home schooling

[jax]

that is a mouthful! and sounds like a new professional addition from when
my son was younger.

I'm sure you'll pull everything together with a support plan
and the school with the special needs attachment sounds
good too.

It must be difficult trying to co-ordinate everything when
you are caring for your husband and other children too.
You'd think these people would be more understanding
at some of these schools......

Best wishes

Jax

[Traceydeborah]

I just wanted to share my story with you.....

It is a legal right in law to meet your childs special needs under the DDA.

You can request the statementing process by formally writing to your local authority and they then must legally respond within 6 weeks.

We were having terrible problems, like you, with our sons school, even though his physio and OT had constantly been in school and written reports. They constantly ignored his needs because, as with this invisible illness, they thought he loked fine.

We formally wrote to the coucil and demanded statementing without involving the school. As is the law they had to respond to us and start the statementing process. The whole process has taken about 6 months where the council sent in 6 different specialists of their own, contacted our specialists including GOSH, physio and OT etc.

My son has EDS, struggles most days with his walking, struggles to write, can neither stand for long or sit for long, has stomach and bowl problems(before this they had left him sitting on the toliet screaming in pain for 20mins and unable to walk before they bothered to look for him).

WE have just heard that he has been given full time support of 30 hours a week personal LSA. That person will write for him, carry his books, take him out of class to do his physio during the school day and his massages for pain. He was also assessed to need care at break to help him feel included and play sedentry games that he can take part in and also full time care for lunch as somedays he cannot open his lunch box himself. Then they will also be on hand to make sure that he has children to play with and play games with. We have also been offered transport to and from school. He will also have a play therapist come in once a week to deal with the emotional side of being different at school.

As well as all that he has been offered equipement from the council for seating, computor and predictive text.

We have had to fight all the way and it is stressfull but I am used to fighting for his EDS and its his legal right to be treated with respect at school. I know that Sue Mallard told me that she goes to tribunals for statementing but I would gladly talk to you more about this subject if you decide to keep her in school. My advice is don't wait for school to start the process.

Good Luck

Tracey x x x

[susie]

If people want to home educate it is totally legal and you don't have to be inspected or anything like that in spite of what is often said. For accurate information regarding the practicalities and legalities see http://www.wiseuphe.netfirms.com Things may get trickier in England due to the Badman report but I don't think it's been passed yet. I think it's unlikely to be approved as it breaches human rights, would be turned over by the European courts and would be hideously expensive to implement.

Many thanks to you all,
Love
Susie

[MandyG]

just wanted to add here that we are def home schooling the kids. had enough of the school not looking after them properly.

[ali3471]

i don't know if this is in the right place as i am new user. Just wondered if anyone has thought about home school for the child as my daughter is 3 and at nursery. she is learning a little bit, we have been told she wont talk to the teachers. when she hurts herself she just wont tell them. Basicly we have been told when she starts school she will not have any support what so ever. she has learning disability we think it could be dyspraxia has her older sister has got it. she only knows 40 words what people can understand can't look after her self we have tried to get her to be independent and she is still in nappies we have tried all ways to get her out of nappies with no luck. everything she does say and act is like an 18 months old, we can see her little sister who is 14months old catching her up. my self and the rest of the family feel that we can't just plonk her into school has she won't have a clue what is going on. sorry it is so long but i don't know what todo for the best

[Blaadyblah]

Hi Ali, have a look through the earlier discussion in this topic.

Have you approached your Health Visitor about the educational support issue? They may be able to help you navigate the system.

[ali3471]

Thanks i have not aproached the education yet, The health visitor is a waste of space as she sent us to the hospital with my one year old as she wasn't walking theres nothing wrong with her as shes just started to stand shes 14months old now

[Fizz]

Has anyone got any experience of using online schools or home education using companies supplying national curriculum based educational materials? Finding it so difficult to liaise with our son's school that we're wondering if some kind of home ed would be better. Although it won't be easy to organise home ed either as I need to keep in part-time work. It's not what he wants but he's now in Yr 8 and hasn't been a regular full time school attender since the end of Yr 5. He gets support from the county's online service for children with illnesses but this is very general and has to cover a number of year groups, so he can either log on to classes which are too easy or ones which are too difficult and either way it's difficult to keep motivated. Work supplied from school is sporadic to say the least.

I'm also worried that the problem has gone on for so long that his current issues are more to do with fear of coping with school that his hms. Stress and pain are closely related and if we try to force him into school he ends up with panic attacks and feeling that his legs cannot move.CAHMS can't/won't help as they say he's "not ready" for cognitive behavioural therapy". Their most recent shot was to tell us if we felt his problem was more "anxiety- based" than "illness - based", we might like to consider asking the school to start prosecution proceedings against us so that our son might force himself into school to prevent his parents being fined or possibly imprisoned. Not surprisingly we did not fancy this one! However, we are worried that taking him out of school may lead to social problems but if we keep on with our current arrangements he won't get a suitable education. Advice from anyone who's been through some of this would be appreciated.

[Fizz]

Update on whether or not to home school
Have decided to bite the bullet and resign from my part-time job in order to help my son get some kind of education. With a bit of juggling we should be ok for 1 year. He's still finding it very difficult to get into school and his legs keep seizing up when he tries. I strongly think this is stress related due to the amount of time he's had off school. Hopefully from September, I can take him to school and then stay with him if he feels he can't walk as I won't have to get into work. If all fails after a few months we'll look at on-line schools. However, I'm hoping if he gets more support to stay in school, things will improve and he wont have as many problems.

[madmum]

Is his school wheelchair accessable? If it is then would that help with his legs? Also have you tried slow introduction,say an hour a day to start. Do you have a room where kids with problems including english as second language get support? My son goes to the support room to work if he feels off. He was provided with work sheets for when he was not able to be in. I agree stress can be a problem,so to can looking different to others. My so has had similar issues but he is getting support at school after a lot of pressing for it and now wants to be in school. His problem is now severe fatigue and we cannot get to the bottom of this,his rheumy says age and lack of sleep due to pain. He is on medication again and sleep is improving but he is still very fatigued. Looking forward to the summer break to see if a few lie in help. Hope things can improve for your son. Sending you both hugs.

[Fizz]

Hi, madmum,
Glad to hear things have improved a bit at your son's school, and sorry to hear about the fatigue issue. Trouble is, when they are in the "growth spurt" years life can be pretty exhausting even for children without hms.
Regarding my son's school, large parts of it are wheelchair accessible and the only way we've been able to get him in recently is by taking him in a wheelchair. Over the past 2 years he's had various shots at a slow integration back to school, starting (at one time) with going in for just half an hour. Originally, we had problems with support staff pushing him to increase his hours too quickly. We've got this one sorted now but whenever we try to increase his time beyond a couple of hours everything goes downhill and we end up with him not being in at all. It's been hard recently to work out what is caused by hms and what is caused by anxiety which has developed through the problems he's had. He does his physio now and is stronger but still not brilliant and I think he should be able to cope physically with being in school. Unfortunately his legs go into a kind of paralysis when we try to get him up on a school day and he usually cannot get out of the car and walk, hence the wheelchair. I think keeping him off school will make this worse so next term we'll try going in every morning for the first lesson, using the wheelchair if necessary and see how we get on. CAMHS aren't interested so we'll have to deal with it all as best we can.
Return hugs to you both.

[madmum]

It is ridiculous you cannot get support. I would not let the staff push to go more often,be guided by his health and do it very gradually. It is awful when anxiety takes over,my son was like that when he was badly bullied at his first infant school. I think they also feel embarassed in front of the other children because they want to be seen as normal and not needing extra help. Schools also seem so slow in taking up the idea of someone giving a talk on hms to the pupils or staff,if it was me I would be far more willing to accept as it teaches children to be more understanding of children with medical problems. I find boys seem to find it hard to speak about how they feel. Hope you can help your son,if ever he would like to talk to my son feel free to contact and he can have his email to chat. Take care.

[Fizz]

Hi, has anyone on here managed to home school children and fit in a job? Trying to get my son into school is becoming intolerable for all of us. Chronic pain syndrome, which developed after he started with hms, has lead to him having severe pain problems when he tries to get into school. I gave up my job this summer to support my son in getting into school in the morning. Previously, I had to start work at 8.30 am so often had to stop trying to get my son into school and then drop him off at home (with home working dad) so that I could arrive in time. The plan was that I'd not work for a year to see if we could try to get son back into school on a regular basis, even if only part-time. If this didn't work we planned to try home education using an online school, so that his dad could be present whilst lessons were going on in the morning and I'd try to get back into part-time morning work again so that I could be there for the afteroons. Getting into school hasn't been working too well but my plans to be at home this year may need to be revised due to my husband being diagnosed with a serious illness which means his being off work for 12+ months and regular hospital inpatient treatment. I can't see how I can home educate my son, support my husband and go out to work but it looks like that's what I'm going to have to try. Has anyone managed this and if so, how?

[Fizz]

Home schooling - update
Have taken the leap and deregistered son from his school. We're having too many problems with them e.g. treating some of the time he is off sick as "unauthorised" even though he has a sick note from a consultant paediatrician, not providing work for him when he is in school but has to work in a different room as he cannot access the classroom on his timetable (not all areas covered by lift), great problems over the years in getting work sent home. Just cannot hack it anymore, especially as OH currently long term sick. Currently exploring possibilities of online schooling as this will give him the chance to interact with other learners even though he cannot always get out and about. My very best wishes to those of you who are still slogging it out with your local school.

[cyberbarn]

Hi Fizz,

Just quickly as my son has just woken up. Do you know about he-special?

www.he-special.org.uk

They have an email list you can join, and there has been some discussion recently about on line learning. If you have any problems joining the list then PM me, and I will sort it out. Oh, and apologies if you are already there!

Cheers,
Jennifer