Tag: ASD

My baby stole the cake at someone else’s birthday party

The 14 year old ‘baby’. Thought it would be funny to sneak away the cake and pretend to eat it all by herself. Her 11 year old brother was outraged at her breach of party etiquette. Screamed a sonic boom to stop time; chased her down; pummelled her; cried. That’s how we were discovered by the first arriving wave of pink taffeta-wrapped six year old princess guests. The three of us locked with mutual submission restraints on the front lawn. Two out of three crying; two out of three shouting.

The party before that we were the guests. The same five minutes of utter madness at the start. This time the 14 year old went into the host’s garden and pelted her brother painfully with tennis balls. Her 11 year old brother was outraged at her breach of party etiquette. Screamed a sonic boom to stop time; chased her down; pummelled her; cried.

The party before that she didn’t go. Apparently she ‘always spoils everything anyway’. The thing is though, she doesn’t. Once settled, she’s fine, they’re fine. Help with the younger children, generally stay out of the way, make a fair effort at ‘manners’. The damage is often done, however, in that first 5 minutes. They’re on show to people who don’t know them well, and they show wild and anti-social behaviour.

We need a better script to start parties. My research resources linked below. I’ll report back how we progress.

Websites with party tips appropriate for ASD teenagers

Emily Post

Lifehacker

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.

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’.

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….

Cultural differences

In Russia, where I grew up, mathematicians were celebrated. Chess was taken seriously. People were uniformly obsessed with the common cultural rituals, like the morning gymnastics, like every meal starting with soup and proceeding to potatoes.

The man-child – overachieving in his field but apparently unable to demonstrate even the most basic self-care competency – was common.

Is there such a thing as an autistic culture – where the neurotypicals feel subfunctional?

Name-calling and sibling alliances

“Idiot”

“Ugly mug “

“Poo poo Troll Face”

“Fatso”

“Skeletor”

I’d been ignoring the rising volume on the back seat while navigating tricky motorway traffic, but it really wasn’t getting better. Time for parenting.

“Don’t call your brother Fatso”

“He called me Troll Face”

“Don’t call your brother Troll Face”

“Trolls are beautiful creatures. What have you got against trolls??”

“That’s not what he meant. Muuuuum. And why is he…”

Not winning really. I turned the music up extremely loud, drove them home in enforced silence and sat them down to write essays.

One was titled: “Calling my brother an Ugly Mug: What did I expect would happen? What did happen. How did he feel? How did you feel?” . It was returned saying “I expected him to stop namecalling. He called me a troll. We are now both angry”.

The other one was titled: “Calling my brother Idiot: What did I expect would happen? What did happen. How did he feel? How did you feel?”. It was returned with two A4 sides of grievances about sibling alliances and lack of appreciation for efforts made for other people.

Wish me luck sorting that out.

Do you say what you see?

When you ‘see’ something on another child – do you mention it? Does it make a difference if the family are struggling or not?

“She won’t speak to anyone … or even make eye contact” my friend confided in me “she behaves well at school – but when she comes home, her rages are unbelievable”.

So what do I say? I take a breath. They are distressed and I should be brave. I tell them my stories. Explain that I have no qualification to armchair-diagnose – but that our story ended up titled ‘autism’.

My friend listened politely. Very politely. Sympathised with the painful parts of our journey. The conversation was never referred to again.

I wanted to reach out to my friend to not withhold information, but in her eyes I saw a flicker of … lost innocence in our friendship. That she felt judged and watched on her kids behaviour, when before she’d been able to believe it didn’t see because there was nothing to see. When she left, I went straight to see my daughter. My own conscience wasn’t easy. I had to ask her if she minded me sharing her story with people who were strangers to her over coffee morning chit chat.

Did I do the right thing to speak?