Can’t Put a Price on the Smile of my Special Needs Child

A wise woman I recently came into contact with described going on holiday with her special need’s child as: “An endurance test, but with different scenery.”

What she did when she said that to me was not only made me audibly laugh… but also absolutely hit the nail on the head describing a feeling I have almost every time we venture out of our house.

In a wider sense – it also described aptly the ongoing fight for services, equipment, and even just sleep; that so many of us desire.

Recently, as my child has grown bigger – I am finally starting to have to accept that actually… this isn’t getting any easier.

I realised that this year – if we want to go away anywhere for even just a couple of nights – that we will need a specialist solution to ensure that she is safe and secure in her bed.

As it stands, even our local hospital and city hospital are unable to provide us with a safe sleeping solution for Amy.

Amy has a type of cerebral palsy that I wasn’t aware existed until she came into our lives – athetoid, dyskinetic.

All day she thrashes, writhes rapidly, twists, extends, bounces… you would never imagine that someone labelled as “non mobile” could get herself into such dangerous predicaments and precarious positions!! With Amy you need to have eyes in the back of your head – 24/7.

If a piece of equipment can have extra straps and fastenings… she is your customer.

Any modification that can be added to make something more durable and safer… we need it.

We will also need spares… because they will be tried and tested beyond belief.

So, I started to look into specialist travel options for going away.

Previously, we naively bought an inflatable mattress.

We placed it on the floor between two single beds in an “accessible” caravan at a well-known UK holiday camp.

The next morning… to our surprise… she was nowhere to be seen.

She was inexplicably underneath one of the single beds… bashing and kicking her legs on the metal framework.

Obviously, I felt silly explaining how she acquired this particular set of bruises when she returned to school the next week.

The main thing that surprises me is not the cost – but the lengths you have to go to to prove your need for this equipment, and to get the funding.

A lot of items not deemed “necessary” to daily living like for example a wheelchair, will not be funded.

It is a luxury to leave your home for a few days, therefore not imperative.

Budgets are already overstretched so it’s easy to see why you’d be refused, but at the same time, we didn’t want to or ask to need this equipment.

Thankfully in this specific situation, the company I am dealing with is extremely proactive and obliging in terms of applying for grants for you and actually I am not having to make a huge effort for once to get this item.

So you can see our issue, and I am sure there are many others like us.

Feverishly applying for grants, hoping hard we get it… feeling bad that we need it… and worrying also that there are people worse off and that maybe we should be leaving available funds to them.

Prior to having Amy; in what seems an entirely different life – I worked full time in a call centre/office.

Every single day there would be someone fundraising for a charity… a marathon here, a mountain climb there… a parent who fundraises for a charity that helps their child.

Back then I was a bit bitter and didn’t fully understand.

In my ignorant mind, I had a mortgage to pay, student loans to pay off, a future to plan for – what even did these charities do exactly?

They didn’t help anyone I knew. They were just a daily inconvenience.

Dress down for £1? No, I’d rather have the £1 and be able to pay my gas bill. How wrong I was.

It’s funny how a situation can change your perspective.

I feel guilty for feeling how I did back then, and now I am that annoying individual, sharing fundraisers at every chance, donating to charity where possible. I see the difference it makes to people.

The additional cost of raising a child with a severe disability is astounding.

It is certainly not reflected in what we receive via DLA or carers allowance – hence the need for so many charities.

The gtube pads, the dribble bibs, the shoes for splints, the additional washing costs, the specialist “non foaming flavourless toothpaste”, the medical tape and dressings, the hospital parking charges, food whilst in hospital, and so on…. whilst on a lower income from having to leave work!

I never knew that someone with a severe movement disorder would have to raise almost £2k to provide a seat that was safe for them to use.

I didn’t know that if you wanted to sleep elsewhere you might need £4k to get a bed you feel safe in and won’t fall out of.

We take so much for granted.

But it’s true. Any venture outside of our home is an endurance test!

You never know what paraphernalia you will require for even a simple trip to the shops – never mind a holiday!!

For us it’s “have we got the suction machine? Is it charged? Do we have enough catheters? Do we have rescue meds? Do we have enough feed for this trip? Will we need meds, how long will we be? Do we have spare outfits? Is the iPad charged, do we have downloads ready? Are her splints on? Is she fastened securely?” and so on.

We have also come to learn that anything new we wish to try has to be expected to go wrong.

Otherwise we are destined for disappointment.

I’m not saying be pessimistic… but I am saying don’t get your hopes up… just in case.

For example, recently Amy has attended two pantomimes with respite.

The first one… she absolutely had a meltdown and had to be taken out.

The second one… they got through it.. but mainly by playing music on a phone to her, and repositioning her constantly.

Basically – anything I hope she will adore and find a treat – she may find to be torturous.

It saddens me massively and fills me with grief. All a parent really wants is for their child to be happy.

Amy is of an age where many things are still new to her. The world can be a magical place to an almost 5-year-old.

But it can also be unfamiliar, scary, and outright sensory inappropriate.

I am eternally grateful that our respite centre is proactive in taking her to new places.

Often, I am too anxious to take her, but also worried of “wasting” money that we don’t have.

She recently adored a bowling trip. Never in a million years would I expect this.

But yes. They uploaded a video (if you search Amy Rose’s army on Facebook you can find it) of her PURPOSELY concentrating hard to push the bowling ball down the ramp.

I have watched and watched that video and welled up with tears of joy every time.

It is those moments that we live for. Those unexpected events where everything goes well.

These are the reasons we persevere.

It’s the reason that we fight for what our child needs. It’s the reason I apply for those grants and seek out enabling equipment.

It’s the reason we work hard to find the balance with trying new things, and sticking with what works.

It’s what makes us these amazing, adaptable, versatile parents.

For all the times we’ve been knocked down, we have always dusted ourselves and got back up and come back fighting.

It doesn’t matter how bogged down we get, we will always get back up and continue the battle… because those smiles are more valuable than any piece of equipment you could ever ask for.

About Ceri-Ann Brown

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

Leave a Reply

Your email address will not be published. Required fields are marked *