I still can’t get my head around the fact that Tink is now ‘disabled’. It’s just bizarre. I watch her running around the garden half naked, climbing up her slide and down the steps, jumping like a mad thing on the trampoline and of course, she’s not what many people think of as ‘disabled’. However, look more closely and you will notice that she is half naked because I have to strip her before she eats particularly messy meals like the pasta we had tonight as she just won’t eat it nicely with a fork and has to smoosh it all over her face. You might notice how she will stand at the top of the slide without holding on, when the wind is strong enough to be literally blowing the garden furniture around the garden and probably Tink off the slide if I don’t keep an eye on her – she has no sense of danger. You may even, if you are more aware of these things, notice how she will jump for a very long time on the trampoline, and any other surface really, as she seems to need the sensory input that jumping gives her. All these things are not ‘typical’ for a girl of her age. But they are typical Tink and they are part of her condition that now renders her ‘disabled’.
I have been feeling guilty as I won is some tickets to visit the zoo tomorrow as part of their ‘Dream Night’ – a special evening where the zoo opens for families with disabled children, where they can visit an attraction with other families who know and understand their difficulties and won’t judge. I don’t feel that we deserve these tickets, as I still struggle to see us as one of those families.
Then today, I saw checking my bank account online and there, unbeknown to me, was a payment from the Department for Work and Pensions. It appears that Tink does qualify for Disability Living Allowance (DLA). I had applied for it as, given her diagnosis, we were entitled to, and everyone says ‘you must!’ I filled in the form very honestly, answering questions about what Tink can and can’t do, but thinking, “she’s only three, of course she can’t do that on her own!” I never expected to actually be entitled to anything. However, somebody has decided that actually, a bit of extra money every four weeks might make this family’s life a bit better. So, that confirms it. Disabled. Bizarre.