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. 

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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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Hanging Out with the Boys

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Hanging out with your friends is something that most young people take for granted. Going out for a drink, watching a movie or cheering your favourite sporting team are all rites of passage on the journey to independence. Young people meet up, hang out and bond together spontaneously without hardly a second thought.

But if you’re a young person with a disability, it’s never quite that simple.

Dan has always had a positive relationship with his peers, with or without disabilities. During primary school, the other kids accepted Dan for who he was, included him in group projects in the classroom and invited him to the occasional birthday party.

Something changed though, when they all moved to high school.

High School is a Totally Different Ball Game

It goes without saying that high school is a totally different ball game to primary school. Having one main class teacher enables a much greater focus on inclusion than the wide range of subject specific teachers that occurs at high school. But something else happens too. Adolescence. 

Adolescence is one of the most trying and challenging times of a young person’s life. As they struggle with figuring out who they are and how to fit in, the kids with disabilities are no longer cool. It’s not that their attitude towards people with disabilities has necessarily changed. It’s just no longer cool to include the boy with autism. While they mostly still had a positive attitude towards Dan, the impetus to include him socially was no longer there.

I’m not blaming anyone here. It’s just what happens. And it leaves a lot of young people with disabilities isolated.

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People with disabilities want the same things that people without disabilities just take for granted – acceptance, friendship and a fulfilling life.

Despite having autism, Dan is very social. He loves being with people. He has a very loving and accepting extended family and he is always included in all family activities, but it’s not the same as having some friends of your own.

This is where the NDIS really comes into its own. You can read about our journey with the NDIS here. 

Prior to the NDIS, for Dan to participate in social activities, I had to tag along. Now that’s okay when you’re young. But having your mum tag along when you’re 20 something is not cool at all. Yet this was the case for many young people with disabilities.

The Boys Group

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With this in mind, families and Yellow Bridge got together this year to create opportunities for a group of young guys with disabilities, like Dan, to be able to socialise together informally. For want of a better name, we currently call it The Boys Group. Over the last few months, the guys have met each month and just hung out together. They’ve had dinner, played laser tag, watched footy, been to the circus and, later in the year, will be attending Shrek the Musical at the Empire Theatre.

Without the NDIS, this would have been impossible.

Without the NDIS, these guys wouldn’t be able to socialise together without having their parents tag along. Now they can hang out together with support workers, who are also young guys, just like them. I can never emphasise enough just how impressed I am with the number of young people I see choosing to work as disability support workers. It really warms the heart and instills pride in our young people.

The NDIS has come in for a bit of criticism of late, and sometimes, rightly so. But, it is early days. It was always going to be an ambitious undertaking to provide the financial support so that people with disabilities can lead independent lives full of meaning and purpose. There were always going to be teething problems and we just need to keep moving forward, working together to make it a reality.

For now, I am just grateful that Dan has the opportunity to be a typical young guy and hang out with the boys.

 

Life with the NDIS

The National Disability Insurance Scheme (NDIS) has been progressively rolled out around Australia over the last few years. It is a scheme designed to provide individuals with disabilities the support they need to live a life that is purposeful, fulfilling and as independent as possible. Here in Toowoomba, the NDIS started at the beginning of this year and it has been an interesting journey for us all.

Prior to the NDIS, Dan had been granted some disability support funding but it was limited. We were able to get Dan into some group activities at Yellow Bridge, but for the most part, wherever I went, Dan went and wherever Dan went, I had to go too. And this is the way it would probably have continued, well forever.

The NDIS has changed Dan’s life

But the NDIS has brought a significant change to Dan’s life, as well as our own. The transition process was definitely quite stressful as we negotiated the paperwork and planning conversation, however his funding package has allowed us to set goals we thought would be a long way off. Dan has continued to participate in the group activities he enjoys so much, like cooking, singing and dancing, bowling and making music. He has also been able to have some one/one support to pursue his favourite activities, like swimming and bush running.

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For so long I have been Dan’s major support and carer. As parents caring for a child with special needs, we don’t stop to think about all the assisting, prompting, supervising and decision making we do. We have done it for so long, it is just a natural part of our life. It can be difficult to even conceive how life could be any different.

A different way of thinking

The NDIS has brought about a change in thinking. Suddenly, I can go places or do things without Dan having to tag along. Dan has the opportunity to participate in activities that regular guys do, without having to have his mother tag along. Over the last month, Dan has gone to a disco, been camping, and had a movies and pizza night with mates – all perfectly normal things – with the help of a support worker, who is probably far cooler than his mother.

It feels a bit strange though. It was really weird when Dan went camping. The house was so quiet. Instead of prompting Dan through every step of the night routine, I could relax, watch TV, read a book, and all the while, Dan was having a ball with his mates at Cressbrook Dam. The next morning I didn’t have to get out of bed at 6am to take Dan to the toilet. I could sleep in. It was so unbelievably quiet.

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On Thursday Dan is going to Dreamworld on the Gold Coast for a Christmas break up with Yellow Bridge. For the first time, I am not going with him. It’s not that I don’t like spending time with Dan. I do. It’s not that I don’t like Dreamworld either. It’s time for me to start stepping back. And the NDIS has allowed me to do that. Dan will go with a support worker and probably have way more fun on the rides than with me. Besides, how many 21 year old young men go to Dreamworld with their mother.

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I am starting to wonder what the future might hold for Dan and us. It will be strange when my days are no longer filled with transporting, prompting, assisting and supervising. At the same time, I look forward to it. Of course I will miss Dan terribly when he is no longer living with us, but it is only right and proper that he have his own life. And that would not be possible without the NDIS.

Special Needs Disco

 

 

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Dan attended his first disco on Saturday night. With Christmas just around the corner, there was a theme of silver or gold, so Dan wore a sparkly silver hat and a silver tie with his black shirt. He looked pretty spiffy, although I’m probably biased.

The disco is a monthly event run by the local Down Syndrome Support Group, but anybody with a physical or intellectual disability can attend. They have been running the discos since 1996 to provide a safe and welcoming environment, where people with disabilities can enjoy the music, have fun with friends and dance the night away. Each disco has a theme so people can dress up and the hall is decorated to fit in with the theme.

Some of Dan’s friends from Yellow Bridge have been attending the discos for quite some time, but this was Dan’s first time. Thanks to his NDIS funding, Dan was able to attend with a support worker and apparently they both had a great time.

 

 

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I’m not surprised. Dan has always loved music. When he graduated from high school in 2014, his dancing was the highlight of the evening at the Year 12 Formal. His classmates formed a large circle, clapping and cheering, while Dan took centre stage in the middle, dancing in his own unique style. This usually involves running around in circles, leaping over obstacles, and clapping his hands high in the air, while his face is lit up with pure joy.

All through Dan’s schooling, I was always impressed at the way his peers just accepted him for who he was, finding ways to include him in group activities and cheering him on, whether he was running down the lane at the athletics carnival, performing on stage in the school musical or stealing the limelight on the dance floor.

A few weeks after the Formal, I met one of the other mums down the street who commented on Dan’s love of music. She said that Dan’s dancing had been the highlight of the evening for her husband. When Dan is singing and dancing, people cannot help but be infected with his effervescent happiness and joy.

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It is so rewarding to see Dan go out and do all the regular things that guys his age do. After all, that is what we all want for our children, to see them happy, enjoying life and participating in the life of the community – just like everyone else.

Saturday night may have been Dan’s first disco, but I’m sure they are going to be a regular event on his social calendar.

I hope that your days are filled with effervescent joy and happiness too.