Problems with daughters school, looking for advice!

shannonsmum
shannonsmum Member Posts: 68
edited 15. Dec 2009, 16:50 in My Child Has Arthritis
Hi There,

This is the first time I have posted on here and am looking for some advice.
A little about us, my daughter was diagnosed with JIA when she was 2 years old she has been on methotrexate ( both tablets now injection) and had verious stays in hospital where she has had to have steroid injections also she has Uveitis in her eyes. For a little girl she has had a lot go on, as im sure a lot of young children have.
As a family we find it hard to cope with, even still now and she will be 8 in Januarey so a few years on and we still struggle.
Shannon finds her medication very hard to cope with (she has a phobia of everything medical) which she has via injection on a wednesday morning given by nurses, they are really lovely and will do whatever to make life as easy and comfortable for shannon and us as a family...my problem is with shannon school they are complaining because she is missing every wednesaday (aprox 1hr at the most) morning for these injections they have said she is behind in all subjects and that they wont authorise any more time off and i will be fined if i let it continue, this has apparently come from the welfare education and her headmaster. There is also alot of other problems with the school where they are not taking into consideration that shannons wrists are not good all the time and it takes her a lot longer to write also she lacks concentration and is tired a lot of the time but to them she is just lazy and cant be bothered. When i try and discuss it with them im just a mother that is always moaning....but I just want the best for my daughter and her health! Has anyone ever had the same and any advice is greatly received.

Thanks

Shannons mum.

Comments

  • lisa11
    lisa11 Bots Posts: 20
    edited 30. Nov -1, 00:00
    hi ,my son was diagnosed with polyarticular arthritis 18 months ago the rhumetology nurse contacted school immediatly as he was just due to start secondary school and they have been fantastic has your daughters school been given any medical info from the docs?plus due to her age as she is under 9 she is still under the health visitor you must get in touch with them straight away and ask them to draw up a care plan and liase with school for you there is no way school can treat you like this its against the law due to my son being 12 hes too old for the health visitor so hes under the scool nurse and its every school policy to provide eqiupment such as lap tops and home tutoring i know its so frustrsting but we have to keep fighting for our kids i wish u loads of luck
    luv lisa x
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    HI Lisa,

    Thankyou so much for you reply..i never even gave the health visitor a thought. When Shannon started the school we gave them loads of info and her first teacher was lovely very caring and helpful. But it seems every year she moves up we are back to square one! But for a while shannons jia was in control and everything was going along quite nicely but she is having a bad flare up now and there is just no support from them...it was the teaching assistant that noticed shannon struggeling with her writing and mentioned to the teacher that she should have a grip for her pencil! this is the one and only thing she has to help her!!

    I am struggeling with shannon as she is just so down and crying all the time..I am trying to be a support for her but as a mummy seeing her go through this just breaks my heart! I again thank you for you responce. I will ring the health visitor in the morning and see what help they can offer. Love to your little one too.

    Luv
    Sam
    xx
  • gickygawky
    gickygawky Member Posts: 478
    edited 30. Nov -1, 00:00
    Hi there Shannon's Mum,

    I am so sorry to hear all that your family has been dealing with and I am disgusted to hear how your daughters school has been dealing with your situation.

    Your post has really struck a cord with me - Up until July I was Head Mistress of a nursery school and had a thing or two to do with situations like this. Although the age ranges are different there are still systems in place for you to find the support you need through your local government.

    Within my borough of London I was in close contact with their 'Inclusion Officer' whose primary role was to support all children at school regardless of circumstance,, age, ability etc. They provide support and advice for families and are very well trained. They will even educate the school staff about the realities of your daughters condition so that it is not again coming from you ' the worried mother'. I would suggest searching through your local governments website and looking at the support they have in place for child welfare etc. There should be numbers provided for you to contact immediately and they aim to deal with inquiries within 11 days. They are the first link in a team of people who are available to provide support for your daughter, someone should become available to come in and evaluate how the school is and should be supporting your daughter.

    The schools response to the situation is discriminatory and is at odds with the welfare of your daughter. It will also be at odds with the school policies and procedures. These documents must be made available for you upon request (should be displayed for all to access) so I suggest you ask the principal to provide you with their 'Inclusion Policy' (may be called something slightly different and then ask him where it states that it is necessary for them to react to your circumstances this way. I guarantee it won't.

    I am sorry this reply is not more informative, thanks to my drugs I don't have my thinking cap on. If you would like to, please private mail me, I would be happy to dig into the information I have here to find some more answers to your situation.

    I hope this email has been of some help and your daughters health improves.

    Kindest Regards

    Arna x
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    Dear Arna,

    Thankyou so much for your reply. I will go to the head and ask to see that. I am very keen to see what responce I get from him. I am so greatful for the support I have had so far and cant thank you enough, I will contact you for more info if I need some.

    Take Care
    Sam
    (shannons mum)
    xx
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    HI Jan,

    Thankyou for your reply..it just makes me feel so much better that how i feel is normal..i just want the best for my little girl. I will look into that too. I know her school is not behaving in the right way I have tried talking to them and have got no where so I now have over options to help me thanks to you guys.

    Again thankyou,

    Luv
    Sam
    xx
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Sam

    I am so relieved that you found some help on here. You and your daughter are being treated abysmally by the school. You are such a wonderful, caring mother and it is not you at fault by any means but the school and those running it or thinking they do.

    I do hope you get this all ironed out soon. You have more than enough on your plate without those at the school poking their noses in and being of no help whatsoever.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • oneday
    oneday Member Posts: 1,650
    edited 30. Nov -1, 00:00
    I dont often look on this part of the forum but glad i did.
    I think the way the school have treated your family is disgusting.
    How uncaring and i think unlawful to be treated like this.

    Things i have thought of...
    1. how about a change of school
    2. how about contacting the education authority for advice or a parent support group
    3. how about a referral to occupational health - my daughter had this and they gave diagnosis and recommendations
    4. get written reports sent to school
    5. next time at hospital ask them can they write a letter - hospitals,doctors good at doing this
    6.how about disability rights commission
    7 how about asking for referral to paedratric community doctor
    8 school nurse?
    9. any other parents who have children with special needs who can sign post you for help
    10. i knew 9 was an odd number so heres 10. has she got a classroom assistant specifically for her to help with dexterity aspects

    oh yes, put any comments in writing and ask for written reply that way they cant deny they "didnt mean it" etc
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    oneday wrote:
    I dont often look on this part of the forum but glad i did.
    I think the way the school have treated your family is disgusting.
    How uncaring and i think unlawful to be treated like this.

    Things i have thought of...
    1. how about a change of school
    2. how about contacting the education authority for advice or a parent support group
    3. how about a referral to occupational health - my daughter had this and they gave diagnosis and recommendations
    4. get written reports sent to school
    5. next time at hospital ask them can they write a letter - hospitals,doctors good at doing this
    6.how about disability rights commission
    7 how about asking for referral to paedratric community doctor
    8 school nurse?
    9. any other parents who have children with special needs who can sign post you for help
    10. i knew 9 was an odd number so heres 10. has she got a classroom assistant specifically for her to help with dexterity aspects

    oh yes, put any comments in writing and ask for written reply that way they cant deny they "didnt mean it" etc



    Hi There,

    Thankyou for your responce, I have been into the school after receiving a letter from the head to say he will not authorise any more days for shannons injections on a wedensday! He told me that he will only arange a meeting with me when I have spoke to the school nurse...so that is my next step. I just feel like I am getting no where with all this. I am not keen to change school as it will be another lot of pressure on shannon I am keen to get this school to acept responsabilaty for the fact that shannon has a disability!

    I will look into the offer sugestions you have made.

    Thanks for all your support

    Luv
    Sam
    XX
  • oneday
    oneday Member Posts: 1,650
    edited 30. Nov -1, 00:00
    oneday wrote:
    I dont often look on this part of the forum but glad i did.
    I think the way the school have treated your family is disgusting.
    How uncaring and i think unlawful to be treated like this.

    Things i have thought of...
    1. how about a change of school
    2. how about contacting the education authority for advice or a parent support group
    3. how about a referral to occupational health - my daughter had this and they gave diagnosis and recommendations
    4. get written reports sent to school
    5. next time at hospital ask them can they write a letter - hospitals,doctors good at doing this
    6.how about disability rights commission
    7 how about asking for referral to paedratric community doctor
    8 school nurse?
    9. any other parents who have children with special needs who can sign post you for help
    10. i knew 9 was an odd number so heres 10. has she got a classroom assistant specifically for her to help with dexterity aspects

    oh yes, put any comments in writing and ask for written reply that way they cant deny they "didnt mean it" etc



    Hi There,

    Thankyou for your responce, I have been into the school after receiving a letter from the head to say he will not authorise any more days for shannons injections on a wedensday! He told me that he will only arange a meeting with me when I have spoke to the school nurse...so that is my next step. I just feel like I am getting no where with all this. I am not keen to change school as it will be another lot of pressure on shannon I am keen to get this school to acept responsabilaty for the fact that shannon has a disability!

    I will look into the offer sugestions you have made.

    Thanks for all your support

    Luv
    Sam
    XX


    Hi again
    Head needs a good rollocking.
    Good to see school nurse but that depends if any good and not one of these that do nothing! Whos the best medical person you see, hospital or Gp i.e someone who knows more the medical side of her condition, see them first, or ring secretary i.e. drs secretary not school and ask them.
    When you have guidance off proper helpful medical people then see the school nurse. If you think nurse isnt behaving as though on your side and being helpful i wouldnt go down that road as their no help and concentrate on other qualified med people to write to school.
    No doubt this is stressing you out. speak to your gp and how it affects you. at a later date you may mention how their behaviours have affected you and you have evidence in your gps notes.
    Theres some right heartless people knocking about and speaking of knocking you knock em out.....by going down the right road of course.

    p.s. you know if you didnt do you best for your daughter they would be on your back for not looking after her properly,its a joke.
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    oneday wrote:
    oneday wrote:
    I dont often look on this part of the forum but glad i did.
    I think the way the school have treated your family is disgusting.
    How uncaring and i think unlawful to be treated like this.

    Things i have thought of...
    1. how about a change of school
    2. how about contacting the education authority for advice or a parent support group
    3. how about a referral to occupational health - my daughter had this and they gave diagnosis and recommendations
    4. get written reports sent to school
    5. next time at hospital ask them can they write a letter - hospitals,doctors good at doing this
    6.how about disability rights commission
    7 how about asking for referral to paedratric community doctor
    8 school nurse?
    9. any other parents who have children with special needs who can sign post you for help
    10. i knew 9 was an odd number so heres 10. has she got a classroom assistant specifically for her to help with dexterity aspects

    oh yes, put any comments in writing and ask for written reply that way they cant deny they "didnt mean it" etc



    Hi There,

    Thankyou for your responce, I have been into the school after receiving a letter from the head to say he will not authorise any more days for shannons injections on a wedensday! He told me that he will only arange a meeting with me when I have spoke to the school nurse...so that is my next step. I just feel like I am getting no where with all this. I am not keen to change school as it will be another lot of pressure on shannon I am keen to get this school to acept responsabilaty for the fact that shannon has a disability!

    I will look into the offer sugestions you have made.

    Thanks for all your support

    Luv
    Sam
    XX


    Hi again
    Head needs a good rollocking.
    Good to see school nurse but that depends if any good and not one of these that do nothing! Whos the best medical person you see, hospital or Gp i.e someone who knows more the medical side of her condition, see them first, or ring secretary i.e. drs secretary not school and ask them.
    When you have guidance off proper helpful medical people then see the school nurse. If you think nurse isnt behaving as though on your side and being helpful i wouldnt go down that road as their no help and concentrate on other qualified med people to write to school.
    No doubt this is stressing you out. speak to your gp and how it affects you. at a later date you may mention how their behaviours have affected you and you have evidence in your gps notes.
    Theres some right heartless people knocking about and speaking of knocking you knock em out.....by going down the right road of course.

    p.s. you know if you didnt do you best for your daughter they would be on your back for not looking after her properly,its a joke.


    Hi,

    Your right this is stressing me out I have done nothing but cry and have a constant headache over the whole situation which i know does not help my poor daughter..she also is picking up on vibes that things are wrong!!
    I have today rang her cons who have been the most wonderful support to us all as a family he has become a very big part of our life so hopefully he will get back to me on monday and offer some advice!
    I have made an appointment to see the school nurse on tuesday so i will go there armed with my case and what info I have and see what she has to say....i am not giving up on this!

    Also because this has come up we have been looking into what help she should be getting at school as they are saying she is sooooo behind in all subjects ( i made it awre at parents evening that i was concerned with her hand writing as i had noticed it to be quite messy as if she was struggleing to write and i got told that she shold practise more then and sent her home with more writing work!!!!), it has come to light that she should possibley have a LSA and other things to help her through school but as far as I know she has not got any extra support of any kind!
    The reason this is all blown up as last week they had outdoor PE and I have given shannon a tracksuit to wear to avoid her getting cold and ill, she was told by a suply teacher she was not aloud to wear it as no one else in her class had one...so that made me ring the school to complain which has then brought all this up!!!!!!

    Do you have any idea what special help or equipment she would be entitled to??

    Thankyou

    shannons mum
    xx
  • gickygawky
    gickygawky Member Posts: 478
    edited 30. Nov -1, 00:00
    Hi Shannons Mum,

    I have left you a private message

    A x
  • oneday
    oneday Member Posts: 1,650
    edited 30. Nov -1, 00:00
    oneday wrote:



    Hi There,

    Thankyou for your responce, I have been into the school after receiving a letter from the head to say he will not authorise any more days for shannons injections on a wedensday! He told me that he will only arange a meeting with me when I have spoke to the school nurse...so that is my next step. I just feel like I am getting no where with all this. I am not keen to change school as it will be another lot of pressure on shannon I am keen to get this school to acept responsabilaty for the fact that shannon has a disability!

    I will look into the offer sugestions you have made.

    Thanks for all your support

    Luv
    Sam
    XX


    Hi again
    Head needs a good rollocking.
    Good to see school nurse but that depends if any good and not one of these that do nothing! Whos the best medical person you see, hospital or Gp i.e someone who knows more the medical side of her condition, see them first, or ring secretary i.e. drs secretary not school and ask them.
    When you have guidance off proper helpful medical people then see the school nurse. If you think nurse isnt behaving as though on your side and being helpful i wouldnt go down that road as their no help and concentrate on other qualified med people to write to school.
    No doubt this is stressing you out. speak to your gp and how it affects you. at a later date you may mention how their behaviours have affected you and you have evidence in your gps notes.
    Theres some right heartless people knocking about and speaking of knocking you knock em out.....by going down the right road of course.

    p.s. you know if you didnt do you best for your daughter they would be on your back for not looking after her properly,its a joke.


    Hi,

    Your right this is stressing me out I have done nothing but cry and have a constant headache over the whole situation which i know does not help my poor daughter..she also is picking up on vibes that things are wrong!!
    I have today rang her cons who have been the most wonderful support to us all as a family he has become a very big part of our life so hopefully he will get back to me on monday and offer some advice!
    I have made an appointment to see the school nurse on tuesday so i will go there armed with my case and what info I have and see what she has to say....i am not giving up on this!

    Also because this has come up we have been looking into what help she should be getting at school as they are saying she is sooooo behind in all subjects ( i made it awre at parents evening that i was concerned with her hand writing as i had noticed it to be quite messy as if she was struggleing to write and i got told that she shold practise more then and sent her home with more writing work!!!!), it has come to light that she should possibley have a LSA and other things to help her through school but as far as I know she has not got any extra support of any kind!
    The reason this is all blown up as last week they had outdoor PE and I have given shannon a tracksuit to wear to avoid her getting cold and ill, she was told by a suply teacher she was not aloud to wear it as no one else in her class had one...so that made me ring the school to complain which has then brought all this up!!!!!!

    Do you have any idea what special help or equipment she would be entitled to??

    Thankyou

    shannons mum
    xx

    Hi again
    I would ask the consultant to get daughter referred to childs occupational therapy team. They can offer hand writing schemes to help,suggest grip pens to help,perhaps your daughter is also dyspraxic,hypermobility of finger joints etc and they can advise. Actually school can do a referral via SENCo but sounds like the lot of them are a waste of time and do the less they can get away with.
    I am glad you have consultant support as he/she very senior in all of this.
    Infact everytime there is an incident like the pe kit fiasco do it in writing then you have a nice file when needed in the future to show the total lack of support and help you are getting.
    If your child is behind at school, why havent they assessed her in school for extra suppport and put her on special needs register? why havent they sought help from education authority?
    You can also see your councillor or MP....this gets things moving!
    You go along like youre cooperating so the school cannot fault you.
    I have found primary school tend to take longer to get things done but secondary school seem to give help quicker so that should re-assure you for the future at least.
    I come on this site for myself but have had issues with my kids!!!and had to fight for help.
    If you want to private PM me you can.
    Careful cos you can get very worn out with this,been there and worn the t shirt.
    x
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    oneday wrote:
    oneday wrote:


    Hi again
    Head needs a good rollocking.
    Good to see school nurse but that depends if any good and not one of these that do nothing! Whos the best medical person you see, hospital or Gp i.e someone who knows more the medical side of her condition, see them first, or ring secretary i.e. drs secretary not school and ask them.
    When you have guidance off proper helpful medical people then see the school nurse. If you think nurse isnt behaving as though on your side and being helpful i wouldnt go down that road as their no help and concentrate on other qualified med people to write to school.
    No doubt this is stressing you out. speak to your gp and how it affects you. at a later date you may mention how their behaviours have affected you and you have evidence in your gps notes.
    Theres some right heartless people knocking about and speaking of knocking you knock em out.....by going down the right road of course.

    p.s. you know if you didnt do you best for your daughter they would be on your back for not looking after her properly,its a joke.


    Hi,

    Your right this is stressing me out I have done nothing but cry and have a constant headache over the whole situation which i know does not help my poor daughter..she also is picking up on vibes that things are wrong!!
    I have today rang her cons who have been the most wonderful support to us all as a family he has become a very big part of our life so hopefully he will get back to me on monday and offer some advice!
    I have made an appointment to see the school nurse on tuesday so i will go there armed with my case and what info I have and see what she has to say....i am not giving up on this!

    Also because this has come up we have been looking into what help she should be getting at school as they are saying she is sooooo behind in all subjects ( i made it awre at parents evening that i was concerned with her hand writing as i had noticed it to be quite messy as if she was struggleing to write and i got told that she shold practise more then and sent her home with more writing work!!!!), it has come to light that she should possibley have a LSA and other things to help her through school but as far as I know she has not got any extra support of any kind!
    The reason this is all blown up as last week they had outdoor PE and I have given shannon a tracksuit to wear to avoid her getting cold and ill, she was told by a suply teacher she was not aloud to wear it as no one else in her class had one...so that made me ring the school to complain which has then brought all this up!!!!!!

    Do you have any idea what special help or equipment she would be entitled to??

    Thankyou

    shannons mum
    xx

    Hi again
    I would ask the consultant to get daughter referred to childs occupational therapy team. They can offer hand writing schemes to help,suggest grip pens to help,perhaps your daughter is also dyspraxic,hypermobility of finger joints etc and they can advise. Actually school can do a referral via SENCo but sounds like the lot of them are a waste of time and do the less they can get away with.
    I am glad you have consultant support as he/she very senior in all of this.
    Infact everytime there is an incident like the pe kit fiasco do it in writing then you have a nice file when needed in the future to show the total lack of support and help you are getting.
    If your child is behind at school, why havent they assessed her in school for extra suppport and put her on special needs register? why havent they sought help from education authority?
    You can also see your councillor or MP....this gets things moving!
    You go along like youre cooperating so the school cannot fault you.
    I have found primary school tend to take longer to get things done but secondary school seem to give help quicker so that should re-assure you for the future at least.
    I come on this site for myself but have had issues with my kids!!!and had to fight for help.
    If you want to private PM me you can.
    Careful cos you can get very worn out with this,been there and worn the t shirt.
    x

    Hi There,

    Shannon has been diagnosed with Hypermobility as well it is on her first original letter. So another thing I can add to the very long list with them!

    I am waiting for her cons to get back to me so I shall ask him for advice, he is really nice so hopefully he will help me.

    Take care

    Sam
    XX
  • oneday
    oneday Member Posts: 1,650
    edited 30. Nov -1, 00:00
    oneday wrote:


    Hi,

    Your right this is stressing me out I have done nothing but cry and have a constant headache over the whole situation which i know does not help my poor daughter..she also is picking up on vibes that things are wrong!!
    I have today rang her cons who have been the most wonderful support to us all as a family he has become a very big part of our life so hopefully he will get back to me on monday and offer some advice!
    I have made an appointment to see the school nurse on tuesday so i will go there armed with my case and what info I have and see what she has to say....i am not giving up on this!

    Also because this has come up we have been looking into what help she should be getting at school as they are saying she is sooooo behind in all subjects ( i made it awre at parents evening that i was concerned with her hand writing as i had noticed it to be quite messy as if she was struggleing to write and i got told that she shold practise more then and sent her home with more writing work!!!!), it has come to light that she should possibley have a LSA and other things to help her through school but as far as I know she has not got any extra support of any kind!
    The reason this is all blown up as last week they had outdoor PE and I have given shannon a tracksuit to wear to avoid her getting cold and ill, she was told by a suply teacher she was not aloud to wear it as no one else in her class had one...so that made me ring the school to complain which has then brought all this up!!!!!!

    Do you have any idea what special help or equipment she would be entitled to??

    Thankyou

    shannons mum
    xx

    Hi again
    I would ask the consultant to get daughter referred to childs occupational therapy team. They can offer hand writing schemes to help,suggest grip pens to help,perhaps your daughter is also dyspraxic,hypermobility of finger joints etc and they can advise. Actually school can do a referral via SENCo but sounds like the lot of them are a waste of time and do the less they can get away with.
    I am glad you have consultant support as he/she very senior in all of this.
    Infact everytime there is an incident like the pe kit fiasco do it in writing then you have a nice file when needed in the future to show the total lack of support and help you are getting.
    If your child is behind at school, why havent they assessed her in school for extra suppport and put her on special needs register? why havent they sought help from education authority?
    You can also see your councillor or MP....this gets things moving!
    You go along like youre cooperating so the school cannot fault you.
    I have found primary school tend to take longer to get things done but secondary school seem to give help quicker so that should re-assure you for the future at least.
    I come on this site for myself but have had issues with my kids!!!and had to fight for help.
    If you want to private PM me you can.
    Careful cos you can get very worn out with this,been there and worn the t shirt.
    x

    Hi There,

    Shannon has been diagnosed with Hypermobility as well it is on her first original letter. So another thing I can add to the very long list with them!

    I am waiting for her cons to get back to me so I shall ask him for advice, he is really nice so hopefully he will help me.

    Take care

    Sam
    XX

    Hypermobilitly if say in fingers etc schools should provide adjustments for this such as
    grip pens, more time in sats and exams as takes longer to write,even a writer for her in exams if a severe problem,that sort of thing.........think the school should be sending their teachers on some training awareness courses!
  • oneday
    oneday Member Posts: 1,650
    edited 30. Nov -1, 00:00
    oneday wrote:


    Hi,

    Your right this is stressing me out I have done nothing but cry and have a constant headache over the whole situation which i know does not help my poor daughter..she also is picking up on vibes that things are wrong!!
    I have today rang her cons who have been the most wonderful support to us all as a family he has become a very big part of our life so hopefully he will get back to me on monday and offer some advice!
    I have made an appointment to see the school nurse on tuesday so i will go there armed with my case and what info I have and see what she has to say....i am not giving up on this!

    Also because this has come up we have been looking into what help she should be getting at school as they are saying she is sooooo behind in all subjects ( i made it awre at parents evening that i was concerned with her hand writing as i had noticed it to be quite messy as if she was struggleing to write and i got told that she shold practise more then and sent her home with more writing work!!!!), it has come to light that she should possibley have a LSA and other things to help her through school but as far as I know she has not got any extra support of any kind!
    The reason this is all blown up as last week they had outdoor PE and I have given shannon a tracksuit to wear to avoid her getting cold and ill, she was told by a suply teacher she was not aloud to wear it as no one else in her class had one...so that made me ring the school to complain which has then brought all this up!!!!!!

    Do you have any idea what special help or equipment she would be entitled to??

    Thankyou

    shannons mum
    xx

    Hi again
    I would ask the consultant to get daughter referred to childs occupational therapy team. They can offer hand writing schemes to help,suggest grip pens to help,perhaps your daughter is also dyspraxic,hypermobility of finger joints etc and they can advise. Actually school can do a referral via SENCo but sounds like the lot of them are a waste of time and do the less they can get away with.
    I am glad you have consultant support as he/she very senior in all of this.
    Infact everytime there is an incident like the pe kit fiasco do it in writing then you have a nice file when needed in the future to show the total lack of support and help you are getting.
    If your child is behind at school, why havent they assessed her in school for extra suppport and put her on special needs register? why havent they sought help from education authority?
    You can also see your councillor or MP....this gets things moving!
    You go along like youre cooperating so the school cannot fault you.
    I have found primary school tend to take longer to get things done but secondary school seem to give help quicker so that should re-assure you for the future at least.
    I come on this site for myself but have had issues with my kids!!!and had to fight for help.
    If you want to private PM me you can.
    Careful cos you can get very worn out with this,been there and worn the t shirt.
    x

    Hi There,

    Shannon has been diagnosed with Hypermobility as well it is on her first original letter. So another thing I can add to the very long list with them!

    I am waiting for her cons to get back to me so I shall ask him for advice, he is really nice so hopefully he will help me.

    Take care

    Sam
    XX

    Sam,have sent you a personal message.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Oh yeah I haven't read through this whole post but just starting to read it has reminded me of something I forgot to put on your other thread. The foundation unit head has told me that she will get everything sorted with senco and get the process rolling so that by the time she's started school full time hopefully there will be extra care for her. I did find something on here very useful http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/Booklets2/main_content/chat_2_teachers.pdf

    Perhaps give this link to the school and get them to print it off. They really should be supporting you in this not fighting you every step of the way. I have given this link to the school and they are now looking into getting the help and support kayleigh needs. So far this month she's only been in 3 times (only goes 3 days a week tuesday, wednesday and friday) but has missed so much already due to hossie appointments etc. and they have been fantastic about it saying her health has to come first if sh's in to much pain then she's not going to learn anyway we would rather she was happy than struggling. Must say I do have such great support from them.
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    illihor wrote:
    Oh yeah I haven't read through this whole post but just starting to read it has reminded me of something I forgot to put on your other thread. The foundation unit head has told me that she will get everything sorted with senco and get the process rolling so that by the time she's started school full time hopefully there will be extra care for her. I did find something on here very useful http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/Booklets2/main_content/chat_2_teachers.pdf

    Perhaps give this link to the school and get them to print it off. They really should be supporting you in this not fighting you every step of the way. I have given this link to the school and they are now looking into getting the help and support kayleigh needs. So far this month she's only been in 3 times (only goes 3 days a week tuesday, wednesday and friday) but has missed so much already due to hossie appointments etc. and they have been fantastic about it saying her health has to come first if sh's in to much pain then she's not going to learn anyway we would rather she was happy than struggling. Must say I do have such great support from them.


    Hi again,

    Thankyou so much for the link I have printed it off and am handing in to school tomorrow, this is perfect. I have been seaching for info for them so I really pleased now. I have read though and it tells them alot about the needs of a child with arthritis. Just hope they take the time to read it now.

    Shannons health is my main concern too but when I said this to the headmaster he told me "well she need her education for further future bla bla bla"...yes I know this and we have paid a private tutor to help her at home its not like I just cant be bothered! Just makes me soooo mad!

    Whatever I say to them im just a moaning mother!!


    ((( hugs to Kayleigh)))

    Take Care
    Sam
    xx
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    your welcome hun I hope they listen now and if not take it higher to local education authority etc.

    good luck ((((((((((HUGS))))))))))))))

    Michelle xxx