Category: Family

Author Published on Leave a comment

Late last summer I began considering how best to tackle a challenge posed to me by my mother. A challenge to develop an app for my brother ( An aid in a diminishing world ). Due to university coursework restrictions and constraints, after my intial brainstorm back in August I have only just now been able to create a low-key prototype in the form of sketches. After working alongside my mother to create a set of requirements, I have now attempted to put those functions into a visual representation. Following a user-centred approach I will be working alongside my mother and other individuals to help develop this app into a useful aid for other carers of people like my brother ( The deterioration of an infantile ).

Homescreen of app
The main homescreen

As of yet I have not designed a homescreen and keeping with the process of user-centred design I have not begun coding until I am sure that what I am designing meets the needs of my mother, the 'client'. From the start I wanted this app to be a clean, simple to use application. Most of the users will be in situations similar to my mother and will be a carer 24/7. Any moment spared will not be spared updating the details of the app if it is a lengthly or confusing process. As a result, I have decided to try and make this a binary process as much as possible. By separating the 'Seizure' and 'Challenging Behaviour' logs I will be able to speed up the update process. As you can see on the homescreen here I have just a handful of buttons.

Adding a new seizure menu
Adding a new seizure menu

Likewise, the input variables when adding a new seizure or challenging behaviour incident should be clear and concise, representing only the main options that users will need. Wherever possible, drop-down options should be available to minimise time spent adding a new incident. Creating two colour schemes is hoped to help the user identify which section of the app they are currently in making them less likely to incorrectly add an incident. With regular feedback the user will be able to understand any errors or issues that may arise. It must be noted that some of my scrawled notes relating to buttons on screen are merely brainstorming ideas that I have included.

jTrack challenging behaviour graphs
Track challenging behaviour graphs

Finally, the main goal in designing this app is to allow to user to clearly identify the main seizures and their frequency. By providing a concise graph that shows the output of the data entered by the user, they are able to see the trends of various individual seizures against time or against the total number of seizures. It is thought that a line graph may work well but the meeting with my mother will confirm whether this is the ideal form of output.

Although I am fully aware that this app only acts as a method of creating graphs, something that any spreadsheet could do, having this app on a mobile platform will enable the user to have more accurate and up to date information at their fingertips. My mother has expressed a hope that this will help her to monitor my brother's level of seizure activity and challenging behaviour more efficiently. It is my hope that I am help make this a reality for her and others in her position.

2

Author Published on 2 Comments

He's deteriorating more rapidly than we expected. Each day I spend with him is another day that I see him slip that little bit further away from me. My brother, the last biological link I have to my father is fading. More and more I see him confused in his surroundings, unable to dress himself or, at times, even control his bladder. It's hard sitting by and watching my seventeen year old brother sitting slumped over in the chair, shaking so hard that he is unable to hold anything. To have to help feed him at times because he cannot managed holding the fork by himself. Granted, these are the worst days that I'm describing but each event has happened in the last week.

With a hospital visit already in the last couple of weeks and one a possibly on the cards last night, I'm wondering how much longer my mother can handle the stress and emotional turmoil that this is creating. How my mother can continue to spend most nights checking hourly on my brother whilst remembering what is going on in my life and still managing to spend time with my other brother I do not know. With talks on the table of long stays in the hospital for Callum to have an EEG to finally get to the bottom of his deterioration, I'm wondering how much longer Callum will continue to manage things on his own. I just hope that he stabilises soon as what he is currently doing is not living. Well, except on the occasional bright day of his.

Author Published on Leave a comment

Last month I was visiting two of my dear cousins in Texas. Having grown up with them since I was aged four, they are more like siblings to me than distant cousins. Being similar ages our lives are often similar 'chapters' and this past visit made me think quite a lot about the current stage of our lives.

At aged eleven and nine (Craig) we had big hopes for our futures when we first left Zimbabwe and moved to America. Having returned to the States three times since leaving I have felt the change in all of us towards our career paths. Each year our plans would get more detailed and centred around a more specific area. In so many ways, our family has shaped us and the career paths we are currently pursuing. Our original goals for our careers have changed quite considerably since our arrival in Texas but what stood out more from the visit was that we had finally reached the next chapter of our lives. During my two-week visit the 'next stage' was frequently brought up in conversation. With Kirsten and I at University now and Craig due to start next year it was no surprise really but it seems like only yesterday we had high hopes for the future that seemed like it would never come. Well, we're in that 'next stage' zone now.

At aged nineteen, I am now thinking about post-university life and thinking of possible positions I can undertake as a career. Thinking back to that young, naïve child eight years ago I realise just how far I have come. I'm not sad to be growing up, our lives are just getting more exciting but part of me misses that mystery of what I pursue as a career. Not that what I want to do is set in stone, it's just that time seems to be speeding up and already I can see the pages turning as the next chapter of our lives are in sight. I guess I'm just surprised how quickly we have reached this stage as I wonder what the next stage of our lives will bring us.

Author Published on Leave a comment

Earlier today my cousin - Kirsten - and I were swimming out in the Gulf of Mexico, just off the coast of Port Aransas. Just as the shore begun to get to small to see we decided to begin swimming back to shore on our boogie boards. Glancing up I realised that we could see my uncle and other cousin - Craig - on the shore and noticed my uncle waving at us with his arms. The next thing, Craig joined in the waving too. Kirsten and I guessed it was just time for lunch when suddenly I noticed Uncle Roland frantically pointing to our left. That was when we saw it.

This sharply pointed fin swimming in a straight line, a mere three hundred yards from us. Kirsten shouted 'shark' and we began frantically swimming towards the shore. Adrenaline pumping, heart trying to burst out my rib cage and mind convinced that we weren't moving at all. Feeling like we were doomed I kept telling Kirsten that I wanted to live, Kirsten just kept telling me we had to move faster. Watching my uncle and Craig swim hastily towards us, leaving my aunt on the shore clueless as to what was happening my worst fears were confirmed. We were swimming in open water too deep for even me to stand in with a shark within danger's reach.

Finally we all were together and in knee-deep water but still eager to get out quickly, baby sharks were known to swim in that depth of water too. Just as we thought we were fairly safe, my Uncle yelped in pain and stumbled.

Not knowing what had attacked him and with emotions already on a high we continued on our hurried pace to get out of the water. Never before had the shore seemed so far away. My uncle was now limping, stumbling and very clearly in pain. All sorts of horrid thoughts were running through my mind and I half expected the water around his leg to turn red signifying the worst. Suddenly my foot brushed up against something slimy and hard, screaming I scared my cousins to move even faster than we already were.

On land at last, my aunt was frantically asking us all what had happened. My uncle's foot had a large puncture wound on it that as bleeding quite a bit. Thankfully Kirsten and Craig are both training for medical positions and had fairly advanced first aid skills. Upon returning to our apartment everyone dashed about trying to attend to Uncle Roland's wound which we had concluded was a sting ray puncture wound. After a while the wound began to heal nicely making us all relax a little bit.

I must say it was a frightening experience but not one that I will forget in a hurry. Although I may think twice about where I go swimming next time!

Author Published on Leave a comment

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.

3

Author Published on 3 Comments

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.

Author Published on Leave a comment

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.

Author Published on Leave a comment

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.

Author Published on Leave a comment

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

Author Published on Leave a comment

Currently I am on my way to London where I will I be stopping for a night with my grandparents in Woking before continuing my journey tomorrow to Wales where I will be staying with my great-aunt whom I have not seen in eight years.

The total journey time for the entire trip is about twelve hours, not including the waiting time or accounting for delays. As I am used to travelling it’s fine, but I have forgotten what it’s like travelling with children. Part of the purpose of stopping in Woking is dropping my youngest brother off with his father, which means that I have the joys of travelling eight hours with him. So far, he has gotten himself totally hyper and won’t stop talking; he got bored so tried to amuse himself by laughing and giggling (for no apparent reason!) for a good five minutes and decided he wanted to play a game of scrabble on my phone. What I have learned from this:
• My brother needs to learn what a library voice is and that just because you’re not in a library doesn’t mean
you can’t use that voice (yes, he did argue this point!)
• If you offer a nine-year half of your Lindt egg (just after he has eaten your extra one) he will still says yes.
Although to his credit he did hesitate and ask if I was sure on both occasions.
• Lastly, if I were to play Scrabble with him, there’s a chance I might loose!

Once we have completed this leg of the journey we will then catch tubes (underground trains) and (overground) trains to Woking station where Shaughn will have completed his journey until we return home, and I shall pause my travels for a night. I’m aware that passing through Kings Cross is going to be havoc, but thankfully, for all my complaints of Shaughn (my youngest brother), he is mature enough to stay by me and not get lost which makes things easier! Ah well, seeing my family in Wales will make all the travelling worth it in the end.