Support/information sharing thread for families with dcs who can't or won't go to school

[pinkorkid]

I know from reading and sometimes posting on other threads that there are quite a few of us who have dcs who are unable to access education in a school setting for various reasons - including illness, anxiety, illegal exclusion, lack of other suitable provision.

I thought it might be useful to share information on relevant legislation, articles, services or specific tips for anything that has made life easier. As well as the latest cr*p that has been thrown at us and what can we do now???

So to start the ball rolling, here's my favorite piece of hidden legislation (already posted on other threads):

Access to education for children and young people with medical needs
www.education.gov.uk/publications/eOrderingDownload/DFES-0732-2001.pdf

Back with more later.. slopes off to work now.

pinkorkid - it was dismissed quite sternly!
I'm thinking that there may be a processing difficulty going on as well in our case.
ds is much better with visual cues and isn't at all stressed by them, but cannot cope with verbal instructions unless they are very short and specific. Does this ring any bells for anyone...?

That's interesting re the visual being so much easier for your ds to process than listening. DS used to bug us by wanting a running commentary on almost any programme we watched together until we discovered how much better he could follow the plot with subtitles switched on. The clinical psychologist picked up on it too when she did wisc assessment prior to cbt and tried to re-create the sub-title experience in a way by giving him print-outs and diagrams to look at before talking to him.

Hi, my dd (15) has not been in school since last October! She has been allocated a special school place from September. Home tuition was meant to be arranged but has not materialised!

I have a son who resents her not being at school. I quite like her not being at school in one way because the stress of her going and staying there (waiting for the phone call) was worse than the stress of trying to manage her days school-less.
She has asd and mental health issues (on anti d's and anti-psychs)

hi Pumpster,
Sorry you've been let down so badly that your dd still has no tuition in place 8 months on. It's shocking how the most vulnerable kids are being neglected in this way. I hope the help she is getting for the mental health issues are making a difference. How does she feel about starting the new school in September?

Also sympathise with the impact it has on the whole family - it's not surprising your ds feels resentful. It's hard for other children in the family to see beyond their sibling getting different treatment. Other people on the board have mentioned this group www.sibs.org.uk/ as offering useful support for brothers and sisters of children with any kind of disability.

Thanks pink. She is apprehensive but sort of pleased, her days merge into one at the moment. I just hope that it's perfect for her if you know what I mean?

School has been so distressing for her since age 9.

tks to poster who pointed me here ! not good to be part of the club but glad to find you.
i have posted in other forums www.mumsnet.com/Talk/child_adolescent_mental_health/1585866-School-avoidance-12-yr-dd-with-nausea-retching-etc my dd has nausea diziness, waiting for input from camhs had one assessment appt but no diagnosis.
she has missed school since june basically.

medical thought inner ear issues but not conclusive. have MRI on tuesday to rule out anything physiological.

school v unhelpful tho agreed she could go part time afternoons -she says she cant manage that..physically. not emotionally. (she has always had good academic results)

lea helpful even tho her school is out of borough and a foreign schooll in london (dad - my ex - is european) and we meeting tutor who does small tutor group next week too -they offer ten hours per week in the small group. (4,4,3 hour sessions in unit attached to local high school) see if she can manage that.

i've now accepted this is a long haul thing and no easy wake-up-one-day=and-be-fine....

dd says she is not refusing school coz of aniety rather she feels physically ill... i do understand MH can cause such physical symptoms but need camhs to asssit and diagnose this if that is the case.

we have been going round in so many circles, gp then paed then ENT then paed then CAMHs first assessment then leaving in limbo - having to chase again... then school being v unhelpful (drag her here ! or face legal problems!)

if dd says" i am not anxious i am physically ill " - but paed wants to insist is psychological - at least in part - what to do ?

Hi cestlavie, It must be very frustrating for you and dd that you've got paed and camhs wanting other party to take responsibility and you are than left in limbo. Ideally you want someone with sufficient expertise in the effects of a distressing physical condition on mental health. In theory the paed and camhs should cooperate on this to offer a holistic approach but sadly the understanding is not always there.

Although our main experience with school anxiety/refusal has been with ds who has missed huge amounts of school due to anxiety mainly arising from effects of ASD, we have also had problems with dd1, where the causes of her missing school are much less clear cut. She has severe eczema, often in pain/discomfort, very disturbed sleep but alongside that (and presumably arising from it) angry outbursts, depressive symptoms, refusal to comply with treatment. It has been much more difficult to get help and advice for dd because it's not clear cut. Unless you are very fortunate, most schools want or "need" the situation to be within clearly defined boundaries and will declare it an EWO matter unless you have the clear support of either paed or camhs consultant for your child to be out of school.

It might be worth having a look at the websites of some of the third level camhs treatment centres such as the Maudsley hospital or Evalina Children's hospital in London for an idea of how an holistic approach should look.

sorry pink it was the PDA helpline.

I'm glad this thread has been resurrected. I also think that PDA is a common factor. With DS I have the combination of a child that is very resistant to going to school whilst at home - cue massive daily trantrums - but absolutely passive in school. Hence not being believed and the referral to SS. tbh the only thing that has made it better is his leaving primary school (where the last school end of year report paints him as the life and soul of the party - often sharing a joke with his CT, calm and happy - I think they have the wrong boy!) where they refused to believe anything was wrong (apart from low self esteem which they thought resulted from comparing himself negatively to others) and being unable to start secondary - I refute you thus. Had he made it in though the teachers would go back to insisting all was fine. Even HT tried - DS ignored him until he gave up and went away.

Bump

hi all.
dd year eight still with nausea headaches attending small group (two students sometimes three)

MRI showed some weird thing heterotopia which has always been there (but maybe now causing issues???) and we see a private neuro saturday on my insurance...dd with lots of headaches.

she accessing education manaing about six to eight hours per week and i have nothing but praise for LEA.

school apparently dont understand how she can attend a small tutor group but not school? surely it isnt hard..if you feeling sick and dizzy you might be able to get to a small class with v supportive teacher; as opposed to running round school up three flights of stairs with 20 class mates ?

exp just had a go at me as i am apparently causing all the problems and "doing it all wrong" and i should never have taken her to the small group; if she can go there she can go to school; bla bla bla .... and they might expel her from the school !!! (for being ill????) and it will of course be all my fault.

(typical exp ranty behaviour)

welll...worst that can happen is they do that...there are other schools....

Hi c'est la vie, sorry to hear your dd is having to cope with chronic nausea and headaches. ( As a frequent migraine sufferer myself, she has all my sympathy). I hope you get some helpful answers from the neuro. appt. this weekend. It's really good to hear that your LA has been supportive - good practice does exist, just not as widespread as we would like.

School's attitude seems bizarre that they can't see how small group situation is more appropriate to her needs. It's a shame ex-p can't be more supportive but he is wrong to think a school can expel your dd because of her medical needs so would let that wash over you as far as you can.

But rather than worrying about whether school are happy maybe think about how well they will support dd, once hopefully she is well enough to be back full-time? If they don't start to show a little bit more common sense and compassion, maybe there will be other schools that would serve her better.