Tag: caring

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* Note: Names of AAC user have been changed for privacy

Abstract ( 103 of 150 words max)

My personal outlook on the role as a carer or support worker for a gentleman with Cerebral Palsy and limited motor skills is that it has been an enriching experience. Since we have been working together, I now view society in a different way and am more aware of its prejudices towards those with disabilities. I believe that my time spent with the gentleman has taught me how better to interact with someone with limited communication helping me to understand their daily struggles whilst, it is hoped, helping him to allow society to interact with him the same they would with anyone else.

 

Proposal (960 of 1000 words max)

As many students do, once I had settled into university I began looking for a part time job. Shortly, an offer came along that was perfect. A gentleman with Cerebral Palsy was looking for a part time carer to assist him during the week in social activities. My interest in society attracted me to this position but I was not prepared for what I would gain from it. Although initially nervous, I quickly realised that Harry (name changed), despite having different needs to myself, was no different. Having grown up with a intellectually disabled younger brother and a quadriplegic aunt, socialising with people with different needs to myself was something I was used to, however Harry’s needs were different .For the first time I would be socialising with someone who could not communicate in the standard way, something that made me wonder how I would possibly be able to communicate with him. That was when I first came across the world of AAC.

 

Alternative and Augmentative Communication (AAC) is the term given to any other means of communication besides oral communication. The range of devices is quite vast depending on the individual’s needs. Some of the devices can be rather high-tech but Harry’s main form of communication is a word-board. Despite how low-tech his ‘voice’ is, it gives Harry the freedom and independence he would not have had otherwise. Working as a carer for Harry, I have observed that having a potentially isolating disability does not have to result in being excluded from social interaction. From giving talks around the world, being a three time-Paralympic swimmer, making his own music and assisting research students to develop AAC technologies, Harry is an inspiration to many people, myself included.

 

When we are out, I have noticed that Harry and I get two main reactions from people. Either, I am looked to as an interpreter as Harry is ignored; or the person – with every good intention – over tries. Having grown-up with being treated differently, Harry often accepts it but I struggle with society’s attitude more. I must confess that at times, when unsure of how best to approach a disabled person without causing offense, I have let them pass in the shadows. Many people have been guilty of this at some point of their lives. Working with Harry has made me realise that the best way to approach someone with a disability is, for the most part, just converse with him or her as you would any other person. Being a carer means that I have the chance to help society see disabled people as they would any other person.

 

At the CAAC Conference in South Africa last year, an AAC user talked about the stigma attached to disabilities. His discussion on terms like ‘wheelchair bound’ was interesting, as I had never given much thought to them before. The terms often have a negative connotation that isolates the individual rather than embrace the freedom the item gives a user. The same gentleman, for example, told me off for talking too much and not letting him have a word in! Often I am reprimanded for this for but without his AAC device, the gentleman would not have had the opportunity to express his opinion. Therefore should we not call these devices empowering as opposed to restrictive? The conference showed me that AAC users are proud of their ‘voices’ and, regardless of the stigma attached to their disability, they would continue to strive towards becoming more of an integrated part of society.

 

Many people, upon observing the interaction between Harry and I, assume we have been working together for much longer than we have. The human ability to adjust and adapt has always been an interest to me and being a carer has shown me that when you want to achieve something, you can. I believe that Harry and I are able to hold a conversation with a normal conversational flow, something that I would never have thought possible in our first meeting. Often in life we walk by those who are different without taking the time to stop and listen, I’m not letting my work with Harry be one of them.

 

After the conference we visited Cape Town, South Africa, I am reminded of a steep path curling its way upwards to the sky at Cape Point. At the top of the hill was a lighthouse overlooking a point in the sea where ‘two oceans met’. Since our arrival in South Africa, we were told that if the day was right the view was amazing. Looking up at this hill we decided that it was too steep to use the wheelchair but how could I deny Harry the right to see something that an able bodied person was allowed to see? Unsure as to whether the walk would be too much for him, we started out on the half a mile walk. The walk was slow, my breathing heavy as I supported Harry.  Trudging on, we ignored the people overtaking us. Harry was determined to reach the top and why should he be denied that? Finally, a broadly grinning Harry reached the top. He had climbed his Mt. Everest. The never ending optimistic attitude that he expresses always amazes me and after only a year of working together, I think of Harry as a friend. Whatever title you attach to my position, be it carer, personal assistant or support worker is irrelevant. I have the fantastic chance to work with someone who sees the sun through the rain. To me, this is what it means to be a carer, getting the chance to learn from the person you are working with just as much as you are helping them to lead an independent life.

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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.

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With spending more time with Alan and working with the AAC research group at Dundee University has made me more aware of how society cowers away from 'different people' like the AAC users I work with. Disabled people are not a different species, just a different brand of people. Speaking to them is really no different to talking to your friend or colleague - there really is no art to it!

For those of you who really don't believe me, here's some easy steps to follow that may help you realise just how similar it is.

  • Step 1: If someone is with them, watch how they talk to the individual as it gives you an indication of understanding and langage level. If they speak in simple language terms, follow step and do the same and so on.
  • Step 2: If the person is using a device, be patient and give them time to talk. Talking too soon creates a monologue with yourself and you're excluding them from the conversation. Trust me, most individuals love to talk!
  • Step 3: Didn't hear or understand them the first time? No problem, most individuals don't mind repeating what they've said as they'd rather be included and repeat themselves than be excluded.
  • Step 4: Remember that having a disability can be frustrating and that most individuals want to be able to talk to you as anyone is society does so just relax and enjoy a quick (or long!) chat with them. You may even be surprised to find out that you have something in common!

 

It really is as simple as that. Go on, try it, even if you are just doing it to prove me wrong. You may be pleasantly surprised.

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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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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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Today I was working. Now for many of you that conjures up images of bar staff, office jobs, warden duties and so on. However, what I was doing today was something different. I was helping, or caring, for Alan, a man who has Cerebral Palsy. I have mentioned him in a previous post, You can succeed.

Anyway, today we were going up to Aberdeen where he was partaking in a Boccia competition. Everyone participating at the event was disabled in some way, although some were less noticeable than others. Throughout the duration of the competition several competitors approached me and were engaging me in conversation, a task for some of them was a great challenge. As I watched them make their round around the crowd that was there, chatting away to those they recognised I felt slightly self conscious. I was a new face among a group of people who frequently met in competitions. As some of the competitors stared at me I thought about how society often stares at them and judges them for what they are unable to do. These people are determined, self motivated and totally normal people and it really riles me up when I hear people call them horrid names.

It was an interesting day that was very revealing about the way society works. For all those idiots out there who ridicule others and call these people names they do not deserve, I'd like to see you battle every day the way they do!

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Recently I found out that I have been given a fantastic opportunity to go to South Africa for about two weeks. I will be working with Alan as he is going across to do some talks in some of the primary schools. It should be very interesting. The best part though is that I finally get to see my country of birth, on an expenses paid trip! All I have to do is sort out meals etc whilst I'm there, and I'm rather looking forward to tucking into all my old favourites..

To say the least I am rather excited about the trip, even though it will still be winter there when we visit it'd probably still warmer than Scotland will be.

Oh, July, please hurry up!!

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About three weeks ago I started caring for a forty-year old male who has Cerebral Palsy (CB). Now, there are various levels of CB and he has a medium level in terms of communication, movement and dexterity. Alan, my client, can communicate using a board known as a Bliss Board, which has some common words on it. This makes communication slow, but not impossible. He can walk with the support of someone’s arm or his walker, although patience is required in his speed. Alan is able to use a computer, but again, it is just a slower process. Basically he is able to most of what you and I can do, just at a slower pace.

What I have noticed is his determination in life and his unstoppable quench for new things. Despite his limited mobility, Alan leads a very active life. He has partaken in several Paralympics across the world for his swimming and done rather well, he gives speeches about overcoming challenges within one’s life and keeps busy with all sorts of social activities.

Working with him has taught me that you can succeed if you refuse to let yourself sink into self pity and accept the obscure box that society tries to fit you in. With work and determination, you and succeed.