I am uttering a plea now to anyone who’s listening – please God, no more forms. I’ve had enough of forms.
In life pre-child, I had to fill in very few forms; mostly things were sorted out over the phone to various persons…I am reliably informed by friends of neuro-typical kiddos that they too have to fill in a mountain of forms for their kids too - school trips, permission slips, plus other rather more onerous ones for things like tax credits. I’ve plodding through these too, they’re not really that bad.
But so far this week I have signed no fewer than 6 forms for school, 4 care plans for various people (hospice/carers/school), a form to help us with water costs, another to inform the lovely people at DWP that our income is about to dramatically reduce and then the ultimate in trials of patience and courage landed on my door mat. The Disability Living Allowance form.
Oh God. 42 pages of having to explain in extremely fine detail just how bad things really are for my little man. I am PRAYING that we are awarded DLA for more than 2 years this time, I just don’t want to have to tackle this behemoth of a form again for a very long time please.
We spend our days loving the special little guy we’ve been blessed with – celebrating every single achievement no matter how small it seems because for him, it's huge. We love seeing that happy little face break into a huge smile of joy as we come in from work, followed by the gleeful babbling as he tells us all about his day. He really is a ray of sunshine in my life, he has taught me what love really is, and that all the things I held so dear before his arrival really don’t matter much at all!
But then the DLA forms arrives, and there it all is in stark, brutal clarity.
You see, I have to write ‘Sam is reliant on his carers for all his needs’ pretty much on every page. Every. Single. Page. And it HURTS.
Having to acknowledge that this wonderful child, with the shining smile and beautiful personality that just lights up the room can’t walk, talk, feed himself (or even eat orally for that matter), has precious limited mobility, and basically can do NOTHING independently doesn’t just break my heart ...it rips it, still beating, form my chest before tearing it slowly to tiny pieces before stamping on it.
I can’t face the DLA form in one sitting; I have to take several days to battle through it before then battling through our mountain of Sam-related paperwork to find the relevant bits of evidence I need to send in with it (the whereabouts of his certificate of visual impairment is currently, irritatingly eluding me but I will find it, oh yes, I WILL find it…). It’s a job in itself!
And yet, we need that DLA to be granted.
Not just for the fact that it really does make a difference, allowing us to pay for care or equipment for Sam; but because the converted van we have through the Motability Scheme depends on Sam being awarded the mobility component. Shouldn’t be an issue, after all he IS in a wheelchair full-time and is registered severely vision impaired, however there’s always that little voice of worry, gnawing away at the back of your mind.
However, it is now completed thank goodness….. just got to find that elusive visual impairment certificate…
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