A Puzzling Time

Our Current Work in Progress

Jigsaw puzzles have always been a favourite activity for our family but it has taken on a new meaning as we are spending more and more time at home. With Bec and I both studying online from home, there are times when we need to find something to keep Dan occupied. Dan has a lot of activities he enjoys, but not very many that he can do completely independently. 

 He likes to do word searches and he often amazes people at how quickly he can find the words – even words he doesn’t even know! But you can’t do word puzzles all day. He likes to build his Lego sets too, but being quite social he prefers to do that with someone else. But Dan is very good at doing puzzles – even very large puzzles, once we have sorted the pieces and got him going.  He can do a 500 piece puzzle quite quickly on his own.

The autistic brain is quite mysterious at times. It is a mystery how Dan can whizz through a word search or complete a 500 piece puzzle and yet be unable to figure out shoe laces. Watching Dan do a puzzle is a sight to behold. When he was young he would complete puzzles exactly the same way every time. He would always start with the same piece, and put the pieces together in exactly the same order every time. And it wasn’t necessarily row by row. The order of the pieces could be quite random and yet it was the same every time.

The puzzles he does now are quite large so I can’t really tell if he has memorised an order but it does amaze me that he can complete an entire puzzle with the picture upside down. The sky will be at the bottom and the ground will be at the top. I don’t know how he does it. If I am helping him I have to turn the puzzle around the right way – trying to do it upside down just sends my brain batty!  

So we’ve been doing quite a few puzzles over the last few weeks and as we were working our way through them, we were deciding which ones to keep and perhaps which ones might need a new home. Dan is so good at puzzles it’s not much point keeping anything under 500 pieces. He also prefers pictures of things with wheels or dinosaurs so we are going to pass on all those lovely scenic puzzles which Dan finds a bit boring. And they have too much sky anyway.

Eventually though we ran out of puzzles and thought it would be nice to get some new ones. We especially wanted to find some big puzzles because the 500 piece ones don’t take Dan much time at all. Of course everybody else stuck at home has had the same idea. Even the online stores were almost all sold out, but we did find some at QBD and some great ones at Kmart which were deceptively more tricky than first anticipated.

Since Dan likes things with wheels, we picked this scene at a train station but there is so much detail in the picture it was like doing one of those I Spy computer games where you have to find all the things in the picture. We have a few more like the train station scene which will be fun to do.

We also found one which turned out to be the most challenging one of all. Where’s Wally at the Museum. Dan already had one Where’s Wally puzzle, but this new one had 1000 pieces. Seemed like a good idea at the time!

It is still out on display because it took so long to do and was so challenging we haven’t wanted to pack it away!

It’s not surprising that puzzles are having a run on popularity during Covid 19. With working and communicating online, we get sick and tired of looking at a screen. There are only so many movies you can watch and so many things you can do online – you start to get itchy fingers. A very similar thing happened during the Great Depression. Commercial jigsaw puzzles first appeared around 1760 but they surged in popularity during the Great Depression because it was a cheap form of entertainment. Interestingly, they were first called “dissections” because the early puzzles were wooden designs of a world map created to teach children world geography. It wasn’t until the late 1880s that they started to be called jigsaw puzzles. Apparently the largest puzzle available commercially has just over 50,000 pieces. Don’t think I will be getting one though.

I suppose when life returns to a shade closer to normal, the charity stores may be overflowing with donations of puzzles – hopefully still with all the pieces. Still, it is a great activity for families to do together and helps to keep the brain cells ticking over, which is why puzzles are recommended by associations such as Dementia Australia. Perhaps post Covid 19, we might consider donating our puzzles to retirement villages, support services or any seniors we might have living close by.

In the meantime… happy puzzling!

Breaking the Communication Barrier

Communication difficulties and autism go hand in hand. It might be misunderstanding facial and body cues, taking things too literally or just physically getting the words out. Dan’s communication difficulties were the first indication that something was different. It was a very frustrating time for all of us. There was a lot of pointing, leading and screaming as Dan tried to communicate his needs and wants. Over the years we trialled a few different communication systems, from Makaton signing and the Picture Exchange Communication System (PECS) to a specific communication device. Each system had its benefits and  disadvantages. 

Makaton is a form of sign language which uses key words. It didn’t require any special equipment apart from hands, however it was the child who did not need to use the signs, Bec, who was the one using them. Dan, the child with the communication difficulties, took some convincing initially to use the signs. Signing was effective but it only worked with people who also knew the signs.

 

 PECS involved the use of  picture cards called Compics – Communication Pictures. The exchange part of the system was very important because it taught Dan that communication is a two-way process involving other people. He had to physically take the picture and give it to someone and in a sense, this is what communication is all about, the giving and receiving of messages. It took a little training for Dan to get the idea, but I can still remember the day he first used the cards to initiate a request. I was so excited I felt like running out into the street and telling everyone. PECS was a great system because anyone could read the cards and know what Dan wanted. It did require a laminator, though and metres of velcro dots (I should have bought shares in a velcro company!) and the folder that Dan used to hold the pictures was a little cumbersome to cart around. 

Then towards the end of primary school we were able to access some funding to get a small hand held communication device. This device used the same kind of Compics as PECS but also had speech. Dan actually learnt some speech by imitating the sentences verbalised by the device. It did work, as long as teachers and aides used it. And this has been a primary issue  – communication systems only work as well as those who know how to use them and actually remember to use them. 

The introduction of iPads, iPhones and other devices has opened up a new world for those on the spectrum. For quite some time I had been keen for Dan to try using an iPad for communication. He is pretty quick at learning how to use technology – you just have to ask his grandmother about that. He kindly updated her apps on her iPad without her knowledge. Well, finally Dan has an iPad and is using it to communicate but it has been a very drawn out and frustrating process. 

a necessary and reasonable support

You would think that a device that enables Dan to communicate would be a support that is both necessary and reasonable. Unfortunately, the NDIS didn’t seem to see it that way. We were able to access funding to trial different types of software. There are a few different ones on the market and we needed to know which one would be right for Dan. One size does not fit all. We eventually settled on a program called Snap+Core First. The next step was actually get an iPad for Dan.  This was something the NDIS would not fund, even though it was going to be specifically used as a communication device. They would fund a specific communication device but not an iPad. I suppose they thought it would be just used for entertainment! So we bought the iPad.

Then we had to get the software. Simply a matter of downloading it from the App store, right? No, not so simple. The NDIS would fund it, but we could only purchase items from NDIS registered providers. Apple was not a NDIS registered provider. Fortunately this was easily solved by purchasing some iTunes cards. Now Dan should be ready to go. 

No, not quite yet. During the week Dan is out and about in different places with different support workers. How could we be sure the iPad wouldn’t get lost or dropped? We have already had so much trouble with losing hats – four hats in one month! And before that, it was losing his wallet – at least four times too. Sometimes I do wonder what is going through some support workers heads when they are with Dan. So a better case and shoulder strap would be required but this had to be ordered from a disability supplier. Now this was something the NDIS would fund, but for some bizarre reason they would only forward the money to purchase the case in dribs and drabs. By the time we finally got the full amount, which was not a huge amount to start with, the price had gone up! 

More than a year after we completed the software trial… we have now got the iPad, the software and the new case and Dan has started taking it with him every day to Yellow Bridge. Dan has been very quick to learn to use it. He is able to construct sentences, request items, ask questions and make comments. He even knows how to add new pictures and words to the categories and how to use the search function when he can’t find the word he wants. He also loves using the camera to take photos of the places he has been. He likes this so much we have multiple copies of everything! I think he just likes to stand there and keep pushing the button! Dan still needs to be encouraged to get it out and use it – initiation has always been a challenge – but it has opened up a whole new world of possibilities for Dan.

Now we just have to train the workers…

Autism: To Have or To Be

 

Here in Australia April is the middle month of Autumn. The weather is cooling down and the deciduous leaves are starting to change colour. April is also home to World Autism Day, Autism Awareness Week and Autism Awareness Month. It might seem a little funny to have one day or one week or a whole month to be “aware” of autism. For people with autism and their families, autism is an ongoing reality for the other 364 days, 51 weeks or 11 months of the year. We are just not “aware” of autism, we live and breathe it. Of course, it is good to increase awareness about autism, but what people with autism need more than just awareness is understanding – understanding that autism is not a condition to be cured but a way of being. 

Words can Build you Up and Words can Tear you Down

 We all know that words matter. Kind words can build somebody up and cruel words can tear someone down. In these days of political correctness, it can be confusing to know which words to use. Should we say “a person with autism” or “an autistic person”? There are strong feelings on both sides of this argument. Some people might insist that we should take a person-centred approach and say “a person with autism.” There is merit in this view. It puts the focus on the person and not on whatever condition or disability the person may or may not have. It is respectful, polite, positive.  

On the other hand, some people with autism are now proudly claiming the word autistic as a central part of their identity. They see their autism as a way of being, as core to who they are as a person. Their autism doesn’t just suddenly appear in certain situations or in the presence of others. It’s always there – every second of the day. They think, process, communicate, act and live autistically. For them, there is no other authentic way of being. 

I use both ways of speaking about Dan. Sometimes I say Dan has autism. Other times I say Dan is autistic. In the early days, I probably tended to lean towards using “a person with autism.” But the more I have learnt about autism and the more I have come to understand the way Dan ticks, the more I see autism as being central to who Dan is. 

Dan’s autism is not an additional extra. It’s not like a layer of icing on a cake. You can’t lick it off and just have the cake. I cannot separate Dan from his autism and nor would I want to. He isn’t a young man who just happens to have autism, but one for whom autism is as natural as the blood flowing through his veins.  It has always been there. It will always be there.

Dan perceives the world in a uniquely autistic way. He relates to and communicates with others in a uniquely autistic way. He processes information and responds to stimuli, people and events in a uniquely autistic way. There is no other way for Dan to be. It’s different. Even entertaining at times. Sometimes it’s mind-boggling. It’s autistic. 

Sometimes we forget that Dan is autistic. I know that sounds a little strange given how much autism is a part of our lives. But Dan’s way of being is so naturally “Dan”, we know no other way. Perhaps the truth is that in accepting Dan for who he is, for learning his language and accommodating his way of being, we are no longer a family with autism but an autistic family.   

I think the choice of terminology comes down to personal preference. I personally don’t mind whether people call Dan a person with autism or an autistic person, as long as they recognise and accept the essentially autistic nature of his being. Perhaps one day Dan will be able to tell us which one he prefers. 

Words do matter but the right for people on the spectrum to choose the words to describe themselves as a person also matters. The least we can do is respect their choice. Having or being – it’s still autism.

An Extrovert in the House

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.

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.

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.

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.

 

 

 

 

 

 

 

Dan the Mailman

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.

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. 

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…

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.

A Sticker for the Ow

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.”

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.

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

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.  

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.

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.

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

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.

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.

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

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.

 

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.

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.