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In a previous post I discussed the struggles my mentally disabled brother, Callum, faces (The deterioration of an infantile). With a steady increase in his seizure activity and challenging behaviour my mother approached me with an idea for a device that after taking in data about Callum's seizure activity, would be able to draw up some graphs to give her a better method of comparing his current level of seizures to an earlier date.

Now as an Applied Computing student at Dundee University this was a project that interested me, firstly for the fact that I knew it would be of benefit to my mother - along with other carers - and for the challenge. I have only just finished my first year of the BSc course making me less familiar with the development platforms available but I am eager to develop this software as an app. As so many people use a smartphone now it would make the software more accessible to the people who benefit from its use.

After brainstorming some ideas with my mother, I have come up with the following criteria:

Required features:

  • Seizure part of device:
  • It must be able to input the:
  • Type of seizure
  • The length of seizure time
  • The length of recovery time
  • Any triggers (if applicable)
  • The surrounding environment as a possible cause
  • Any other notes
  • Record the date and time automatically of the event
  • Take the data and convert them into accessible graphs showing:
  • The frequency of all seizures over a given time period
  • The frequency of a particular type over a given period
  • The comparison of a particular type of seizure with the overall frequency of seizures over a given period
  • The frequency of all seizures at a particular time over the course of a day
  • The frequency of a particular seizure at a particular time over the course of a day
  • A comparison of the frequency of a particular trigger over a period of time
  • A comparison of the frequency of a particular surrounding environment over a period of time

Challenging behaviour part of device:

  • It must be able to input:
  • The length of challenging behaviour time
  • Any triggers
  • The surrounding environment as a possible cause
  • Any other notes
  • Record the date and time automatically of the event
  • Main signs of challenging behaviour
  • Steps taken to try and reduce chance of challenging behaviour (if applicable)
  • If steps taken to try and reduce outburst, were they successful?
  • The severity of the out burst
  • Take the data and convert them into accessible graphs showing:
  • The frequency of challenging behaviour over a given time period
  • The frequency of a particular severity over a given period
  • The comparison of a particular severity of seizure with the overall frequency of seizures over a given period
  • The frequency of challenging behaviour at a particular time over the course of a day
  • The frequency of a severity at a particular time over the course of a day
  • A comparison of the frequency of a particular trigger over a period of time
  • A comparison of the frequency of a particular surrounding environment over a period of time
  • A comparison of the success rate of a particular step to reduce outburst
  • A comparison of the most frequent signs of challenging behaviour

Additional bonus features:
The ability to enable multiple users on a single device through assigning usernames. As many carers work with a multiple of users it would enable carers and parents to use their own personal devices so that a more complete picture is built up. For the purposes of analysis, a psychologist may be given the usernames and password of a particular patient by their parent or guardian. This would enable the psychologist to compare their patients to better suggest a course of action for another family. Also, with a personal profile on the user’s profile, the parent or guardian could enter the medicine and condition that the individual has to enable a comparison for the psychologist of their patients based on medicine to find similar trends. Although it is hoped to have the software available on a portable mainstream device, it is acknowledged that not all families have access to these devices so it is intended for a user friendly website to be set up in order for the parents to input, compare and update the profile information. In order for this to be successful the ability to override the current time and date with one if a parent or guardian is inputting data at a later point after the incident has occurred.

Perhaps in time, with consent of the parent or guardian, a wider comparison may be made from all the input from all devices in order to provide a wider picture to enable carers to try new methods of reducing incidents for the individual. This information would be anonymous and would be in the form of graphs using only the statistical information provided by the carers.

Suggestions
Like I have already said, I am new to the world of coding and development but I have an idea of what I want and am in the process of drawing out screenshots of the software. I would appreciate any suggestions of an approach to develop this idea. If anyone has any other suggestions for more aspects of the advice, please don’t hesitate to comment below. As this software is intended for improving the lives of the family members and providing a means of comparison, I want to include as many positive aspects as possible. My boyfriend, a fourth year applied student, has agreed to assist me with the coding of the software but we would welcome any other help regardless of where you are based. My goal is to make this affordable and accessible to as many families as possible. Watch this space for more information.

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Simply put, yes. Rather than focusing on the limitations put in place by the word ‘disability’ one should acknowledge the capabilities of the individual. At the CAAC Conference this week I listened to the heroic stories of people living with disabilities who were determined to lead full lives. From Paralympic swimmers to lecturers to students who were studying at college to ‘help give back’, there was no shortage of people who were achieving in their lives despite their disability.

Listening to the fascinating and awe inspiring stories from all the AAC users, I felt their sense of joy and accomplishment. With the AAC devices they were given a voice, a way to socialise and work within the demands of society. Some of the late teen/early adult speakers were of much interest to me as I could relate to their ages. That, however, was where the similarities ended. For these individuals every day was a challenge, a struggle to prove to the world that they can take part like the rest of us. Having grown up with an epileptic brother who also has other complications and an aunt who is paralysed from her neck down, I am used to watching people fight for independence in a world that insists that they won't cope but to hear of their obstacles is different. Rather than guessing the feeling of anguish, the AAC speakers explained their methods of dealing with their challenges.

One particular speaker's words stood out to me, after having a stroke and getting what is known as 'locked in syndrome' he was now a wheelchair user. His seminar was focused on the stigma attached to phrases that are associated with disabled individuals. I had never considered the negative connotations that phrases such as 'wheelchair bound' have such derogatory connotations but he talk addressed the restive force that is behind that phrase. Interestingly, this gentleman was working with researchers on the development of other AAC devices and was not allowing his disability to define his life. It's people like this that makes me want to go out and help these individuals to raise awareness of a life after their disability.

Although life may be tough and challenging, just because you are disabled does not mean that you are not entitled to a full life!

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As this was my first conference and I am still familiarising myself with Augmentative and Alternative Communication (AAC) and their devices I wasn’t quite sure what to expect from these three days. I was not to be disappointed…

Having recently decided that I wanted to undertake a career in research and the further development of AAC devices, I was over the moon when the opportunity arose for me to attend the conference as a PA for my client, Alan. Eager to learn more about the field that I had begun to lean towards as a future career opportunity, I couldn’t have asked for more from the conference.

Starting at nine am in the morning we would choose the seminars that most interested us during the day and continue this way until around five pm. The range of talks available to attend was wondrous, from professionals to AAC users to parents who had taken up roles within the Centre for Augmentative and Alternative Communication (CAAC) we were given a wide range of knowledge about AAC. By hearing from all the different groups one was able to gain a wide picture about the progress, internationally, on the development of devices for non- speakers or speakers of limited communication abilities. As a conference, the AAC users who gave us inspirational talks using their various communication devices spoilt us.

We listened to their stories of empowerment which illustrated that despite the boundaries put on their physical and communication abilities, these people had chosen to acknowledge the capabilities within their disability. They had overcome the limitations that society had imposed on them and found a way to lead full lives. From swimmers at the Paralympics Games to teens preparing to develop a support group for other disabled children to people who had gone on to gain University degrees and found new ways of improving the world for disabled people. As an able bodied person, I was left awestruck and inspired by these people who had overcome so much and were willing to share their stories and experiences with us.

Most of the professionals gave talks on the current research on going around the world, but one aspect in particular stood out to me. The majority of the professionals had no computer knowledge and didn’t appear to be building links with any ‘teckies’. As an undergraduate computing student myself, I thought this was a great disadvantage to the development of AAC devices. In a project as important and large as this, to bring a voice to everyone around the world, we need to work as a team. Experience from all sectors of the industry is essential to the success of AAC devices and not acknowledging this could be a critical downfall to the future of AAC. Without people to bring their personal experiences together with the technical background of the ‘teckies’ AAC devices will never reach their full potential.

In addition to the divided work pattern, I found that many people were focusing on the development of devices specifically for AAC users. This is the wrong approach, in my opinion, to take. Developing technology and software on mainstream technology that already exists allows for more inclusion into society for the user as they are welcomed as part of the crowd. Many users already feel the pain from society’s obnoxious exclusion due to their disability; they don’t want to stand out anymore with equipment that makes them even more ‘different’.

In a conversation today with a woman with Cerebral Palsy, we discussed how ‘society does not owe anyone anything regardless of their impairments’. This was an intriguing idea as it suggests that in order for us all to work in society we all have to give and take. Therefore shouldn’t users meet the able bodied half way and be allowed the chance to feel more included in society whilst still being allowed a voice in society. By allowing the user to feel included you provide a better chance at their happiness and ensure a greater unity amongst all people within society, regardless of their communication abilities. This point was briefly touched upon in the conclusion of the conference and I think will become a greater point of discussion in the coming future as people realise the limitations and excessive costs of AAC devices. Through the development of AAC software on mainstream technologies it allows more AAC users to gain a voice as that technology is more readily available and affordable thus increasing the chance of a greater unity within society.

Video link to Alan's talk: http://www.youtube.com/watch?v=xlHuDZrkzbg

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As a big fan of animals, especially the big five, I was ecstatic to find out that I was getting to visit Kruger Park during my stay in South Africa. The four - night experience was not to be forgotten! Upon arrival, I was handed the keys to a massive 11- seater Kombi and wished good luck. Climbing aboard the beast that was to become my transport for the upcoming weekend, I fearfully tried to drive off. Just managing to move forward I was gaining confidence, until we thought we had missed our turn off and would be forced to reverse. Having never driven anything beside my instructor's mini and my little car (Peugeot 207), driving the Kombi was nerve racking enough without the added issue of not being told of the reverse mechanics. In a VW you have to PUSH down and slide the gear stick into 1st gear, rather than pull the stick back like I was used to. A fact that we eventually learnt as night fell when we managed to find our way to the reception of our first chalet. The driving got smoother after that!

It was a lovely weekend with much jovial banter going on between us all. We had some interesting learning experiences with Peter making his first ever fire at aged nineteen! Having a braai (BBQ) for supper each night and making do with the cooking facilities we had in each chalet. It was nice indulging in some of my childhood meats such as boerwors and sipping my favourite wine in it's country of origin - even if the cork did get stuck in the neck of the bottle forcing me to push it right through!

Each day I would take us all on a seven hour drive around Kruger Park, driving the big Kombi. Whilst in the bush we cam upon some exciting scenes: two leopards about fifty yards away from us, many herds of elephants, giraffe, zebra, lions mating again about a fifty yards away from us and lots of monkeys among other animals. We were very fortunate to see the lions and especially the leopards as one can go a decade without seeing one!

Our final adventure within the park was on our way out, about forty km away from the exit and just past the half way point between the exit and the nearest petrol station (gas station) we realised that we had hit the reserve tank. Calling the Kombi's owner to check how far it would take us we were informed that there was a good chance we wouldn't make the exit before running out of petrol. The frightening, adrenaline pumping experience was not one to forget. We made it to the nearest petrol station - just - before starting the seven hour bus ride to the hotel we were to spend the next four nights.

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As we were preparing to land in Jo’burg I felt this sense of belonging and homecoming; after nearly two decades I stepped foot in the city in which I was born in for the first time. Chilly as the weather was, I was a Cheshire with the lightest of steps. After all this time, I was finally allowed to see where I had taken my first breaths. I was home.

As I was travelling with Alan who had a disability we were rushed through customs, which meant that we missed the queues. Giddy with excitement, I kept looking about in an attempt to feel some connection to this city. After arriving at our hotel, piling more layers on, we decided to head into Sandton. This was the area of Jo’burg that I was actually born in and hadn’t expected to see it so was unable to contain my joy as this plan was confirmed. On route to the mall we passed sights familiar to me from my childhood; townships, African people at robots (traffic lights), shops advertising biltong among other things. It was as if I had returned home.

Sandton is an exclusive area which lead to the Nelson Mandela mall being filled with boutiques and jewellery shops that one could see in most big cities worldwide so didn’t pose much fascination for us. It was so interesting to finally see the mall in which my mother walked in whilst waiting for me to be born, apparently I was stubborn and didn’t want to be born. Although I left this country as a newborn, I have this unexplainable bond with it. Some of the views were quite remarkable but not quite as breath taking as some of the sights I had seen in Scotland.

We caught the Gautrain back to our hotel, basically a little underground and over ground train that went between some of the nearby areas. Having been built for last year’s World Cup it was amazingly clean and the staff very helpful. It was an interesting trip which both illuminated some of Jo’burg’s exclusive and poverty stricken areas showing a country that had a mixture of classes with class ceilings more distinct than the British Government would have allowed. As with so many cities, it often had the exclusive areas bordering with the poorest, but it felt like home and I couldn’t have wished to be anywhere else at that moment.

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Many of you, although knowing me rather well, do not know the eldest of my two younger brothers. Callum is a seventeen year old who was diagnosed with Lennox-Gastaut Syndrome when he was four and a half years old. Before the doctors got his epilepsy stabilised, our lives were turned upside down.

Callum started off having what is known as a 'drop attack', where his body would be flung backwards and he would often hit his head off the ground. These seizures were often quite dangerous to him and led to many stitches on a single patch of his head. That patch has now been made hairless due to the significant amount of times that he ended up splitting the skin open. We went through endless nights of bad seizures, stages where Callum had to permanently wear a bicycle helmet on his head to reduce the damage and endless trips to neurologists, doctors and the hospital.

I've grown up with Callum having LGS and watched him rise and fight his syndrome when he was moved out of mainstream schools into private home schooling. At around nine years of age he was relatively stabilised, as much as would be expected, and despite the fact that he has a retarding epilepsy he was doing okay at school and life. Then we moved to America. There was no more home-schooling, he struggled in mainstream classes with 'special help' and started having a new type of seizure that was potentially fatal. Non-convulsive status epilepticus, a seizure where the person slips into an almost coma-like state. Callum would sometimes slip into these states for several hours, something that really concerned my mother. Anyway, Callum and I moved to Dundee, Scotland to live with our father where we lead a considerably more routine based life. This was what Callum needed. He managed to get into a special school for children with special needs. In his class of around six people, Callum did well. He even managed to gain some minor credits towards his standard grades (O Levels/GCSEs). Due to the fact that his epilepsy is a retarding condition his mental age has been an average of around six or so years of age. So, Callum was improving. His seizures were becoming more managed and although he had peak of challenging behaviour he was appearing to stabilise. Then everything changed.

My father passed away suddenly when Callum was nearly fourteen years old throwing him into a world of confusion and distress. Combine this event with puberty, a change of routine due to my mother and younger brother moving in with us and a new school all within the space of one year. A single one of those changes would be hard for an able bodied person to cope with at his age, but his autistic characteristics and traits of the LGS made Callum's (expected) deterioration to increase at a much faster rate than was expected.

In the past two and a half years since my father's passing, I have watched my brother increasingly become more confused, isolated and withdrawn as his challenging behaviour becomes a threat to us and those around him. As LGS is such an uncommon form of epilepsy it makes it hard for my mother to compare Callum to other children and the fact that he also exhibits traits of autism makes things even more complicated.

It's emotionally pulling to watch as Callum forgets how to carry out the day to day tasks, forgets how to play his favourite sport and just generally struggles to cope with society and life itself. As I watch how other people treat people with disabilities in such poor ways I get frustrated and angry. I must confess that part of me is glad that Callum's life expectancy is lower than that of the average British person as it is my hope that he will not have to endure the comments directed at these people form whom each day is a battle. In his own little world Callum is content and oblivious to his deterioration, much like an elderly person he is fading back into the dependent state in which everyone is born. For now though I am simply thankful that although his deterioration and ability to cope is hard to miss to the external world, Callum is relatively content to live his life in a world that fades with each passing day.

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Earlier this evening I took Alan - the guy I care for - to visit an old friend of his in Edinburgh. Like Alan, his friend, Shiela also has Cerebral Palsy but her ability to communicate and be active is not quite as limit as Alan. I had met Sheila and her partner before but this visit was different, I saw her in a new role. As a mother. She has an eighteen month old toddler and despite how Sheila has two Personal Assistants she still takes an active parenting role with her youngest child. I watched with awe as she played with him on the floor, changed his diaper and put him to sleep. If you overlooked the slight jutter to her movements, the walker by her chair and the time taken to carry out the activity at hand you would almost forget that Sheila had a physical disability. More and more as I work with people like Sheila and Alan I become more awestruck by their continued ability to strive for a 'normal' life despite their obstacles. They truly do set an example for the rest of us that (you can succeed) if you really want to!

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Last week my boyfriend and I spent the week with his family in two quaint little country towns. Still new enough to the beauty of Scotland and northern England I drove to the various areas with eyes wide and a bubble of joy bubbling within me. Although most of our journey was along the main motorways, we veered into the beautiful rural areas where I wasn't disappointed with the scenery. For those of you unfortunate souls who have not experienced the often fairytale like appearance of the country, you have not lived. It is really no surprise that Scotland and northern England are used for well respected films such as Harry Potter and television series like Dr. Who. With rolling hills whose natural creases show both their age and the changes to the landscape over the years. The deep green trees create a texture and the illusion of a hairy hill. The scattered farm animals lazily graze with the occasional one reaching over the fence for the longer, less tasted grass as they too want to try something new. Passing over the glens I spied the grassy desert that stretched further than the Roman straight roads covered. Scenery like this may bore others who crave the busy rush of the city life, but I love driving along the roads and seeing the slopes and falls of nature's base.

Our little trip was not without its challenges as we fought with the Sat Nav (TomTom Fail!) and ended up in areas that weren't that suitable for a car, especially one as low as mine! On these little detours we cursed and swore at 'Julie' - the name that Andy gave my Sat Nav - but she showed us some pretty views.

During our break we spent two weekends at Allendale town and five nights at Bankfoot, both beautifully quaint villages. In Allendale town we resided at Andy's grandfather's house whose bank sloped down into the embankment of the village's little stream. Taking Chloë - read Playing 'mummy' for a week - for a walk around the stream we burned off some energy. Strolling along the sandy path we brushed aside the overgrown vegetation and proclaimed our victory as we scampered down the little rocky path to the water's edge. As it was a beautifully sunny day we let Chloë paddle in the water in her top and underwear but very promptly she stripped naked and proclaimed that she could 'now swim like the little fishies'! We couldn't help but laugh.

Our time at Bankfoot was spent mostly outdoors when the weather was permitting. Chloë and I enjoyed collecting the freshly laid duck eggs from Andy's mom's ducks. Being a city girl the little country routines are still enjoyable to me. On the first morning that we collected the eggs, Chloë happily thanked the ducks for the eggs before finishing off with 'I go eat your egg now '. She hadn't quite realised what the egg was...

It was a lovely time away that allowed me to get to know Andy's family better and see some of the beauty that Scotland and northern England have to offer.

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This past week my boyfriend and I have spent the week with his three and a half year old daughter, Chloë. It was an interesting, although challenging week. As this was the first time I had ever met Chloë and Andy's (soon-to-be) ex-wife it obviously provoked some feelings of unease within me. Although I was well aware of Andy's past before we got together, actually seeing that side of his life made it real. Don't let my post title fool you, although taking on the maternal role for the week I have no intention of ever replacing Andy's wife's place in their daughter's life. Coming from a broken home myself I know what it's like to have an intrusion of a parent's partner invade your household and would not expect to be seen as Chloë's mother in any form. I wasn't sure how I would react to Chloë, or more importantly how she would react to me. What I didn't expect was her seemingly instant 'approval'.

Just before we were to take her home to her mother, we met up with Andy's cousin whose daughter -- Lexi -- was nine months younger than Chloë. In her cute socialising way, Chloë proudly introduced us as "my daddy and my Heather". It was times like these that the maternal side of me lit up. Kids never fail to amaze me in how quickly they accept new situations and although Andy's and my relationship is still new, I could see myself accepting Chloë as a daughter figure even if I would never expect her to see me as a maternal figure in her life.

This week was an eye opener in so many ways. As a young woman approaching the end of her teens and aware to officially join the 'adult' world certain feelings are arising so it's natural I have considered a family in the future. Frequently I have been told of the maternal nature I express towards my friends and family but more often surprise them when I confess I am not entirely sure if I see children in my future. Somehow the white picket fence image doesn't fit with what I want from life but when it comes to children I get mixed feelings. This past week I felt like I was Chloë's main carer and spent many hours supervising, negotiating and attending to her which was both tiring as frustrating. With my brothers grown up now I had forgotten how tiring young children were - especially when they're on the brink of discovering some independence. Most meal times were a negotiation, dressing had to be a game and don't even get me started on bath time. The first time Andy and I tried to get her to shower we simply mentioned the word and she screamed the place down for the next ten minutes. After making us feel like we were torturing her, once we had finished she proudly claimed 'Chloë all cleaned now'. Sigh, how could we be mad at that? Chloë definitely taught me a lot about myself this week and made me respect my mother more!

Despite how much I hated the early starts, the tears and the patience needed to get things done; Chloë was the sweetest little child. Sociable with everybody and very affectionate. She showed me that I could cope being a mother despite the challenges of raising a child entails. Perhaps in the future I may be more willing to fully consider the idea of starting a family but for now though I am quite content on handing the child back to their parents and heading back to my less complicated life.

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Alone upon this earth we walk,
invisible our pain to those around.
I step towards the light-
stumbling all the way.

You have returned once again,
slicing into an old scar.
It was healing, but
now it weeps.

Helpless I am to the emotions;
a stream of memories,
the loss of you.

I fight the salty streams,
hiding amongst the sea-
they shall not know.

They will not know that I,
I have fallen beneath once more.

Crumbling tongue why don’t you speak?
Cry for help, I beg you.

I beg you,
don’t let me fall again.

            © Heather R Ellis

June 2011