Our words to communicate fear and courage

“Nana’s not going to be coming any more. Not for a long while. She needs special medicine which will make her ill. She can’t travel. ”

He stood there and nodded rhythmically. Tell-tale frozen face. I know it to mean that in his head the cogs are spinning. Translating to understand what he has actually been told. Processing onwards to work out what his reaction is supposed to be. Scanning the input for meaningful ‘trigger words’; searching the memory banks for examples of ‘expected behaviour’ in this situation.

She waved goodbye, wiped away a tear and was gone. He turned 180 degrees and went upstairs. Lay on his bed. Cried wordlessly for two hours.

When he spoke, he repeated the last words she’d said to him. Repeated and repeated and repeated. For hours. The words were meant as a reassurance; a tenet for courage; telling him to not be afraid. In my son’s mouth, every repetition was nuanced different. Stress the first word; stress the middle syllable of the last word; add a pause before the last word. Every possible reading of those words. Each inflexion with a slightly altered meaning. I knew this, because on the second round of this he added comments to himself. Which version said ‘do not be afraid’ which version said ‘be afraid’. Trying to capture every drop. Parsing out the codex from these verbal glyphs for how he should be to support his grandmother.

AspieTeen viewing list

So today England is snowed in. Me and my wonderful teen daughter on the sofa together under the duvet. This is the YouTube list I compiled for us to watch together.

We understand her diagnosis – so I was looking for videos that would discuss the less obvious aspects of autism – rather than just ‘basic introductions’.

Here is my list Videos for my Aspie Teen Girls . Some very appealing VLoggers as well as some for ‘sciency’ ones.

What have I missed?

How to keep listening (even when they go on and on)

Super-listening is one the many superpowers I’ve been expected to develop as a parent of autistic kids.

This blog is about my baby who didn’t talk. I have other babies that did. And, oh my goodness, they talk. Easily thirty minutes without pausing on whatever is their ‘thing’ at the current time. Briefly throwing out a question like ” who is your favourite Pokemon” to check you’re listening, and then monologue again. Here are my top tips for how I surf it:

  • Whenever they get a new craze, invest twenty minutes to read a wiki on it this means that you can bring in a little bit of reciprocal conversation on the topic they’re interested in, to model good conversation skills. Also means that you can quickly come up with plausible answers to pop quiz questions, even if you tuned out.
  • Make listening face and noise It doesn’t actually matter if your attention wanders. I find that they don’t expect much of you beyond a chance to unspool their mental narrative
  • Mirror their reactions. Laugh when they do even if you lost track of the joke. Look concerned when they look concerned. It’s about nurturing joint attention and emotional connection – rather than the facts.
  • Give them thirty minutes to talk about their thing, and then insert the question you really want the answer to. For example “why were you upset after school yesterday”. The pay off for an hour of listening to Pokemon is that once they’re talking about one thing, they’ll be on a talking roll sometimes.
  • Take them with you when you have driving errands primetalkingtime without eating into your free time.
  • Enjoy the fact that they want to bring you into their world. It’s a compliment. And it’s setting up the idea that you care about their ‘stuff’.

Buddying up siblings

I suppress a hollow laugh when the speech therapist tells me that ‘just ten minutes a day practice’ will easily fit into my day. Which spare ten minutes is this?

It’s never just about finding ten minutes in our household. It’s about finding ten minutes to work with just one child, while the other children are safely contained on another activity. An activity that is interesting enough to keep them out of our hair while we practice, but not so interesting that the ‘target child’ becomes jealous and uncooperative.

My answer to this is to involve the siblings. The easiest person to do this with is Squids younger sister – baby Squid. Baby Squid’s speech is great – and she loves to drill flash cards with Squid – despite the 3 year age gap. Squids eldest brother is a terrible loser. He was the ‘buddy’ when Squids speech homework was turntaking games. Finally Squid is a buddy herself. Her creative and crafty streak keeping her other brother company on fine motor skills work.

I want to teach my kids that families should be about supporting each other. Not walking our paths alone.

And the look that you gave me made me shiver

Cos you never used to look at me that way. And I thought. Maybe I should walk right up to you and say: “It’s a game we like to play”?

Look into her angel eyes. One look and you’re hypnotised. She who must take your heart and you must pay the price.

Look into her angel eyes. You’ll remember when they were paradise. But now it wears a disguise.

Don’t look too deep into those angel eyes.

Now I’m lonely I sit and think about her, and it hurts to remember all the good times

And I wonder does it have to be this way? When I see you, can I take away all the pain?

Look into those angel eyes.

She said she was sick. I said she wasn’t. We both cried. I’m sitting in a corner on my own feeling like I let her down. Two miles away, she probably agrees.

Angel Eyes

It’s depressing when no one understands you.

This article describes what I instinctively feel.

Autistic people’s rate of depression is strongly linked to acceptance/non-acceptance by their family and social circle.

And masking might help with daily functioning, but comes with a mental health cost.

https://link.springer.com/content/pdf/10.1007%2Fs10803-017-3342-7.pdf

Basically – we’re not intrinsically broken. We’re just breakable if we’re barraged with enough negative feedback about ourselves…. You know, like any other human….

Squid collects names

“Hello what is your name?”

It’s such a friendly introduction. Still friendly the second time. The smiles get a little fixed the fifth time. Does she have trouble remembering? Or is it the go to social formula which she doesn’t quite understand the purpose of?

“Hello what is your name?”

In praise of cousins

3 children, growing up, and having their first child within a year of each other.

What used to be a useful source of hand me downs is now a valuable source of life experiences and validation.

My eldest daughter (lets call her ZebraSquid) is so unlike her cousins, I was worried they wouldn’t get on when we met them for Christmas. One cousin had a Facebook page of beautifully curated friend shots. The other one loved to street dance. They both were very skilled at make up, and posted scarily glossy photos of themselves and their equally glossy friends. Basically, on paper, they were girls that she would never normally choose to speak to, let alone to make friends with and hang out with.

We got there for Christmas, ZebraSquid froze in the doorway of the living room: the aunties, the uncles, the snack being passed around, the enforced hugging. When I next looked, she’d melted away. I trusted that as a teenager, she would be safe left to her own devices for a while, but after 3 hours I went hunting for her. I found her curled up in her cousins bed, both of them sureptitiously watching ’13 reasons why’, ignoring the party. Might not have been my choice of viewing matter, but there was a peacefulness about them.

The next day ZebraSquid was again ‘missing’. Appearing for meals under duress, but otherwise claiming asylum under her cousins duvet. I’d check on her occasionally and find her incongruously tucked in between all the girly detritus of straighteners and lipsticks that she’d normally never be seen near.

The third day her cousin had to meet her friends. Two girls appeared in the doorway. One of them with shaped eyebrows, hair blow dried to a soft wave, perfect powdered skin and a cheeky pinch of lipstick. Skinny jeans and a satin bomber jacket. The other had four day greasy hair, a spot on her nose and a thrash metal band T-shirt. They were going out, together, to meet the glossy people. And it was lovely. ZebraSquid didn’t speak the entire afternoon apparently (of course she didn’t), but her cousin made sure that she was made welcome. ZebraSquid saw that under the powder and beeswax, the glossies were also funny and insecure and ambitious and complicated.

I love that the cousin bond built in childhood gives her a pass and a chaperone into a world that she’d otherwise be scared of.