Hands

Photo a day in april for autism acceptance
In the last few weeks I’ve seen more and more hand biting from my lovely boy. Why? It’s not entirely clear.
From what I’ve read, I need to collect information on when he is doing it, what happens before, during & after. But I can tell you right now he’s doing it all. the. time!!
So often that he has given himself big callouses on his hands. This weekend those callouses have split. This kid has a high pain threshold (obsession with hit things anyone??) So I’m trying to do what I can to care for them while he does what he can to destroy them. So hard to watch.

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TGIF

On Fridays my boy gets to go horse riding. He loves it. He looks forward to it and talks about during the week. He does it through his school (another reason to love this school).
It is an incredibly calm and happy boy who comes home to me on Friday afternoon. Less screaming & noise making, less stimming, more language, more constructive play, sweeter interaction with his brothers, and lots more affection with me.
How good is that? Equine therapy totally rocks! TGIF!!

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Water Mum!

My oldest boy L who is 6 and has autism, has always liked water. A bath was always a good way to calm him down, get him engaged in activities, to connect and have fun.

happy boy in water

happy boy in water

His journey towards language and communication has been a long and winding road. He is not visually motivated (he has a cortical vision impairment) so Makaton (a simple sign language), PECS (picture exchange communication system) and even the iPad (needs no description!) have not been at all interesting to him. He can not interpret a drawing or visual representation of an action or concept.

For a long time he babbled away making speech-like sounds as a baby does. I used to wish for an interpreter. I’m pretty switched on to language development, but there just did not seem to be any meaning or intention associated with the sounds he was making. Still… I encouraged, I read to him, I researched, I did Hanen training, I talked and talked to him, I played endless games of peekaboo and ready, set, …. and always left plenty of time for him to process and respond.

Slowly, slowly he started to use a few words here and there. Snippets of songs would emerge and then fade away, leaving me wondering if he ever really sang them. About a year ago I wrote about a moment we had where I felt like we’d actually had a very brief, but oh so precious first conversation.

The next twelve months were like living in an echo chamber. Echolalia is something many autistic people have as a part of their speech pattern or language development process. Simply put, it is echoing back what has been said. So if you ask a question: do you want an apple? the response will be ‘do you want an apple?’. There are many permutations of this form of communication. Some people can recite the entire dialogue from a movie, but not my boy! Oh no! He would find one word or phrase and stick to it with a passion.

Him: What? Me: What? Him: What? etc.

Him: What? Me: What? Him: What? etc.

His two main words? Mummy (I thank you for that my beautiful boy) and toilet. Yes…toilet was a word that was repeated endlessly throughout the day. Some days it was funny. Other days I felt like I was going crazy. But I was always, always grateful for the fact that he was actually using language. A somewhat limited repertoire, but using actual words.

He’s had an incredible spurt of language development in the last couple of months. It’s gone hand in hand with some absolutely horrific, nerve jarring screaming, screeching and general stimmy noisemaking (see my Yoko Ono post). But he just keeps coming out with new words, new phrases, labels, requests and yes…actual sentences.

Language UP, Frustrations DOWN.

He still reverts to old habits, but when he is reminded that using words is an option, he will give it a go.

So today, when we were driving along this morning, we crossed over one of the main connecting bridges in our beautiful river city and from the back seat I hear ‘Water,  mum’. Me: YES! Water!! Can you see the water? Good boy!!! You are using your words! and lots of effusive praise etc.

Water, Mum!

Water, Mum!

This afternoon, crossing back over the river (different bridge) ‘Water, mum, water!’ Me: WOW! YES! there’s the water AGAIN! blah, blah, blah. Then we crossed over a smaller creek which leads to the river: ‘Water, mum!’ (I think you know what I said).

It’s a real milestone. A genuine, corner turning milestone for this little guy who has faced so many challenges in life already. I’m so very, very excited for him.

Also, and this is big news too, he can now officially jump. YES!

I Am Living With Yoko Ono

Not really. But I might as well be. Seriously, she does a pretty good version of what I have going on from about 5am – 7pm day in, day out.

My darling 6yo has become a noisemaking machine and it’s doing my head in.

You can take it for an hour or so. But as the day rolls on, the volume goes up, the excitement levels escalate. The quite acceptable, gregorian chant-like droning becomes screaching. My one remaining nerve just got squawked into oblivion and … I’ve lost it, again.

It’s stimming. Noisy stimming. The ribbon is flapping and flicking. He’s jumping around like he’s on fire with those whole body Peter Garrett dance moves.

Yep – Yoko Ono + Peter Garrett = my life.

Meanwhile, I’m trying to go to my happy place where sound cannot hurt me. I’m breathing deeply, I’m staring off into the distance, transporting my tired, dehydrated, overworked brain to quieter times.

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But then I snap back to reality, and the boy is happily slurping down the dregs from that double shot espresso I made for myself this morning. Hmmm. There’s something about the smell of coffee that speaks to my sweet boy. At least he is quiet for a moment.

Well. Autism mums are nothing if not lateral thinkers, especially when feeling slightly de-railed. So my short term solution is –

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I would fill my ears with cement but then I couldn’t hear all the fabulous language he is coming out with in between all the horrendous noise. I’ve waited years to hears these words, these phrases. They are sweet little drops of heaven in between the devilish cacophonic soundtrack.

Our Autism

Day 12: Autism Awareness Blogathon

This morning I read the most recent post from ‘Diary of A Mom’ called ‘Our Autism’.  It was heartfelt and sad and protective and ultimately redemptive. A great, thought provoking read.

It got me thinking about what OUR autism was. If I took a snapshot today, it would be different tomorrow and different again a year from now, but still the same as well.

this is not mess

So here’s today’s snapshot of Our Autism:

  • 4am start, dry bed – (woo hoo)
  • stayed in his own bed all night
  • old ribbon (green) has disappeared, substitute (blue) accepted
  • breakfast half eaten
  • mostly keeping his hands to himself unless space invaded
  • ear-splitting screaching for fun sensory input, along with constant ribbon flicking
  • very cuddly, spontaneous kisses
  • play date and lunch with friends (kids on the spectrum plus sibs)
  • cup of tea and cake devoured
  • ate a curry pie for lunch
  • less than 10 incidences of behaviors requiring management throughout the day, including pushing a 2yo down some stairs (she was stopping him from accessing a door). Luckily she was OK and her mum was only too familiar with stuff like this.
  • success in toileting until our regular daily poo emergency. Not too messy.
  • only one change of pants required
  • said what sounded like ‘I want dvd’. I don’t think that’s what he wanted (doesn’t care two hoots for dvd’s) but still…
  • enjoyed playing outside in the beautiful autumn sunshine
  •  no paper ripping today
  • quite a lot of running in circles
  • not too much spitting, or hand biting
  • quite a lot of fun, stimmy noisemaking
  • played with a soft toy dog for about an hour, giving it kisses and keeping it beside him (a first)
  • drank water (yee haa)
  • when called, runs in the opposite direction until the threat of ribbon removal brings him in
  • some good requesting and use of words along with a lot of jargony chatter
  • enjoyed the evening routine: dinner, bath, cuddles, bed
  • asleep by 7.15

All in all, a pretty good day for us.

Hands

A few months ago I read an incredibly moving and revealing post by Julia Bascom at Just Stimming. The post was called Quiet Hands. Reading that post was a revelation to me and it caused quite a stir in the autism community as it went viral. I took a copy of it in to the psychologist at my boy’s early intervention centre AEIOU – she needed to know.

This morning I revisited Julia’s blog and was really interested to read a follow up post that she had written about how she came to write Quiet Hands and the impact of going viral.

She has helped me to understand my boy in a way that no therapist or autism expert could. I’m a better parent because of Quiet Hands. I’m a better person.

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