I am hosting a guest post from a friend and a parent of a child with ME, quite a powerful post but one that will give an insight into how much our children and those suffering with ME struggle.
Let’s take a proper look at the run up to and preparation for school, school itself and the return
I’m simply going to list activities which can tire out a young person with ME and you can then decide yourself if school is a place where a young person with ME should be.
An activity for an ME sufferer is anything that uses up energy, people with ME have little energy to begin with so many things can be a struggle.
After 4-5 hours sleep, possibly less, possibly broken, the young person starts his/her day on an already minus, and each activity makes them more tired, which in turn causes a worsening of their symptoms, which leads to being more tired and so on…..
Getting out of bed
Chatting to family
Getting school stuff ready
Going up and down stairs
(That’s before even leaving the house).
Traveling to school
Carrying a bag
Chatting to friends
Adapting to lighting-can cause headache and sensitivity to eyes
Adapting to noise-can cause headache and disorientation
Adapting to smells-can cause nausea
Getting to class
(That’s all before a lesson).
Partaking in class discussions
Moving from class to class
Recalling your day to parents
As well as the above the young persons body is probably fighting some common ME symptoms, which both add to and cause fatigue, all of which are invisible and all of which staff will be unaware they are suffering from. The high achiever ME child will push on through causing their body to CRASH later on…..
Swollen lymph nodes
Loss of Temperature control
There is also a substantial list of cognitive problems associated with ME which may all come into play whilst learning, needing the young person to concentrate even more, which in turn leads to using more energy and again leads to fatigue, causing a worsening of symptoms leading to a CRASH
Difficulty with simple calculations.
Saying the wrong word.
Difficulty expressing ideas in words.
Difficulty following a conversation with background noise present.
Losing your train of thought in the middle of a sentence.
Difficulty with short and long term memory.
Difficulty understanding what you read.
Transposition (reversal) of numbers, words and/or letters when you speak.
Transposition (reversal) of numbers, words and/or letters when you write.
Difficulty remembering names of objects.
Difficulty remembering people’s names.
Difficulty with decision making.
Difficulty following simple written instructions.
Difficulty following simple spoken instructions.
On top of that there are the side effects of any medications they may be taking:
Cognitive dysfunction medication.
So I put it to you again…
Should a child/young person with ME be made to attend school?
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