Blurry thoughts from another 4am wake up. Changed the clocks again, didn’t they?
As much a I am enjoying my evenings back with pre-8pm sleep (haven’t seen that in a few years), I am not loving second 4am wake up in a row. Then the other “night” discussing where the universe is at 5am. You know because the moon is still up and so we have to look at it and discuss it. At least I could do that with my eyes closed.
It’s not that my struggle is unique. We frequently get 8 hours of sleep straight from little man which is more than other ASD kids I know. However it is unique in effecting me in this household. Little A is wide awake now. His behaviour may suffer when he sleeps less but he doesn’t. He just feels awake. His dad goes back to sleep like a dream although will be up in a few hours for work. Just me who doesn’t like waking early and who doesn’t get to go back to sleep.
Maybe if I change my clock to the old time? Been woken before 5am might feel slightly better.
Here’s a buzzfeed post so you can yawn in solidarity YAWN
*Disclaimer: chose Octonauts at random, don’t particularly have a feeling one way or another about this show.
My little man’s top five interests at the moment are:
1. Level crossings
2. Traffic Lights
4. Washing machines and tumble dryers
5. Light switches
I would be hard pressed to rank these in order because he is becoming a little more flexible and his interest flits between these subjects. He doesn’t just like them, these are the constants of his waking moments. We spend a lot of time watching YouTube videos about these subjects. Guilt-wreaking hours of YouTube time which makes me feel terrible until I motivate him away to use the building blocks and realise we have to talk about these same videos. We may as well watch them.
He uses delayed echolalia a repetition that is common amongst people on the autistic spectrum. I love this video by Autistic Genius that explains it. For Little A it means he has the whole script of these lengthy videos down pat. We have seen a massive progression since May where he is using these scripts to engage with me more and constantly wants to “tell the story” of the video. My job as his parent is to keep an eye on what he is watching and not look deathly bored when he wants to talk about it.
When I tell other people that my son “is a fan of fans” or “loves washing machines” they generally think it’s cute but also laugh nervously. It either seems precocious when he uses technical language (condenser dryers) or it seems like he must know a lot when sometimes he is only repeating. I mean it is different. I am dreading the Summer holidays as I can see it descending into hours of YouTube a day but I think special interests have their place. While I am working hard making the correct level crossing dinging sounds, I will just have to remind myself it’s no duller than acting out Paw Patrol.
Has your child got an interest that you’ve got a bit bored of?
Sometimes with sensory seekers you need to redirect hands that can get up to mischief. Well he’s 4 so maybe it’s just that he’s 4 but there’s been some undesirable behaviour recently. (I’m not going into detail because I want to respect his privacy)
Playtime needs to up its sensory game so here were yesterday’s ideas:
- No mess painting. Splodges of paint on paper inside a ziploc freezer bag. Squidging time!
- New slime. Yes I know you can make it but I bought some cool slime from Tiger. It took a bit of encouragement but he soon let me lay it on his hands and we were away.
- Pouring and squeezing bottles. I poked some holes in a bottle lid (blue tack under the lid and be careful using the knife). I filled a bucket put in cups, a jug and plastic bottles on the table outside. It was a great success. I love messy play that you don’t have to clean up. He was cautious at first but was soon squeezing and spraying. I could even see some bilateral skills which he is working on still.
I’ve got some rainbow beads on order to make the water more colourful and a new Sensory Play Ideas Pinterest board here.
So we are on holiday and receive the call I’ve been hoping for so hard. We have been waiting 16 months but finally our paeditrician has drawn her conclusions about little A’s diagnosis. We will be cutting the break slightly short because frankly if someone offers you a diagnosis, you drop everything. Glad we chose a British staycation.
Have noticed since the call, and my initial tears of relief that we might be able to get answers, my brain has been busily at work.
Without knowing it, I have been holding back. I don’t know why the diagnosis of autistic spectrum disorder will make a difference yet but that part of my brain absorbed in imagining what might be going on has been slightly unburdened and wants to chat away.
Queue me jotting away on my phone throughout the break.
I have also said out loud to my husband that I want fiction writing to be my life. So it seems if nothing else the appointment this week will be the start of us all getting on with our life.
Little A has a lot of anxiety leaving home. He loves going out and about but getting him there is not fun. Complete corridor meltdowns are frequent.
It has been a learning curve to battle this. Lots of visual prompts, sketch pictures and now photos and we are getting there.
To help him and because he loves his books I finally made him a going out book. I’m not sure if it’s officially a social story, more of a list “I like going to the garden, I can take out my toys” including photos. The place is accompanied by something very motivating for him like walking, taking the scooter or visiting the cafe.
It’s working and we have been for an outing at least two out of four at home days for the last few weeks.
As I want to sometimes venture beyond our home town, I have included some of our favourite places like Kew Gardens, the Splash Zone at Chessington and OF COURSE the London Transport Museum. Well he has woken up everyday this week and the first thing he said “want to go a London Transport Museum, going on the train” And good morning to you too son.
Today I finally gave in. I had to wait for a reasonably short tantrum to finish (just 20 minutes) but after that I grabbed our ticket and we’re on our way.
I wouldn’t say it’s a failed tactic. After another day trapped at home yesterday, I appreciate an outing but I’d really hoped to take him next week.
It seems like we are going to have to work on timing and preparation. The level of motivation of somewhere so cool as LTS is far beyond Little As impulse control at the moment.
Haven’t been keeping this blog for a while which is a shame, I love writing. I love my life with little boy. I love looking for the fun and funny things that happen in our days.
However a lot has been going on for Little A. Turns out A, amongst other things, is for Autistic Spectrum Disorder.
The acts of learning about it, reading about it, living it has weighed heavily on us this year. It occurs to me though I should write still because there are many highs and lows but also this is a chance to see the joy in my life with Little A.
If you want show support the National Autistic Society are lighting up a map of supporters in the UK.