Today both my children are home sick from school... and it strikes me that society sees that a very important part of a mother's role (aside from feeding, nurturing, loving etc), is to ensure that her children get to school. Every day. That they abide by school rules regarding attendance etc. That they get a good education - the BEST education available. That they can thrive and do well and ultimately go on to further learning and fulfill their potential to get a good job. This is what is imprinted into us from the minute we start school - that there is a responsibility to attend, and more importantly, to achieve.
M.E. spins a whole new spectrum on this. When I was particularly ill with M.E. myself, my children would be dressed in their uniform, yet I would on occasion struggle to be able to get up, unable to walk or get dressed, unable drive them to school.... so they would end up aimlessly at home, in their uniforms, while I was stuck sick in bed. Oh the guilt. I had a list of snacks on the fridge that they could help themselves to if I was unable to prepare dinner... they were young, it shouldn't have to be that way, but it was survival tactics necessary at the time. Mostly I was able to arrange carpooling to get them to school, but not always. I felt like the worst mother ever. Until we moved house, closer to the school.
The hospital physio had come and visited and gave me a zimmerframe, and the hospital OT had come and told me we would need to move house, when I told her how much I struggled with the stairs (my hubby was needing to fireman-lift me upstairs to bed most evenings for a patch).
So we moved house. Never an easy feat with M.E, and we have had far too many shifts in recent years.
But back to the topic of schooling. Now, Miss R has M.E. She is unable to "just walk to school" anymore, even though it is now only a couple of blocks away, and her M.E. is such that she is only able to attend school for 80mins per day - between morning interval and lunchtime. It completely drains her and she is often unable to recall what she has done that day. She has difficulty eating lunch and needs a long time to unwind. She is merely getting a tiny taste of school life.. two of the days are Biotech (currently making soap), and another is current events. I worry that she is missing so much in her education. When will she ever be well? When will the nightmare of M.E ever leave, and to what depths will it go? Where is the point to push through, and when is it necessary to retreat to avoid an irreversible crash??
As a parent, it is very hard to convince ourselves that it is 'ok' for her to be missing so much of her schooling. She is conscientious and loves school, loves being there for the 80mins each day when she can make it. She has a wonderful hospital tutor who comes for two hours a week. Yet cognitive difficulties are starting to show - she forgets easily, she forgets what she is saying mid-sentence, she bumps into things, she loses things, she will manage to struggle through a page of reading but have no recollection of what she has just read, she pulls muscles in her neck and back all the time from just 'being', and struggles with car rides, having showers or baths, and sleep. After any activity, it takes a long time for her to recover, and for a child who LOVED hiphop and netball, she is now unable to do any sport. When she is out, she pushes through the best she can with her invisible illness... and once home she crashes.... and suffers.
She is an unwell child, and sadly, full education will just have to wait...
As a carer it is hard to rationalise that she is currently too sick for much school and too sick for home schooling. So hard. So hard for her too, naturally. She has no extra 'space' for additional thinking at home much. We do jigsaws and play hangman or scrabble on occasion, but she is rarely able to manage much more than that even though we have tried.. So important that she is able to keep up the social contact, yet mostly she feels too ill to have friends over, even for a short time. I'm thankful that currently her friends keep in touch, and technology in this instance is a real blessing.
A note from her school friend made my heart melt:
You are such a wonderful friend, and I don't know what I would do without you! (Signed by the child's name, with her surname crossed out, and "Beiber" in it's place).......
What are your thoughts on chronic illness and education? How have you handled it? xx MUM
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