Message Boards for the CF Trust

Replies: 26 Pages: 2 [ Previous \| 1 2 ]

MoO

Posts: 43
From: West Midlands
Registered: 06-Nov-2006

Re: Advice needed about schools
Posted: 22-Nov-2006 14:18

Reply

I have had problems with Grace also in the past regarding school.

I have found that she doesn't need to be statemented, but she does need a care plan. Whilst the staff are not oblliged to give out medication, they are also not supposed to be prejudiced.

Get in touch with the education department at your local council and have a chat with the Special needs coordinator.

We have had to compromise, but Grace is given a set amount of creon at the start of lunch by her teacher before she goes off for her own break, that was the only alternative, but it seems to be working ok and we pack her lunch so we know how much she will need. Although her diectician said recently we can do that also with school dinners because they are very similar in fat and calorie content on a daily basis.

Hope you get things up and running quickly.

MoO

ange

Posts: 4
Registered: 12-Nov-2006

Re: Advice needed about schools
Posted: 22-Nov-2006 16:24

Reply

I am a teacher in a reception class and a Mum of a little girl with cf. The school should provide you with a form to fill in for medication, this is the procedure at our school.

A child with cf may have special needs if cf prevents them from making progress. The majority of children with cf fit into the mainstream without the need for a statement. You may need to check the school's policy on lunch time supervision and arrange to meet with staff to explain the child's lunch time needs.

cupcake

Posts: 141
From: england
Registered: 02-Mar-2004

Re: Advice needed about schools
Posted: 22-Nov-2006 20:19

Reply

Thank you so much to everyone who has taken the time to reply. You have helped so much and I had a long chat with the teachers at our first choice of school today about everything.

At the moment I have managed to find out from her nursery that her already being there and the fact she has cf could mean we get a priority place. The pre-school team are contacting me Monday and also the lady who deals with the admissions for my first choice of school. I really hope her cf means she gets the first choice school as they have been great so far in the nursery - she eats with the other children and its the nursery teacher who gives the creon to her, with no problems at all. All I had to do was sign the medical form to give my consent, and instruction of what she needs.

They have told me to apply with a covering letter from her cf team saying why we should get her first choice, her 'special needs' with regards to medication only, and also the fact that this school an excellent provision in that school for children like that.

They also told me if you have a statement you automatically get the first choice from suitable schools, but at the moment her needs don't warrant a statement (because her needs are medical not educational). They did say though that when she starts missing school regularly they would want her to have one, and would give home schooling if necessary for long absences once statemented.

Thanks again, your replies have all helped me so much with this. Fingers crossed I get the school we want.

Emma S

Posts: 59
From: Battle, East Sussex
Registered: 06-Nov-2006

Re: Advice needed about schools
Posted: 22-Nov-2006 22:16

Reply

If you have a good reason to want the particular school, then apply under medical grounds and make a case for it - get your team to write a supporting letter - medical grounds are higher up the list than siblings, so if they know her, the other kids know her, etc, it all helps
Jasmine got into her little school on medical grounds, our reasons were that
a. it was a small school with small intake (14 as opposed to 60) so less chance of infection
b. my parents, second carers, lived in the village
c. all her friends, who were used to her medications, were going, so less chance of being picked on as unusual
d. being a small school they had the time/staff/interest to administer meds, see that she eats, monitor any problems

The school give me a menu, and I write the number of creon relating to each meal on it so that they know what to give her. she sits with the others, she has some at the start, and some before pudding (unless she has hardly eaten the 1st, then those generally suffice for pudding too)
In the afternoon break she leaves class early and goes to the secretary for a glass of milk and a cake
If she hasnt had breakfast they will give her a snack about 9.30 so that she doesnt flake out

If she is on antibiotics I just sign a form and they give it to her, the same with inhalers. At the moment she just has a bronchodialator which they use their judgement as to whether she needs it or not.

I give milk to the school for her to drink, take in biscuits, chocolate, cakes, flapjacks, etc for snacks, and butter for the cook to put on all her veg.

I even got them doing 'huffing' and coughing up when she was having a bad spell (tho the secretary cant face that, so one of the teaching assistants did it)

I got the community nurse in to talk to them and run through any problems, the head was there, secretary, class teachers and assistants, SENCO

She didnt need statementing, but when she missed alot of school earlier this year the education dept stepped in to provide a teacher in the hospital, and then a home tutor for an hour a week to catch up. They made a statement which set out that they would supply home tutoring if she missed more than 2 weeks of school

This is just a small local village school so nothing private or special - these are thew sort of things you should expect them to do, especially if they have accepted your child on the medical grounds

hope this helps
emma x

MISSY

Posts: 17
From: GLASGOW
Registered: 07-Feb-2004

Re: Advice needed about schools
Posted: 23-Nov-2006 01:18

Reply

Hi there,

I think there is too much made of "healthy eating" in schools. It angers me when people tell kids with CF they aren't eating healthy foods. Some people just don't think without speaking!

My daughter takes her own Creon with her lunch (school-dinners). I prefer it this way as she doesn't have to go off to the school office etc.... The only problem has been that she has occasionally forgotten to take all of her Creon with her meal and has had toilet troubles later on in the day! The other children have asked about her Creon which does annoy her. One of them said "You must have an illness". I was quite upset about this as I want to be able to give my child information at appropriate stages rather than her learning about her own condition from her class-mates. I have found school more difficult than Nursery, I suppose this is because they get more personal attention at Nursery but all in all the school have been quite good.

Good luck

Missy

Tamariki

Posts: 54
Registered: 08-Nov-2006

Re: Advice needed about schools
Posted: 23-Nov-2006 10:03

Reply

I do not see why having CF would give anyone a priority place at a school. asthmatics, diabetics and a whole host of other conditions are all catered for at schools so will CF.

cfmom

Posts: 17
Registered: 08-Nov-2006

Re: Advice needed about schools
Posted: 24-Nov-2006 17:30

Reply

Nobody said having cf meant you got priority. It was said that having "special needs" gets priority!

Tamariki

Posts: 54
Registered: 08-Nov-2006

Re: Advice needed about schools
Posted: 24-Nov-2006 20:15

Reply

All I am saying is it doesn't! Upto 25% of any class can be special needs. Be it medical or educational, if all of them get priority status it sort of takes away the priority bit surely.

Statments can get you priority - special needs doesn't! If a school is under subscribed then they will take everyone wanting to be on there list. If a school has a full list then they will prioritise from their admissions list.

If you want a school because of 'special needs' then these needs will have been identified and there will be a statment.

All other'needs' can be meet at any school.(or so the LEA will argue!)

Our childrens needs are special to us but they are just another 'need' at schools, as I said before the same as a whole load of other medical conditions.

Emma S

Posts: 59
From: Battle, East Sussex
Registered: 06-Nov-2006

Re: Advice needed about schools
Posted: 27-Nov-2006 22:39

Reply

Jasmine was accepted at her school on medical grounds, which I dont think is the same as 'special needs', at least she is not classified as a special needs pupil, and doesnt have to see the SENCO (although she was at the meeting with the nurse), and it is medical grounds, not special needs that is listed on the admission forms.
she is not statemented, mainly due to the fact that she hasnt missed much school or had her schooling affected by the CF.
the medical grounds were relevent in relation to the school - a school which has big old fashioned high ceilinged classrooms and an intake of 14 is a far better option for a child with cf, when we are talking about exposure to infection, than 60 kids crammed into 2 adjoining prefabs(which are not considerations in alot of the other medical conditions) Also as far as medicines go, her school has the time and staff and willingness to be very helpful, whereas my local school would administer 'regular' medicines, such as creon, but if she was on a course of antibiotics, or any other occasional medication (inhalers, etc) I would have had to go up to the school to give them myself, as they would not have been written into her daily routine, so whether it is supposed to accomodate or not, there is a variety as to what that accomodation to 'needs' a school will provide.
I cannot speak for anyone else, but we applied to a very popular small village school, (not our local one)which is always oversubscribed, on medical grounds, and we were offered a place almost immediately, and we do not have a statement
emma x

cupcake

Posts: 141
From: england
Registered: 02-Mar-2004

Re: Advice needed about schools
Posted: 28-Nov-2006 09:41

Reply

Maybe I should have worded my post differently, like Emma said I will be asking for a place on 'medical grounds' rather than special needs. The school I have chosen has a lot of extra provision for 'special needs' children and although my daughter will not fall into that category her medical needs do need to be addressed.

I as a parent and the staff at the school are happy that they are well equipped to deal with her medication and have the staff and procedures in place to be able to do so - be it regular medication like creon and inhalers, or extra temporary medication. I have already discussed this with the school nurse prior to her starting in the nursery.

I have since discussed all of this with the lady who deals with the admissions for the school I have chosen, as I discovered through our cf nurse that her physio is based at the school one day a week. I have been told to include this on the letter I send in with my preference form and this should enable us to be given a place on medical grounds. The support this school can offer is not matched my any other school in the area, which is why I am hoping we will be given a priority place.

Emma S

Posts: 59
From: Battle, East Sussex
Registered: 06-Nov-2006

Re: Advice needed about schools
Posted: 28-Nov-2006 09:48

Reply

get as much back-up material as possible- letters from cf team is excellent, and maybe from her physio as well if she will mention she attends there anyway, it is all extra info to support your choice, and good luck
Jasmine has her annual review tomorrow, and her little school have even been filling in her food diary for me- including weights of food eaten, I really cant fault them at all, they are brilliant, and if you can get a school like that it takes a big weight off your mind knowing there are other people who genuinely seem to have the welfare of your child at heart looking after them
they even send me letters home telling me if she didnt eat that day, or didnt do all of gym, felt a bit wobbly, etc
emma x

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: Advice needed about schools
Posted: 28-Nov-2006 18:18

Reply

Hi, my son now 14 years applied for a place for his secondary school and his first choice was refused.He had been going to the local feeding schools infant and juniors throughout and I also included his condition that having cf was extremely distressing to him and that if he did not go to the first-choice school with all his friends from the feeder school, which was about 97%, it would cause him more problems and upset. He was still refused a place and was given a school where he would not have known one child. I had to appeal,and luckily he got in to his first-choice school. My appeal stated that: 1. A classroom is never fall, with children absent everyday, so the maximum children in a class is never going to be that amount because of children who are absent. 2. That I was looking for a house as I wanted to move back into that area. 3. My child would have to catch a bus if he went to second choice school, which means that he would be waiting on cold wet days on bus stops and in a confide space in the bus with coughs and colds and smoke(I still see children smoking at the back of a bus). I could easily drop him off by car as I am working by the first choice school. 4. That I know of the children around my son's age which school they are applying for who have cf and none are applying for my son's first choice school, so no cross-infection from cf to cf. 5. That my son was having a few problems from local children in our area which went to the second choice school, so the first-choice school would be more preferably. These were some of my reasons for my son to go to his first choice school and thankfully he got in after my appeal. Don't just go on the chance that they will get in because they have cf it don't always work like that. Usually most schools go on the catchment area you live in first, then siblings, then other reasons. Get ready to give as much reasons as you can. I also talked to an admissions advisor from the county council and they said he should get in, but he did not I had to appeal. Good luck hope your child gets in to their first choice school. from sunseasand.