying my hardest to be happy about it.

We now have: a standing frame, a shower chair/trolley, a wheelchair, a postural support chair, 2 physio benches, an Upsee, a physio wedge, a GoTo seat, a Splashy, 2 giant physio mats, a sleep system set, a squiggles set, and that's just the stuff I remember from the top of my head!

Of all of these things the bed is the one thing I struggle with.

Other than the wheelchair my favourite bit of equipment thus far is the GoTo seat.

We've used it for so much over the years and instead of being part of her physio routine or just, "Another piece of equipment", it has really helped us when shopping, or at the park, or even just a dinner table.

It's strange how one thing can make you feel grief at how different things are and how another can feel so empowering and useful.

What's your favourite and least favourite piece of equipment?

How do you store all of yours?

A lot of our feeding tube supplies fit nicely under the new bed - which is another bonus!