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.

.....looking at this when a get 30 seconds later - we Home Ed due to medical/educational needs that were ignored despite a 30 hr 1-1 SSEN! I know we are not alone by looking here and at the Home Ed threads.

where do I get a hard copy pink

another being home schooled with support from the LA, 1 hour per day 4 days per week due to the LA SS not meeting his needs.

Evening all, finally got the little darlings to bed and hoping to get my mumsnet fix some time online before one of them wakes up again.

The access to education doc can be downloaded for free from the dept for education website and there is also an email or telephone number given which you can use to request that they post you out a hard copy. Details below:

Email: [email protected]
Telephone: 0845 60 222 60

from this site: www.education.gov.uk/Publications/Help/Ordering

I only came across this after endless googling. when I asked my LA for their policy on providing access to education for children who are unable to attend school because of severe anxiety (which was the situation with our ds), they claimed to not have an official policy but that their practice was loosely informed by the above document. Needless to say it was very loose indeed. the school that he then attended had never heard of it and had and continue to have as far as I know no official policy for children in this situation.

Link to article from the Times education supplement magazine published on 17 october last year entitled:
:
"full time education law is at risk of failure one month in"

www.tes.co.uk/article.aspx?storycode=6116532

some key quotes:
"The move was supposed to guarantee teaching to children unable to go to school because of permanent exclusion or illness. Previously, local authorities only had to provide an amount of teaching that they deemed "suitable". The new law for the first time defined that as full-time, putting pressure on councils to arrange more teaching in alternative settings, including one-to-one tuition and pupil referral units.

But the LGO is concerned that the reforms could fall at the first hurdle because of the "enormous pressures" faced by local authorities. This "may result in more children missing out on crucial years of education," its report says.

"The duty to provide full-time education will put an additional burden on local authorities when we are all aware they are facing significant cuts to budgets and staffing levels," Dr Jane Martin, one of the ombudsmen, told TES.

"This poses the question of how local authorities will meet this requirement. There is a risk that they won't and will fail in their duties. Both councils and the Department for Education need to have a comprehensive look at this issue."

The article concludes with a summary of the current law:

"WHAT LAS MUST DO

The Education Act 1996 says that if a child of compulsory school age cannot attend school for reasons including illness and exclusion, the local authority must make arrangements to provide "suitable education" either at school or elsewhere.

The Children, Schools and Families Act 2010 extends that duty and says local authorities should arrange full-time education for all children in alternative provision.

The teaching must be of a similar quality to that which the child would receive in school, based on a broad and balanced curriculum."

Some relevant books:
"What to do when your child hates school" by Antonia Chitty

"School Phobia, Panic Attacks and Anxiety in Children" BY MARIANA CSOTI

both available on Amazon

link to a website supporting families with a child who won't/can't attend school

www.schoolrefuser.org.uk/

I know some people (waves to wetaugust) dislike the term school refuser because it can have overtones of an element of unreasonable behaviour in a child's refusal to go to school, whereas if a child's needs are not being met at school and or they are overwhelmed by anxiety in a school setting, it is unfair to talk as if they have a genuine choice. Personally, while I would be quick to correct anyone who was cynical about an anxious child's motivation for refusing to go to school, I'm pragmatic about accepting the use of the term school refuser and when I use it I mean it as shorthand for a child whose needs at school are not being met and who therefore experiences great distress at the prospect of going to school.

This forum appreciates that the reasons for a child's non-attendance are myriad and sometimes hard to explain but state:

"Here, we make no distinction between different reasons for non-attendance, other than to attempt focus on long-term absence, particularly for those children who exhibit symptoms of stress or anxiety about attending school. "

We have had very mixed experience with CAMHS.

The most useful help we have had was a course of cognitive behavioural therapy.

link here to a readable explanation of how cbt works:
www.rcpsych.ac.uk/mentalhealthinfoforall/treatments/cbt.aspx

I found partnership with parents very helpful when dealing with school and LA although not always available when needed. I know others on here have posted that they found them too hand in glove with the LA, so seems to depend where you are.

www.parentpartnership.org.uk/

Nev - It would be good to hear more about your home ed experiences and tips for those of us who have ended up home edding from lack of choice rather than as a free decision IYKWIM.

And looking forward to reading others' recommendations and experiences...

Bit busy atm but just wanted to say we were offered CBT but DS was too severe learning disabled for effect.

also mime wasn't a free decision and have had a huge battle in the last 2 years to get support never mind all his life............(disabled at birth)

dev I remember from an earlier thread you said unlikely DS would be able to access CBT. I do think that CAMHS may set the bar too high for accessing CBT as in theory it should be possible to tailor it to his cognitive level. do you think your ds can articulate reasons for his behaviour/recognise how he feels in certain situations compared with others?

Sympathise very much with being an unwilling home-edder alongside all the other battles. I know you and ds have been mucked around by those who should have helped him. on your behalf.

Hi - sorry missed all this last night!
Home Ed, although by default is the very best thing I have done. I am a Nanny, [Nursery Nurse], so while I have some child development knowledge and early years experience I'm by no means a qualified teacher - but it has meant that I can Home Ed and work at the same time. [Thats not to say that it's not bloody hard work doing both, but at least I can see that my son is being cared for and educated!]

Also, I have to say that not being a teacher hasn't been an issue at all - in fact if you look at the Home Ed threads you will see that this is true for most Home Ed-ers.

My son had two years at school, a SSEN of 30 hours and a 1-1. The 30 hours weren't worth the paper they were on - despite all the laws on Disability discrimination and Human Rights Access to Education. He didn't get access to education - being left in the corridoor with a computer-if he was lucky, and his 1-1 was 17, unqualified in even basic school qualifications - if I meantioned Gross or Fine Motor Skill, she hadn't a clue! Not her fault, but the fault of the LEA as they would rather our SEN children were taught by unqualified people than by trained teachers!

My son has made fantastic progress since leaving school. He has complex needs, both physical and educational. He can now read, write, is happy with basic maths, but the main benefit has been that he WANTS to learn.

We don't stick to a set curriculum [you don't have to], we make sure he has some time spelling, handwriting [he has gross and fine motor problems], maths practise, but many of these are included in the things that he asks to learn about. History, geography, stories, many of these we do hands on by going out.

He came out from the school system because we were loosing him, he had all the symptoms of PTSD, anxiety, no self esteem, and panic at the thought of even picking up a pencil. I really want him to be able to go back to school eventually, but at the RIGHT school. I'm told we can't get 'gold standard education with an SEN child, it needs to be adequate education'.

Would we go to the GP for 'adequate' health care, or do we expect the best there is for our condition? It makes me so angry. I didn't choose to Home Ed, I was left with little choice, as are so many people with SEN/Disabled children.

Then when you do find a school, it's a Tribunal and expensive legal costs just to see that they can get there...................

lol Pink thanks. I just thought you thought I had chose this route. Apart from those you mention I have also read this The guy who wrote is also around on facebook and can be helpful to a degree. I am also in this group and she also has a website, however I find with most things, facebook gets the most traffic. Kay was also on morning TV about her sons school refusal and she is looking for others who are willing to do a TV documentary on it, details are on the fb group under wild pictures. HTH x

I will be on again to post when I have read everything properly, but just want to say THANK YOU for this thread from the bottom of my heart. Have been in tears again all morning as DS, despite fantastic SS and all their input, is not managing school. Anxiety has taken over, we have a long history of this and am in despair - topped with older DS at home with medical condition. Feels like we are all living in some parallel universe and it gets the better of me all the time now from time to time.

Nev thank you for sharing your experiences of home edding. I'm glad it has worked out so well for you and your ds. I agree with you that you don't need to have special qualifications to teach your dcs at home. The motivation to find out what works for your dc is crucial. For us, at the moment anyway, trying to get ds or dd1 to focus on schoolwork just feels like an extension of all the other battles we have about behaviour and compliance with medical treatment etc. It may well be that because ds is a lot older (14) and has had that much longer to get disaffected with learning that it is harder to get through. Plus adolescent hormones and moodiness are entering the mix in a big way. In theory home ed should be the obvious route for us - I used to be a teacher - but the dynamics are very different when it's your own child. I have wondered if it would be better if we made up our own curriculum, tried to disguise the learning rather than essentially doing disjointed bits of homework. anyway you have motivated me to explore more about proper home edding .

Dev, thanks for your links, still working out how to join Facebook...(OAP emoticon)

Andper, really pleased if any of this looks like being helpful. I think one of the worst things about being in this situation is that it is so isolating. We also have two dcs out of school at the moment - different reasons and diagnoses - and thankfully a third dc who takes it all in her stride and allows me fleeting moments of what normal life must feel like

Good news! DS managed to go in to school for what he said would be 10 minutes today, and ended up being there for an hour. very proud of him! School let him chat to his favourite IT teacher and show him his YouTube Let's Play videos. Now at home again with a boy who is more jolly than he has been in weeks.

We see the psychiatrist next week, they are thinking of starting him on Sertraline - does anyone have any experience of this? Would like him to have CBT but they are very reluctant to deliver any direct therapies, in fact until now have barely seen him, happy just to have lots of meetings with us .

Education-wise he is in suitable provision (well, fantastic provision actually), but I feel so sad that once that battle had been won he still ends up not able to go to school because of the anxiety. Demand avoidance is a big big part of this too. At the moment he just listens to lots of Radio 4 podcasts - gripped by Short History of Mathematics this week, and he remembers everything so we are trying to learn just to go with it!

Nev - interested in what you say about Home ed, and Pink, think I have the same reservations as you, but I do find it very interesting.

my ds is in a ss at the moment but still struggles to attend - he was out of school for over a year though. We didn't find CAMHS particularly helpful.

We HE completely by choice - at the obvious reception-aged moment, it was dead obvious that a school environment wasn't going to be optimum for my oldest's needs, so we never bothered with all that fighting to get their needs met with special help - we just continued as we had started, concentrating on doing the best we could to help our children develop at their optimum rate in a safe and supportive environment.

We don't do ANY formal education of any kind whatsoever. All completely child led. A great thing about having a child with additional needs of one kind or another is that we parents can be so busy worrying about [insert developmental goal that child has missed by several miles] that, while we are concentrating on trying to work out how to help with that, they quietly get on with [insert 47 other developmental goals that we hadn't even thought of trying to help with yet].

If anyone wants positive experiences of HEing a SEN child, I'm your girl :)

I started HEing my 13 year old ds over three years ago and it's been exactly the right thing to do for him. He has AS/ADHD and hypermobile hands so a lot of issues to work on. He's very bright but he'd had a lot of bad experiences in school so it took a lot of effort to get him into the swing of working again as he was so opposed to it, but he's thriving now and very happy in this environment.

The beauty of it is that we can strike a balance between academic provision and the social and personal development aspects. We dropped a lot of subjects from his workload and it's roughly 50-50 split. I work out his 'programme of work' for want of better description and facilitate it. I'm not academic at all so I get tutors in where they're needed, but my strength is in the social skills so I give him what he needs there.

It is hard work and you need a lot of patience (especially if you have more than one child's needs to meet) but the rewards are huge. My son would have had no decent future had he stayed in school - he was very aggressive and I could see him going down a worrying path if I hadn't acted. Prison was a realistic possibility as he was so violent.

With HE you can do it your way, and more importantly the child's way. You're not tied by LEA and school's meaningless targets and you can actually put into place strategies and activities that work for your child's unique needs. My only regret (and it's commonly echoed among HEors) is that I didn't do it sooner.

like ommmward we HE by choice.

We made that decision when our eldest was a baby & have been involved with HE for 10+ years. I follow ABA principles with my younger children (both nt & ASD) which in practice looks the same has the child led approach which I took with dd1! dd1 wants to follow an academic route & will be off to school to start GCSEs in the next couple of years so she has a pretty structured day now (her choice). We're fortunate to have built a really close circle of friends-almost-family-HEors over the last 10 years & ds has benefited from their acceptance - he may not have 30 age matched peers to 'learn social skills' with but he has friends who love & accept him. I'm not sure if it is coincidence or divine provenance that more than a few of 'our' children also have ASD, though ds is one of the more severely affected.

Anpersand that's such positive news about your ds going into school for an hour and particularly as he was so pleased himself. Let's hope his confidence continues to build. I will send you a pm re sertraline, if that's ok?

corny, sorry camhs weren't much help for you. ommward,streaky,phlebas thank you all for inspiring stories about home-edding sen children. I will be back to read again and with questions later. Right now struggling to keep my eyes open as just back from overnight swimmmingcamping trip.

CAMHS were crap for us too. No practical help at all and what they did suggest was actually harmful. It's a bit of a lottery with CAMHS - in some areas they are wonderful and people sing their praises about how they've turned lives around with amazing support, but in others they're worse than useless.

It's worth bearing in mind that CAMHS is mainly about mental health issues and often none of the team are actually experts in autism or ADHD - you frequently find that parents are far more knowledgable about their children's condition than the CAMHS staff are.

Just wanted to say thanks for the link but it has pretty much reduced me to tears. DS's attendance in the half term before Christmas was about 60% due to a chronically infected ear drum. I repeatedly asked the school for work, help to know what he needed to be working on, anything at all really and couldn't so much as get his reading books changed. When he got back I got a snotty 'bring your child to school or else' letter because his attendance was so poor.

I'm really going to enjoy tearing the HT's head off next week - he's had it coming for so long.

Largelatte, glad it's given you some ammunition. sorry your ds has been let down. Good luck with making headteacher eat his words.