Right so one of my main reasons for starting my blog was because I was so so sick of reading memes or posts aimed at girls on the spectrum that didn’t apply to Darcie in any way shape or form! Most will tell you that girls with autism are academically gifted, make friends easily, can mask their feelings and fit in. Darcie is none of the those and that’s absolutely fine! She’s fantastic just the way she is but I hate that girls on the spectrum get pigeon holed and barely anyone talks about this other side where Darcie sits. Sooooo that’s what I’m here to do!
Darcie is non verbal, she can’t use sentences or communicate with you verbally but if that girl wants something damn she’ll grab your hand and take you to what she needs! She sometimes uses echochlia which basically means copying words or phrases from favourite t.v shows, films or songs. If she does say the odd word it’s never in context, just totally random but I love hearing that voice when she does! What she does do though is count to 10! Bloody 10! That too was copied from Peppa pig (the less said about her the better). Darcie uses picture exchange cards (pecs) at school, she’s still learning and will only use them if she really wants to! There’s no making that girl do anything she doesn’t want to! She absolutely refuses to use them at home, but again that’s fine because I know how to communicate with her. For the outside world though it’s something I’d really love her to get a hang on, makaton too!
Darcie is still in nappies. Another thing that not many people really speak about in older kids, not sure why not though! She has no self awareness what’s so ever and actually the level she functions at, at the minute is 8-20 months old (she’s 5) The resources are so expensive! Seriously people see us coming! They stick ‘sensory’ ‘autism’ ‘disability’ in front of something and sell it for twice as much, it makes me so angry! We get help now with Darcies nappies (she gets 4 a day prescribed) but before this it was costing me a ridiculous amount of money, I obviously still have to buy extra because how the hell can I tell her she’s only allowed 4 nappies a day?!
SLEEP! I can deal with absolutely anything autism and life throws at me but my god the lack of sleep is a killer! Especially in the early days I felt like i was barely getting through the day and sinking quicker than I could swim. Not so much these days I’m used to it all now and I wear the half dead look quite well! Darcie’s body doesn’t produce melatonin which is what tells our body to go to sleep, so she has to take prescribed melatonin. For the most part it works, but sometimes she’s still up hours later or sleeps for a few hours then is up all night long. Hit and miss!
Just to point out, I’m not saying that the girls that are academic, make friends and do well in social situations are any less than the girls like Darcie. It’s just that my girl and others like her very rarely get spoke about meaning obviously no awareness for that side of it! Hence my blog.
I absolutely love learning about autism and everything that comes along with it. Knowledge is power right?! I made it my mission when Darcie was diagnosed to make myself an expert in her, her needs, her autism. Because it is hers. Like the saying goes, if you’ve met one person with autism that’s it, you’ve met one! Each person is as wonderfully different and unique as the next, no two the same!
BY DARCIES VOICE AUTISM MAMMA