Day 5 of ME Awareness week I am going to talk about the extra support our children desperately needs.
Unlike healthy children, who go to school every day, children with ME or another illness can not have this luxury. C like many other children struggled and tried to carry on at school. Unfortunately, they can not cope due to the fatigue, the brain fog and pain plus many other symptoms. Causing them to crash and become bedbound. I was very lucky that our school worked with us trying different ways to help her manage school.
Eventually we had to stop and we were given 1-2-1 tutors, on C bad days the tutor would work with C at home. On better days she would go into school for her tutoring. Giving her a bit of a normality to her education. Unfortunately I can not remember the last time C had a tutor session as she has been too ill. Her tutor still pops in one day a week just to say hello and let her know she is not forgotten.
This in itself is heartbreaking as a parent of a child who was in the top groups in school, and who loved school. But what happens when they should normally be going into further education such as sixth form or college. For a healthy child they just progress. For a child with an illness it is a battle, that is so unfair. Why should we as parents have to battle and fight for just because our children have an illness. Are they not allowed education? should they be punished for being ill?
It does not take a professional to understand that a child who is chronically ill, could be depressed. They have gone from normal life to being confined to their bedroom over night. They see the same people day in and day out, they see the same walls day in and day out. That is enough for anyone to become depressed. Do you know there is no services for children. I have asked Consultants and our GP and there is nothing. We were offered CAHMS, which we went to and was a disaster.
We were asked why we were there, and then told they do not know what ME is and would probably be unable to help her. Remembering C is in the room hearing everything, I explained calmly why we were there and what we wanted from them. She asked C about her illness and what is worrying her and C broke down and said she was scared of it and never being better. We agreed another appointment where C went in by herself, she came out quite aggressive and C refused to return she did more damage than good.
Children need counselling, not just children that are ill, but there are so many children out there that need this service. Why should age be a barrier.
I know I have already spoken about this, but we need the medical professionals to understand what ME is. No one at our local hospital who we have seen understands it. Every time we visit I have to explain what it is, while they google it. We need someone who understands without having to face brick wall after brick wall getting help for our children. My Daughter is getting worse, we have a Consultant who we never see, can never talk to. We have a great GP surgery but they do not understand ME. It is left to us as a parent to research and find our way. Believe me talking to other parents you can find out so much more.
When are ME sufferers going to be listened too and be given the support they deserve. The same as other sufferers of many other illnesses already receive.