For Your Listening Pleasure

A photo a day in April for autism acceptance:

It’s easy enough to read about some of what happens in our day to day lives. I’ve been telling you about the noisemaking my little guy likes to engage in, but it’s not the same as experiencing it. So here…for your listening pleasure, is what I listen to day in, day out. At the  moment.

I say at the moment, because I am hoping that this is a ‘phase’. I know he gets a lot of sensory input from making all this noise (me too!!), but it does sound like he’s being hung, drawn & quartered when really, he’s just sitting there enjoying himself.

I have also been telling you that along with the screaming, he has been doing some great talking. During the last few months he has clicked over from being essentially non-verbal, to being verbal. Which is like, you know…a miracle!! So here he is, just a few minutes later.

Now before you start telling me how cruel I am, in this instance I’ve used his ribbon to encourage him in his talking. There are very few things that really motivate my little boy, but his ribbon most definitely does. So I’ve extended the situation to give him more opportunity to use all this beautiful language he is developing. Why the screaming and talking are going hand in hand? I wish I knew. (any suggestions gratefully received).

And last of all, here is our photo for the day. It’s something he did at school. I like it! It’s up on his wall in his bedroom gallery – laminated!

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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.