Breaking the Communication Barrier

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Communication difficulties and autism go hand in hand. It might be misunderstanding facial and body cues, taking things too literally or just physically getting the words out. Dan’s communication difficulties were the first indication that something was different. It was a very frustrating time for all of us. There was a lot of pointing, leading and screaming as Dan tried to communicate his needs and wants. Over the years we trialled a few different communication systems, from Makaton signing and the Picture Exchange Communication System (PECS) to a specific communication device. Each system had its benefits and  disadvantages. 

Makaton is a form of sign language which uses key words. It didn’t require any special equipment apart from hands, however it was the child who did not need to use the signs, Bec, who was the one using them. Dan, the child with the communication difficulties, took some convincing initially to use the signs. Signing was effective but it only worked with people who also knew the signs.

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 PECS involved the use of  picture cards called Compics – Communication Pictures. The exchange part of the system was very important because it taught Dan that communication is a two-way process involving other people. He had to physically take the picture and give it to someone and in a sense, this is what communication is all about, the giving and receiving of messages. It took a little training for Dan to get the idea, but I can still remember the day he first used the cards to initiate a request. I was so excited I felt like running out into the street and telling everyone. PECS was a great system because anyone could read the cards and know what Dan wanted. It did require a laminator, though and metres of velcro dots (I should have bought shares in a velcro company!) and the folder that Dan used to hold the pictures was a little cumbersome to cart around. 

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Then towards the end of primary school we were able to access some funding to get a small hand held communication device. This device used the same kind of Compics as PECS but also had speech. Dan actually learnt some speech by imitating the sentences verbalised by the device. It did work, as long as teachers and aides used it. And this has been a primary issue  – communication systems only work as well as those who know how to use them and actually remember to use them. 

The introduction of iPads, iPhones and other devices has opened up a new world for those on the spectrum. For quite some time I had been keen for Dan to try using an iPad for communication. He is pretty quick at learning how to use technology – you just have to ask his grandmother about that. He kindly updated her apps on her iPad without her knowledge. Well, finally Dan has an iPad and is using it to communicate but it has been a very drawn out and frustrating process. 

a necessary and reasonable support

You would think that a device that enables Dan to communicate would be a support that is both necessary and reasonable. Unfortunately, the NDIS didn’t seem to see it that way. We were able to access funding to trial different types of software. There are a few different ones on the market and we needed to know which one would be right for Dan. One size does not fit all. We eventually settled on a program called Snap+Core First. The next step was actually get an iPad for Dan.  This was something the NDIS would not fund, even though it was going to be specifically used as a communication device. They would fund a specific communication device but not an iPad. I suppose they thought it would be just used for entertainment! So we bought the iPad.

Then we had to get the software. Simply a matter of downloading it from the App store, right? No, not so simple. The NDIS would fund it, but we could only purchase items from NDIS registered providers. Apple was not a NDIS registered provider. Fortunately this was easily solved by purchasing some iTunes cards. Now Dan should be ready to go. 

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No, not quite yet. During the week Dan is out and about in different places with different support workers. How could we be sure the iPad wouldn’t get lost or dropped? We have already had so much trouble with losing hats – four hats in one month! And before that, it was losing his wallet – at least four times too. Sometimes I do wonder what is going through some support workers heads when they are with Dan. So a better case and shoulder strap would be required but this had to be ordered from a disability supplier. Now this was something the NDIS would fund, but for some bizarre reason they would only forward the money to purchase the case in dribs and drabs. By the time we finally got the full amount, which was not a huge amount to start with, the price had gone up! 

More than a year after we completed the software trial… we have now got the iPad, the software and the new case and Dan has started taking it with him every day to Yellow Bridge. Dan has been very quick to learn to use it. He is able to construct sentences, request items, ask questions and make comments. He even knows how to add new pictures and words to the categories and how to use the search function when he can’t find the word he wants. He also loves using the camera to take photos of the places he has been. He likes this so much we have multiple copies of everything! I think he just likes to stand there and keep pushing the button! Dan still needs to be encouraged to get it out and use it – initiation has always been a challenge – but it has opened up a whole new world of possibilities for Dan.

Now we just have to train the workers…Version 2

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Dan the Mailman

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In this digital age, an actual letter in the letterbox is a rare occurrence. Most of our mail is announced with a ping in the inbox rather than the roar of a motorbike. Yet every day we still trek out to the letterbox, just in case there is something to retrieve. However, apart from the occasional bill that still comes by snail mail,  it seems that Birthdays and Christmas are the only high points in the mail delivery year.

Dan has always liked opening the mail. Which isn’t a problem, unless it is mail I am yet to post. He likes opening parcels even better (don’t we all!). One time we caught him opening the gifts at his cousin’s 21st birthday party. Fortunately she was very kind hearted and didn’t seem to mind. But it did mean that at Christmas time we could only put the gifts under the Christmas tree just before we opened them – otherwise there would have been nothing to open on Christmas Day.

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Dan likes posting things too. When he was very young, he liked to post all sorts of things – paper, lego, apple cores – into the combustion heater (when it wasn’t going, of course!), so we would always have to check very carefully before lighting it. Even today he still likes to post the letters through the slot of the big red mailbox whenever we do go to the post office. 

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At Yellow Bridge, Dan is part of a small group that does a mail run. Every morning they go to the main post office in Toowoomba, collect the mail for a number of businesses around town and sort it into bags before going around to deliver it to the businesses. I think it is a great initiative which shows businesses and employers that people with disabilities are very capable. Instead of hiding them away in a sheltered workshop, they are out in the community providing a valued service.

One day when I was doing the grocery shopping with Dan, the lady in front of me at the check out recognised Dan because he delivers the mail to her workplace. She said he was always very quiet when they delivered the mail. Quiet? Doesn’t sound like Dan at all, but it was nice to hear people recognise the job they are doing.

Dan can even play mailman at home.

Speech therapy has been an integral part of Dan’s intervention even before he was diagnosed with autism. As an ongoing support, it’s important to find ways of making it fun and the therapists always do an excellent job of using games to practise communication skills.  One of Dan’s therapists had this really cool mailbox, where Dan could post a card in the top and it would pop out the bottom. There was a myriad of ways this activity could be used, from practising sight words, matching words and pictures, or constructing sentences. Dan really enjoyed it, so I thought it would be a good idea to have one at home.

Now we could have made a mailbox with a cardboard box – but that wouldn’t have lasted very long.  However, I remembered seeing a mailbox craft kit at our local Kaisercraft store, so we bought the kit, collected some supplies and got to work. 

 

And here it is – Dan’s mailbox…

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The cards don’t pop out the bottom, but Dan just opens the lid at the top and pulls them out – just like a real letterbox. We use it to play all sorts of games to help Dan develop his communication skills.

Despite all the whizz bang things we can do with technology, there is still much pleasure to be had with a simple red mailbox.

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I Love a Good Story

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In the Age of Technology there are champions and nay-sayers. Some praise the wonderful advantages of technology in the modern life, while others voice concerns about failing eyesight, bad posture and poor social and communication skills. I’m inclined to think that both sides have a point. Technology is a major part of our lives today and it is quite easy for it to become the master rather than the tool. How often do we hear the story about people working in the same room, eyes glued to their screens, e-mailing or texting each other, rather than actually getting off their seat and walking just a few steps to talk to someone in person. On the other hand, technology can be a great tool for sourcing information, locating services and connecting people. Especially when you move to a new place.

A few months ago I needed to find a new dentist. In the old days I would have just flicked through the yellow pages, picked a number out and hoped for the best. Not anymore. Now, we just Google it!  I scanned through the list, checked out a few websites, and made an appointment. All without leaving the comfort of my own computer screen.  It wasn’t  just about efficiency and time-saving. I wasn’t just finding a good dentist for me – I was also looking for a good dentist for Dan.

A good story can be the beginning of a long-lasting relationship

Anybody with a child on the spectrum knows how difficult trips to the doctor, hairdresser or dentist can be. They can be an absolute nightmare, so it’s very important to find the right person. A good website doesn’t just give me the facts about a service provider: it tells me a story about them – their values, their experience, their goals. You don’t get second chances with Dan. I have to be the guinea pig and check them out first. A good story can lead to a long-lasting relationship.

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I love a good story. No doubt that explains my ever expanding book and DVD collection. Stories have a way of connecting people over time, space, and the tyranny of distance. Here too, like never before, technology connects readers with writers, and readers with other readers, and so on. I must admit that I have been somewhat slow in my uptake of the digital world. Perhaps that’s not such a bad thing. However, as an avid reader, I like to meet other avid readers too, and so I have joined the Goodreads community. And it’s funny how joining an online community has actually led to the discovery of a local book club that meets in real life.

There is nothing quite like meeting people face to face

Through my study at USQ, I have slowly become more comfortable with participating in online forums, and with students across Australia and the world, it is the only way to foster a learning community. But still, there is nothing quite like meeting people face to face. Conversation flows more naturally, especially with a glass of good red wine, and there is an immediacy of response, an ebb and flow in the natural rhythm of conversation that is difficult to achieve online. It can be hard to meet new people when you’re the newbie in town, so it is quite exciting to discover a group of like-minded people who enjoy devouring books as much as I do.

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I think it’s important that we don’t throw the good out with the bad. We do need to ensure we find a good balance in the way we use technology in our lives but we can also savour the good stories that make us laugh, inspire hope and help us connect with real people.