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Our New Badge

Ceri-Ann Brown's avatar

by Ceri-Ann Brown
on

When I was a child I had these little books with photographs in and each time you saw a real life version of the photograph you would tick. 

It was a sort of watchers guide to keep you entertained on car journeys or on days out. I remember I had one about wildlife i.e birds, squirrels and so on, and I also had a vehicles one. 

Recently this popped into my head when I was thinking about cerebral palsy.

I feel like with each piece of equipment issued, or new specialist referral you receive or each service you are referred for - you unlock a new level, you earn a new badge, you can tick off another photo on your watchers guide.

Things you eventually tick off - having a physio, having an OT, acquiring a standing frame... acquiring a second or third standing frame, getting a wheelchair referral, collecting your first wheelchair, a feeding tube change, an upgrade from NG to G, trying and failing at a PEG-J, booking a holiday in an adapted caravan, visiting a city hospital, visiting a city hospital that isn't your nearest one, your first trip in an ambulance, your second, third, fourth.

You get my point. 

Our most recent badge was a big one - the wheelchair access vehicle. A year ago if you used the acronym "WAV" at me I would have no idea what you were talking about.

Now I am in the world of slidey doors, ramp access, winches, hooks, and oh my goodness - actual air con!

Never in my life did I expect to own (well kind of own) a new car. Nor did I really want one either to be honest.

I want to get from A to B with minimal hassle and for us that has meant needing something big and with wheelchair access.

I always said I would never drive a big car too.. it is amazing what you will do when it means making life easier for yourself and your child. Now a big car? No big deal.

(Unless I have to parallel park. Please don't ask me to do that, with or without parking sensors!)

The whole process seemed a bit staggering at first - who do we apply to, can we afford the deposit? Do we qualify for a grant? Do we need a winch? Will we have space for her bags?

Can I even drive a big car? Will people leave space for the ramp? And many other perplexing questions.

The volume of paperwork involved in filling out the mobility component of the DLA (or PIP - what do I even call it now?!), the choosing a car, the choosing a company (we went with access alternatives and got a "nearly new" as the deposit is way cheaper and we were too lazy to apply for the grant), and then the long wait!

Prior to getting our new van (he is called Huey) I was driving a ford focus.

Days out were an arduous affair - taking apart and re-assembling Amy's incredibly large and heavy wheelchair and eventually ending up in a situation whereby no passengers would fit in the car and so on.

It is still difficult with a WAV - the wheelchair itself has 5 clips, and then the car has 4 straps attached to each corner of the wheelchair base and in addition to this a big seat belt as well as remembering to put the brakes on the wheelchair.

All very safe and secure, and you'll feel so proud that first time you realise you've done it without too much thought!

Personally I feel quite strongly that the moment your child is a wheelchair user and no longer in a pram - THAT is when you should have a wheelchair van.

There is a HUGE difference between loading a pram into a car than a wheelchair - something that we all learn the hard way.

Wheelchairs do actually amaze me, these hefty pieces of wonderfully crafted bio mechanical engineering, perfectly contoured and adapted to your child's specific postural needs.

They are one of the shiniest badges you and your child have earned and will enable you (hopefully!) to access the world with relative ease.

For me the need for a wheelchair is synonymous with the need for appropriate transport, something I will one day take up with someone, somewhere... maybe an MP? Who knows.

No one should have to struggle how we did for so long before Huey entering our lives.

If you haven't applied yet for your mobility car - I recommend you speak with other parents who have done this already. Attend any exhibitions you can where you can test the cars with your child.

I also recommend you contact anyone on your care team for help with the paperwork if you are struggling.

Take all of the help you can get, soak in as much information as you can, and most importantly - enjoy seeing your child's happy face in their chair when you glance in the rear view mirror - for me that has been the unexpected thing that I loved most about getting this car.

I wish you luck on yours and your child's quest to earn more badges... 

May you all wear them with pride as you reflect on the incredible journey you have embarked upon. 

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