*Ambers Autism Awareness Diaries November 2014.
As written by her Mum Christine Robinson Twinkle. Photographs used with kind permission of Christine.
Edited by Kenneth Ingram.
7 November
Autism traits when reading them are pretty rigid, but Amber proves every day that the textbook although good for learning about autism isn’t as reliable a source as living with her. Here’s a few textbook pages she’s changed our minds on.
- She must have a very strict routine – although somewhat true for certain things Amber has proven to be adaptable to different and sometimes unexpected scenarios. Where at first we stuck to the same thing, same time, same days… She’s shown we can relax a little and it really does her no harm.
- She is unlikely to claim any friends. Yes slap on the hand for us but reading the difficulties social interaction presents we did wonder if she would have friends. More fool us as she’s a very popular girl and shows more caring for some than others. This development is also down to the understanding of other kids.
- She will only ever speak in short sentences. If you heard her argue with her brother you’ll know this is so not true.
- She will have difficulty understanding other people especially emotions. We were extra wrong about this, we find she is very sensitive to people’s emotions and will act differently if we are sad or happy. She can also vocalise this well.
- She will like order and have everything in its place. Walk or rather dodges everything she piles in her bedroom and you’ll see this is far from true!
- She will use obvious stimulations to express stress. Now Amber does have a few stimulations but nothing like we expected, hers are more vocal than physical.
There’s going to be loads more that she will change our minds on I don’t doubt, can’t wait to find out what they are!
8 November
Handling it – bonfire night seems to have turned into a 5 day affair this week, with it falling in the middle of the week. Thinking back to last year when meltdown ensued and there were constant tears of distress all night till they stopped we were ready for the same. However Amber seems to be handling it much better. The loud bangs still frighten her .. In fact one went off at the back of us and she bolted like a scared rabbit upstairs, but she’s coping a lot better than she did before. We didn’t do anything different this is all her, she has found a way to cope better while being able to tell me “mummy don’t like that bang” what a difference a year makes!
Sensory – sensory issues can affect most areas but we’re going to do food. Getting Amber to eat solids was really difficult. She never ever put anything in her mouth, not fingers when teething nothing. She moved onto the first stage of weaning, sloppy foods but we couldn’t move her to the next stage. We tried all sorts till she was basically living on yogurt and milk. We always made her a plate of food and just let her play around with it; she would always smell it but never eat it. A couple of years later she just decided to pick up a fish finger and ate the lot! Now though there are still things she won’t touch mostly combined textures.so cereal with milk, sandwiches with a wet or soft filling. She will however have gravy on most things! Her diet is varied and actually better than her brothers!!
Behaviour – Amber has been an absolute madam this morning! Trashing and picking on her brother, these behaviours come from a need to control things and aren’t exclusively to do with her being on the spectrum. I gave her the iPad and she listened to some music and then had a bash on the piano which calmed her down.
10 November
There’s no Monday morning blues in this house as I’m so excited about another Amber win!! Last night Amber decided to find all her knickers and take them to bed, strange we thought cos she never does that. She had, as always a pull up on and decided to casually come down at around 11pm having taken it off and swapped it for big girl pants. Have to admit I was a little cautious and asked her a few times if she wanted to put a nappy on to which she answered “no knickers on mummy”. She’d just drank a bottle of water that she usually takes up so I was still a little um and ah but left her how she was. She woke up this morning, dry as a bone and went and used the toilet like she’d never worn a nappy past 2! What was super cute is she was so proud of herself and knew she’d done something very grown up! Is it a one off? I don’t care she did.
Emotional – My most favourite progress Amber has made is in the expressing emotions department. Now reading up this would be something we knew she may struggle with. It’s all in with the social interaction bit us spectrum parents hear a lot of. She has, I’ve noticed, become very vocal with her expressions where she wasn’t before. If she knocks my foot she will now say “oo sorry mummy” she was very loving when she had a sleepover with her friend and said “aww mummy look Abbie is sleeping now” while hugging her and stroking her back. The random “I love you” is coming out more frequently and just enjoying laying with us in close contact and looking content with it is especially sweet. I realise how lucky we are to have this part of Amber as some parents don’t get to feel the obvious expression of affection from their kids.
11 November
Parents evening – so my favourite bit of info was to do with social interaction. Amber likes to play on the wooden bridge in the playground and never leaves it, her teacher said that when the other kids want to play with her they have to get on the bridge too and she’s rarely alone on a playtime.
16 November
Positive language – my biggest bug bear when reading about Autism is how the media will often use the phrase “suffers from Autism/Asperger’s”. This drives me insane for a few reasons. Firstly when I look at my child I don’t see suffering that implies pain of some sort, never having a good day, it implies it will affect her life in the most disastrous of ways that she can’t live the average life. Yes she has moments of distress and meltdowns aren’t fun but I still wouldn’t say she suffers from ASD. This is how she was born, it’s a developmental disorder it’s how she was made. Suffering makes it sound cruel in some way that she has this. I have never felt that way about it. She’s an amazing little girl whose moments of happy outweigh the sad ones massively. It also implies she needs to change cos how she is, is so awful she’s suffering. She’s perfect and came exactly how she was meant to. Please always use positive language when talking about ASD.
21 November
F
riday was day off school, Amber has been super cute, first she shouted “bye Kym, love you!” to dad’s other half **heartmelter. Then the little miss found her Christmas presents which I should have been like “oh no” but she was soo excited to see there was a big dolls house I ended up giggling. We’re having a sleepover with Abbie and Daniel and Amber randomly asked “Abbie you’re my friend aren’t you?” aww.
Speech – so I posted not too long ago Amber’s speech was still prompted by cues or answers to requests or asking for something, but it’s been spontaneous of late and randomly so. She’s told me she likes my hair, asks questions that’s nothing to do with anything going on at the time and of course telling people ” love you”. You can see more of a personality emerging, she a sweet, thoughtful and kind little girl.
27 November
Today the papers report that people with autism see faces differently, not showing off but I kind of knew this already seeing as I spent years teaching her emotive faces, to go with their name, to then act them out in the appropriate situation … Tell us something new!!
I’ve been a little tricky and taken full advantage of Amber’s love of the number 4 .. Usually I’ll get a kiss where she bumps my face but now I get a bigger one lasting 4 seconds.
Back soon with more of, Ambers Autism Awareness Diaries.
