Info folder for school

dreamdaisy
dreamdaisy Member Posts: 31,557
edited 22. Sep 2010, 14:58 in My child has arthritis
I think I've just had a brainwave, but there again all you savvy parents out there might just have done this already!

It can, on occasion, be very difficult to get schools to pay attention to health needs. I can guarantee that many teachers will not have come across a child with arthritis, may even not know that children can suffer from it, and won't have a clue about how to react to a child in the sort of pain that yours go through. An information folder could help explain things, and it could be circulated to all staff involved with your child. Perhaps hospitals already provide such a thing - as I'm involved at the adult end of things (supposedly I am a grown up!) no such thing really exists as we can explain our conditions to people. If you are six, or ten, or fourteen, you cannot, or at least not so easily. I suspect that most teachers will have little idea of the impact these conditions have on energy and concentration levels, so some background info may be very helpful.

If you have all already done this, I apologise. If you haven't however, is it a workable idea? Is such info out there already? I would like to know! I hope that all of your children, and all of you, are going thro a good patch at the moment. You all deserve it. DD
Have you got the despatches? No, I always walk like this. Eddie Braben

Comments

  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi dd,
    i did something similiar for tom;s school. he is the only child they have ever had with JA and appeared grateful for the pack i took in. i put leaflets in from the hospital and also printed off the 'chat for teachers' from this website which is really informative.

    your idea is fab, and definately helps the school, i wrote down all tom's medication, side effects and contact details of hosptial specialists.
    hope your well. :D
    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hi, I'm feeling better than I was, thanks to my fortnightly wallop of humira. I'm glad you think the pack is a good idea and I am also pleased you have already done something for Tom. Jordansmum was saying that he was made to sit on the gym floor yesterday - I am screaming in frustration at the arrogance and stupidity of so-called professionals who should damn well know better. And I speak as one of those professionals! I have read posts from those in their early 20s who are told 'You can't have arthritis, you are too young.' No-one, as you know, is too young. There is so much ignorance out there, we need people like you to spread the message. Yes, it's thankfully rare, but it does affect children of all ages and people need to be made aware of that.

    I shall now stop ranting and get off my soap box. I have to work in a moment and I should be getting ready for that, not raving at you! I hope Tom is OK today, and you too. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    thanks DD thats how i feel i have now done the same this afternoon have printed off all the leaflets and jordan is in the middle of typing what he finds differcult and what he feels would help him 8) i have a meeting tom at 10 so wish me luck hopefully this time things will sink in. The oc health are writing to the school as well, so i will let you all know how i get on .
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi DD - inspirational, I don't know why I haven't thought of it sooner. Annie's old teacher in Year 1 has Croen's Disease so he was well up to speed on all medication and had personal experience of how it might effect her but her new Year 2 teacher hasn't. Thank you, I am onto that now.

    Annie is really really tired and complaining of back pain, again - effects of general, arthritis, year 2, combination??????? Worry, worry, worry, ahhhhh!
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi there,
    It is a really worthwhile thing to do. My daughter just started in reception and though I had spoken to the head teacher, I felt it was important that the people working with Freya had a good understanding of how it affects her.
    The hospital gave me the Chat for teachers book which I passed onto school, but I also prepared a pack telling them how we recognise that she is struggling, how they can help Freya and encourage her to use her own coping mechanisms, and how her treatment might impact on school from time to time.
    I felt it was important for them to understand how well Freya copes with her condition and it's treatment, and allow them to get to know her and create a very inclusive environment for her, but with the understandiing that they know how to help her when she needs it. Also, to reinforce how important it is for us to have two way communication and how they can be vigilant and report any changes in her that they notice.
    I felt a good deal better knowing they were armed with this infomratino and the teachers were grateful as they have never had a child with JIA in their care before. So, yes, great suggestion and would encourage any parent to pass on the most useful informatino to our kids teachers. After all, they spend a lot of time at school so we need to know ehir neds are being met there too.
    Sam.xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I can see it from three sides: a teacher (which I am), an ill child (which I was, chronic asthma and eczema) and the parent (which I am not, but which my mum was and she has recently told me of the abuse - for want of a better word - that she received from teachers).

    I would like to make it clear from the off that not ALL teachers are miserable gits who just want to get from the start of term to half term asap, and then from half-term to the end of term asap. There are many, however, who do dispute things about which they know nothing, and I suspect that juvenile arthritis (probably the wrong term, I apologise) is one of those things. I have noticed as my years advance that people tend to denigrate the things that they have not directly experienced (me included, on some things): I coach dyslexics and the antipathy, even now, to dyslexic children is frightening. Lord knows what it must be like for something as rare as your childrens' conditions. I think that some teachers often end up thinking like the age groups they teach, as well as being incredibly closed-minded. A fair few dislike having to make any extra effort - not all, but a fair few. 'Why can't the child fit in?' is the question they ask, not 'How can I help the child fit in?' This would be an aim of an info pack - open their minds to this dreadful thing, teach them about it, teach them to listen to the child who may be reporting tiredness or pain, teach them to respond kindly and with compassion.

    From the point of view of the child (which I used to be) there is sometimes nothing worse than being 'different'. Children are amongst the cruellest inhabitants on this planet: they know instinctively how to wound, how to distinguish the weaker from the stronger. It's called bullying, and I had a fair taste of it at primary school. I sincerely hope that as we now live in more enlightened times your children are not being targeted for this, and I really do not want to raise this spectre, but I think it is something that you should all watch out for: I remember being 'different': it's horrible. This is another area the info pack should tackle, educate teachers and educate the other children too.

    Finally, as a mum: I remember the eye-rolling as a new term would start and a teacher would wander into the staffroom and announce 'Mrs A has been here again about her precious little Fred.' Well, llittle Fred was precious to Mrs A, who might or might not be a little neurotic about her darling son, with or without good reason. Teachers should always remember that every child (if all is right in the world) is precious to the parents, and they should react accordingly. My mum was the target of much criticism from the teachers at my primary school (when my health issues were at their worst). As a teacher I took the view that the person who knew thier child best was the mum - ocaasionally the dad but usually the mum. Mums should be listened to, especially by teachers, who, strange as it might seem, do NOT know everything. (and that includes docotrs too).

    I suspect I have rambled on enough, but I do think there could be room for the development of a specific info pack for schools, not just a collection of statements and ideas from a variety of sources, although that is a beginning. Your sons and daughters are coping with a condition that I, as an adult with my version of it, struggle with on a daily basis. We need to ensure that those who come into contact with your children are properly informed about their conditions, their medicines, the effects of their treatments, the tiredness, the pain and sometimes the overwhelming exhaustion that these children experience. Right, I'm done, and done in. I sincerly hope I haven't alarmed anyone, that was not my intention in any way, shape or form. Thinking of you all. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    I think a specific info pack for schools is a great idea. I've written up a lengthy e-mail for all of Philippa's teachers which includes general information about JIA with links off to further information (I link to the info for teachers page) and also information specific to her.

    Right now as she's in remission it's just a case of watching and listening to her, and I have to say her new school have so far been excellent.
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Further thought, it would be really cool if the pack included information for other children, perhaps with a few ideas for lesson plans? The eczema website has something a bit like this, I remember.
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi DD

    How are you today?

    Thanks for thinking of these children, it's a great idea.

    Must admit, B's school seems to have been good so far. When B started school she was in remission, and although I disclosed her condition when filling out the information forms I made it clear that no-one needed to know.

    That changed of course when she started to deteriorate - her lovely form teacher was so empathetic - her husband had arthritis and was on mtx so she understood what B was going through to a degree - would let her stay in classroom at breaks and lunchtime if B wanted to. We took the GOSH literature for teachers in and also the Sam has Arthritis childrens book.

    We've got the Special Educational Needs Coordinator involved this term - she has written up a Health Care Plan which is distributed throughout the school to all staff who come into contact with Betty. Over the summer holidays B would fret about not having friends at school - it seemed to have come about due to all of the time that she'd spent alone either in the classroom or sitting with the First Aider during break times...

    My concern was that Betty seemed to missing out on friendship and playtime stuff, and the SENCO came up with trying to set up some sort of inside play option for "all" of the children who didn't like to be outside and haring/racing around the school playground - maybe doing puzzles or playing board games. Sort of setting up a facility that was inclusive for all children - rather than making the kids like Betty feel odd and excluded.

    Must admit that reading the CHAT advice for teachers was a real eye opener for me - realising that to have them aware of characteristics of her condition and possible changes in behaviour would serve her best. Took me a little while to work that out :roll:

    Anyway, really must put the washing out...

    Best wishes

    Kath
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    You sound as tho you have a really good school there, and a good SENCO - a saying about hens' teeth springs to mind, even tho it probably shouldn't! Strewth, I am cyncial about my fellow professionals - I guess that is as a result of working outside the system and only dealing with the poor ones!

    I think that we do need a basic introduction to JA in the form of a pack, something standardised so it could be used all over the country. HOw many children out there are struggling, parents too, who do not know that this forum for parents exists? Are there others out there? I have no idea, better get my Sherlock outfit on I suppose, and go hunting. It is meth day today, however, and my resources are depleted. I dislike Wednesdays.

    I hope B has had a good day, Tom, Jordan, Annie and Phillippa too. Hugs to you all. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    DD- you have been thinking really hard for us parents. A great big thank you - your insights are invaluable and you have got me thinking far more about how to manage this on behalf of Annie - only 9 months later! . I also admit Annie's school has been really supportive and I have emailed them the Chat2 Teachers info. What did you think of that document in your professional opinion? Can we do better and if so how and in what format....? I must admit I only flicked through it last night and thought some bits useful but others that didn't apply to us at this stage. Happy wednesday. I am going to have a more thorough read tonight - Annie says she hates friday as thats mtx day for her.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Oh poor Annie, it's horrid, isn't it, having a nasty day every week. I must confess I haven't yet seen a copy of the teachers' info, I will check it out when I am feeling brighter and see if it needs anything changing! Ooooh, get you, Madam! Regards to all. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    You go for it Madame DD - sounds a bit rude that! Take care tonight on horrid wednesday.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Wow well done Dd it's a real eye opener to know that people do actually care and look out for our children.

    I made it a point to meet with our SENCO well before term started. In fact as soon as I knew she had a place at the school I made an appointment. It probably helped that she was already attending the attached nursery so some of the teachers we well aware of her and they've unfortanetly seen her at her worst :( had to go pick her up on several occassions.

    Anyway I've always given the school ALL leaflets I have concerning her meds and she carries a copy of her ID cards (enbrel and steroids) in her book bag, I have originals in my purse. I've also always given a copy of hospital letters, well only those that are important not the you have an appointment ones etc. that way they can read what's been discussed at these consultant visits and see where is still cause for concern. I have just been given a copy of CHAT for teachers from Bristol hospital which I've handed into her teacher, she is very grateful for this and I so hope it gets past year to year with her as she progresses through the school (she's in reception).

    Our senco is brilliant and organised an outreach teacher for physical disabilities to come visit the school, chat with me and the senco and put in place anything that needed sorting, like a slatting desk, gripped pencils, crocodile rulers, beanbags (for use on carpet time, assemblies or basically any floor activities so that she didn't have to sit on the floor), I must say the school has been fantastic about it all. I have a meeting with her class teacher tomorrow after school so that she can discuss with me the home/school diary that the outreach teacher has provided so that everyone is aware of how she's feeling and I get a clear picture of what she's been up to during the day and how she's been that morning, meds taken etc etc.

    I must admit I was very scared with her starting school, but the senco and outreach teacher have really put me at ease. The outreach teacher has 2 other arthritis children under her watchful eye one is now entering secondary school so she has lots of experience and came out with things I was anxious to discuss in fact I had no questions as she was that thorough, I kept ticking things off my list in the meeting.

    I do think a pack is a good idea though, and I do also think that the more you talk with the shcool and get everyone involved and understanding of the child in question then you are well on your way. Perhaps for those that have trouble talking to the teacher in the morning perhaps a notebook with notes written by yourself and given to the teacher in the morning will be very helpful. They can also write notes in about what they have noted during the day etc. I can't wait to see hte home/school diary that has been produced (very specifically) for Kayleigh as it will include about lunches as well as she DOESN'T eat, even here at home, at the hospital even though on steroids :(

    Ermm think I've gone off on one here sorry lol I'm sure there was something else I wanted to add but can't for the life of me remember what lol

    Michelle xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I really am beginning to wonder if you lot need something like this! You all seem to be well-organised and your schools are responding to your needs, which is both encouraging and fantastic. For those parents who are not so articulate, however, something should be there for them to draw upon. I will give it some attention, I promise, but things are not too good at the mo so don't hold your breath! Sleep well, everyone, parents and children alike. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben