Everyday autism – Amber isn’t able to realise when something is harmful to her. Today for example she was eating her dinner; a slip of concentration by myself meant she put too much food in her mouth resulting in her almost choking. This is something we have to watch as she doesn’t know not to over fill. Needless to say the colour drained from my face for a second when she couldn’t get the food out the first time, but another good cough brought it out. Amber is not the kind of child that will learn from something. This as well as many other situations is the reason she needs to be highly supervised. 27th January 2014.
I’m very positive about Ambers Autism, I understand her completely. This comes tinged with sadness at times. She’s a little girl half my size, big blue eyes and usually raggedy curly hair. Behind this appearance I sometimes see a struggle. Situations she can’t cope with that I discover after the same reactions a few times. It makes me feel bad that I don’t get what’s going on straight away and she’s lost in whatever she’s feeling with no help. When she cries she will repeat lines over and over like she’s desperately trying to tell us what’s wrong or trying to figure it out herself. Her stress levels drive her to release in violent outburst that she always says sorry for now. She is 6 which makes it hard not to be heartbroken for her, and then you remember emotionally she is even younger. If you’ve ever felt inexplicably down or like you can’t cope in your adult life, Amber deals with those things already and has done since she was born. She’s also trying to do all those other things kids her age do, learn to read and write, get up every morning for school. These sad times don’t overwhelm me, but they can hit like a punch in the face. I admire her immensely, she’s brave and she doesn’t realise it. The people in life that are faced with challenges and continue to grow are the kind of people that become strong, she already is. 25th January 2014.
In the build up to autism awareness month ourselves and Leeds Autism Service will be bringing “Spread Awareness with your Selfies” on the 27th March we will be at the St Johns Centre Leeds asking people to take a selfie with us and post it on all their social networks sites. For those that are able to donate we will welcome your small change and it’s all for the best cause! So if you’re out and about come find us. 25th January 2014.
Everyday autism in action example. – It’s getting cold and especially on a morning. On our walk to school the grass has been glazed white with the frost; this completely threw Amber off her stride. It changed her morning routine and she got quite upset asking ” mummy want the grass green” she missed a couple of lamp posts she usually goes round cos it would mean she’d have to stand on the white grass. She also cried yesterday when they rain was extremely heavy when it was time to go to dads. She was conflicted because she knew she had to go outside and wanted to, but the heavy rain, which fell quite loudly whipped up in a strong wind literally scared her, she told us through tears ” I don’t want it rain” These weren’t meltdowns the two things made her very sad, her sensory difficulties and visual change in routine made an ordinary everyday thing very hard for her. 25th January 2014
Amber had a bit of a grumpy morning. She wasn’t happy at all. I’m won’t be the only parent who tries their best to keep everything calm before they go to school. I don’t want to send her to school stressed because it will then build up over the day and ruins her concentration. Some mornings you just can’t keep the balance. 24th January 2014.
*Ambers Autism Awareness Facebook Page. Just for a change, added some Facebook replies, to this topic. Answer to questions are marked with a *
School – Achievement for All. Amber school has brought in this scheme in order to improve communications and give parents and teachers a better way to look after the child’s needs at home and school. The two are brought together in an hour long “structured conversation”. At first I was slightly cynical as appeared to yet another scheme to make schools look good, an opportunity to throw inclusion around. However I’m warming to the idea. 3 hours dedicated to ALL of Amber not just her “school self” and feedback from other schools is good. Also this is a positive for mainstream, parents can feel not listened to and that they don’t get a chance to put their points across well. This scheme takes that away as you have dedicated amount of time to just that. Amber’s progress will be followed over 2 years taking all schemes pointers, not just education reports or IEP’s. I’m looking forward to see where this goes. 23rd January 2014.
Cindy Gavin, So they talk to you for an hour?
*Ambers Autism Awareness You get 3 hour long sessions through the year..In addition to parents evenings
*Ambers Autism Awareness It’s more allowing you to talk about your child.
Cindy Gavin, What a good idea. As the short parents evening is over too soon and you forget what you were going to ask.
*Ambers Autism Awareness I do that all the time… It’s also as they said a conversation based more on your child and not just what work has been done etc.
Cindy Gavin, and being an hour you relax and talk more fab scheme.
*Ambers Autism Awareness Yep, you can also offer up your child’s interests etc. and they will try incorporate it, in their learning. I’ll be seeing if Amber can do something with her love of taking photos.
Cindy Gavin ,Oh yes you should get them printed and have a gallery event at the dry salters sell a few and raise money x
*Ambers Autism Awareness Lol they’d be lots of sad face, big eyes… But I like the idea! I was thinking when cash allows doing something fab with her pics.
Cindy Gavin ,Yes but it is art chick have them done in negative and sepia loads of money raised x
Cindy Gavin ,You could get her one of those tough cameras she can take anywhere and teach her to make a picture diary as a way of communicating when she is having a bad day x
*Ambers Autism Awareness She has her allowance next week so its ear marked for a camera for her.
We have just found the most amazing thing Amber has done that we never even knew about! Halen has a DSi and as you all know she loves her selfies. There’s plenty on there, but she’s played around with them…she’s also wrote loads of words, letters and numbers. Technology works better for her then pen and paper. I’m overwhelmingly proud she does these things on her own. 22 January 2014.
How can we successfully get people to understand autism when it’s such a complex, varied and hard to get your head round type disorder? The different variations person to person makes it difficult to recognise and put out the right kind of information. Parents have contrasting opinions of why and which bits of their child is autistic and how to deal with it. Is it a surprise then that there’s conflicting reactions to autism? Here is what I recommend. If you want to know what it’s like don’t spend time trawling medical sites, look for real stories. Groups and pages on fb. There are many like this one. Ask questions. Don’t shy away and wonder if it’s inappropriate, after all if you don’t ask you don’t know. 21st January 2014.
Amber had some good conversation today, she’s said..she likes Miss H cos she’s nice, she doesn’t want a holiday at the seaside or camping she said “just playing” and she wants it on a Tuesday! She wants to go see some cows but not horses and she doesn’t want any happy birthday parties, but she’ll take the cake. 20th January 2014.
Amber was a massive handful today; my living room looked like a rock band had an after party..The curtains were pulled down, chocolate milk everywhere, dinosaurs, my little ponies and Barbie’s all over the sofa which ended up cushion less. Once she gets started it’s difficult to stop, but she keeps me going lol. 18th January 2014
Watching Amber with her brother Halen is a beautiful thing, whether they’re having an argument or playing around each other I’m very proud. It took a long time for Amber to even acknowledge him and he didn’t really understand why. They have a cute relationship and yes they tell tales on each other as well! 18th January 2014.
This year we mean business with our fundraising and awareness. We already have some “Amber’s Angels” on this page. Kenneth Ingram being the newest with his blog piece, Cindy Gavin, Maxine Foy has donated to help raise cash. James Massie, Ricky Platt and Ian Major brought out their alter egos twice to raise cash. Of course Vikki Blake who helps out and keeps my nerves calm before an event! There are many others.. If you would like to be Amber’s Angel we wouldn’t say no. You can do this by raising awareness, organising a small fundraiser, donating time or prizes. We are going to officially certify this in a small way. Inbox if it’s something you feel like you can do. 17th January 2014.
Note : from Kenneth Ingram
Hi Christine, Will have a think about how I can raise money for Amber at my Birthday Party.