Saturday, 16 November 2013

Desensitized

6am in the Pavitt household and we hear crashing and banging downstairs. Melody had insisted on having a sleepover with Ginny downstairs in our living room and we'd made sure to secure it so that there was no way Ginny could access the garden or playroom. We didn't, however, lock the girls into the living room. Big mistake. 

James ran downstairs and found Ginny sat inside of the refrigerator throwing out its shelves and their contents. Calmly he lifted her out and took her up to her bed before returning to our room with a "your turn", I stopped nursing and handed him Isa before heading down to assess the damage. Entering the kitchen I actually thought 'I've woken up to much worse' and shrugged my shoulders. I started to tidy up when I thought 'wait, let me take a few pics to fb later' and after doing so I put everything away, wiped shelves included, and mopped up the single cream that had spilled all over the floor. Melody walked in with a sad look on her face and said "I don't want to be all on my own, where's Ginny", she spotted that I was already cleaning and I said "why don't you go up to daddy and I'll be up soon for a cuddle", she turned and off she went.

I went into the living room, gathered up the bedding and carried it upstairs, I told Ginny that what she did was very naughty and dangerous and then gave her a kiss on the forehead. Melody walked in moaning, she'd been sent to her room for making too much noise and waking the baby. I turned on the bubble machine so they could both relax and have a look at it and went back to bed. Isa saw me and immediately wanted milk. Not much later melody returned to our room, bored with the bubbles, and started to show us a dance she learned at school. James caught a glimpse on the screen of movement though Ginny's bed still looked like she was under her covers, he went to investigate and found her covers bunched up and Ginny on the floor tearing up books. Again I was tagged in to take over.

There wasn't as much damage as it seemed, only one book cover was torn and the rest was just books thrown around so I sat on the floor and uploaded the photos, James must have seen me on the monitor because he came in to see what was going on and tell me he was going to run the bath when he caught a wiff of something. I've had an on going cold and couldn't smell a thing but Ginny was in need of a change. It seemed as if she had been sat in it for while so I began to feel badly, the need to go was probably what woke her in the first place and the destruction that followed probably had to do with not being able to get back to sleep afterwards. 

It made my heart ache to think what it must be like to need someone for all of your care needs and not be able to tell someone you needed help when you did. Many of us worry about that becoming the case in our old age but my daughter's entire life may be this way. It's the case for many but easily forgotten. For Virginias's school we were asked to send the children in dressed in stripes and spots with a donation for children in need, one of our favoured charities, at Melody's school they wore pyjamas. Ginny made cakes at school and I bought five so we could each. This year the rickshaw challenge expanded to all four uk nations with it's riders being young people supported by funding raised by bbc children in need. It's quite a challenge and a very worthwhile cause but as usual though it showcases the disabled it's an event that still requires the more abled disabled person. 

Ginny's after school club receives quite a bit of it's funding from children in need and the school was approached to see if any of its young people would take part in the challenge. Although the bbc has visited the school was quite shocked, it seemed they did not even comprehend the severity of the conditions the children who attend the school. Hearing this from the deputy head at one of the various meetings I have for Ginny really sunk in. They did not realise how much support the children actually needed, how could they? Many of them, though not all, looked completely 'normal' meanwhile there were so many people people who quite clearly looked disabled and could take part, and of course there those who didn't look the part, were disabled but not as severely. It is a world you can not completely understand unless you live with it. I'd love for people to just spend a day with us to see what it's like, like an incredibly unconventional b&b their minds would be opened. It is the reason I write and post photos, it may not give the full effect but it's a glimpse at what our day to day can be like.

Ginny's morning mischief really upset James, sometimes I'm more shocked by the way it hits him then the actual event. Sometimes I wonder how he's not lost his sensitivity to our life but then again as a stay at home mom I am the one who has dealt with everything imaginable under the sun. Not much can shock me with regards to Ginny's actions. There was a time when I'd heave with tears, a time when disgust would lead to nausea, a time when I didn't think I had what it took to be her mom. The person I was seems like a complete stranger. Who was I before becoming her carer? I think of it often and always arrive at the same answer, a child. This is the only adult life I've ever known. I never finished my studies, I never travelled like I'd planned, I never had a career, I never even had time to just be a couple with my husband as we'd met when Virginia was just over a year old. And now, this will be a permanent part of the rest of my life.

Ginny will never grow out her autism. There won't be a tablet she can take that will instantly teach her how to care for herself and make up for all of the milestones we've missed through the years. I will always be her carer and when I can no longer care for her then what? I can't even bare the thought. It's hard enough to imagine she will one day no longer be a child, that she too will enter adolescence and then womanhood, that she will grow old, that she may have to live her entire life inside her head. It breaks my heart to imagine it, my beautiful little girl forever held captive by the elephant that has taken over her life. I pray she will grow to be more in control, that she will fight him and break through the fog, that she'll find a way to be live as independently as possible but who knows, well just have to wait and see.






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