Advice/Thoughts anyone?

[prickles]

Hi All

Just wondered what your thoughts are on Home Education? As some of you know my daughter Caitlin has Hyper IgE Syndrome.

She has been out of school more than in since she went back in September. She had an abscess just before the November 1/2 term so had about a week out of school then, a week or so later she had problems with dizziness and could hardly stand up so was off school till after Christmas. She went to school for a week then was off for another abscess drainage, she was off today as she can hardly stand up again, but Dr done some exercises and that seemed to have helped.

The problem is she has missed so much school this last year again (about 70% attendance) that it is seriously affecting her work, the school are not giving her the extra help she needs even though we have asked, the hospital will not sign her off for home medical tuition or let her go to the medical unit (possibly because of her MRSA status) so we are considering taking her out of the school system and home teach. Have any of you done this? She has just started year 10 so doing her GCSE's is it worth doing Home Ed at this late stage?

Her career choice (Funeral Director) does not need any formal qualifications so she could get away with going to night college at a later date to take her GCSE's if necessary.

Thoughts and opinions would be very welcome.

Sue

[mali42]

My nephew has Asbergers and won't go to school and they want him to do online lessons, If you want more info on that message me and I will try and find out more,
Thats not what you asked but thought it might be an option,
Home tutoring would probably help Caitlin catch up,

[john]

hi sue,
this is really sad for caitlin and must be a terrible worry for you. i'm very sorry for you both.
why won't the school and the doctors help here, it's not as though she is actually having a great time off school is it?
i have no kids and absolutely no experience of home education, but if that's your only option i guess you have to think along those lines.
i hope if caitlin does get this option she doesn't miss out on the social interactions that school provides.
good luck with your decision, and have another "go" at that hospital!!
take care - john

[emsy]

My sister in law is a supply teacher and sometimes gets asked by schools to do some one on one tuition with children. I'm no expert or anything and have no clue how these things work but I wonder if you could request this service from the school, either in school once she is feeling a litte better so she can catch up, or you never know, they may be able to arrange something for her at home? I dont know if they would allow this or not but you dont get anything if you dont ask......

[liz2mac]

Hi Sue,
I'm so sorry that you're having to deal with such a difficult educational problem, on top of Caitlin's health issues. My knowledge of home schooling is very out of date. A friend of mine home scholled about 20 years ago. I know that she was in an organisation with other parents that were home schooling & they pooled their resources at times. That meant the "children" had social contact, the parents could but in specialist help and they were able to support each other. Have you searched the web for anything like this? They'd be able to lead you through the red tape minefield as well.
Please tell Caitlin that we're all rooting for her, she's not weird or alone. There's a whole group of people who want to give her (and you) a cheer for managing to think laterally about all of this.
Liz.

[prickles]

Hi All

Thanks for the replys, I have just heard that one of our Consultants are trying to arrange for a meeting with the school next week to see if things can be sorted out - not sure I hold out much hope I think the school will try and stall. Caitlin has also just told me that she is expected to go to after school lessons as she is so far behind, while it may well help I feel its a bit unfair using her free time when it is no fault of her own that she's behind. Also she sits in the libray for 2 hours a week doing nothing when the others are doing PE when they could be helping her then!

I work for the local church and one of my Vicars who is also a teacher has asked around and feels that there are enough willing and able retired teachers in the Benefice that would help us out if we go down Home Ed route. I think I will see if we get anywhere at the meeting and go from there, if the school tries to delay the meeting or won't put reasonable help in I think the Home Ed option is a definate goer.

I have looked into organisations/groups that support Home Ed unfortunately there is nothing very close to us but not so far away to make it impractical to use.

I will let you know the results of the meeting - if it happens.

Sue

[liz2mac]

Thanks for the update Sue. Will you keep us informed on your progress? Also would you mind if I asked a couple of the paediatric immunologists if they've come across this sort of problem before and if so how it was resolved? I wouldn't mention names. I think it's appalling that they are wasting Caitlin's precious time & energy in the library & after school.
Liz.

[prickles]

Hi Liz

I don't mind at all if you ask them, any information I can get will be useful. I received today the letter from school telling me that it is compulsory for Caitlin to go to the after school lessons and can change to voluntary after she has caught up, as she has a whole grade to catch up on in English and Maths its going to take a while before she has the option to go voluntarily!

Sue

[liz2mac]

Thanks Sue, I'll contact them tomorrow. I cannot believe that the school is being both unreasonable and cruel. I think that they need to understand that Caitlin has a disability,as defined under the disablity act, and that they therefore have to make a reasonable adjustment for her. Expecting her to work in this way is not reasonable and is not an adjustment. I think that they are discriminating against her. Will persue this line of thought tomorrow. Thinking of you.
Liz

[keziah]

Hi - I know several people who have successfully educated at home their children to GCSE standard, then they have gone to school/college for A levels and then on to very good Universities.

Am shocked that school is saying after school is compulsory - as I don't think legally they can do that (am a teacher myself). It sounds like they are concerned with their results with English and Maths rather than what is good for your daughter. Having the option of after school is good if you want it, but it sounds like provision for students who can reduce school GCSE results rather than targetted 1:1 support? Might be worth asking about that?

Those I know who are home schooled have had at least one parent as a qualified teacher and tend to have met up with other home schoolers for lessons like science and French (in a church situation in fact) to have specialist lessons. I don't feel qualified myself to teach 8 or so subjects at GCSE level.

Could you ask the school for a reduced timetable... that is what we give students who have missed a lot of time due to physical reasons. They go to all English, Maths, Science lessons plus 2 others - to give them the 5 GCSE that employers ask for. Then she may have energy for after school catch up if not in all day for subjects that have no exam (PE, PSHE for eg)?

[liz2mac]

Hi Sue,
sorry I haven't got back to you yet, I am on the case though. In the meantime, if you go to the website for IPOPI which is the International Primary Immunodeficiency Patients Organisation, you will find that they have several booklets. One of them is for schools. It may be helpful for you to have a look at and decide if it is helpful for you. It looks to me as if you should be able to download this. It's FOC for national member organisations, but until I can get us at UKPIPS a little more organised, we in the UK don't have a national organisation representing us!
Keep us updated? We're all rooting for you.
Liz.

[prickles]

Hi

Thanks for all the coments, we are having our MDT meeting tomorrow lunchtime. I wrang County Education yesterday, they also said as far as they are concerned after school lessons can not be compulsory.

Caitlin was on a reduced timetable earlier this year, it was ok and helped to some extent but meant that I had to take her in at odd times, sometimes twice a day and was disruptive to my day (I work part time but not always the same days every week). We also live in a village a little way out of town so when her lessons were split apart I had to hang around waiting for her as not worth driving home.

I will let you all know how the meeting goes.

Sue

[prickles]

The meeting happened yesterday and it went OK. Our Consultant was brilliant and kept stressing to the SENCO the problems that Caitlin has and made sure that plans were put into place. Caitlin was very brave she started the meeting by telling everyone how she felt and what she wanted. It looks as if she will only study the core subjecst and History for her GCSE's and take one other subject because she enjoys it. It was also agreed that the after school class is not compulsory but if she can go it would be good and going every other week would not be a problem, they will also see if transport can be sorted.

School have also assured us that extra help will be provided and all staff will be told about the difficulties she has and if she is happy to do a presentation on her syndrome with the help of the Consultant and SENCO they will arrange it.

Everything is to be reviewed again at Easter. We did get the impression that the SENCO didn't really want to be there as she didn't even acknowledge us until meeting started and we also pulled her up on a couple of points.

All in all the meeting went well and at least there is a plan, we just have to wait and see if it is put into action.

Thank you for all your support, it is much appreciated.

Sue

[john]

hi sue,
seems to me you have got yourselves a good deal!
hope it all works out for caitlin and that it will enable her to feel better.
i think the idea of caitlin giving a presentation is BRILLIANT! it would allow her to take possession of her condition, and it will make her very feel proud! and i know this because it is something that i often do myself!!
take care - john

[liz2mac]

Sue,

WELL DOne. I've never met Caitlin, but I'm so proud of her, she must have guts. Well done you as well. My son was severely dyslexic and twenty years ago I had to fight to get him help that wasn't disruptive to his life and yet appropriate to his needs. Perhaps I understand a little of what you've been through. I've had trouble getting hold of the Paediatric Nurses as the Dr's are mostly intent on setting up their own "patient group" with the advice, support and help of the trustees and former CEO of the PIA. However, three of the paediatric nurses are now happy to be advisors for UKPIPS so hopefully advice will be faster in reaching us in future. Dr's Longhurst & Helbert are working with us and once we have our charity recognised by the relevant bodies I expect Paediatricians to join them.
Well done again.
Liz

[susand]

Hi Liz,
i think I might be a little off topic here, responding to your last email on this thread. Please move this Sam if you think so!

When you say that the Drs are busy setting up their own patient groups with advice and support from past PiA staff, I am wondering if this indicates that there will be more than one body or charity with a similar dynamic of supporting people living with a PID? Or will this be a pediatric only group?
I am thinking that in unity lies our strength and support.
Do you have any information about the PiA "restarting" , as they have stated somewhere, once a fresh funding year arrives?
Thank you - and everyone involved - for all the work you are doing to bring together a patient-centred support group. I know one of the Advisory Drs who is on board and she is BRILLIANT.

Take care
Sue D

[prickles]

Hi All

Just a quick update, school have at last reduced Caitlin's timetable but its taken them 6 weeks to sort. During her non lessons she is to sit in the LRC (library to you and me) and work on her own not sure if thats a good idea and have told them, they may be able to put a classroom assistant in there occasionally!

I have told them that I am going to arrange work experience for her every other Friday as I don't want her to sit in the LRC for three hours on her own, and they have agreed.

She has not been too bad health wise recently - other than her skin, I am going to ask for alergy tests as it seems to get really bad whenever she eats bread. My mum is celiac so wonder if Caitlin could be as well.

Today she left to go to Lourdes for a week with the HCPT so its going to be nice and peaceful at home.

Sue

[liziJ]

Hi Sue,

I'm so sorry I never saw this thread before otherwise I would have replied. I'm a secondary school teacher and also have CVID. I know only too well how the needs of some students can sometimes end up being overlooked.

For Caitlin to have given a presentation to staff is absolutely fantastic - as others have said, for her own self-esteem - but also in raising awareness amongst staff. I am pretty typical in that every class I teach has 32+ students, and in each of these classes I have a range of special needs to try to cater for. The vast majority of teachers really do want to do the best we can for each and every student but the sad reality is that we're not often given the time, resources and support we need to make this possible. And often we're just told that a student has needs without any clear guidance on how to meet those needs. I have no doubt whatsoever that Caitlin's teachers will have been delighted to hear directly from her exactly what her needs are and how she wants them to support her.

Dropping all but the core subjects sounds like a very sensible option for her. When Caitlin is left to study in the library is she given clear direction from her teachers on how to use this time? I'm sure it could be very beneficial to her, but only if she is given guidance on what she should be doing.

Thinking ahead to exam time in Year 11, it might be worth thinking about what needs/challenges might arise and what you and the school can be doing to pre-empt them. For example, is there any reason that Caitlin would be better sitting her exams under 1:1 supervision in a classroom rather than in a big exam hall? (Risk of infections in a crowded room perhaps?) Is she likely to need extra time in an exam, or a scribe, or any other extra help or dispensations? It may well be a good idea for your Consultant and School to jointly contact exam boards to explain that there is a higher likelihood than usual of Caitlin being unwell on exam day, and finding out what the procedure will be if she is too ill to take an exam?

Caitlin's career choice is a very interesting one! It shows what a thoughtful, selfless person she must be. Is the work experience you have arranged linked to this career area? As I'm sure you know, RELEVANT work experience counts for a lot!

Anyway, sounds like you've done a brilliant job of "fighting the system" - well done you. You and Caitlin sound like quite a team!!

I hope she enjoys her trip - and that you enjoy your peace and quiet. You've earned it!

Lizi x

[prickles]

At last after months of wrangling it has been agreed that Caitlin will go to a Medical Tuition Unit 3 mornings a week to do her core subjects and her normal school 2 mornings and 1 afternoon to do her options. This has only been agreed because she refused to go into school this last half term after being ill again and because some teachers were getting stroppy with her.

School have also arranged some counseling sessions for her to try and help boost her confidence. We are now hopeful that she may leave school next June with a couple of GCSE's.

She still wants to be an Undertaker and really enjoyed her work experience, we are hoping to arrange a work placement for her with one of my contacts (I work for the church). She is off to Lourdes again at Easter this time as a helper.

I will be glad when this year is over.

Sue

[slf]

Really hope this helps Caitlin,my own daughter had very different problems with dyslexia,but the special unit she attended made a massive difference and boosted her confidence enormously so I have big hopes there.
I think you will have more good news for us soon
Take care
Steve