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…and what do you do with your DLA dear?

…and what do you do with your DLA dear?

When we had our children, these beautiful dreamed-for, hoped-for… much-wanted children… we’d never heard of DLA. Didn’t know what it stood for, what it was meant for, that it existed at all…

When Small’s physio – having watched me push his 9-month-old cotton wool arms into his jacket - gently suggested that we might be eligible… we didn’t want it. Didn’t want what it stood for. That Small was disabled. That we might need help.

But it’s surprising what help you do need. And you come to realise that bit by very small bit. It pays for the nappies you’re buying over the age where your child would usually have got themselves dry… and when the NHS steps in with their supply it pays for the additional nappies if the 4 a day you’re allowed aren’t enough. ‘I’m sorry, your son poos too much’. (That never actually happened, but that’s essentially what they’re saying).

It pays for additional water/ fuel/ clothes as your child ratchets their way through more changes of clothes a day than you ever thought possible. Messy play? No, just dribble… or food… or poo (again). It pays for the dozens of hopefully bought, cast-aside-in-scorn cups and cutlery sets that we buy in the vain hope that surely This One, This One… they will make use of, will be the right height/ depth/ weight/ colour to help your child to learn to eat and drink a little more independently.

It pays for over-priced ‘special needs’ toys that light up or spin round and play music as your child, your gorgeous child, interacts with their world in a whole new way and these – and only these – help them join in. Make them laugh. Smile. Enjoy life.

It pays for fuel and a bigger car. Your child who cannot walk still needs to go places, see things, visit people… just come shopping… but we cannot walk because it is too far or downhill or just raining. So your child – and all their equipment – needs transporting more than most. In a bigger vehicle than most.

When Small was, well, small, and we went away it was just him and a pushchair and a travel cot… now it’s a wheelchair, and off-road buggy, a bed in a suitcase, a great big travel seat… and not much room for anything else. Sometimes when we go away – our not very big family of four – there’s so much stuff we take two cars.

I miss the travelling all together.

And sometimes (whisper it) you might just feel you want it to help pay for some wine.

Or chocolate. Or sometimes both. Just to remove the taste of the day. Set you up for the next one.

Whatever expense it may bring.

Firefly Blog

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

itssmallworld

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Working mother of 2, one, my beautiful boy, has an undiagnosed genetic condition. This is (mainly) his story.

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