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Special Needs Equipment and the Heartache That Can Come With It

Special Needs Equipment and the Heartache That Can Come With It

If your child has an additional need for specialist equipment, then the arrival of equipment can be a sore reminder of what, "should have been".

There isn’t really much choice in the special needs world of paediatric buggies, not half as much as regular prams anyway.

When my son was 11 months old, he was diagnosed with 4 limbed cerebral palsy.

When he was small, we could prop him up in his, ‘regular’, pushchair using blankets for support.

But as he got older, taller and heavier, his need for postural support became more apparent.

I absolutely loved my pram, I remember how we had saved for ages to get it.

It was a kick in the gut that we had to get rid of it, he didn’t even get 6 months use out of it.

We were assessed by occupational therapists and wheelchair services and we were eventually provided with the tendercare Snappi paediatric wheelchair.

I remember the feeling I had when it arrived.

It was so big, bulky and not as, ‘good looking’, as our previous pram.

I wanted to cry.

If I thought it was ugly, what would other people think?

Would people stare?

I knew it’s what he needed but it was so hard to come to terms with.

Next, came seating at home.

Aj didn’t have the core strength to sit in a regular highchair, he used to slouch and because of his poor positioning he choked a lot.

Again, whilst he was small, we used blankets to prop him up and help support him, but it just wasn’t convenient.

After being assessed by occupational therapy, Aj was provided with a Leckey Squiggles seat.

I remember this brought the same feelings with it that the wheelchair did.

It looked so medical.

What would people think when they came into my house?

Why can’t he have a nice, ‘normal’, highchair?

Without all the straps and stuff?

Next, came his walker..

This was a hard one to swallow.

He was at the age where I should’ve been buying reigns for him.

This just screamed, “I’m different”.

So many people used to stare at it, ask questions etc.

It actually makes me feel better about things when people ask, rather than just stare.

His latest and biggest piece of equipment has been his bed.

A Safe Space.

A week before it arrived, we took a trip to IKEA to pick out some drawers and storage units for his bedroom.

The only way out was to walk through the kids section.

This tore me apart.

Seeing the cute little beds with tents underneath, some even had slides!

(How cool?!)

When his bed arrived and had been assembled by the SafeSpace team, I went upstairs to look and wanted to cry.

This bed was HUGE, it looked like a fish tank, it didn’t look like a child’s bed, and that broke my heart.

I’m not at all ungrateful for the equipment we’ve received.

His buggy has opened many, many doors for us.

We can enjoy days out without worrying about him getting uncomfortable.

His feeding chair has meant he now suffers less from chest infections (as he doesn’t aspirate as much because of his good positioning!).

And, his bed has meant that he now has a safe place to sleep.

We don’t have to worry about him getting stuck in the bars of the cot or banging his head on the sides.

Since receiving Aj’s equipment and getting used to it all, we’ve come to terms with the fact he is, and always will be ‘different’, and whatever it takes, we will use any equipment to help him enjoy a, ‘normal’, life.

We have recently purchased a GoTo seat, this has meant Aj can enjoy swings, shopping trips and he can also sit on a ‘normal’ dinning chair!

He also now has a specialist trike which we LOVE!

We get stares, a lot.

Mostly from people who are just too shy (maybe?) to ask about his equipment.

Yes, our things are different, but they help him to be a little less different.

Firefly Blog

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

Emmy Heaton

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Hi I'm Emmy, mum to AJ who has cerebral palsy.

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