Thursday 3 May 2012

Allie and The Hunger Games

My mum and Allie started to read The Hunger Games and see if she could manage to see it in the cinema - Allie and loud noises don't really mix especially in the dark. I had to take over reading it with her since my mum found the similarities between Allie and Prim too upsetting. Although Prim is younger, Allie is around the same age mentally. You can really see Allie in the character especially when Prim is described as snuggling into someone in her sleep or having her shirt tails continuously untucked. Allie loves nothing more than sleeping in the same bed as one of her older sisters and she snuggles right up to you. It's fine in Winter when the little heater in your bed keeps you toasty warm but not so great in Summer when it's unbearably hot. She has a sneaky trick of somehow taking up most of the bed and covers despite how small she is.

Monday 9 April 2012


THE RUGBY FAN

Although not being the most enthusiastic participant in sports, Allie is a serious sports fan, with a particular obsession with rugby.
There can't be many 16 year old girls who are experts on the many complicated laws of the game of rugby, but Allie certainly is one. With a sharp eye for a knock on or an offside she keeps up a running commentary to "assist" the referee.
Like most Scottish rugby fans she is used to her share of disappointments. A succession of signed shirts and "lucky hats" have all failed to improve Scotland's fortunes. Just as well for Allie that her other team is South Africa whose wins are more frequent and regular. Ever the diplomat, when it comes to the Jocks versus the Boks Allie will support both teams and make sure she's on the winning side.
Allie is also a big fan of Edinburgh Rugby and is a regular at Murrayfield on a Friday night, when she can get even closer to the action to offer her special brand of encouragement.

Monday 19 March 2012

Exams - Aargh

Our big thing at the moment is to get Allie through some exams. It would be fantastic for her to have at least some certificates. It is very frustrating though and takes a lot of effort from us as Allie doesn't mind whether she does or not.
 One day she can remember loads of information but on other days she knows nothing and looks at you blankly even though you know you have covered the information with her. You just have to hope you have covered the information so much she can't possibly not remember something.
Last week we were studying for a biology test, luckily I like biology. Anyway we read through it, then read through it again and I ask her to fill in gaps and then ask questions afterwards. half way through she said it looked like I needed a back rub, so she does that while I'm asking the questions. No flies on her as she was looking over my shoulder at the answers! Tinker!
She did ok at the test though!

Saturday 10 March 2012

Work Experience

I am so proud of Allie.She completed a week of work experience at the nursery of her old school. Everyone who worked with her said she was delightful and really good at following instructions and with the children she was helping to supervise. A real milestone she has achieved.
Well done Allie

Monday 5 March 2012

The Mysterious Case of the Vanishing Biscuits


Everyone knows Allie's feelings about chocolate biscuits. They are her favourite food, without question, and she would only eat them and nothing else if she had the choice! There were so many times when we used to come home to find her sitting on the couch, surrounded by empty packets and boxes (although sometimes she would tease us and put empty packets back in the cupboard!). It's not that she doesn't like sharing them - if you're sitting with her she'll quite happily offer you a handful. It's more that she just can't leave them alone if she knows they are in the house! It's also not always just biscuits - one of the more memorable occasions was when I came home with a friend and knew there were ice creams in the freezer, it being the middle of summer. We went into the freezer to find an empty box of ice creams because Allie had managed to work her way through 8 of them before anyone got home! Far from being embarrassed by this, she was rather proud of herself at this remarkable achievement!

Sunday 4 March 2012

O J - No Way

Allie is slow to develop in all areas. This means undergoing more tests at the hospital. One of the most recent tests involved having a full bladder ultrasound. I was working on the day of her appointment so her dad took her. Allie can't feel if her bladder is full until she is desperate, which makes this kind of test difficult. I did say to her dad to make sure she had lots of water but not to have the orange juice they give her at the hospital because it would make her sick. Well guess what - they phoned to say she would have to go back to have the scan on another day as she had been sick. I just said did she have orange juice and there was just a little oops!! The nurses at sick kids are very kind though and dealt with it ably.

Thursday 1 March 2012

Mirror mirror on the wall, Allie's the fairest of them all

Romeo and Juliet, Bert and Ernie, Mickey and Minnie. All great relationships but none of them compare to the relationship Allie seems to have with mirrors. But it's not just mirrors, it seems to be any reflective surface, that capture her attention and keep her gaze locked in an intense battle to see who will look away first (it almost feels as if it could sometimes be the mirror!). When it comes to eye contact, although being reigning stare match winner in our house, Allie cannot seem to hold it for much more than a few seconds. And don't even bother trying to catch her eye if there's anything reflective about - she'll be only half listening while staring transfixed at herself. Don't get me wrong this is nothing to do with vanity but seems to be linked in to her disability. Blinds have to be shut often especially during mealtimes to try and stop her from chattering away to herself in 'the game'. Even with her back to the window she'll manage to find a way to sneak a peek.

Calamity Allie

Allie has an incredibly high internal pain threshold. The first time we became aware of this was when we were on a skiing holiday and unfortunately she broke her leg in a fall. As she was not screaming in pain the instructor carried her down the slope in a fireman's lift. When she got to the hospital the doctor, having looked at her x-rays said that he couldn't believe she had broken her leg as she was not even crying!
Another time she broke her arm while being given a lift on a quad bike by her sister. We didn't realise it was broken and were trying to make her swim backstroke for two weeks. When we went to the hospital the doctor took one look at her and said "Nice broken arm". Can you imagine the guilt you feel as a parent. Still it did have it's advantages as she heals better without having a cast on as there is too much muscle wastage under a cast.

Pasta vs.TV

Allie can be quite a fussy eater at times. If she could she would quite happily live off chocolate biscuits. One of her favourite foods is pasta. When she was younger we had prepared a nice family dinner of Gnocchi and were all going to sit down and eat together. Unfortunately Allie was anxious to get back to watching TV so decided she would eat as quickly as she could. The Gnocchi was shoved in her mouth and swallowed whole - time couldn't be wasted on chewing when there was TV to be watched! The plate of food disappeared  so quickly it barely left a mark on the plate. Allie then decided she needed a drink to try and get normal feeling back into her mouth after eating so quickly. A cough and a splutter later the Gnocchi had reappeared back on the plate intact and unchanged. It's safe to say that Gnocchi is never really eaten or looked at the same in our house since.

Diagnosis

When your child is different, you are desperate to find a reason. Our diagnosis for Allie is that she has a micro-insertion on the long arm of chromosome 22. This affects all the connective tissue in her body. She has dyspraxic, dyslexic and dysgraphic tendencies. She has a phenomenally high pain threshold for broken limbs but cannot bear her hair being brushed. Our file at Sick Kids is massive from years of doctors adding countless ideas but no definitive answer as to what her diagnosis actually was. There is no cure but you have to deal with all the manifestations of their difficulties, no matter how different they are each time. All we want for our daughter is be as independent as possible.

AllisonWonderland

I came home from work one day, to find my teenage daughter watching Disney Channel, with subtitles on wearing long rubber gloves. She is a really loving girl but has learning disabilities which are becoming much more noticeable as she's growing older. I thought I would document our journey through life with a teenage child with learning disabilities.