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.

Hello. Just marking my place and will pop back after on lsptop so i can look at your links.

Have put this thread on watch.

Fingers crossed, we've had DS1 at school every day he's been physically well this calendar year but it's not been without major drama since there was a big re-organisation of classes, this term, and he's really not coping at all.

Some of this information may come in useful

For anyone having problems getting appropriate treatment for dcs with anxiety/depression.

links to Pals www.pals.nhs.uk/ Patient advice and liaison service - should be able to help with complaints etc.

And to NICE Guidelines re treatment for anxiety and depression in children
publications.nice.org.uk/depression-in-children-and-young-people-cg28

Here is the press release re new guidleines saying cbt rather than medication should be first line treatment:
www.nice.org.uk/nicemedia/live/10970/29862/29862.pdf

key quote:
"Children and young people with moderate to severe depression should be offered, as a first-line treatment, a specific psychological therapy (such as cognitive behavioural therapy, interpersonal therapy or family therapy of at least 3 months? duration).
o Antidepressant medication should not be offered to children or young people with moderate to severe depression except in combination with a concurrent psychological therapy and should not be offered at all to children with mild depression."

Very helpful, thank you! Are there any guidelines that mention treatment of anxiety/OCD traits specifically rather than depression? I will have a dig around myself on the Internet, but just wondered if anyone already had handy links (to stop me staying up too late trying to find the answer to life in a www address .

Will have a proper read of this later, great thread, looks very helpful :)

Hi amper, I found some links to NICE guidance on OCD here which seems to refer to adults and children:www.nice.org.uk/CG031 but the guidance on anxiety hereguidance.nice.org.uk/CG113 says only aimed at adults. Not sure why.

Have only skim read these but looks like there may be some useful pointers here to show what primary and secondary schools should be doing to promote children's social and emotional well-being.

publications.nice.org.uk/social-and-emotional-wellbeing-in-primary-education-ph12/related-nice-guidance
www.nice.org.uk/PH20 - as above but for secondary schools.

Would be nice if much vaunted "healthy school status" moved beyond banning sweeties in lunchboxes.

Brilliant thread. I'll be back.

link to another thread re access to camhs which may be useful to those with dcs out of school due to anxiety or other mental health issues.

www.mumsnet.com/Talk/special_needs/1468585-Waiting-to-be-seen-by-CAMHS-how-long-is-too-long-legally

(It has some links to documents that may be relevant, includes advice that:
"You could mention the National Services Framework, when you are trying to get that appointment, and say that your child is in a group that is considered to be a priority. It might just make them re-consider."
Priority groups apparently include dcs with a developmental delay or a Learning Difficulty)

Thanks for starting this thread, pinkorkid. My DS (12) has a diagnosis of TS, OCD and anxiety and has recently come out of school again. I home educated him in Year 6, then he started secondary school last September (loads of support provided and he was put in a special small, supportive class), but this triggered a kind of breakdown and he became agoraphobic. He is on Prozac (tried Sertraline, andper, but it didn't seem to make any difference to DS, whereas Prozac definitely helps him. Sometimes you have to try more than one medication and dosage to find the right 'fit' though).

I was ready to deregister him from school, but have agreed to try the LEA's flexible learning service first. They are offering us online learning and private tutors. I will find out more at a meeting in a couple of weeks. In the meantime, I'm working with DS at home. His mental health is my priority at the moment and I can now see small improvements in him (he actually came out with me yesterday).

I feel my son was badly let down at primary school and by CAMHS and if he'd had the help we asked for earlier, he might have been able to stay in school. As it was, he had to reach crisis point before anyone would take us seriously. Now he's on the highest level of help, gets help from a psychiatrist and CBT therapist and the LEA are bending over backwards to support him. Great - but all too late.

It has had a huge impact on our lives: my other son struggles with the fact that he has to go to school whilst his brother gets to stay at home; I can't do any paid work because I have to be at home with DS1 all day and my focus is on getting him better and educating him; and DH and I can only go out together or with DS2 if we get someone in to sit with DS1 and it's often easier not to bother. We can never go out as a family and I find that sad.

devient - do you find the LA support helpful? My LEA contact said DS could get up to 25 hours teaching per week, which I find incredible - and, actually, DS wouldn't be able to cope with that much anyway. I was surprised because I know that most people in this situation mention getting roughly five hours' teaching per week.

andper - sympathies re the stress of trying to get your DS into school. Our life actually got a lot less stressful once school was no longer an option - the stress came from trying to get him to go to school and stay there. It was awful for him and for us. Even the teachers were upset! Well done to your son for managing to stay at school for an hour the other day.

Interesting, pink, that your first link mentions that LEAs have a responsibility to provide an education for your child if he/she is off school for longer than 15 days. DS1 has been off for four months and he hasn't had any educational provision at all. I had to nag school (eventually resorting to emailing teachers individually) to get any work sent home for him. I have now given up on that and am enjoying working with him on what I think he needs to know.

Hi magicmutt, good to hear that your ds is getting some support finally even if too late in the day. We can all empathise with the huge impact it has on the whole family having a child unable to go to school. Getting work from school does tend to be a bit hit and miss some teachers will be great but for others it's out of sight out of mind.
I too am amazed that your "LEA contact said DS could get up to 25 hours teaching per week". (They were lucid, upright and not under the influence at the time?) Although they are quite correct and quoting the current law it's just light years somewhat removed from most people's experience on here.

I do believe that 's devient I can hear spluttering in the background at your question: "do you find the LA support helpful?"

thanks to AgnesDiPesto for this link on another thread which I have copied as thought it would be useful knowledge for here too:
www.lgo.org.uk/news/2011/sep/councils-not-let-down-children-school-special-reasons/

This report is a good summary of the education you are entitled to and what the Ombudsman would make a LA put in if it were not being provided.

I really want to answer everyone properly and say thanks for comments aimed at me. But all I am up to saying at the moment is please, please can DS and I go and live somewhere where it just does not matter any more, where no one ever has to get him to do anything he doesn't want too and we are not the 'odd one out' family, preferably where school has never even be invented.
Pathetic, but I just have to say it. And now I am going to pour a glass of wine and go and cook dinner for DH who is just due back from work, tired and low about it all and I really really don't want to meet him with a moan - so thanks for letting me vent here

Hey andper, vent away. Sorry it's all getting to you. Have some for yourself too. Looking forward to finding that place where none of this grief has been invented.

andper - sorry the situation is making you so stressed and unhappy at the moment. I'm sure everyone on this thread empathises with you. You may feel like the 'odd one out' family (we did - still do - too), but - as this thread shows - there are others out there in the same, or similar, situations. I notice you mention anxiety/OCD - that is my son's diagnosis too. We tried to stick with the idea that he should keep going into school, with support, and that his fears would gradually diminish the longer he was exposed. It didn't work. I'm sure exposure works sometimes, but he was in a state of almost constant anxiety, which eventually wore him down. It has taken five months for him to begin to show signs of recovery (medicine: time, kindness, plus a large regular dose of Prozac!).

What I have noticed is that when I started taking control and saying no, he can't do this (school) anymore and no, he can't see his therapist at the moment either - all the professionals listened and accepted it. I followed my instincts and, so far, it's working. You need to follow your instincts too. Would it be possible to give yourselves a break from school for a few weeks (bearing in mind half term is approaching)?

We also went to hell and back before 'no school' calmed the situation. My DS has also been on prozac and citalopram, with no difference. His anxiety levels are extremely high, coupled with a heart condition. He was signed off school by his psychiatrist with school phobia, social phobia and autistic traits..........this was after his cardiologist, GP and a few others were querying autism. What's missing for my DS is the firm diagnosis of ASD/PDA and PTSD. They dig there heels in around him as he is Down syndrome, sever learning disability, to help picture him he's 11 and functioning around 3 year old academically. However SALT wise his expressive language is that of a 2 year old but his understanding is that of a 4/5 year old. The SALT also notes in assessments he omits people. She felt my DS understood his reasoning behind what and why he was scared of school. However the ed psyc disagreed. He couldn't pick a happy bear or a sad bear from a few cards, so scared of school is just something he has learnt. I agreed if he didn't have the terrible behaviour before or after school and how difficult it was for a few adults to get him to school. As well as his nightmares etc. I think the LA itself has been helpful in a round about way, but I suppose there hands are tied and a lot comes down to budget. My DS gets the hour, 4 days per week, however behaviourally and academically it's too much in one go. We were supposed to be getting help 3 full days per week after Feb half term and still don't have this. However we have a meeting tonight for it. My DS needs 24/7 supervision with a 2:1 ratio. What I find difficult is managing the housework/ironing etc while I have him all day. You can't really 'work' while he is around and by the time hubby comes in from work your physically worn out.............upstairs is a mess but downstairs is show home..........lol

Thanks for the wine Pink!

Magic, you are right, we are not alone, which is sad and helpful at the same time. DS2 has a diagnosis of AS, but we are beginning to feel pretty certain there is PDA as well. The AS traits are quirky but can be coped with. The PDA tips it into a whole new dimension and is tearing him and us all apart. I think the anxiety is inextricably mixed with the demand avoidance - and as it all goes in waves of worse, then a little better, then worse again, the OCD traits appear at the worst bits. As with you, exposure does not seem to make any difference, the good experiences don't seem to add up to make him feel any better.

Deviant, I have followed your story as a lurker and it is so hard isn't it. I always feel professionals are very happy to have lots of meetings with us, but never actually look at our children and what is happening properly.
In many ways I would like to just sit down and say 'no more' to everything. Sometimes I think being an articulate, proactive parent doesn't do us any favours.

I am not quite brave enough to call a complete halt to school because DS2 does want to see people and does try, as far as he can. I am just so scared that I would not cope and would not know how to teach him in any way at all. If I get a bit braver I might look for our nearest home ed group and make some tentative approaches. I would, however, like to refuse to attend any more meetings as nothing specific ever seems to come from them, or very little anyway.

It is doubly complicated because DS1 is at home most of the time with CFS and it does not help him at all - major blow out from DS2 this afternoon and in the end I sent DS1 to a friend for his own safety, there is only so much spitting and hitting we can take.

Also thinking of trying ABA, I know he is 10 but I think I saw an earlier thread about it helping not just for really young children. I need a plan, to help us, as much as DS2 really.

Hi andper, would you mind linking to the other thread where it talks about using ABA with older kids (if you remember which one it was)? For some reason I had always thought of this in terms of early intervention only. Thanks.

you know I think the common link between all these kids is the PDA, it is not common and when I was on the helpline she told me she knew of no cases in my area and certainly non dxd. She said tells me the LA is scared of the dx. I think she's right. If you noticed as well years ago MNSN was a mixture, then ASD dominated the boards. Now all of sudden there seems to be an influx of undxd cases of PDA. Being on the PDA forum it sounds a hard dx to get, especially if there is no ASD dx. It doesn't pay you to be a proactive, articulate parent and you should stay in the traffic light system at red until the correct help is achieved. However it's sometimes hard to make them listen as well as learn iyswim.

I think it's not that well known (professional I spoke to at local camhs hadn't come accross it) and (from what I've read) some professionals don't recognise it as a separate diagnosis yet but simply as a feature which may be present in an asd diagnosis. I think you could see demand avoidance as a common factor in a lot of the behaviours associated with school phobia, social anxiety, and OCD as well, but maybe there is a threshold of intensity or pervasiveness in different settings before it can be given as a diagnosis in its own right? Was this the NAS helpline, devient or somewhere else?

contact details further down this page

We have started home ed a few weeks ago our son has Aspergers hes 13 ...he was out of schol for 2 years jsut over half with tutor supplied by schoool....we had no choice but to take him out as they didnt have anything else to offer that would suit him....he has anxieties especially around anything to do w ith school .......

dev - I also think the common link is PDA. All these kids are so, so similar there has to be a link. Our CAMHS won't even contemplate it as a dx.

Thanks dev for the link.

lindy - Sorry and shocked to hear your son was out of school for so long without proper support. Hope the home ed works out well.

corny - Did your Camhs try to justify their reaction re PDA or did they just dismiss it? So far haven't tried to push this in any way with camhs, just mentioned it in passing as a possibility but will raise it again when we finally get appointment.