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Hidden cost

Hidden cost

Sam’s bed is a profiling cot bed, allowing us to raise the end and foot end to get him comfy. If it were any ordinary cot bed or toddler bed, there would be no additional cost in having it moved to the new house.

However, because its specials needs bed it will cost £400 to have the manufacturer move it (I kid ye not), or £280 for a removal company to do so. Its daylight robbery, from those who can least afford it! I honestly don’t know how these people sleep at night.

Another example - Special needs buggys, pushchairs, wheelchairs. If mainstream buggy manufacturers didn’t include rain/sun hoods with their products and asked parents to pay out several hundred quid for them, there would be an outcry. And yet, that is *precisely* what we have to do.  Some are lucky and find universal rain covers that fit the SN buggys, but as Sam’s is a modular wheelchair designed specifically for HIM, we had no option other than to fork out for the hood. We’ve had people tell us how lucky we are to have things provided for us... I beg to disagree. We would much, MUCH rather that our little boy didn’t have to have a wheelchair, or oxygen monitor, or any of the other things he needs to make life more comfortable/safer for him.

A charity provided his oxygen monitor, we still shoulder the cost of the probes and other consumables (at £100 plus for 10 probes, we tend to treat them like gold dust). Yes, the NHS has provided his wheelchair, but we had to pay for the essential hood and rain cover.

Its these hidden extra’s that most people don’t realise we have to pay out that makes raising a child with special needs so much more expensive than raising a healthy, neurotypical child.

Over the past few years charities that in the past SN families relied on to help them deal with these extra costs have been squeezed so now many have no choice but to means test.  And so, special needs parents become masters at fundraising.

Currently I’m supposed to be training for a 5K colour run to raise money for another item Sam needs; anyone who knows me knows that while I used to run at school, those days are looooong gone!

Fingers crossed that in between the giggling, they feel like sponsoring me to be pelted with dye while looking like something the cat dragged in!

Firefly Blog

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

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!). While I love my work it's not an easy juggling act, and on occasion things can go wrong in truly spectacular and often funny ways...

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