Amber’s Diary, Written by her Mum, Chrisitne Robinson Twinkle

 

A day to day diary and Facebook postings of Amber’s page.

It’s just gone Mental Health awareness week. So it’s as good as a reason as ever to bring this in front of people’s minds.

 

Amber is a beautiful  6 year old Girl and is Autistic. Christine her Mum has Arthritis, so not in the best of health herself.

I think Christine does a fantastic job of caring for Amber. I think you will agree, when you see Amber’s diary below , written by Christine.

I think Christine should keep writing a diary of Amber and put into a book at some point. Maybe as an e-book, where people can read on one of those digital book readers.

Keep the Kleenex handy.

Written by Christine, and put onto the blog by me with Christine’s permission.

 

On a roll…

Autism parent issue – you and your child are judged…a lot. As parents we are self-conscious in some way of their child’s behaviour. Have you ever been out somewhere and said or thought … “You have to be good when we get there” it’s not a bad thing it’s about teaching children social skills and etiquette, but the compass that we all measure behaviour by makes other adults and children judge on it. The issue us autism parents have is that our children have different behaviours for different reasons. Sensory ones I think are the biggest cause of meltdowns there is. Straight talking and not being able to read between the lines and understanding consequences of things they say or do, as they struggle to read facial expressions is another. Our child’s behaviour is considered naughty, rude and maybe uncaring at times, but this is the only way our children work out the world. Of course the view that your child doesn’t behave well is then used to conclude an obvious failure on the parent’s part, which isn’t the case. Being judged negatively i have accepted is a given, it doesn’t upset me or make me feel bad; I do my best and understand her behaviour. What I would say is we need to talk more about it, put people straight and don’t feel like you shouldn’t go somewhere because of it.

 

I enjoy my soapbox ha!

The phase that’s often coined to describe Autism and other disabilities is “hidden” or ” invisible”. This is basically due to the fact that the sense most of us use first cannot detect it and that’s our sight. I can speak from experience I this case, having arthritis I can be slow and my movements not so fluid, I don’t always need an aid to walk but there is a difference in people’s reaction to me when I do. If I’m out shopping and feeling sore and stiff which is always the case I shuffle more than walk, people get impatient and rush past me or sometimes tut. If I have my crutch with me it’s totally difference some people will wait or let me go first, some people still rush past, but lose the tut. They can see I need help to walk so aren’t as, let’s say horrible about it. The only time Amber has an aid if you like is when she’s in her adapted trolley. Some people will sideways look seemingly checking her over to see what’s wrong with her, others have a right good stare which makes me smile somewhat cos you can see them wondering why. The difference between myself and Amber is people won’t immediately come to the conclusion that she has the disability she’s got some still walk off puzzled. This for me is what drives me in the belief there needs to be a big push in awareness for her condition. I don’t care what people think, but I think future. I don’t want the attitude to be “oh isn’t she strange I wonder what’s wrong with her” I want people to think “it could be that she’s autistic, ok” After all there is nothing WRONG with her, she’s not sick or made badly, she’s just living with a condition like i am.

 

You won’t find this technique

You won’t find this technique in any child care books and I doubt your health visitor will ever advise this as a standard practise…but whatever works!

We are trying a new maybe little off the radar technique to get Amber to happily sit on the toilet. We are tuning in her grown up skills and she is showing the rabbit how to go to the toilet. Yes she’s happily sat on the loo with the rabbit hopping round because max doesn’t know how to use it. Now this itself is progress, she just needs to use it. Who knew the rabbit would be good for toilet training!

 

Bin Men

So I come out of work with Adele and see this bloke delivering bins … I mentioned I have stairs in my front garden and get an assisted service, so would the bin men pull the wheelie bin up the stairs, he said yes if you have mobility issues I said ok that’s good then he looks at me and repeats…but you have to have mobility issues…I’m like just because I’m pretty doesn’t mean I’m not disabled hahahaha

 

School transport for disabled children

Cutting the school transport for disabled children to get to school I will reinforce what a bad move that was from the council. With certain disabilities children need their days to be as stress free as possible it contributes to good mental health when they reach adulthood, having a safe way to get to school that is routinely the same is one way to ensure this. CASH OVER CARE AGAIN.

 

Amber’s bedroom smells lovely

Ambers bedroom smells lovely………due to the fact she somehow managed to get into a locked kitchen cupboard, steals a full bottle of febreeze and then sneakily spray everything in her room, even going as far as spraying the light bulb the little monkey lol

 

Christine’s Arthritis

I had the joints took out of my toes, so they don’t bend now…still not used to it, has made me reluctant to have my wrist fused which they’ve said I need. Fusing things together isn’t the most practical thing to live with. My toes for example…it was a pain killing operation, however they still hurt

 

It’s nearly Christmas

It’s nearly Christmas, but my news year’s resolution is set. I’m determined to make a sizeable dent in my autism awareness quest, making a big deal of April and getting as many people to join in as possible. It’s been proven over the last couple of years that if you ask, you get so I’ll be asking a hell of a lot more!

 

Amber starts babbling

Amber starts babbling about Carly and then I look at what she drew and asked her what it was … She said its Carly … Asked her a few times to check! She’s spelt it Cally but who cares haha!

 

Added note from Ken: In next couple of days will try and get a photo slide show uploaded so you can see some of Ambers Drawings.

 

Conversation between me and Christine Robinson Twinkle. Via, Facebook message. Early hours of one morning.

Christine comments can relate to pain massively. I’ve had rheumatoid arthritis for 10 years now and am at a stage where I take full whack tramadol daily, but still struggle! I don’t think I’ve had a full night’s sleep in all that time! I’ve always thought that chronic pain is the one thing that changes your person permanently. I have days when I’ve had enough and cry how unfair it is. Luckily for me I’ve got the kids to keep me distracted most of the time and Amber especially having a lot of needs she has to have fulfilled keeps my mind off myself. I can understand how you would get to the point where the thought of not (deleted) is preferable to living with pain. It is a courageous and good decision you’ve made recording a programme about it all. If you are faced with difficulties then there’s two decisions you can make…struggle privately or be an advocate and talk about it. I think you’ll be a great advocate.

 

Look forward to more of Ambers diary soon.