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.