NDIS Review 2019

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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?

 

The Last Stop

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The Great Australian Dream

For decades now the Great Australian Dream has been a home of one’s own. We grow up aspiring to be home-owners. When I was growing up, it was the quarter acre block. Nowadays blocks are a lot smaller, but the dream is still the same – a home of one’s own.

Since I first moved out of home, many years ago now, I have been a renter more than I have been an owner. I have lived in the city, by the coast, out west and now on the top of the Great Dividing Range. I have lived in units, regular houses and on a semi-rural block. I have moved house numerous times for a variety of reasons. Less than two years ago I wrote about my 18th move which you can read about here. And now we are gearing up for move number …19!

After four years of renting in Toowoomba, we are finally moving into a home of our own. We moved from our home out west for a few reasons, namely so Bec could finish high school and Dan could access better support. Initially we thought we would rent for a while and then buy a house somewhere. Unfortunately this took a lot longer than we expected. The boom and bust mining cycle can play havoc with the regional real estate market. But finally we have a new home and we can’t wait to move in. 

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Why is this post titled The Last Stop? After so many moves, Paul has asked whether I have Gypsy blood – not to my knowledge. He asked whether our new house will be “the last stop”. Straight away we knew that would be the perfect name for our new house – The Last Stop. I am certainly hoping it will be the last stop for quite some time. Bec has noted that the longest time she has ever lived in one house is six years. I am hoping we can beat that record. In fact, I told Paul the only way I was leaving this next house was in a box!  

The Last Stop is located on a block just outside of Toowoomba. It is one of those places that requires a little TLC but has plenty of room for Dan to ride his bike, for Bec to have chooks again, for a garden that consists of more than just pots and for Paul to indulge his passion for woodwork. We have been a little crowded in our small duplex. Some mornings the kitchen is just not big enough for the three of us. And when Paul comes down for the weekend, well, there is even less space. 

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We all like to have our own space. We like peace and quiet. We like to see open space, smell the country air and hear the sounds of nature. We need places where we can find solitude. And we are looking forward to finding places for all our bookshelves and books and other stuff too.  

Just knowing we will have our own home again has fertilised our imagination. Those home renovation mags which we usually ignore have suddenly become far more interesting.  A master plan of future possibilities is starting to take shape in our minds. Who knows, perhaps you may see some Reno posts sometime down the track. 

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Renting can have its advantages but it is not the same as your own place. Over the last four years we have lived in three different rentals, which were all perfectly nice places but they weren’t a home. Two of them had perfectly blank walls without a single hook. We weren’t allowed to hang anything – not even a clock. They may well have had a modern and sleek interior, but they were cold and sterile. They weren’t a home. So we are looking forward to pulling out our family photos and artwork to hang on the walls. We are looking forward to creating a home. 

In your own home, when something gets broken or needs fixing, you can fix it! You don’t have to go through the whole rigmarole of reporting maintenance issues to the real estate office and then wait for ages for them to get around to actually getting it fixed.  And, best of all, no more routine inspections!

So move number 19 is fast approaching. Another round of packing and unpacking boxes, loading up furniture and negotiating stairs, corners and hallways.  But this is a move we are all really looking forward to. We can’t wait.

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Bec Turns 21

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We have just celebrated Bec’s 21st birthday. It feels a little strange to have both children over the age of 21. I don’t know where all the years went. One minute I had two small children and the next they are full grown adults. How did that happen?

Twenty-firsts are becoming a thing of the past in some places. Times have changed. The 21st once signified a major milestone in a young person’s life, a coming of age, a time when they would take on the expectations, responsibilities and privileges  of the adult life. Today the 18th is often seen as marking that milestone, however it still is a joyous occasion to gather together to celebrate a birthday and always provides a good excuse for a party.

Bec is not the raging, partying kind. She loves her family and close friends and prefers intimate gatherings where friends and family can get together, enjoy a meal, and celebrate in a relaxed, low-key manner. So a group of family and friends gathered at the local Golf Club for a lovely evening together in a private room. It was exactly what Bec wanted.

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Of course, it is still hard to believe that she has reached this milestone. It is hard to believe she is no longer that tiny little baby with the long blond hair. And yes, when Bec was born she did indeed have long blond hair, long enough that we could have tied it up with a ribbon.

Bec’s life hasn’t been an easy journey. She has been surrounded by loving family and friends. She has known the challenge of having a special brother like Dan, who I know she really does love, even though he drives her mad. But she has also known the heartbreak, pain and grief of losing her beloved Dad, Rob. It is a grief she will carry forever in her heart.

Bec was only four when her Dad died, yet she has memories that are crystal clear. She is very much like her Dad in so many ways – the way she smiles, the interests she pursues, the way that she never puts anything away in the same place twice. But she is especially like her Dad in the ways that count: in her compassion for others, her attention to detail and dedication to excellence, her love for music, the natural world, and the written word.

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Through the hard times Bec has endured. She has grown deeper and stronger, and having experienced both the pain and joy of life, she can look into her future with hope, knowing that she has the inner strength to face whatever comes her way. She has grown into a beautiful young woman and I know that her Dad would be very proud of her.

We are all very proud of Bec too and long after the tea lights and flowers have faded, and the music themed cake has been devoured, we will continue to wish her joy, hope and love as her journey in life goes on.

 

 

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A Day at Victor Harbor

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Victor Harbor is a small coastal town, 71km south of Adelaide on the Fleurieu Peninsula. It has a long history as a popular holiday destination for many South Australian families and it holds a special place in the hearts of my family. Back in the 1930’s, when my grandmother was a young woman, she enjoyed holidays at Victor Harbor with her friends and family. Later, when she was married and had a family of her own, she continued to enjoy the time they spent every summer at Victor Harbor. My mum and aunty remember these holidays with great fondness: building sandcastles on the beach, eating fish and chips on the grass under the tall Norfolk Pines, and going for a drive around to see the Bluff. As one of the next generation, I also have fond memories of summer holidays at Victor Harbor with my grandparents and cousins. 

 It’s funny how place becomes important to us as we grow older. Victor Harbor was a favourite place for my grandmother because it held so many memories for her. Even in her old age, she still liked to go there, to sit on a bench overlooking the sea, and remember. My grandmother passed away quite a few years ago now, but still Victor Harbor remains a special place for the rest of her family. We are all scattered across Australia, but when we do get together in South Australia, Victor Harbor is always at the top of our list. We remember the family holidays, but most of all, we remember my grandmother and we always feel close to her in Victor Harbor. 

Before we even left Queensland for our recent trip to South Australia, I knew that I wanted to visit Victor Harbor. It’s such a special place for all of us, that when my aunty learned we were all going for a day trip, she burst into tears. Living in Queensland too, she doesn’t get down to South Australia very often either, and given the circumstances of our trip, she didn’t expect she would have the opportunity for a visit to Victor Harbor. I knew then, that come what may – wind, hail, or even snow, we had to go to Victor Harbor.

  Even at the height of summer, the weather in Victor Harbor can be cool. In the middle of winter, it can be downright cold, wet and windy. And that was exactly what I was expecting. But I didn’t care. We were going to Victor Harbor, whatever the weather. Fortunately, it turned out to be a beautiful day – cool, overcast but fine. In the summer you would hardly be able to move for the crowds, but if you don’t mind the cold, blustery weather of a southern winter, then July is a good time to go.

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Looking back towards the mainland

One of the major attractions of Victor Harbor is Granite Island, which is connected to the mainland by a pedestrian causeway. After crossing the causeway, visitors can follow a walking path around the island and take in the beautiful ocean views. I don’t know how many times I have walked around Granite Island but I never get tired of the view. I love the ocean. It’s the one thing I miss living in Toowoomba. This time there was something new. Some very interesting and sometimes quite unusual modern sculptures had been erected around the island, complete with signs not to climb on them, which of course is a direct invitation for any child! 

Granite Island used to be home to a large colony of Fairy Penguins. In past years, if you were there at the right time, you could spot them making their way back to their burrows. Sadly, the penguins have fallen victim to fur seals and worst of all, local vandals. In 2012 the colony was numbered at just 7 penguins! You can still take a penguin tour at dusk but otherwise access to the island is restricted at night in order to protect the penguins. We didn’t see any penguins but we did see this sign! 

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One of my favourite attractions at Victor Harbor is the horse drawn tram. It is one of only two horse drawn trams in the world that still maintains a daily schedule. The tram is drawn by one of six clydesdales and carries visitors out to the island and back again along the causeway.  The tram began operating as a tourist attraction way back in 1894. Over the years there have been a number of different trams but sadly the service came to an end in the mid 1950s. However it was never forgotten by the many South Australians who holidayed at Victor Harbor. For them, Victor Harbour was never quite the same without the horse drawn tram.

In 1986 South Australia celebrated it’s 150th Jubilee and as part of the celebrations, a number of community projects came into being, including the reprisal of the Victor Harbor horse drawn tram service . Unfortunately the old trams were long gone. One ended up in the US in a museum; the other in the sea after years of deterioration and vandalism. So they had to build them from scratch based on the original designs.  In June 1986 the Victor Harbor horse drawn tram service had a grand re-opening and since then has continued to cart visitors back and forth over the causeway. After all my visits to Victor Harbor over the years, this was the first time that I finally got to have a ride on the tram!

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The day would not have been complete, of course, without fish and chips. In the summer there are plenty of lovely spots to throw out a picnic rug under the Norfolk Pines, but in the middle of winter we had to be content with the foreshore cafe. This was our last day in South Australia, so it was so lovely to spend it with our family in a place that means so much to all of us.

 If you ever visit South Australia, a trip to Victor Harbor is a must. Stroll around the island, enjoy a relaxed ride on the horse drawn tram and have fish and chips on the grass under the pines. And if you have time, take a penguin tour at dusk. I don’t know when my next trip to South Australia will be, but you can bet it will include a trip to Victor Harbor.

Family Time

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In our hectic modern lifestyles, it can be hard to carve out spaces for quality family time. It often becomes a matter of minutes snatched here and there, in between ferrying children all over the place, never-ending domestic chores, and work or study related activity. Until one of those significant life events occur that draws the family together in a big way. 

We’ve just recently returned from a trip down to Adelaide for my uncle’s funeral. Funerals are a bitter-sweet time. There is sadness because we miss the one that we loved and we cannot imagine our family without them. But sometimes there is also happiness and relief that a long and painful journey has come to an end. And so it was with my uncle. After a long fight with cancer, he is at peace. 

Adelaide is my home town. Although most of my family grew up in South Australia, in Adelaide and in small farming towns to the north of Adelaide, most of us now live in other states. We sometimes joke that we get along better that way. It is difficult for us to be together in the one place, at the one time, and so, when we are together, the time is very precious. Despite the reason for our gathering, it was a beautiful time with my parents, my brother and his family who flew in from Western Australia, and my aunty from the Sunshine Coast in Queensland.

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My uncle was a farmer, a traveller, a glider. He married late in life, gaining not just a loving wife and companion, but three young adult children, who held him in great esteem, love and admiration They gave such beautiful tributes about the role he played in their lives, showing that family isn’t always about blood, but about love. He was their hero. 

My uncle will be missed but the time we spent sharing stories, laughing and remembering, deepens the memory of him in our hearts and minds. My mum and aunty reminisced about growing up on the farm with their brother, riding to school in the horse and cart, and family holidays at Victor Harbor. These are the stories that become part of our family folklore to be passed down through the generations. And the telling of these stories, over and over again, strengthens the relationship between all of us. Sharing our grief and our joy brings us closer, even though we live many miles apart.

We also added a new story to the family folklore. One evening we went out for dinner at one of the local hotels. Paul has a sweet tooth and so he ordered some dessert – strawberries and cream. When the dish arrived, there was great amusement as we embarked on a strawberry hunt. Apparently “strawberries” means one strawberry cut into four pieces, spread across a rectangle plate with small blobs of cream. Photos were taken, of course, and the story has already been repeated and will no doubt be embellished as time goes on.

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Paul’s Strawberries and Cream

Some stories become traditions imbued with special meaning. When my mum, aunty and uncle were growing up, they went on an annual holiday to the beach. Initially this was to an Adelaide beach called Glenelg, and then to Victor Harbor, as mentioned before. The tradition didn’t stop there. When our cousins came down from Queensland to visit, our grandparents would take our whole family for a holiday to Victor Harbor. Interestingly, the holidays to Victor Harbor started well before my grandmother was even married. Victor Harbor was a special place to her and so it has remained for our family, so of course, any trip down to Adelaide must include a visit to … Victor Harbor. My brother even took his family down there for a few days holiday continuing the family tradition.

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Looking Across to Victor Harbor from Granite Island

 All family gatherings eventually come to an end. We all have normal lives to which we must return, accompanied by a collection of new memories and a story or two. As the years pass, and more and more family members pass away, it can often feel that we only see each other at funerals. And this where we can see the true blessing of technology – for keeping us in touch with those who live so very far away and the recording of stories for future generations.

No More Plates

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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.

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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.

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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. 

Wear Red for Valentines

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Happy Valentines Day.

A day for all things red and heart-shaped. A day for celebrating the mystery of love in all its shapes and forms. A day for flowers and chocolates, hugs and kisses, and walks down memory lane.

Hearts are amazing things. They flip at the sight of the beloved. They pour out in times of hardship and suffering. They race like crazy at the top of the hill. And in the busyness of our daily lives, our heart sits in the background, beating, pumping blood around our bodies, keeping us breathing, active, living. We don’t even need to think about it. It just keeps on working. Until one day it doesn’t.

Wear Red Day

Today is also Wear Red Day. It’s a day for remembering those who have died from heart disease and those who devote their lives to research, such as Heart Research Australia.  Wear Red Day is a cause that is close to our hearts. Sadly, we are intimately acquainted with heart disease.

When Dan and Bec were very young, only 6 and 4 years old, their Dad, Rob, died suddenly of a heart attack. One evening Bec said goodnight to her Dad and it was the last time she saw him alive. The next morning, Rob got up early to go swimming. He never came home. He was 39.

Having a desk job, Rob was concerned about his health and fitness, so had started swimming a few laps early in the morning at the local pool. While he was at the pool, he experienced pains in his chest and took himself up to the hospital. When the hospital called me, they reassured me that he looked fine and to just come when I could. There was no hurry.

It was Dan’s first week at school. After doing the morning routine, dropping Dan off at school and Bec off at a friend’s house, I went up to the hospital. Rob was sitting up, talking to the nurses and we chatted. They were waiting on some further results and then the doctor was going to discuss whether further treatment or lifestyle changes would be required. We never got that far.

I sat…waiting, wondering, praying

One minute Rob was fine. The next minute he had a fatal heart attack. It happened right in front of my eyes. At the time, I don’t think I quite understood what was happening which was probably a blessing in disguise. It was only much later that I realised I had watched him die. The nurse called for assistance, medical staff rushed in and I was ushered out of the room. I sat by myself in the waiting room. Waiting. Wondering. Praying.

Finally the doctor comes out and says he is sorry. There was nothing they could do. They were unable to revive Rob.

What happened next is somewhat blurred. I know that friends immediately dropped everything to be by my side. I know that my family, who all lived interstate, dropped everything to travel to QLD. I know that during that day I made numerous calls to people to tell them what had happened. And at some point I had to tell my four year old daughter that her Daddy wasn’t coming home.

We didn’t know that Rob had a heart condition.  There was a blockage in one of the arteries. Tests had shown that he had had a mild heart attack. Even the doctors admitted that Rob did not look like a man who was about to have a fatal heart attack. There is no blame to be cast. He was in the right place at the right time. If only we had known.

It turned our lives upside down

I lost my partner, my best friend, my soul mate. Dan and Bec lost their Dad. Family members lost a son, a brother, an uncle. I don’t know what Dan remembers or feels about it. He can’t tell me but he still recognises Rob’s photo and calls him Dad.

For Bec, it has been devastating. People who knew Rob, say Bec looks so much like him. And she does. She is like him in so many ways, even in ways she could never have possibly known. Bec is Rob all over again. And so her loss runs deep.

It is a lifelong loss and despite what people may say, it does not get better with time. Special days come and go – Christmas, Father’s Day, Birthdays, Anniversaries, Graduations – they are always bittersweet because he is not here. 

Hearts do heal but they are never the same. Our hearts are scarred with the pain of loss and grief. Life does go on, but we carry our loss with us wherever we go. And every year, when that day comes around again, we feel it in our bodies and in our souls. Even before we are conscious of the approaching date,  we feel it  – the heavy heart, the sadness, and then we remember – that day is here again.

Every time I hear a story of a sudden death of a loving partner and father, no matter the cause, I remember, and it causes a pang in my heart for the family left behind. We know the road that lies ahead. We were not the first and we won’t be the last. Not even the last in our own family.

Only a few months ago, Rob’s older brother, James, passed away suddenly. In circumstances eerily similar to that of Rob’s, a different heart condition, but still, it felt like a case of deja vu. For friends and family gathering at another funeral, the words “we’ve been here before” rang an all too familiar refrain.

 

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So today, wear red. Wear a red shirt. Wear a red hat. Wear red shoes.

If you have lost someone to heart disease – wear red.

If you know someone living with heart disease – wear red.

For all the people in your life who you love dearly – wear red.

Wear red to keep hearts beating. 

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An Extrovert in the House

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Do you like time to yourself? Do you like to have time to think through problems or decisions before responding? Do you prefer communicating through writing rather than talking?

If you have answered yes to all of the above, than most likely you are an introvert, just like Bec and I. We like peace and quiet. We like to read. We like to spend time sitting quietly, thinking, reflecting, reading, writing and so on.

Introverts often get a bad rap. We can be accused of being anti-social and of not being a team player. But it’s simply not true. We do enjoy being with people, but we find it just a bit tiring. For us, a little bit of socialising goes a long way.

I really dislike the way the word “loneliness” is attached to introverts. Just because we have a smaller circle of friends and often prefer to do some things on our own, doesn’t mean that we are lonely.  It’s not loneliness, it’s solitude and solitude is very important for introverts. It’s the way we recharge our batteries so that we are ready to cope with the world outside – the very noisy, busy, extroverted world.

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Dan, on the other hand, is the extrovert in the house. He is very social. He loves being  and doing things with people. He absolutely loves his time at Yellow Bridge during the week and his weekend activities with the Boys Group and support workers. At Yellow Bridge Dan is noted for his friendliness and helpfulness. Every morning he goes around and shakes every client’s hand as they arrive. And when someone new arrives, Dan is the first to make them feel welcome.

Dan is also very active. He likes to be out and about doing things. He doesn’t like sitting quietly. I think he finds that very boring, so his week is filled with activities like Gym, swimming, bowling and bushwalking. And when he has respite on the weekends, as soon as the support worker arrives, Dan is out the door raring to go. He doesn’t even have time to say bye to Mum.

Although Dan’s autism does present some challenges, there are some aspects of autism that don’t seem to be a problem for him. Over time Dan has become a lot more flexible and is able to roll with changes in routine and he doesn’t appear to get anxious about things. He always seems to be happy and outgoing, which does make life a lot easier in some ways.

However, one extrovert in the house doesn’t always go so well with two introverts.

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Dan doesn’t like to do things by himself. He finds it very difficult to occupy himself. One of Dan’s favourite activities is Lego and he is very good at following the instructions, finding the right pieces and putting it all together. But he likes to have someone sitting right next to him while he does it. If I set Dan up with some Lego or some other activity like a puzzle or his word book and leave him to do it himself, he will deliberately do it all silly and want me to fix it. Even though the only thing I need to do is turn the pages of the instruction book, he likes me (or somebody else) just to be there. He likes the social aspect of doing an activity together.

Despite being relatively non-verbal, Dan is quite vocal. He loves to sing. Loudly. At any time of the day or night. Continuously. Even though he struggles to string three words together, he can sing a whole song. The words might be a bit difficult to pick up but you can always tell what song he is singing by the tune. At other times, Dan will get fixed on one little phrase which we will hear over and over and over again. For two people who like their peace and quiet, it can get very tiring.

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Now Dan has always loved singing and being active and I had never really thought about him as an extrovert until Bec made the connection just recently. We respect Dan’s needs for social interaction and we really do love that he enjoys music and singing so much, it’s just that sometimes it gets a little too much. Sometimes we just need a break. We need some quiet time to recharge our batteries.

Being a carer is tiring. Supporting Dan in his everyday needs just goes on and on. I know it’s not his fault. It’s just the way he is, but it still gets exhausting. The difference between Dan’s extroversion and our introversion just adds another layer to the everyday challenges of life. It’s tricky trying to balance the differing needs of all family members. That’s why respite is so important. Respite is not just an optional extra for carers; it’s essential for our health and well-being. As much as we love our extrovert in the house, we look forward to the time on our own. Dan gets to go out and have fun. We get peace and quiet. Everybody wins.

 

 

 

 

 

 

 

2019: Looking Forward

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Another year has come and gone. I don’t know where 2018 went. It seems like I had just settled into 2018, remembering to write an 8 instead of a 7, and suddenly it’s the end of the year. How did that happen? The older we get, the faster the years seem to zoom past. It really doesn’t seem quite fair, somehow. But as they say, time waits for no one. As we watch 2018 disappear in the rear vision mirror,  2019 roars into view. What will this new year bring? Will some pleasant surprises come our way? Will unexpected challenges throw a curve ball into our plans? Perhaps you have already started to make some New Year resolutions.

  I am not really one for making New Year resolutions. Despite our best of intentions, very few of us actually manage to keep our New Year resolutions. It’s so easy to get carried away by the buzz of the New Year moment, gazing optimistically into the future through a merry alcohol infused haze and make rash resolutions with almost no forethought and maybe even less foresight.  Resolutions tend to be all or nothing. You either keep them, or you don’t. There’s often no middle ground. When we fail to keep our resolutions – and you can bet that we will, because after all, we’re human – our failure can be compounded with feelings of resignation, hopelessness or even depression. It’s a win or lose situation, and most of the time, we will lose. We get tired or busy or distracted, and before you know it, our good intentions have hit the dust. It’s all over, red rover.

I think goal setting is a much better way of initiating change in our lives, especially change that is important for our health and well being. When we set a goal, we are setting a target to aim for. It’s not something we can achieve overnight, but something that can be achieved slowly, over the course of time. Slow change is often easier to implement and maintain in the long run. Sometimes there will be setbacks. Sometimes it might feel like one step forward and three steps backwards or vice versa, but on the whole, as we look back, hopefully we will see how far we have come.

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Setting goals requires a bit of forethought.  Resolutions often fail because we haven’t thought about why these things are an issue, why we have failed to keep them in the past, what motivates us to change and what are the likely challenges we will face. When we set goals, these are the very questions we need to ask ourselves so that we can map out a plan to strive for our goal. This is where we get down to the nitty-gritty of how we will achieve our goal.

We might break our goal down into a series of steps. This is something I learnt when Dan was very young and we were trying to help him learn basic skills for school and life. If necessary, we can even break down each step into mini-steps – baby steps. Baby steps are so much easier to achieve than giant leaps. And if we get to the end of the year and we haven’t quite met the goal, you know what, it doesn’t matter. The goal is still there. We can see the progress we’ve made. We can just keep going. Besides, sometimes the journey towards the goal can end up being just as important as actually reaching the goal.

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During this last week my inbox has been flooded with posts reviewing the year, celebrating achievements and setting challenges for the next year. And it seems I’m not alone in preferring to think in terms of setting achievable goals rather than making rash resolutions. Beth at Life…Take 2 and Itinerary Planner at Travel Itineraries, just to mention two, also talk about goals rather than resolutions. Funny how we can be on the same page and thinking the same thing at the same time.

Our goals don’t just have to be about achieving things like weight loss or increased fitness or career promotions. While these are all worthy goals, as we head into the new year we might also like to think about more family and community focused goals, like having more family time, showing kindness to strangers and patience to shop assistants, respect to our colleagues and forgiveness to family. Life isn’t always about being faster, stronger, higher but also about being kinder, friendlier, happier….

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2018 has been a year of ups and downs. We lost a dear friend to cancer on Easter Sunday and a family member passed away suddenly barely two months ago. We have had to deal with the stress of moving house and transition to university life. But there has also been the joy of Dan’s life growing to include new opportunities and the satisfaction of achieving numerous small goals.

Standing on the eve of 2019, we continue to look forward to whatever joys and challenges the new year will bring. As we set our goals for the next 12 months, we hope that 2019 is kind to you and that you experience the love, joy and hope of life in abundance.

Happy New Year!

Love, Joy and Peace

 

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It’s Christmas. The season of twinkling lights, festive food, Carols by Candlelight and happy families. We’ve cleaned the house, decorated the tree, wrapped gifts for a never-ending list of family and friends, and slaved in the kitchen. Christmas is that magical time of the year when families get together to celebrate love, joy and peace.

And then I see headlines about

  • dreading Christmas
  • how to survive Christmas Day
  • the lonely who have no place to go

Dread, survival and loneliness doesn’t sound much like the Christmas spirit. It fills me with sadness and makes me wonder what we have done to Christmas that it is no longer a time to look forward to with excitement, longing and hope. How has love, joy and peace become fear, stress and isolation?

Family life is messy. The people who are closest to us and love us the most, are also the people who remember our every indiscretion, carry a multiple of grudges and know how to push our buttons. Well intentioned concern often comes out as criticism and judgement. Much as we love our families, sometimes we can also dread spending extended time with them.

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Love is supposed to be at the heart of the family, but we all know that love and family life are hard work. My Macquarie Dictionary defines love as ” a strong or passionate affection for another person.” Affection? I don’t know about you, but the word affection seems a bit weak to me. I would describe love as one of the most powerful forces in the world. It is also one of the most demanding. Ask any parent.

Love is hard work at the best of times. It is even harder when we are tired and stressed. I wonder sometimes, if we make Christmas harder for ourselves than we need to. In our pursuit of the perfect gift, the perfect tree, the perfect roast turkey, the perfect Christmas, are we burdening ourselves with unnecessary expectations that end up making us tired and stressed long before the family even arrives. Are we forgetting the whole reason we get together in the first place – to celebrate the joy, love and peace of Christmas.

For some of my friends and family, Christmas will be hard this year. It will be their first Christmas without a loved one. It will be sad, but together they will laugh and cry, love and grieve. For them, Christmas will be about being – being together, being happy, being sad, being present in their love and grief.

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For us, Christmas this year will just be the four of us. The rest of my family will not be getting together – at least, not physically. It is always a challenge for my family to be together in the same place, at the same time. We are scattered across Australia, from Perth in the West, Adelaide in the South, the Central Coast in the East, to Toowoomba in QLD. Even though we might exchange gifts via the postal service and celebrate our joy over the phone,  we will still be together in heart and mind, for not even space and time can separate us from the love of our family.

Every family is different. Some families will be grieving. Some families will be far apart. Some families have special needs. There is no one way to celebrate Christmas. Every family needs to be free to find the way that works for them, to find the way that restores love, joy and peace to the Christmas celebration. If you are a family with special needs, or even if you are not, Kirsty from Positive Special Needs Parenting has some excellent suggestions about how to make the Christmas celebration right for your family. You can read it here.

In the busyness and stress of the coming celebration, I hope you find some time to be present and to experience the love, joy and peace of the Christmas Season.

Wishing you a Joyful Christmas

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