i set up this blog not only to document the progress of my daughter, who has been diagnosed with functional abdominal pain, but as a resource for others going through similar difficulties.
functional abdominal pain affects many children, whilst many children continue to function without much difficulty, some are completely disabled by pain. this affects schooling, friendships, clubs and activities – drawing a child’s world into the home, and perhaps further limiting it to one or two rooms as well, just at an age when these children want to be out, discovering the world on their own terms.
my daughter is in chronic pain and has been unable to attend school since January. we live in England. this means she is entitled to five hours of one-to-one home tuition weekly. the Citizens’ Advice Bureau has limited info on this: Children who are too ill to attend school. The Advisory Centre for Education (ACE) has a helpline (only operates Mon-Weds because of funding cuts) and can provide further advice too. There is brief guidance, Illness and your child, available from the UK Government.
five hours sounds like precious little in comparison to a full week of study, but is demanding of a child in pain. is she able to keep pace with the curriculum in school? no. but the focus is on keeping going, keeping engaged, and keeping learning as part of her life.
for me, the loss of a full and stimulating curriculum is bad enough, but there’s a bigger issue in all of this – the almost complete loss of social interaction. a child out of school loses more than learning, s/he loses all of the hubbub, the chatter, the fun, arguments and playtime that is such a big part of being in school. the gap between home and school cracks into a yawning chasm; friends and friendships move further from reach. the loss accelerates outwards.
we’re trying to bridge that gap. we’ve used facetime to connect home and school so that my daughter can take part in a weekly form quiz. skype could work just as well. next week, we’re hoping to get her into school for an hour or so – to meet a few of her friends for lunch in her form room, followed by a short one-to-one session with her home tutor. if this goes well and she is able to cope, we’ll make it weekly and build on from there.
as i write this, my daughter is crying out in pain. it is extraordinarily difficult. we’ve just got to keep on as best we can.