UPDATE: Re school...what a joke!!!! grr

shannonsmum

Hi Guys,

Well I thought I would update you on Shannon return to school after the xmas holidays...the school was shut for 2 weeks due to heating failure so she didnt have long there this term!! ( although seems longer)..

Well we went in for a meeting with the head, who seemed very nice and very understanding and promised to do his best to help Shannon through her school life, he asked questions and we answered them the best we could. They have also had the visit from the community poeds to explain childhood Arthritis and I thought all was going to be easier for shannon I also shared my concerns that I thoght shannon may be Dislexic but was told even if she was diagnosed with it she wouldnt get any extra help in school!!!!!!!!!!!!!! TYPICAL

So I explained that even a chair is a big help rather than making her sit on the floor its something that doesnt cost anything and takes a second to sort out! Well shannon informs me that its hit and miss as to if she has a chair or not!

We also had a 5 min meeting with the SENCO as she is new and had only just started. She said she will read up on Shannon and then to arrange a meeting in a couple of weeks!

So I thought things were going along ok, it was a start.......so yesterday I had a letter drop through my door from the school stating that shannon is wearing incorrect school uniform..hand written: boots not allowed- school shoes in plain black only.

I went mad!!!!!!! Does this man not get a thing that is being said to him, she wears boots as she has done her whole school life because she cant get shoes on and she need the surport for her ankle. So another trip into school to deal with this!

I am seriously gettin to the point of reporting this school, i havent as I dont want to make shannons day any worse and I fear if I report them they will take it out on her. I really dont was to move her as we have done that before and she has friends and seems happy in a way!

Shannon is now having councelling from a friend who is trained she has said she will come with me for the next meeting with the SENCO and help me to get things shannon needs!

Well thats it from me for now!

Hugs all round.
Sam
xx

shannonsmum

The thing is I go in and he somehow always says the right thing and shoots me down in flames!! Believe me I get very frustrated and wish I new what to do.....I have been given so many different names of people to go to I am confused with who to go and what to do!

See on the surface shannon looks and acts like a 'normal' little girl, she is very lively and jumps around like a loony so to them they see nothing wrong with her but of course this is controlled by her medication, I can not get them to see this.

We have a dvd of Shannon when she was 2 screaming in pain and struggleing to walk I wanted to copy it and make him watch it but my hubby said that was then this is now but I though it may make him see the seriousness of it!!

What does a council's equalities officer do?

Thanks
Sam
x

delboy wrote:

I think you are very self controlled, I would have been breaking heads if my child had been treated like yours. Has this man never heard of the DDA and the problems he could suffer with if he doesn't comply?

Have you contacted your local council's equalities officer?

I do hope you can get this sorted amicably but I fear you may have to resort to a higher lever of command and risk upsetting the school.

illihor

Oh Hun hugs. I can't believe you are being treated like this. Thankfully (or not depends how you look at it) Kayleighs school has seen the pain she can be in and have called me up several times as they don't know to do, however I can see me having problems with her head when she starts full time in September.

As a curtasy (?sp) I told her kayleigh will be wearing boots that will be pink with flowers on omg the talking I got was unreal saying she should be in shoes etc this was before I knew she got dla I explained about them being prescription shoes etc but it was like she didn't want to hear later that week I found out about dla told the head and she visibly sank and tried to say about shoes but I had gone to her with a school governer in tow who read her the disability act but I can see me having trouble still.

The nurses on childrens outpatients are lovely and will write any letter needed as I explained the possible shoe issue to them, they were upset that the head had even said this to me and she doesn't have them yet.

I so hope you can get this sorted perhaps can you get podiatry to write a letter explaining about the shoes etc this might have more of a bearing for you. I know what you mean about the meds masking the illness but that's all it is. Both physio and consultant have said the same thing about the med I got given an info sheet about mtx which I have copied for school do they understand just how powerful and necessary this drug is to her well being.

If you would like a copy of this sheet I can scan it in for you and email but won't be till later this week.

I so hope you can get somewhere forward soon withthis school but I think things do need to be taken further as they just aren't listening to you.

shannonsmum

Hi Hun,

Thanks for your reply. I really don't see what the big deal is wearing boots as long as they are not big clumpy things but come on these are children with a disability so they are not going to be. Its just another thing to pick on.

I would be really greatful if you could email me a copy of the mtx info sheet as I have nothing about it although shans cons did write a letter to the head saying it was a powerful drug but still don't think it has gone in. I have searched the net for some info but it doesnt really give me info that I think the school can understand as I seem to need simple clear info!!!!!!!

With the school Gov can you just approach any of them or does it have to be all of them??

Shannon used to be at this school before and they were really good with her but we moved and changed school who were really good regarding shans disability, but we moved back because I needed support from family ect and put her back in the original school but this time around it has been a nightmare! All was going ok untill september when they had to change teachers and its been a battle!

Take Care
Sam
xx
( i will pm you my email hun)

illihor wrote:

Oh Hun hugs. I can't believe you are being treated like this. Thankfully (or not depends how you look at it) Kayleighs school has seen the pain she can be in and have called me up several times as they don't know to do, however I can see me having problems with her head when she starts full time in September.

As a curtasy (?sp) I told her kayleigh will be wearing boots that will be pink with flowers on omg the talking I got was unreal saying she should be in shoes etc this was before I knew she got dla I explained about them being prescription shoes etc but it was like she didn't want to hear later that week I found out about dla told the head and she visibly sank and tried to say about shoes but I had gone to her with a school governer in tow who read her the disability act but I can see me having trouble still.

The nurses on childrens outpatients are lovely and will write any letter needed as I explained the possible shoe issue to them, they were upset that the head had even said this to me and she doesn't have them yet.

I so hope you can get this sorted perhaps can you get podiatry to write a letter explaining about the shoes etc this might have more of a bearing for you. I know what you mean about the meds masking the illness but that's all it is. Both physio and consultant have said the same thing about the med I got given an info sheet about mtx which I have copied for school do they understand just how powerful and necessary this drug is to her well being.

If you would like a copy of this sheet I can scan it in for you and email but won't be till later this week.

I so hope you can get somewhere forward soon withthis school but I think things do need to be taken further as they just aren't listening to you.

shannonsmum

Thanks delboy I shall have a read when all is quiet! x

delboy wrote:

shannonsmum wrote:

What does a council's equalities officer do?

Thanks
Sam
x

THIS is what Birmingham's equalities is all about.

The Disability Discrimination Act (DDA) 1995 aims to end the discrimination that many disabled people face. The Act makes it unlawful to discriminate against disabled people in relation to employment, education, the provision of goods, facilities and services or the disposal or management of premises.

illihor

Yep no probs will get that done as soon as at least it's half term now so can forget about school for a while.

You can approach any governer we've become good friends now and he's not one to mince his words and doesn't care if he gets on wring side of people if it means things get done etc.

Kayleigh isn't just under our local hospital but is now under bristols childrens hosp which is where most of the info comes from as they have a dedicated childrens department to deal with arthritis.

I've got a big pink folder with everything in I also get copies of every letter her consultant writes to gp so have a lot more I info in detail about it all.

Michelle

shannonsmum

Hi Michelle,

Yep am glad we have school hols to.

Shannon is under great ormond street which had been very good but they have just got a new lady take over who isnt quite as good as her original cons, our local hospital and shannons cons here are really lovely and he is being the most supportive man and i do get copies of all letters. And he has wrote to the school and got people in to spk to them but they just are not getting it.

I may have a look into who school governers are then and maybe take that step for some extra surport.

Thanks Hun
Sam
xx

illihor wrote:

Yep no probs will get that done as soon as at least it's half term now so can forget about school for a while.

You can approach any governer we've become good friends now and he's not one to mince his words and doesn't care if he gets on wring side of people if it means things get done etc.

Kayleigh isn't just under our local hospital but is now under bristols childrens hosp which is where most of the info comes from as they have a dedicated childrens department to deal with arthritis.

I've got a big pink folder with everything in I also get copies of every letter her consultant writes to gp so have a lot more I info in detail about it all.

Michelle

chahoua

Reading this has brought back memories of my school days. I was 18 months old when I was diagnosed and my condition was pretty stable until I reached senior school. Before moving up from juniors we went to an open day at the senior school. My parents explained to the deputy head about my condition and that at times I would need extra help (ie. a chair for assembly, getting out of lessons a couple of minutes earlier to avoid the rush, trousers in the winter). Her answer was "do you think she should go to the special school?" (I'm getting angry just typing this). Our local 'special' school was only for children with severe mental disability. (I must apologise for using that term - it's horrible but that's what they called it back then). My parents explained that it was my body that needed the extra help not my brain. It would have easier to take if the deputy head wasn't disabled herself!

After reading your post I told my parents about your situation. Unfortunately, it appears that times haven't changed. They said don't be fobbed off. Keep on at them. In the end they will get it. My Mum had to fight for two years for the school to allow me to wear either thick tights or trousers in the colder weather. In the end it was a long letter from my rheumatologist that finally got the message through.

Jackie xxx

iggly_pop

My first recommendation is to get in contact with the LEA (local education authorities) make them aware of the issue and ask for advice, i myself had this problem when i was at secondary school (now at college) i had to wear specific supportive trainers due to over pronation and collapsing arches- now have OA and a long list of other conditions, but nevertheless after about three doctors notes the school still denied permission with the "cant have one rule for one person and a different one for everyone else" etc.. etc.. we were fighting with the school for about 6 months before my mum called the LEA, and after speaking to them, went back into my school and mentioned to the head teacher that the LEA were now aware of this case and that they needed to start co-operating unless they wanted them to become involved rather than just aware. Needless to say they agreed as soon as they were mentioned- your child needs these shoes to maintain her condition at the end of the day and without them no one knows what may happen so dont give up fighting for what you know is right and you know she needs

Best of luck with everything
And i hope you find a way to convince this ignorant school

Rebecca

shannonsmum

Hi There,

Thankyou so much for your reply. I am sorry to hear that you have suffered since you were 18mths.

And yes it has made me really angry, what difference does it make if you have trousers on? its just picking on and singleing out! I hate it. grrrrr
Its such a worry with my little one but we are slowly getting there. I am very lucky that I have a good family and friend for support.

I wish you well.

Take Care
Sam
xx

chahoua wrote:

Reading this has brought back memories of my school days. I was 18 months old when I was diagnosed and my condition was pretty stable until I reached senior school. Before moving up from juniors we went to an open day at the senior school. My parents explained to the deputy head about my condition and that at times I would need extra help (ie. a chair for assembly, getting out of lessons a couple of minutes earlier to avoid the rush, trousers in the winter). Her answer was "do you think she should go to the special school?" (I'm getting angry just typing this). Our local 'special' school was only for children with severe mental disability. (I must apologise for using that term - it's horrible but that's what they called it back then). My parents explained that it was my body that needed the extra help not my brain. It would have easier to take if the deputy head wasn't disabled herself!

After reading your post I told my parents about your situation. Unfortunately, it appears that times haven't changed. They said don't be fobbed off. Keep on at them. In the end they will get it. My Mum had to fight for two years for the school to allow me to wear either thick tights or trousers in the colder weather. In the end it was a long letter from my rheumatologist that finally got the message through.

shannonsmum

Hi Rebecca,

Thanks for your reply. It just make me so mad!

My hubby went in to see the head and he was nice as pie about the boots in the end...i think my hubby scares him abit so he is all understanding when he goes in to speak to him.

The only thing he said is when it comes to buying new ones can we get plain black as the ones she has now have pink beading on!!!!
But she can have books.

So thats sorted for now.

I will definately keep the LEA as a port of call and something to threaten with. And also I am meeting with the SENCO next week so will make it clear what I want for Shannons needs..ie a care plan and IEP.

Take Care

Sam
xx

iggly_pop wrote:

My first recommendation is to get in contact with the LEA (local education authorities) make them aware of the issue and ask for advice, i myself had this problem when i was at secondary school (now at college) i had to wear specific supportive trainers due to over pronation and collapsing arches- now have OA and a long list of other conditions, but nevertheless after about three doctors notes the school still denied permission with the "cant have one rule for one person and a different one for everyone else" etc.. etc.. we were fighting with the school for about 6 months before my mum called the LEA, and after speaking to them, went back into my school and mentioned to the head teacher that the LEA were now aware of this case and that they needed to start co-operating unless they wanted them to become involved rather than just aware. Needless to say they agreed as soon as they were mentioned- your child needs these shoes to maintain her condition at the end of the day and without them no one knows what may happen so dont give up fighting for what you know is right and you know she needs

Best of luck with everything
And i hope you find a way to convince this ignorant school

Rebecca

kate21

I'm really sad to hear of the problems you are having and others seem to have had in the past. I am a trainee teacher and schools don't seem to be that bothered about my arthritis either! I hope you don't feel like you have been singled out, there is a just a huge lack of understanding at the moment for people with disabilities that are not obviously visible.

If you're not getting anywhere with the head teacher, then I would definitely speak to the goveners or citizens advice and seek some help. You could always inform the head that you are going to do this before you do so, in case it helps to highlight the importance of the issue to you.

Have you heard of "the spoon theory" - type it into google and see what you get. I find this a great way of explaning arthritis to people, might be worth a try with the teachers and the head.

Having worked in a number of schools I have seen many children with pink boots and similar things which are related to disabilities or injuries which have not been a problem for the school at all. Of course there are exceptions, but I hope these schools are getting their act together, maybe you can push them in the right direction by fighting for your daughter's cause.

As far as I know state primary schools are not allowed to enforce a school uniform anyway, so if the situation does result in a higher authority being involved, I'm pretty confident you won't have a problem.

If I can help with anything please ask and I'll see what I can find out. x Kate

shannonsmum

Hi Kate,

Thanks so much for your reply, I will google that and have a look.

I will fight it and get what I want in the end. And hopefully it may help others in the future. I think its very sad that there is no understanding of disabilitys in school especially ones that are not so obvious. Shannon had more care over her broken arm that her Arthritis because it was a visible thing!!

Thanks again,

Sam
xx

kate21 wrote:

I'm really sad to hear of the problems you are having and others seem to have had in the past. I am a trainee teacher and schools don't seem to be that bothered about my arthritis either! I hope you don't feel like you have been singled out, there is a just a huge lack of understanding at the moment for people with disabilities that are not obviously visible.

If you're not getting anywhere with the head teacher, then I would definitely speak to the goveners or citizens advice and seek some help. You could always inform the head that you are going to do this before you do so, in case it helps to highlight the importance of the issue to you.

Have you heard of "the spoon theory" - type it into google and see what you get. I find this a great way of explaning arthritis to people, might be worth a try with the teachers and the head.

Having worked in a number of schools I have seen many children with pink boots and similar things which are related to disabilities or injuries which have not been a problem for the school at all. Of course there are exceptions, but I hope these schools are getting their act together, maybe you can push them in the right direction by fighting for your daughter's cause.

As far as I know state primary schools are not allowed to enforce a school uniform anyway, so if the situation does result in a higher authority being involved, I'm pretty confident you won't have a problem.

If I can help with anything please ask and I'll see what I can find out. x Kate

suncatcher

I hope you can get some help with shannons dyslexia. I have two children with it. My eldest daughter now 16 had it mild it was missed even though she had a so called test at school which said she wasnt. I took her to a dyslexia instintute and she had mild dyslexia this was at ten years old. We could only have a computor program which was recomemded by the institute which heled ohter children also which the school got when i showed um the report and extra time in exams. No more help she had dylexia graphia which is dyslexia in her writing and spelling her reading was brilliant. Now my daughter i dont worry about as she is bright and when she uses a computor she is the same as everyone else you cannot tell the differance.
My son his I told the staff at nursery to look for signs he started having problems recognisin remembering basic numbers words letters. I got the dylexisa **** in brirmingham to test him aged 4 he had got dyslexia and i got them to refer me to Aston uni were i got my daughters coloured specticals from which helps children with dyslexia. He has been tested there and we are trialing a coloured sheet to see if it helps him the school has put him on special measures before he can get the help in class so i am waiting now.
Has shannon been tested ? joining a dyslexia association will help give you advice to help shannon. And good luck with senco keep pushing for help. best of luck with that and im sorry you are having problems with the school. from joanne price

shannonsmum

Hi Joanne,

Thanks for your reply.

When I asked about Shannon being tested for Dyslexia the SENCO told me that even if she was diagnosed with it she wouldn't get any extra help in school. I have no idea what she would be entittled to and what help she should get. The SENCO said she would have a look at what shannon was up to and see what she though. But she said to have her tested it costs a fortune and as I said she said even with a diagnoses she wouldnt get any extra help.

I am so confused as to where to even begin so I have broke it down into bite sizes...get the Arthritis side all dealt with and then tackle the Dyslexia.

Did you pay to have yours tested for it?

Take Care
Sam
xx

joanneprice wrote:

I hope you can get some help with shannons dyslexia. I have two children with it. My eldest daughter now 16 had it mild it was missed even though she had a so called test at school which said she wasnt. I took her to a dyslexia instintute and she had mild dyslexia this was at ten years old. We could only have a computor program which was recomemded by the institute which heled ohter children also which the school got when i showed um the report and extra time in exams. No more help she had dylexia graphia which is dyslexia in her writing and spelling her reading was brilliant. Now my daughter i dont worry about as she is bright and when she uses a computor she is the same as everyone else you cannot tell the differance.
My son his I told the staff at nursery to look for signs he started having problems recognisin remembering basic numbers words letters. I got the dylexisa **** in brirmingham to test him aged 4 he had got dyslexia and i got them to refer me to Aston uni were i got my daughters coloured specticals from which helps children with dyslexia. He has been tested there and we are trialing a coloured sheet to see if it helps him the school has put him on special measures before he can get the help in class so i am waiting now.
Has shannon been tested ? joining a dyslexia association will help give you advice to help shannon. And good luck with senco keep pushing for help. best of luck with that and im sorry you are having problems with the school. from joanne price

suncatcher

Hi at the institute i paid 290 with a pycolagist doing it. with my son i was all ready a member of dab the dyslexia assosiation in Birmingham and i asked about my son well they dont test normally till 5 years because i had my daughter with it husbend and his brother as it is often family inherited and the nursery gave a good report i told em what to look for.
They noticeD other things like his lack of coordination odd pen holding a reluctance to draw or paint which can be pointers to it. The dab agreeed to test him at 4 and charged just 25 pounds for the lucid test which can indicate dyslexia but not say how bad or which areas. You have to be carefull where u go. joanne