Worth Its Weight in Gold

For some years now, Alec, our 11 year old son who is non verbal, has become the master of the high-pitched scream. This isn't a distressed scream, it's more of a passing the time of day thing.

He doesn't do it all the time and he doesn't do it every day. It is more of a down time thing. It's like a hobby.

And it's driven us nuts. 

You wouldn't believe the analysis this scream has been subjected to.

Well you would. You've done this sort of thing yourself, I'm sure.

Is it attention seeking?
Is it that he's bored?
Is it a sensory feedback aural thingy?
Is it a verbal feedback thingy?
Is it that he's low on proprioceptive awareness and gets a bit 'high'?

The thing is, as is always the frustration, I can't walk around in Alec's head, so I don't know.
I have a slightly comforting thought that even if I could walk around inside Alec's head, it wouldn't tell me the answer. In Alec's head, the dialogue probably goes like this:

'Toy Story, Toy Story Toy Story Toy Story...we interrupt this programme cos I wanna scream...Toy Story Toy Story Toy Story Toy Story...'

So, I'm not sure my own 11 year old is able to know why his body needs what it needs either. I know this because Bobby, Alec's verbal autistic twin, is equally confused by his knee-jerk reactions. I often get: 'Sorry about that. I seemed to over-react there.'

Anyway, for two years we've put up with on/off screamining that measures 90 decibels on our iPod calculator. We've seen visitors jump out of their skins and then politely smile as if to say 'No, really, it's natural for me to pour my tea all over myself'. I've had some days where I sit in my bedroom breathing deeply, calming myself through the noise, because I know that if I'm less calm then he'll pick up on it.

This week, a weighted collar (known as 'yoke') from Southpaw (www.southpaw.co.uk) landed up in Alec's class. Alec's teacher tried it on him. And he stopped screaming.

This is it:  http://www.southpaw.co.uk/weighted-yoke-412-p.asp


Tempted as I am to hang out the bunting and declare this a Bank Holiday (dedicated to the Patron Saint of Peace and Quiet), interventions sometimes work with Alec only temporarily until he gets used to them.

We've tried weighty things before, to little effect. But this thing is quite a lot heavier than what we've tried. It's not just little beans, it's quite substantial.

At home, I've draped it around his shoulders when he's started screaming - and he's stopped.
I've also put it on his lap and it has a calming effect, too.

It can't be worn all the time - it's rather heavy, he takes it off understandably and anyway, what you wear all the time you adapt to and it loses the effect.

Maybe this is why Alec was always so calm at the hairdresser? She put a weighted collar around him.
Who knew?

If this does help long term, it makes perfect sense. We know that Alec is low on his proprioceptive sense - that is the sense of his own body in the space around him. He is constantly seeking feedback, and most notably has a tendency to dust my sofa for me by flinging himself back on it with great force.

This weight is like two hands pressing down on your shoulders. Maybe he feels more solid, more balanced.

Maybe the need to scream is just to hear the sound of his own vibrations.

So I will keep you posted, but if your little one sounds similar to Alec, talk to an occupational therapist about trying something weighted. Don't go out and spend money just yet, try seeing if something similar seems to make a difference, or borrow one from your school.

With us, this was worth the weight...excuse the pun. And now if you'll excuse me, it's back to the sound of silence..