My child isn’t just naughty – look at their diagnosis.

It has been a while since my last blog about discrimination and living with a medical condition so I thought I would write one this evening. Lately I have been thinking about how quick society can be to judge, practically when children seem to be “acting-up”. People can sometimes assume they are a “spoilt child” and that their parents are “bad parents”. However, not many people realise that some of the time children cannot help being naughty, it is to do with their medical condition.

I am not by any means suggesting that this is everyone or that it is necessarily their fault. However, more could be done to educate people about medical condition and the effect they can have on behaviour – something which is often overlooked.

Most people are aware of condition such as Autism or ADHD which can cause children to seem to “act-up” and ignore authority. However, lots of publicity on these conditions and increased education about the behavioural impact of them has led to much more understanding. Although, from the outside a child, particularly if young, can seem to be having a tantrum, often just a quiet word from a parent to say that they are autistic can divert stares and whispers. One carer I recently talked to said that when the young boy they were looking after had an autistic melt down one woman came up to her and asked if there was anything she could do to help. Although there was nothing she could do, the kind gesture seemed to make the situation much easier to cope with.

However, it is not just the “typical” condition which people think of which can cause a behavioural impact on children. I remember my sister once having a hypoglycaemia attack at the local leisure centre when I was there for a swimming club session. As a young child, probably about 7 or so at the time, hypos could cause her to have dramatic mood swings and over reactions causing her to shout or be generally uncooperative. This one particular time her blood sugar level had dropped quiet quickly and she was beginning to “act-up” as it seemed to an onlooker. Although, my mum was sorting the situation by giving her sugar etc. one woman made a comment saying “can she not control her child?” naturally, this really upset my mum. As a parent of a child with a disability or long term medical condition not only was she faced with the medical side but also the stares and comments from others who didn’t understand her situation.

Another condition other people not initially think of when looking at behavioural impact is epilepsy. Epileptic seizures come in lots of different forms, simple partial seizures can occur when just one area of the brain is affected and the sufferer is still fully conscious. Psychic symptoms can be caused by this type of seizures, causing intense feelings of range, happiness etc. Having seen these types of seizures first hand, if you did not know the circumstances a child having one of these seizures may seem to just be “causing trouble” and acting aggressively to others. However, it really is something they cannot help.

Overall, although often people can pass comment about a child “acting-up” when they cannot help it, the main reason for this is lack of understanding. I really think that educating people when these situations come up can really help, more times than not people do want to help they just don’t fully understand the situation, and if they do they do not know how to help. I believe, like with a lot of things, education is key; raising awareness of the behavioural effects of “common” medical conditions could really help the general public to understand what they can do to help!

Spending the Summer with young people with disabilities

Last Friday marked the end of the 4 week summer holiday scheme ran by a local charity supporting young people with disabilities. I have been involved with the charity for just over 2 years and love every minute of it! This summer was no exception! I cannot believe this summer’s events have finished.

I always find it such a privilege to work with such remarkable young people and when working in this environment you really do learn something new everyday! However, I would just like to reflect on some of my experiences this year and how they have impacted me.

This year I was given more responsibilities when working with the young people, and was lucky enough to work with some of the young people with more complex medical conditions or more challenging behaviour. One of the more difficult things I have faced this year is dealing with seizures. In the past I was working with a young person with severe epilepsy there would always be someone more experienced with me, however, this year was my first year as the more experienced person! Naturally, I was quiet nervous with this extra responsibility, however, I found after a while I began to find it easier. I spent quiet a bit of time working with a young lady who has very severe epilepsy and, as a result, she has to constantly wear a soft helmet to protect her if she suffers a seizure. When I was working with her she unfortunately suffered a couple of different types of seizure. However, the type I found most challenging was a “drop” seizure, where she would drop to the floor and remain unresponsive for a period of time. At first I found this quiet frightening, however, I soon realised how much more scary it must be for her. It really encouraged me not to panic and just to reassure her that she was ok once she came round, and also to allow her to sleep after a particularly long episode. It also helped me to remain calm and explain to other people what was going on and why I had to record the time etc in her notes and inform a more senior member of staff of the nature of the seizure.

On the other end of the spectrum something else I found particularly challenging was behaviour, particularly when a young person may lash out and hurt you or someone else even when they don’t mean to. When I first began to work with young people with disabilities I found it very difficult to understand why anyone would hurt someone else when they didn’t mean it, however, working with the young people has taught me that often they really can’t help their actions in all cases. For me personally this was illustrated to me by two young people this summer. The first young man became very agitated when I was working with him, this escalated to the extent that he began to “lash out” and target another young person. Although from the offset it would look like he was just being violent, he suffers from an epilepsy disorder, and often “angry thoughts” are caused by seizure activity. The second young man I worked with has an autism spectrum disorder and very limited communication. As a result he can often become frustrated and pull on your hair of hit out towards you. However, all of this is often due to the frustration that you cannot understand him or visa-versa. Although behaviour like this may be challenging and difficult at the time, on reflection you really can’t do anything but forgive the young person as they really can’t help it.

Overall, I feel working the young people with disabilities can be challenging it is one of the most rewarding things anyone can do. I really believe that the young people teach me something new every time I see them. It has also taught me two really important lessons in life; 1. to sometimes stop and look back at what you have achieved and be proud; 2. to be thankful for what you have as there is always someone who is less advantaged than you.

Little Achievements

I have just found this post from my previous blog which I wrote during AS exam season. Although the time frame may no longer be relevant. The content is still very true today.

Over this past week I my life has seemed to consist mainly of revision sleep and eating -a feeling I imagine most 6th form students can relate to. However the drive which keeps you going is your end point, your goal and for me that is medicine!

Yesterday however really reconfirmed everything that I want to do. I started the morning with assisting to teach a group of young swimmers. Some of this swimmers could not swim at all when I first met them a few months ago, but to see how well they have improved never ceases to amaze me. There is one young girl in particular who would not even walk backwards in the water, let alone swim on her back! However yesterday she had the courage to swim backwards with just one float, and where she could only just stand up – if you ask me this is one major achievement!

The other little achievements of the day came from the voluntary work I do. With this kind of work major achievements come in many different forms but I would just like to share a few with you.

There is one young man who uses the service who is partially deaf. When I first met him two years ago he didn’t speak at all and used very limited sign language – however yesterday while playing bowling he was cheering with everyone else and he is now able to hold a conversation.

The other major achievement came when swimming with the young people. Yesterday I was swimming one on one with a lovely young man who I have known for quite a while. He can swim but is much more interested in playing catch and who can blame him! However yesterday between myself and a staff member we persuaded him to swim so as he could then play with the ball. To begin with he was rather tentative and wouldn’t leave go of me once he was out of his depth. However once we were in the deep water he swam beautifully on his back. This was such as major achievement – made all the better as his mum was there to see him!

I suppose seeing the difference you can make to people’s lives makes me all the more determined to become a doctor. I understand that there will be good days and bad days but in the words of a friend who is a GP “what other job can you do where every one in a while what you actually do makes a direct impact on someone’s life”. To me this is what making a difference is all about – celebrating those little achievements and realising that something little to you can make a huge difference to someone else’s life.

Communication

Through my work with young people with disabilities I have had to use many forms of communication including basic Makaton, body language, general conversation and eye and hand pointing. However one of the most challenging things I have faced is how to know what some young people want/need if they have very limited communication.

A couple of weeks ago I was fortunate enough to work with a lively young lad who has quite severe autism, with no verbal communication and very little sign communication. While swimming with him I was aware that he was not happy – I cannot say how I just got a sense. He subsequently tried to get out of the pool, however myself and other volunteers persuaded him back in. 10 minutes later he again wanted to get out; this time I realised that he wanted to go to the toilet – again I cannot pinpoint why but he was becoming rather agitated by this time.

However, as I had not fully understood him to begin with he unfortunately had an accident. As anyone can appreciate this left him very agitated and upset, so he unfortunately was unable to continue with the swimming session. On reflection, if I had understood what he wanted to begin with this may have been avoided, but it has really opened my eyes to the importance of communication – whatever type of communication this would be.

Another alternative form of communication I have used with young people is communication aps on I-Pads. These allow the young people to find a work from a bank of words split into different categories. They also allow a “diary entry” and “friends” so more words can be added. I have found these so useful, in particular when I am not familiar with a sign a young person has used.

I feel that through my work with the charity I have become lot more aware of what different forms of communication different people use, and how it is important for us to appreciate this, and be accommodating to different people’s needs. This in my opinion is not just vital in careers like medicine but also in daily life!

Links between Epilepsy and Autism

The other day while surfing the internet in a revision break I came across an article explaining the outcomes an investigation by Dr SallyAnn Wakeford for the Department of Psychology at the University of Bath. Her investigation revealed that adult which suffer from epilepsy have a greater chance of expressing traits typically seen in people with autism and Asperger syndrome.

It is thought that the way in which epileptic seizures affect the brain can disrupt the neurological function responsible for social functioning in the brain, resulting in traits such as impairment in social interaction and communication and restricted and repetitive interests, characteristically seen in people with Autism. The research “links social difficulties to a deficit in somatic markers in the brain” which explain the social difficulties which are normally under-diagnosed mainly due to the lack of a theory to explain them.

These traits were most apparent in adults with Temporal Lobe Epilepsy, however it is thought that this may be because these can be more difficult to treat and anti-epileptic medication is normally less effective on this type of seizure.

Of all the volunteers within the investigation all showed some degree of autism traits. However it could not be confirmed if these were due to “a typical developmental periods during childhood” or if they were “predisposed to having autistic traits before the onset of epilepsy”.
It is thought that these new links could help reduce the “social stigma” which surrounds epilepsy and that sufferers of the condition may have better access to services and there is a much wider range of treatments for people with autism conditions.

The hope it that it will also lead the way to more research and understanding of links between epilepsy and other conditions such as autism spectrum disorders.

(Source Bath University)