Dan the Mailman

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

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

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

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

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

Dan can even play mailman at home.

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

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

 

And here it is – Dan’s mailbox…

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

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

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A Sticker for the Ow

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One of the challenges of Dan’s autism is his high pain threshold. We often don’t know that something is wrong until it is very wrong. Recently Dan went to bed one evening  perfectly fine, but the next morning he could barely hobble to the kitchen table to have breakfast.

What’s wrong? Why are you limping?

Ow.

Show me Ow.

Dan rubbed his left thigh and sure enough, there seemed to be a red mark, although he is unable to tell us how it happened. Without witnessing an accident or injury, we often never know how the bruises come about. But we do know that when Dan says “Ow”, it means it really hurts.

Autism and a high pain threshold often go hand in hand. In his book, The Complete Guide to Asperger’s Syndrome, Tony Attwood notes that people on the spectrum often do not “show distress in response to levels of pain that others would consider unbearable” and this can often result “in frequent trips to the local casualty department.”

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Yes, hospital emergency departments are something we have had experience with over the years, for both detected and undetected injuries and illnesses. Dan has a tendency for hitting his head and has the scars to prove it. It’s amazing how much blood can pour out of a body part that appears quite bony, but at least this kind of injury doesn’t go unnoticed.

Dan received his first scar at the age of two, just prior to the birth of his sister, Bec. We were shopping for a new single bed for Dan and as we wandered around the furniture store, he tripped over a rug, flew through the air and collided with a bed. Needless to say, we didn’t buy that one. A few years later, Dan was kneeling on a chair at the kitchen table, when…bang! His chin hit the table. Blood streamed down his chest. Off to the hospital again and another scar.

The most recent emergency trip was just a few years ago. Dan was riding his bike around our property and ran smack into the loader. Dan had his hat on, so the brim hid the bottom edge of the loader bucket and, as Dan prefers to look at his shadow while he is riding, he probably wasn’t looking where he was going either. At least this time he let the nurse put in a few stitches. That was a first.

Infections though, are a different story. Tony Attwood highlights how ear infections and tooth aches can often go undetected until they’ve reached a very serious level. Dan had a lot of ear infections when he was young, but he never complained and rarely cried, so it wasn’t until we noticed him pulling on his ear that we knew something was wrong. It was often quite difficult trying to make medical staff understand the reality of life with a non-verbal child who has a high pain threshold.

 

Our most recent injury started with the limp, but then it got worse. Apart from the limp, Dan seemed okay. Then we noticed he looked a little pale. And before we knew it, up came his breakfast. Great – a tummy wog. At least this time I managed to get him to direct it into a bucket – that is a first and a really big step forward for Dan. Usually he just gets so distressed, well, it just goes everywhere. But we weren’t done yet.

While he was taking it easy, a small pile of books fell onto Dan’s foot. Ow! And it was the same foot that was already limping. It was only later that I discovered he had a sore toe as well.

What’s this? When did this happen?

Ow.

Yes, I can see it is ow.

This is where the sticker comes in. Sticker is Dan’s word for bandaid. Bandaids are wonderful inventions. They can miraculously heal any sore spot. So, while I’m putting the sticker on….what’s this under your foot? Tinea? What next? After a visit to the doctor and the podiatrist, I spent the next week playing tug of war with a sore foot as I vainly attempted to inspect sore spots and apply cream and stickers. Thankfully, the tummy is now settled, the limp has disappeared and we are down to just one sticker on the foot.

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Vigilance is really important if you have a non-verbal autistic child with a high pain threshold. It is so easy to miss something because your child is happy, active and continuously singing. But then again, perhaps vigilance is important for people without a high pain threshold too. We all need someone who can look beyond the “everything is okay” facade and ask the question: are you okay? And sometimes we need to be truthful and say “Ow”. Being vigilant and looking out for each other means we can all live happier and healthier lives.

 

Attwood, Tony 2008 The Complete Guide to Asperger’s Syndrome, Jessica Kinglsey Publishers:London, pp 288-289.

 

 

 

 

The Journey into Autism

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The word ‘journey’ can conjure a variety of images in our minds. Perhaps you imagine packing your bags and catching a plane for that once in a lifetime trip around the world. Or perhaps you think about stepping into the great unknown, travelling down an unfamiliar track, not knowing where you will spend the night or who you will meet. Throughout our life we will embark on many journeys, some short, some long, some never ending. Sometimes we know the final destination and sometimes we can end up somewhere completely unexpected. But every journey begins with that first step.

The dictionary defines journey as an act of travelling from one place to another.  It is also defined as a long and often difficult process of personal change and development. I think this second meaning sums up the journey into the world of autism.

From the moment I knew I was pregnant with Dan, I knew he was a boy. I don’t know why or how I knew. I just did. Like all parents, we held hopes and dreams for our child. We had so many questions. Who would he take after?  Who would he look like? Who would he become? As first time parents we didn’t really know what to expect, but we expected our parenting journey would be pretty similar to those we saw around us. I didn’t know then, how different our journey would actually be.

Dan arrived a little earlier than expected into the world. It wasn’t exactly smooth sailing, but we got there. It’s difficult to describe that moment when you hold your child for the first time. Your heart is filled with more emotion than you ever thought possible. All the pain is pushed aside as you gaze upon this little person, overwhelmed with the rush of love and the awesome responsibility of the journey ahead. Dan was beautiful, perfect, precious and very loved.  

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As babies go, Dan was pretty placid. He slept well, didn’t cry too much and seemed pretty happy. We had no reason to suspect that things weren’t all as they should be.

Dan reached almost all of the major milestones within the right timeframe – except for speaking. I wasn’t too concerned at first, but to be on the safe side, we consulted a speech therapist. After a while we were directed towards an early intervention program in our town, and eventually a paediatrician. That was when we heard the A word for the first time. I thought that Dan just needed more time. 

 Finally, just before Dan’s 3rd birthday, we heard the A word said with definition. And then our world changed forever.

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Autism. It’s not a huge word – only six letters – but it means a whole world of difference. Eighteen years ago that word would devastate me. All our hopes and dreams for Dan’s life were shattered and we were filled with despair about the life he would have. On that day I could never have imagined that there would come a time when I would say that there are no regrets, no wishful thinking, no desire for a cure. I would not change Dan for the world. 

Our parenting journey has been different. The road has been long, and sometimes it has been very hard. But it has also been filled with much joy. Despair soon gave way to a fierce and absolute determination to give Dan the best life he could have. It was a steep learning curve. Patience, alternate communication, maintaining routines, sensory issues,  persistence, food intolerances, special education, and advocacy. Every thing we learnt along the way, were the very things we needed to show to the world – patience in the face of ignorance and insensitivity;  persistence to keep on going when things are tough and get even tougher; and advocacy to bring about the changes we wanted to see, the dreams we wanted fulfilled, and for the rights we all take for granted.

Dan is a wonderful human being who graces this world with much love, enthusiasm and enjoyment. He is loving and generous, happy and giving, friendly and helpful. He possesses all the characteristics a mother could ever want for her child. He is a son to be extremely proud of. Even though verbal communication is a struggle for him, Dan demonstrates his love and kindness everyday. I don’t know quite where his journey will lead, but I know it’s going to be awesome.

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The journey into autism is tough. It is not for the faint-hearted. But you will learn about true friendship and what really matters in this life. And you will discover depths you never thought you had.

If you have just started on this journey, may you be filled with hope and encouragement.

 If you are someway along this journey, may your well be replenished with the strength to keep on going. 

And if you are not on this journey personally, may you be a source of encouragement, support and understanding for those of us who are. 

I Love a Good Story

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

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

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

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

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

There is nothing quite like meeting people face to face

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

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

 

 

 

 

 

 

 

The Trials of the Non-verbal

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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.

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Dog Alert

 

Now that the weather has started warming up, we have been getting outside a lot more. I had noticed that some extra padding had mysteriously accumulated in various places over winter so I have been determined to be more active. One morning I decided to take Dan for a walk around our neighbourhood block. It was going well until we passed a place that had a dog.

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Dan hates dogs. I can’t ever remember him having a bad experience with a dog, however, for as long as I can remember, he has been afraid of dogs. Now the dog that we passed was safely behind the front fence. It looked over the fence at us and barked at us, but we were quite safe. However, as soon as Dan hears or sees a dog, he tries to get as far away from it as possible. Even if it means putting himself in danger by standing in the middle of the road. It doesn’t matter how much I try to reassure Dan that he is perfectly safe; the dog is behind the fence, he can’t get you – he is usually determined to go in the opposite direction. Eventually, we managed to get past the dog, but it was very exhausting.

One of the things we like to do when we are camping or touring around Australia is visit wineries. I especially like the small family-run, boutique wineries and I have noticed how wineries and dogs often go together. Dan has a good memory. I used to think he remembered which wineries had dogs, if we happened to visit them again. But an experience earlier in the year has raised a different possibility.

Before Easter, we spent a weekend at a small town called Kingaroy just a few hours north-west of Toowoomba. We visited two wineries. When we arrived at the first place, Dan wouldn’t get out the car. We looked around, couldn’t see any dogs and tried to reassure him that there were no dogs. Reluctantly, he got out the car and followed us into the wine tasting area. I was tasting a few wines and chatting to the owner, and asked him if they had any dogs. He said they had two dogs but they were in the house with his wife. The next minute, Dan is trying to climb up my husband, Paul, who is over six foot. One of the dogs, a small dog, had escaped from the house. Climbing up the nearest human tree is Dan’s favourite escape strategy. Thank goodness he has stopped trying to climb up me.

When we went to the second winery, a strange thing happened. Dan got out of the car – no problems. I thought, this is a bit weird. Anyway, we go into the shed and I ask the lady if they have any dogs. No dogs. I explained about Dan’s autism and dislike of dogs, and she thought he could probably smell them. People on the spectrum often do have a heightened sensory awareness and Dan is quite sensitive to sound and touch. But it never occurred to me that he could smell dogs. The next time he refuses to get out of the car, we’ll know.

Bush Running

 

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Every week my son, Dan, goes bush walking with a support worker up at Picnic Point. Dan is tall and thin and has long legs. It comes in handy sometimes. When we do the grocery shopping, he can reach the items on the top shelf. Dan didn’t inherit his long legs from me. He is very active, so when he walks, he is like a man on a mission. Once he gets into the zone, he just goes. There are two speeds–stop and go. His support workers have nick-named their bush walking excursions as “bush running.”

Now if you want to get fit, walking (or running) with Dan is a great idea. However, it does have its downsides. While he is in the zone, he has no sense of road safety. If he knows where he is going, he just goes, across the road without looking. One time I thought it would be a good idea for us to go for a walk around our suburb. As long as Dan was in view I thought it was okay. But then he got just a bit too far ahead, and it didn’t matter how much I called–he was in the zone. There was no way I could keep up with him and worried about what would happen when he reached the road, I had to ask someone to help me catch him .

Dan also has a tendency not to see people. When we are out among crowds, he tends to just barge through people. Fortunately, nobody has been injured yet. But it does mean that when we go out, I need to hold on to him and manoeuvre him in and around people and obstacles. In the past, he has even walked straight into a pole.

On the weekend, Dan, Bec and I went for a drive out to Crows Nest National Park, not far from Toowoomba, to see the waterfall. The walking paths to the pools, the look out and the falls, all have steps. Lots and lots of steps. I’m not really all that keen on bush running, so as we go down the path, Bec sets the pace from the front (she has long legs too) and Dan brings up the rear. As we were going down all the steps to the water pool, I  thought about how we would have to come back up all those steps. No matter. I put Dan in front, held on and he pulled me all the way to the top. As I said, he can be quite handy!

We laugh about the bush running and admire Dan’s stamina, but I wouldn’t have it any other way. Even though he is mostly non-verbal, he is always happy and makes our life very entertaining.