Daily chart for schools

illihor
illihor Member Posts: 283
edited 9. Apr 2010, 17:22 in My Child Has Arthritis
Does anyone have any experience of doing one of these. Unfortunately Kayleigh as well as arthur has speech and language problems and has major difficulty telling people how she's feeling. I've got it down pat and know exactly but when at school they haven't a clue plus it doesn't help that she won't speak to them either. This as well as the fact they haven't a clue how to pace her or what letting/making her do stuff is affecting her in the evening is leading to a lot of pain and discomfort and heartache.

So what I'm planning is two things.

First is a mood chart, with faces on to show how she's feeling plus additional pics like knees, feet, hands, a bed, chair etc so she can point to how she's feeling and finally get through to nursery what's going on in her head.

Second is a daily record chart. This is my hard area as I haven't a clue how to start. I was thinking of breaking it down into hour slots for nursery on the left hand side, then across the top list different activities, i.e running, jumping, sitting, floor, table activites etc etc but I'm stuck on how to best proceed with this. Obviously it needs to be very simple and something the nursery has ease in completing and not time consuming. I will get this every day when she comes out of nursery and there will be room on the bottom for me to write notes about how she was that evening etc and hopefully we'll start to see a pattern of what is happening as some days she comes out and is ok, others in pain, others in complete agony and they don't tell me what's set it off or they'll say something one day but when I confront the next as she has a bad night they change the story.

Has anyone done anything like this or have any ideas what I could that could possibly help in this situation. I've spoken with nursery and they are happy for this to be done so I've got just over a week left to sort this out and can't seem to get my head around it.

thanks
michelle xxx

Comments

  • cthornley
    cthornley Member Posts: 627
    edited 30. Nov -1, 00:00
    Michelle

    I don’t have anything directly comparable as its me with the RA not my son
    But my sons nursery do a daily record of his activities – it’s a little photocopied book with an a5 page per day recording what he eats / sleeps / nappies and activities
    It gets filled in with ticks and occasionally short comments – it must be do-able because they have 30 kids in the class and we all get them even though they have a day jam packed with activities
    Its not very detailed but it gives a good general idea of what he’s been up to – he’s only 22mths old so asking him really isn’t an option
    It also has a section at the bottom for me to write notes for nursery – which is useful as sometimes things come to mind when i’m reading it and I would forget if i had to mention them in the morning rush
    I would scan a copy but its at nursery with him
    If you get really stuck you could look on the schedules section of http://www.chartjungle.com/ for ideas

    Out of interest does your daughter use Makaton – a childrens easy sign language widely used in nurseries, it might help her to communicate
    You can get details on the internet about it or your daughter’s school might be able to find out about it – its certainly helped when communicating with my son and i hardly know anything from it

    Hope that helps a little bit
    Chrissie
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Thank you for your reply, she knows the odd occassional makaton but finds it hard to actually do most as she will NOT bend her wrists and when she had her GA they tried to flex and she's lost 25% in wrists. The other problem is she can speak and communicate but chooses not to at school and is very withdrawn. Her speech is very unclear though and if I ask her why she doesn't speak at nursery she says because they don't understand me. Guess that's 4 year olds for you they think they not being understood so won't bother trying :( she's at least opening up to her s&l therapist which is good. there are a few sounds she can't make.

    They called me up once as she was very u[set and wanted me to get her i went down asked what was wrong and all she wanted was to lie down as she was sore but they totally misunderstood her and she went off on one.

    I'll have a loook at that link thank you.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    I would just like to say thank you to Guy Cosnahan for the hard work as he's sent me an email with a chart he's put together :)

    Wow thank you for this :) This is exactly what I needed. I might add a couple more things if I think of it but primarily this is it as she complains mostly of lower limbs hurting, hands/wrists are next so might add a columb for that say writing and colouring as she starts school in september and this will be good to use then as well.

    I'm so grateful to you for doing this, is this something that in time can be added for other parents to use/adapt as I know at hydro there are 2 other school aged children (and one toddler) with JIA that would possibly benefit from this as schools don't seem to understand sometimes just how things are. I know for me in the notes section I will say how she's feeling that particular day when I hand into nursery.
  • speedalong
    speedalong Member Posts: 3,347
    edited 30. Nov -1, 00:00
    Hi your feelings chart sounds great. Glad you have been emailed an activities chart. I would leave a few blank columns for the nursery to add activities too. Hope the charts help.

    Does the speech therapist work with your daughter at nursery or at clinic? Might be worth involving her with this too.

    Speedalong

    PS I know your daugher communicates well with you, but I would have a duplicate chart at home for her to practise with - first with you and then with others - to increase her confidence in using it with lots of people and in different settings.
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.