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.

 

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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.