School - positive

illihor
illihor Member Posts: 283
edited 9. Mar 2010, 17:26 in My Child Has Arthritis
I had a meeting yesterday with Kayleigh's nursery teachers and the schools inclussion co-ordinator. I feel very listened to and confident shell have the help she needs even when she starts school there in September (nursery is part of school).

They are looking into getting her huge bean bag that can double up as a bed so that she can take frequent rests during the day. They are also going to make a face chart with happy, nutral, sad faces etc on it so she can point to how she's feeling (she doesn't speak much on there as has speech problems too) as she doesn't tell them if she's tired sore hurting and often comes home in agony bless her. They are going to look at getting her special scissors that won't hurt her fingers, they have fat pencils and pencil grips to help with that side of things. They are going to make space for her wheelchair to be stored once we get it.

There is a special school here in the city that they say they can tap into their services and perhaps get someone out once a week to help with exercises etc. This other school also has a hydro pool and said we might be able to take her there during term time.

I questioned about the nhs boots she now has as they aren't black but pink with flowers and they were more than happy about it unlike the head teacher. I also asked about her injections as at the moment she has them every Friday morning at 9.30 and she said that wouldn't be a problem to continue it like this and she arrives at school late on those days. I was told not to worry about days off for not feeling well or coming in late if she's to tired and dire in the morning.

I'm feeling a lot more confident in sending her there full time in September now as I know there will be people there to fight her corner should the need arise as the head has already tried (failed lol) to have a go at me about her shoes or lack of and pink boots.

We collected the new boots this morning and they have changed so much from what I remember them looking like when I was little and she loves them they are so comfy and very well padded even the insoles are brilliant as she's gone flat footed from the arthritis so hopefully this will help.

Michelle xxx

Comments

  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    so glad that your experience today was so much better than in the past.

    Now you know where to go with your concerns I am sure that it will be easier to get little things sorted before they become big things.

    As a former teacher who was also SENCO I would say that the more you keep school informed of what is going on then the more they are likely to be able to (and willing to) help you.

    Well done on being such a fab mum for your little one - she really is lucky.

    hugs to you both
    WOnky xxxx
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    Hi Michelle,

    I am so pleased you are getting such a good responce from the school. If only they were all that good and understanding, it would make our lives and our childrens a much happier one. I really hope it continues and she has a steady ride through. I am really pleased to hear she likes her new pink boots to, bless her.

    Sending you lots of hugs
    Sam
    xx

    illihor wrote:
    I had a meeting yesterday with Kayleigh's nursery teachers and the schools inclussion co-ordinator. I feel very listened to and confident shell have the help she needs even when she starts school there in September (nursery is part of school).

    They are looking into getting her huge bean bag that can double up as a bed so that she can take frequent rests during the day. They are also going to make a face chart with happy, nutral, sad faces etc on it so she can point to how she's feeling (she doesn't speak much on there as has speech problems too) as she doesn't tell them if she's tired sore hurting and often comes home in agony bless her. They are going to look at getting her special scissors that won't hurt her fingers, they have fat pencils and pencil grips to help with that side of things. They are going to make space for her wheelchair to be stored once we get it.

    There is a special school here in the city that they say they can tap into their services and perhaps get someone out once a week to help with exercises etc. This other school also has a hydro pool and said we might be able to take her there during term time.

    I questioned about the nhs boots she now has as they aren't black but pink with flowers and they were more than happy about it unlike the head teacher. I also asked about her injections as at the moment she has them every Friday morning at 9.30 and she said that wouldn't be a problem to continue it like this and she arrives at school late on those days. I was told not to worry about days off for not feeling well or coming in late if she's to tired and dire in the morning.

    I'm feeling a lot more confident in sending her there full time in September now as I know there will be people there to fight her corner should the need arise as the head has already tried (failed lol) to have a go at me about her shoes or lack of and pink boots.

    We collected the new boots this morning and they have changed so much from what I remember them looking like when I was little and she loves them they are so comfy and very well padded even the insoles are brilliant as she's gone flat footed from the arthritis so hopefully this will help.

    Michelle xxx
  • butterflywings
    butterflywings Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi

    I have had numerous meetings with my daughter's school over the way she is treated. Every time she has a really bad flare up or is in pain or has to go to hospital I always write a letter to the school explaining the situation and stating what she can and cannot do. They were pretty good when she first started, but now (and she's 9 years old) no one treats her well. The teachers say that they will help her or look out for her, but when something bad happens or another child taunts her - they don't do anything which of course upsets my daughter. This in turn has affected her relationship with the school and she would do anything not to go !! The times I have been in to see the headteacher !!!!

    My daughter is seeing a child physc in order to help her overcome her difficulties with the school, so I am really hoping that we can sort this out.

    One suggestion was that my daughter do a short presentation on JIA at assembly which I thought was a good idea. I think the problem with alot of schools is the lack of knowledge they know on JIA. It's a sad fact but a very true one.

    All the best X