NDIS Review 2019

The last few weeks have been quite stressful as we finally moved into our new house and completed our third plan review with the NDIS. Moving house is surely one of the top ten stressful events in life. You would think that after 18 previous moves, I would have this down pat. Nope. It was just as chaotic and stressful as ever, and after weeks of packing, moving and unpacking countless boxes, I have been feeling quite exhausted. I have been so tired I have barely done any reading and to top that off we are currently in a period of slow internet. The first week after our move the internet service was perfectly fine. But as a result of changes to the fixed wireless service, which I sincerely hope are temporary, it has almost ground to a halt. The speed is painfully slow. Some days we struggle to even read a blog post, let alone write one. Just as well Bec and I are on a study break over Christmas and New Year.

In the midst of all the packing and moving, we also had to contend with Dan’s NDIS review – another stressful event. At this point we are still waiting to see the outcome of that review and Dan’s new plan for the coming year. It is a particularly anxious time as we never know when the new plan will start until it does. This is one of my particular grievances about the implementation of the NDIS. Dan’s plans have never started and finished on the same date every year. Each time, the new plan has started early, meaning that Dan loses time and funding still available in the previous plan. It’s a very sneaky way of trying to save money which actually deprives clients of funding. It’s also an anxious time because you never know if the NDIA will consider Dan’s goals and requests for support as reasonable and necessary. To support Dan’s communication needs we are hoping for a considerable increase, but we won’t know until we see the plan.

Despite my grievances, and there are a few, the National Disability Insurance Scheme (NDIS) is a social change that is well overdue and it is providing support for Australians living with disability. It is an ambitious undertaking and I don’t think people realised how many people with disabilities there actually were out there in the community being cared for by their families. There were many senior aged people still caring for their middle-aged disabled children. Many of these had probably fallen through the cracks and were receiving very little support, if any.

Dan was able to join the NDIS when the scheme rolled out in Toowoomba in 2017 so we are approaching the end of our third year. To be honest, it has been quite stressful and has created a lot of extra work for me, but in the long run, we hope that it will create a life for Dan so that we won’t need to worry (at least not as much) about what happens when we are no longer around to care for and advocate for Dan. At this stage, I feel there is still a long way to go before families can feel confident about their family member’s future and welfare.

Our approach to the NDIS has been to focus first on Dan’s life Mon to Fri, then slowly extend that. When trying to visualise a life for Dan I try to think about what the typical 23 year old young man does. He is either studying or working (or looking for work). So first of all, we focused on creating a fulfilling and purposeful weekly schedule for Mon to Fri. With Dan’s NDIS funding, we have been able to purchase support time from a disability support provider. This is a mixture of group support and one to one support. In the group support, Dan joins other young people with disabilities and does peer- appropriate activities, like bowling, going to the gym, cooking pizzas. During his one to one time, Dan has the opportunity to do things he is personally interested in, like swimming and bushwalking.

Then we expanded his support to include social activities on the weekends and respite either at home or in the community. Dan and some of his mates get together for a boys group that meets monthly for social activities. Dan has also had some one to one support on the weekends to do thing he likes and give us time off. One of the downsides though, is the lack of spontaneity. People without disabilities are able to make plans on the spur of the moment and just do it. It’s not that easy for Dan. A social activity for the boys group requires weeks of planning and support needs to be rostered well in advance. Even for us, if we wish to have some respite, we have to plan it well in advance. I can’t do a girls night out on the spur of the moment. I would need to have at least a months notice in advance so I can organise support for Dan. The NDIS may provide the funding, but a lot of planning, decision-making and budgeting is required by families to make it all work. Who will do this when we are not around?

For the coming year, communication remains a top goal for Dan. Many people probably take their ability to communicate for granted. Imagine how difficult your life would be if you were not able to communicate your basic life needs, let alone your desire for social and leisure activities. I often describe Dan as non-verbal. It’s not strictly true, but it’s often the easiest way to describe Dan to people who don’t know him. Dan can say quite a lot of words – just not together, in one sentence. He can answer a question, yes or no, but he tends to answer every question with yes, so there is some doubt about the accuracy of the answer. Dan also loves to sing. He can sing whole songs but cannot have a conversation or even request something without assistance. Of course, we have learnt to understand Dan’s cues and we know what he likes or needs. But people who don’t know Dan well have no idea. Good communication is essential for everybody, especially people with disabilities who are dependent on the support of others for everyday life.

Last year we were able to use Dan’s funding to purchase some communication software. It was an interesting experience that highlighted the need to have Dan’s plan managed by a Plan Manager rather than the NDIS. Initially it was good to have it managed by the NDIS while we were getting the hang of things. And it worked well except for one thing. When the NDIS manages the plan, you can only use providers who are registered with the NDIS. For the most part, this isn’t a problem. I have always been careful about which providers we select for Dan. I want to make sure they are experienced and know what they are doing. There has been such a flood of providers start up since the NDIS, and sadly, some of them are just in it for the money. This year we used a Plan Manager and it has provided more flexibility, especially when purchasing items for Dan’s use. It also allows us to engage a therapist or service provider who may not be registered with the NDIS. Some service providers are finding working with the NDIS to be quite onerous and are choosing to leave the scheme. If this were to happen to one of Dan’s service providers in the future, Dan would still be able to continue with the people who know him and with whom we have developed a good working relationship.

So now we are just playing the waiting game. We have had the meeting, answered all the questions, talked about Dan’s goals for the coming year and the level of support he will need. The service providers have submitted their reports and fortunately we are all on the same page about Dan’s need for higher levels of support. Fingers crossed it will be a good outcome. If not, we will be requesting a review. And unfortunately, that can take up to nine months. I would like to feel confident about the new plan – but I’m not. I’ve met many parents in the same situation and heard too many stories, so I know you have to fight for everything. Who will do the fighting when we are no longer around?

 

No More Plates

Just to be clear, we have not decided to dispense with using dinner plates but have finally come to the end of attaching Provisional Driving plates onto the car. After four years of attaching yellow learner plates, then red provisional plates and finally green provisional plates, Bec has officially come off her Ps. So no more plates on the car. Hooray!

Learning to Drive in Queensland

Once Bec turned 16, she was able to sit a written test about road rules to obtain her learners. She had to be on her learners for at least a year, log a minimum of 100 hours of driving experience, including 10 hours of night driving, and display the yellow learner plates on the car whenever she was driving.

At this time, we were still living in a small town out west, where it takes about five minutes to drive from one side of town to the other, so it was quite a challenge to log 100 hours. Fortunately, we took regular trips to Toowoomba and an occasional trip to Brisbane, as well as one road trip down to South Australia to visit family, so she eventually accumulated the 90 hours of day driving. The night hours were a bit more difficult. We hardly went anywhere at night, so when we moved to Toowoomba, we would deliberately go for a night drive. I would check out the Toowoomba map, chart out a route that would take us all over town, and off we would go.

After a year and 100 hours were logged, Bec could sit her driving test. I was quite nervous about how she would go but fortunately she had a lovely examiner who cracked some jokes and helped her to relax. After passing the test on her first attempt, Bec then had to spend a year on a provisional license with a red P plate. At the end of that year, she had to pass an online hazards test and then it was onto the green P plates. It was supposed to be only one year on the green Ps, but of course the rules were changed and she had to do two years on the green P plates. There were some restrictions for P plate drivers, mostly about who could be in the car late at night, but this never really affected Bec.

And now finally that is all over and we are both relieved. No more shuffling plates on and off the car. So often I would go out in the morning to take Dan to Yellow Bridge- oh, have to take the plates off. Sometimes if we were all going somewhere together, Bec would ask if she could drive – oh, have to put the plates on. I am so glad that’s all finished. I think it is an excellent system for preparing young drivers. Ensuring that everybody is safe on the roads is extremely important – the road toll is bad enough as it is.

I am also thankful that I only had one child to teach to drive.  I really feel for those parents who have three, four or more children. Teaching a teenager to drive is a very stressful job. Bec is a very responsible driver, but in those early months the brake pedal on the front passenger side didn’t seem to work at all! Funny how we push our foot to the floor, even though we know there is no brake there at all. Just habit, or panic, I guess.

People are sometimes surprised when I say that Dan will never be able to drive. I’m sure he’d love to. He loves driving the dodgems at the show and the driving games on the Wii, but that’s as close to driving a car as he’s ever going to get. He probably gets a little frustrated when he sees Bec hopping in the driver seat and he never gets to have a go.  It’s not that Dan couldn’t learn how to drive a car. I think he’d be able to steer the car quite well. He’d probably be ok driving the ute around a paddock, but not on the road.

Dan would never pass the learners test to start with. While he knows some basic rules – red means stop, green means go – he has enough trouble crossing the road safely. Dan’s autism means that he can be very fixed in his routines and when he gets in “the zone”, he just goes. More importantly though, he lacks the ability to make those split-second decisions when the situation or routine changes or somebody else does the wrong thing. If the traffic light was green, he’d go. Regardless. Besides, having seen his driving technique on the Wii, I think it would be a lot safer for everyone if he stayed in the passenger seat!

People have suggested that driverless cars might provide an option for people with disabilities in the future. Maybe, but I don’t think I’d be willing to give them a go. I don’t fancy being in a car which drives itself. For now, Dan will just have to get used to being in the passenger seat and driving on the Wii and at the show. I’m just relieved that I can  hop in the car and not have to worry about taking the plates off. 

Hanging Out with the Boys

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.

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

 

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.

 

The Carer’s Road

Every day is a journey,

and the journey itself is home.

Matsuo Basho

 From the moment we are born, a path stretches out before us. We don’t know where it will lead. We just begin, one step at a time.

Sometimes the way is a smooth, well-worn path and at other times it feels like we are cutting a path through rugged terrain. The road meanders, curving left and right, every turn revealing a new mystery or challenge. Sometimes we coast down hill only to struggle to reach the top of the next rise.

The carer’s road is a life long journey. We didn’t set out to be carers, but here we are, on a road that has contained curves, u-turns and uphill challenges. As the years go by, though, it can feel like we are caught on a treadmill. The days run into each other, a monotonous streak of repetition and predictability, with no reprieve in sight.

Life with Dan can be a bit like that. Every morning the routine is the same – the same steps, the same prompts, the same responses. Dan likes routine. Routine is good. It keeps everything ticking along like clockwork. Sudden changes in routine can cause all sorts of trouble when you’re on the spectrum. But it does feel like you will keep on repeating the same day, forever.

When you are a carer, it can be tempting to feel that your life is on hold, that you are stuck on the bench watching, while life is passing you by. You see others moving on to the next stage in their life, breaking through glass ceilings, travelling to far-flung places, seeing the sights of the world and climbing Mount Everest. Meanwhile, we are still giving the same round the clock care and supervision. We can feel that life is out there somewhere, in the distance, for others to experience, and always out of our reach.

But this is not true.

Sure, the carer’s road looks different. Different can be good. It is filled with everyday miracles, outstanding achievements and more spills and thrills than a rollercoaster.

I don’t need to break through glass ceilings. I am quite regularly sweeping up broken glass after Dan has precariously balanced the crockery on the edge of the shelf.

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I don’t need to see the leaning tower of Pisa. Over the years we have seen many of the towers of Dan, some leaning, some standing perfectly straight, each one a master of architecture.

I don’t need to climb Mount Everest. After many years, we finally made it to the top of the toilet training mountain. It was a long haul but the achievement was exhilarating.

Life is not passing us by.

This is our life and we are living it every day.

 

Inclusion – Side by Side

Like many other proud Australians, our eyes have been glued to the television screen to cheer on our athletes competing at the 21st Commonwealth Games, here in Queensland, on the Gold Coast. The Commonwealth Games have a long history and have many things in common with the Olympic Games. Since the first games in 1930, they have been held every four years, (except during WWII) to spread goodwill and understanding throughout the Commonwealth of Nations. This is the fifth time Australia has hosted the Commonwealth Games and we are one of only six nations that have attended every games. And, not to boast, we do top the leader board for winning the most medals. As a proud sporting nation, the Commonwealth Games are pretty exciting for us.

The Opening Ceremony on Wednesday night had a strong focus on Australian Indigenous culture as well as our relaxed Australian beach culture. We really enjoyed it all – the Indigenous dancers, the didgeridoo orchestra and the towel change rooms (after all, we all need a little help from our friends sometimes). We were particularly moved by the raising of the Australian flag and the Aboriginal flag together – side by side.

The parade of athletes began with Scotland, who hosted the last games in Glasgow, followed by the rest of the teams region by region – Europe, Africa, the Americas, Asia, the Caribbean, and Oceania. There are 53 nations in the Commonwealth, but dependent territories are able to compete under their own flags, making a total of 71 teams. Of course the loudest cheer was saved for the Australian team, almost 500 able-bodied and para-athletes, walking out together – side by side.

The Commonwealth Games is not only the largest fully-inclusive international multi-sport games, it was also the first. Since 2002 the Commonwealth Games has been an integrated competition. The athletes march side by side in one national team. The events are scheduled together, which means if you are at the pool, you see both able-bodied swimmers and para-swimmers compete and receive their medals. And all medals are counted in the nation’s total.

For those of us sitting at home watching the Commonwealth Games, we can see the able-bodied and the para-events, side by side. We can share in the highs and the lows of all the athletes, side by side. The names of all athletes, able-bodied and para, become house-hold names. They are all  representing their country and doing us proud, side by side – as it should be.

Now we enjoy watching the Olympics, both Summer and Winter, too. We especially enjoy watching the Paralympics. Not because we think para-athletes are somehow more super human or more amazing, but because they are great role models for overcoming challenges and embracing life, no matter what curve balls it might throw at you. But we can’t help but notice the great difference in media coverage between the Olympics and the Paralympics.

 A local issue?

Now this might just be a local issue. Maybe it just reflects the attitudes toward people with disabilities in Australia. Or maybe it shows that the Australian media still has a long way to go towards equal representation. Are we alone in our frustration or is this a common experience world wide?

We have certainly come a long way in creating a more inclusive society. Not so long ago, people with disabilities were shut away from the world, excluded from education, the community, from life – they were invisible. Today people with and without disabilities learn together side by side, work together side by side, live together in the community side by side, and in sporting events like the Commonwealth Games, march and compete, side by side – as it should be.

But we still have much further to go

What if parents of children with disabilities didn’t have to fight for appropriate support? What if people with disabilities had better access to public transport, education and work opportunities? What if Olympic and Paralympic athletes marched and competed side by side in a fully integrated, fully inclusive Olympic Games? What if we could see equal representation across the whole of society?

 

All people learning, living and playing together, side by side. That’s inclusion.

Recovering the Christmas Spirit

Just one week ago I would have said, “Four days to Christmas and I’m already over it!”

It was hot. The roads and shopping malls were packed and the list of all the things I was supposed to do to ensure everybody had a Merry Christmas was growing by the minute. If this was Christmas, the most magical time of the year, then I was over it. Even though the Christmas Tree stood in the corner, beautifully decorated by Bec, and the Christmas Carols were reverberating through the house, I could not summon an ounce of excitement, or anything remotely like joy, peace or love.

It didn’t used to be this way

I remember the excitement and magic of Christmas when I was a child: counting down the days, wondering what surprise would be waiting for me under the Christmas Tree, watching John Martin’s Christmas Pageant wind its way through the city streets of Adelaide. I remember the taste of Grandma’s Christmas Pudding, the joy of playing with far-flung cousins, and the mystery of why the adults preferred to sleep the afternoon away.

What happened? How did Christmas cease to be magical? When did it become a focal point for stress and panic, and a symbol of greed, waste and over consumption?

It seems I am not alone

In the weeks leading up to Christmas, I came across quite a few posts and articles advocating a simpler approach to celebrating Christmas. In our house we had already been wondering about some of the so-called Christmas traditions and questioning why we do the things we do and who says we should do them. I mean, do we even like turkey?

Sometimes it feels like we get so overwhelmed with the traditions of a celebration (not just Christmas, but any celebration) that the whole reason we are celebrating in the first place, is forgotten. Perhaps we need to take a simpler approach to celebrations. We could spend less, eat less, stress less and instead, celebrate the reason more.

As it turned out, I did recover my Christmas Spirit. And it wasn’t from spending more or doing more but by stepping back and enjoying the things that are right in front of me.

So here are my three tips for recovering the Spirit of Christmas.

 Let the kids do the cooking

One of the best things about having young adult children is that they can start to take over the domestic tasks of family celebrations. I actually don’t like cooking much at all. It seems like a waste of time slaving over a hot stove just to have it all wolfed down in five minutes. Lucky for me, Dan and Bec love cooking, well cooking the sweet things, that is. So, I do the mains, Bec does the desserts. It’s a good arrangement. Mind you, nobody waxes lyrical about a potato salad in the way they do over a fancy pavlova or layered trifle. You can see Bec’s contributions below.

And Dan is not to be left out either. Since the group activities at Yellow Bridge have finished for the year, he has been doing some cooking with his support time. Check out his Gingerbread Biscuits and White Christmas.

Okay, so the White Christmas fell apart a little, but it tastes much better in big chunks than little pieces.

 Focus on one tradition that has meaning for you

Since we moved to Toowoomba, we have been living in two houses; one here, and one back out west. This means that some of our good stuff has been back at the other house. It’s been three years since I’ve had my Nativity set out and I didn’t realise how meaningful that tradition was, until I retrieved it this year. It was quite surprising how the ritual of unpacking each piece and placing it in the scene carved out a special quiet time for reflection.

There are many traditions we could probably do without, but you just need one to rediscover the joy and magic of Christmas.

 Celebrate time together

As almost empty nesters, daily life with Dan and Bec is slowly drawing to a close. Next year Bec leaves home to begin study in Brisbane. Within the next few years we hope Dan will make the transition into supported accommodation. This is probably our last Christmas with them both still living at home.

Family life with autism is always a bit different. Even though Dan is the eldest, he is the older-younger child. From a very young age, Bec has been the younger-older child. As a two-year old she was reminded to look after Dan at the playground, even though he was nearly two years older. It’s not easy for a child to grow up with a sibling who has a disability. There are just some things that peers can never understand unless they are walking the same journey.

 

For the most part, Dan and Bec get along really well. While Bec often needs time on her own, she shows generosity and patience with Dan, prepared to sit down and play UNO, help him play the Wii or kick the soccer ball around.

 

Watching them play a game together reminded me of the need to celebrate whatever time we have together. We never know when it may come to an end.

 

And what was under the Christmas Tree?

 

I hope your Christmas was filled with the love of family, the joy of meaningful traditions and the peace of simplicity.

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.

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.

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.

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

 

 

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.

 

 

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.

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.

Dan Turns 21

Three cakes. That’s how you celebrate turning 21 – Dan style.

It’s a momentous event when your firstborn turns 21. Dan knows when his birthday is. He can’t tell me in words but he can find it on the calendar. He has this unique ability to know exactly what day and date it is. Dan’s grandmother has a perpetual calendar and sometimes she forgets to turn over the pages. It doesn’t matter how many days or weeks it has been, Dan will turn over the pages until it’s on the right date. He is always right.

In the weeks leading up to Dan’s birthday, we prepared him for the event. How old will you be? This question is usually met with silence, so then we ask … what number will you be? After a few times, he learned that the answer was a very loud 21. I’m not sure if he quite understood the traditional significance of turning 21, but he knew it was a big deal.

The first 21st celebration was in Adelaide. Since my side of the family are spread out across Australia, it is difficult for us all to get together in the same place, at the same time. As we were gathering in Adelaide for my Dad’s 80th birthday, it made sense to celebrate Dan’s birthday too. His first birthday cake was a lovely rainbow sponge. I was amazed at how light and moist it was, even with all the layers of colour. Dan even had a few early birthday presents: a puzzle mat and a 1000 piece puzzle of a lawnmower race, which was a bit like a Where’s Wally picture – thanks Uncle Dave!

Back in Toowoomba, I organised a cake for Dan to have with his friends at Yellow Bridge on his birthday. They were all very excited about Dan’s birthday. I think birthdays are a special celebration at Yellow Bridge. After all, it is not every day that you get to have cake. This time Dan had a large butter cake decorated with blue and silver stars. One of Dan’s friends has an amazing memory for birthdays. He only has to ask you once and he will remember your birthday and take great delight in reminding you when your birthday is coming up. Dan’s birthday was never going to be a secret!

On the weekend after his birthday, we had a party for Dan at home with his family who live in Queensland. Dan was so excited. He gave everyone a hug when they arrived and took great care opening the presents. I am always impressed at the way people put a lot of thought into a gift for Dan, thinking about what he enjoys rather than what’s traditional for a twenty-first. Then it was time for cake number three – a delicious mud cake, also decorated with blue, silver and white stars. It looked fantastic, thanks to Kim from Abbolou Cakes who did a wonderful job on both cakes.

Dan’s life journey has been different. While the milestones and achievements are eventually reached, the timeframe has often been different. But a twenty-first is a twenty-first, no matter where you are on the journey. Dan may not be making important life decisions or moving out of home tomorrow, but we have had a wonderful celebration of his life with the people he loves. And you can’t get better than that.

The Trials of the Non-verbal

Dan is non-verbal. Well, that’s what I usually tell people when they first meet him because it’s easier than trying to explain the ins and outs of his oral communication abilities. But he’s definitely not mute. You can ask his sister, Bec, about that! Dan loves to sing – at any time of the day or night. Sometimes it’s a whole verse and sometimes it’s just one line, over and over, like a needle caught on a broken record. Dan can say words. He can identify people and things he knows, repeat words and phrases, but he cannot hold a real conversation. So I just tell people he is non-verbal.

It’s quite amazing what people assume about the non-verbal. I’ve lost count of the number of people who express amazement at how well Dan knows his ABCs or the numbers up to ten. They are usually stunned into silence when I tell them he can read, knows the numbers up to one thousand, can add fractions and calculate percentages. Although Dan can’t read at an adult level, he does recognise almost all the regular sight words and has quite a large sight vocabulary of other words. When he was very young, before he started school, he loved The Wiggles. He could pick out a Wiggles video out of a stack, even though the only thing that was visible was the label on the side – and even when it was upside down. Somehow he recognised the shape of the word. Like many people with autism, he is a visual learner.

Before Dan’s diagnosis, a speech delay was suspected and we began to introduce signing. Well, Bec picked up the signs almost immediately and she was the one who could speak perfectly well. Dan took a little longer, and signing was okay but it was limited to those who knew the signs. After the diagnosis of autism, we were introduced to PECS (picture exchange communication system) and it was a great breakthrough. Dan could request things and make choices. We made up a big folder with all the pictures and it worked really well at home but it was rather cumbersome in other environments.

Over the last few years, I’ve seen kids and teens with autism use iPads as a communication device and I’ve been really keen to try one with Dan. He picks things up pretty quickly, as long as it’s not toileting (but that’s a story for another time). Even when you think he is not paying attention, he is taking everything in. He just can’t get it out. And like his sister, he’s pretty quick with technology. Despite all this, our journey towards a more effective and age-appropriate communication system has been frustrated with stops and starts, changes in therapists and differing opinions on what is right for Dan. But finally I hope we are on our way.

I know the visuals work for Dan. We use them for his everyday routines.  Dan is usually pretty good with the morning routine except that he always needs prompting to do the next step. This is something we’ve been working on, but our recent trip to Adelaide caused an unforeseen ripple in the morning routine. While we were in Adelaide, I bought Dan a new shirt to wear at his grandfather’s 80th birthday. Dan must really like this shirt because he has wanted to wear it every day since we got back. It’s a really nice shirt but it’s just not suitable for him to wear every day for his group activities at Yellow Bridge.

The problem is that once Dan has done something once, it becomes a routine for ever and ever. It just took one morning for the new shirt to become entrenched into the morning routine. It didn’t matter how many times I said to pick a different shirt or take him back to his room to change, it happened every day.

We’ve been trialling a little communication app on my iPad, just to see how it goes. Its not proloquo2go but works in a similar way. It’s just very basic and so far so good. I used it to make up a board about getting dressed and so this morning we went through it before he went off to get dressed. Voila! It worked. He came out first time, without the new favourite shirt and appropriate dressed for the day. Visuals make such a difference.

I am really looking forward to seeing how our journey progresses. I know there is so much that Dan knows and just can’t express. I would love to be able to have a conversation with him that is more than a learned pattern of responses. I would love for Dan to be able to communicate and interact with others on his own terms. I want Dan to be as independent as possible and lead a happy and fulfilling life. And an effective communication system is the key.