Helping my autistic children communicate over Christmas

Christmas brings with it a change of routine, sensory explosions and a whole host of other things that can be overwhelming for any kids but particularly those with autism.  Perhaps more than other times, it's really important that I'm able to understand my kids, so I need to make it easy for them to communicate.

Without an ASD diagnosis, we would not

It appears we are some of the lucky ones. Our boys were both diagnosed with ASD by the time they were four years old and they both received appropriate support from services, organisations and in their different school settings.

Never taught how to break the ice, in a different key

Is it possible that people with autism are still locked away?  I simply couldn't imagine being parted from my children or them being hidden from society because they happen to be autistic.  This is undoubtedly what used to happen as reported in The Daily Telegraph this Saturday by Kate Chisholm whilst reviewing 'In a Different Key' by John Donvan and Caren Zucker. 

As I read the review I was, as I have been many times, so relieved to be living in a time and country where my children are not taken to state-run institutions where they will be pumped full of various narcotics in an attempt to 'normalise' or placate their behaviour.

One of the keys parts of the review focused on the blame put on mothers for their children being autistic. According to the review, an article in Times Magazine in April 1948 ran an article that suggested these (my) 'frosted children' became so because their 'refrigerator  mothers' failed to bond with them.  I suspect it is simply that the mothers were never given the tools to break through the ice.

I remember having a feeling of disappointment after my first son had his first speech and language therapy session.  They hadn't done or said anything?  In fact all the therapist seemed to do was show me specific ways of playing with my darling boy.  As if I didn't spend all day sometimes trying to play with him.  She had pointed out a few things she was doing and gave notes to me on them afterwards.

Of course I realised that I was being given strategies to do therapy at home.  It was simple things like encouraging gap filling, encouraging requesting, encouraging eye contact and all just by changing the way I spoke and moved. Our second child needed more assistance in the form of my learning Makaton sign language and him using a picture exchange system to communicate. In both occasions, I was given the strategies and equipment to help my 'frosted children', indeed, I as given the tools to break the ice and help them access the world around them.

I'm so thankful that attitudes and 'healthcare' described were not frozen in time.  Speech and language therapy along with many other types of therapy such as occupational therapy is not simply dispensed at an institution or health centre.  Certainly for us, it's a way of expanding my sons horizons and is delivered on a daily basis with a mother's love and compassion.  And when there is a breakthrough, the results simply melt my heart.

Links
Our Blog - Why ALL forms of communication are awesome, it's not all about talking
Our Blog - Comments from Steve Silberman on Neurotribes

External
The Telegraph - In a Different Key

Why ALL forms of communication are awesome in autism

"Does he have any more words yet?"

"Does he talk, does he say anything at all?"

A mum at a special needs playgroup once said to me, "I'm just desperate to hear her voice and hear her say mummy. Can you imagine not hearing that from one of your kids?"

Of course, I can.

However, I believe this mum made a basic error in her comment. True, her daughter doesn't talk, it doesn't necessarily follow that she doesn't have a voice.

Our son David has autism and no, he doesn't say any actual words. He uses makaton sign language most of the time. He sometimes uses PECS which is a series of picture cards to form sentences and he often vocalises with both of these. Without sign or PECS it would be extremely difficult for anyone to understand what he was saying. But trust me, my son has a voice.

He tells me when he wants something and tells me when he doesn't. He tells me when he's having fun and when he's distressed. And he's more likely to sign 'daddy' than 'mummy'. After all, why request me? I'm always here.

About a year ago David's signing vocabulary started to expand far beyond the 20 or so words he knew that mostly related to asking for his favourite food items. He started signing 'swing' in the garden and 'house' when it was time for home.

One afternoon I was retrieving him from the car after returning home from his nursery. He held me tight as I went to release him from the car seat. I took the opportunity for a hug and said 'hug' as I squeezed him awkwardly. I went to get him out for a second time and he grabbed me again. This time I stood back and said and signed 'hug'. Then I asked him what he wanted.

For the first time, David signed hug. I was close to tears. I praised him and he giggled, juggling around as I nearly crushed him. We continued signing and hugging for at least two minutes if not more. Soon, my daughter who was sat on the other side of the seat started asking for a cuddle too so we went into the house.

David may not say many words but we are working with him to help him say more. We have a great speech and language therapist that works with him and us. He will 'fit in' more if he talks, but even when he is older he could be like the other 25% of people with autism who are non verbal. Fitting in is not what we are after, unless that's what he indicts he wants of course.  Talking is not the be all and end all. He expresses his opinions and often understands situations. That's not even considering the progress he's made with his receptive language (the language he hears) such as following instructions.

I think David has a fine voice. Did you know a baby has to hear hundreds of repetitions of words to pick up them up. Everywhere they go, babies are listening and adding to their words lists. Imagine though that the baby didn't hear any of those words because they weren't engaged with them. I think David's had to pick up sign via a much shorter number of repetitions, just like hug above, because it's not happening everywhere.

No one signs at the shops, in the playground nor most other places we go. We don't even all sign to each other in the house, but that hasn't stopped him. And overall his I was far more delighted with his desire to sign and have a hug that I am about his perhaps odd attempt to say mummy. Even if he was only asking for a squeeze to help fill his sensory needs - he's getting what he needs.  And that or showing affection seems a fantastic way for him to use his voice if you ask me.

Bauble babbles: Use their choice of communication

David uses both PECS and Makaton to communicate but he's not forced to use either of them instead of the other. Some people may use programmes like Proloquo2go or a talker device too.

If David manages to communicate that he wants to watch The Polar Express using key words with either his PECS or his Makaton sign I'm not going to force him to repeat it with the other device. This kind of exercise will only confuse him, no one else has to repeat themselves? I've found that if David has communicated to me asking him to repeat this only irritates him and causes him stress.  And despite my preference for Makaton, if he chooses PECS that's fine too.  Imagine the upset on Christmas Day if I asked him to request a present again because he used his PECS book instead of his Makaton?  I don't think so. The important thing is he communicates as best he can.... and that he gets another Christmas present... and to watch The Polar Express of course!

Yesterday - Modelling language 
Monday - more ways to help us communicate

Links
The Makaton Charity
Communication Matters - PECS

Notes: Thanks for reading Baubley babbles, my notes on helping my family talk over Christmas. My sons are both on the autistic spectrum and we have a two year old daughter. Our son, David is five years old and uses a variety of Augmented and Alternative Communication (AAC) to talk. Every school day till school restarts I'll post a one thing I'll be keeping in mind to help us all communicate over the festive holidays. Maybe some things will be of interest to you too.

Baubley babbles: Introduce and use festive vocabulary

Our Baubley babbles are my notes on helping my family communicate over Christmas.

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Conversing about broken gingerbread men

We don't really do Halloween in our house.  If you've read 'Rocky reality: Autism and imagination' then you would understand at least one good reason why trick or treating is not a great idea. No, the closest I'll come is decapitating and chopping the legs off gingerbread men for David.

David is a very cunning little boy.  If you didn't know any better, you'd think that he didn't know very much at all.  After all, if you ask him to point to his head, he'll probably ignore you and continue playing with his cars.  But that doesn't mean he doesn't know what you are saying or know where his head is.

There are various reasons why any child, but particularly ones like David who have ASD, won't follow directions.  They may lack the skills to carry out certain tasks, have difficulty processing words or quite often in David's case, lack motivation.  As following instructions is fairly important in terms of functioning in society, being able to do as you are asked is considered a life skill. 

Getting a child with autism to learn this can be difficult.  Some people advocate Applied Behavior Analysis (ABA) programmes or methods for children with autism.  We have found that David responds well to motivation and in this case, gingerbread.

Truth is I'm not chopping up gingerbread men as some strange Halloween ritual but as a way of interacting with David.  It wasn't long after we had gingerbread men in the house that David learned he could use Makaton and his single syllable words to request a 'biscuit man'.  Using PECS have really helped David with sentence formation too.  A few days ago when I pulled out a broken one I offered him a pair of gingerbread legs and he signed 'I want' and pointed to his legs. 

Offer David any other broken biscuit and you are likely to get a crying child. The biscuit is not right. It's broken, it's just wrong. But this seems different.  And it's wonderful that David is able to recognise the parts of a gingerbread man. It means he's using his imagination.  

And it's always good to find another thing that David will communicate with us about. So mostly, I'm going to spend Halloween offering a few legs, arms, heads and possibly bellies to David in exchange for him signing which he wants. I might even munch a few myself. 

External Links included
The Makaton Charity Homepage - Makaton uses signs and symbols to help people communicate. 
Communication Matters - PECS (Picture Exchange Comunication System)