Please help me work out next steps to help school phobic DD1 (15). Long, sorry.

[Canestpasmonnom]

Not sure if right place to post but would really appreciate the knowledgeable advice of people on this board:

I urgently need help to clarify next steps to support DD1 (15), Y10. To cut long story short and at risk of outing us, she’s been out of school for a week due to social anxiety and some long-term stuff at school. ATM she can’t envisage EVER being able to go back to school – not even into building when other students aren’t around. The last week has been incredibly stressful for all of us and I am finding it hard to think straight and assess her options..

Background: DD1 has had long-term mental health issues around eating disorder, anxiety, depression, OCD. Saw specialist ED CAMHS nurse from Y6 to Y9. Had ADOS assessment for Autism Spectrum Disorder in Y7, below thresholds on 3 triads of impairments but closer to threshold re social & communication issues. Now healthy body weight, normal eating patterns. Signed off by Camhs earlier this year (spring?). Since summer have noticed some signs that she is struggling with social and communication stuff. Possibly some depression going on as well as anxiety, but no sign of OCD or re-appearance of ED afaik.

DD1 is academic high-achiever, creative, excels at English. Attends a large, outstanding secondary school. She is very anxious about falling behind with her GCSEs but adamant that she cannot currently physically go in to school.

We have looked at options of switching to private school or elective home ed. But, through the fog, am thinking that might be best for her to remain on roll for her current school, doing coursework at home, ideally with some kind of home tuition, and perhaps moving to a part-time timetable if and when she feels ready. This way she can stick with her same GCSEs (minimising stress) and stay in contact with her small group of friends, plus teachers know her etc. Also think starting new school might be too really hard ATM. We could also supplement whatever tuition school can offer with some private tuition.

So far we have:

• Got school to agree to sign her off til after Christmas.

• Met with school once (just me & DH, DD considered going but on the day felt she could not). They have come up with some suggestions that might help within school day – but DD1 feels these will all make her stand out more (eg leaving lessons early). They have also suggested part-time timetable. Some work has been sent home for her to do, which has helped alleviate her high anxiety about falling behind.

• Got GP appointment to start re-referral to Camhs (have tried contacting the paediatrician whose care she was under before, but not been able to make contact). Camhs say have to get re-referral as signed off - anyway, don't need ED team.

• Made enquiries about some counselling from a local young people’s mental health charity prior to getting appointment with Camhs.

• Made some enquiries with private schools (we really can’t afford, but would try to find the way if thought this was best option).

• Enquired with only local state school that would consider being able to meet her needs - it is some distance away, not sure how practical.

• Looked at elective home ed options – Oxford Home Schooling, Interhigh etc. Have had call from LA EHE team.

My questions are:

• How much help can we realistically expect from the LA re the home tuition part? How long can she do home tuition for? We’ve been told that max tuition she will get is 5 hours for 12 weeks. Is this right? My understanding is that LA should take full-time education as the starting assumption for someone in DD1’s position. But how do we make the case? Should we be talking directly to LA about this? What happens if she still can’t go back after the 12 weeks or can’t ever do a part-timetable, let alone go back full-time?

• Should we apply for statement or EHCP? Is there still time to do this given she is 15? Would it be worth the battle?

• I want to re-explore the possibility of ASD. Is it realistic to ask for a DISCO assessment if she’s already had an ADOS assessment?

• What are we missing? What else should me & DH be doing?

Trying to turn this potential disaster into opportunity for DD1.

Thank you if you have got this far!

[Canestpasmonnom]

Thanks for reading to the end Polter. Have always been confused as to whether can apply for EHCP for mental health probs alone. Will contact IPSEA and SOSSEN.

Will look into ASD assessment again too.

[Dipankrispaneven]

If you can get medical evidence that she can't be in school, that would entitle you to home tuition or something similar from the council. It wouldn't be full time, but you should be able to get up to 15 hours a week at her age, and it ought to cover as much as possible of the GCSE syllabus. It could include online learning, but she should also get a reasonable amount of face to fact tuition.

[Ineedapiginblanket]

I agree with polter on both points!

DISCO is probably the best assessment for a hard to diagnose girl!

An EHCP would stay with her until 25 unless she went to UNI or work. It would give her more time to get through GCSEs and Alevels!

We are currently home edding Dd3 because she simply couldnt cope with secondary but she is 13 (yr8) so it was a better time for us.

If you can get an EHCP she could get home tuition written into it but it wont happen over night!

Definitely speak to IPSEA and also the senco from the school about applying for an ECH needs assesssment! If they havent got any evidence the school might refuse and it could be better for you to do a parental request.

Keep coming on here and good luck

[Flanks]

-Should we apply for statement or EHCP? Is there still time to do this given she is 15? Would it be worth the battle?

Yes. EHCP guarantees provision until 25, and the law now requires school or training until 19. So either way it will help in the medium and long term. You will be stressed and finding things difficult anyway, EHCP process wont make it any worse.

- I want to re-explore the possibility of ASD. Is it realistic to ask for a DISCO assessment if she’s already had an ADOS assessment?

Will need an Ed Psych you back you hard on this I think, and that would usually take some persuading. Not because they wont care, but because it can get murky from a professional perspective to potentially challenge another professional's opinion. It is not that an Ed Psych wouldnt, it is just that you need to convince them something significant was missed or that circumstances have substantially changed.


- What are we missing? What else should me & DH be doing?

Hard to say. You are caring and that is most of it. In my experience ASD in girls is often very difficult, mostly because the behaviours you describe are common and harmful and distressing to you and others who care.

In my opinion you should consider or research residential a placement which specialises in ASD. They do exist, but it may be in a different LEA. Quite often the change in environment has a significant effect. It is a difficult choice, and not one should should necessarily make at all, but probably worth looking up just to be more informed.

Good luck!

[Ineedapiginblanket]

I have to disagree flanks about the request for a second assessment for Asd, they are usually not done by Ed Psychs for a start but by psychiatrists or clinical psychologists! There is an awareness in many CAMHS departments that girls with Asd are being missed and finding someone to do a second assessment shouldnt be made too difficult especially in the light of many recent articles about the failure of ADOS to pick up academically able females on the spectrum.

I definitely think the OP should request a second opinion on this !

[Ineedapiginblanket]

There is one residential school polter there was a tv program made about it recently but from my experience residential will probably be furthest from the OP's mind at the moment, she cant attend her own school so accessing a new school miles from her safety net is not going to happen!

[Ineedapiginblanket]

Sorry that should have said the Op's Dd cant attend

Typing too fast !

[Ineedapiginblanket]

Sorry Polter! You are right of course! I was under the impression that the girls followed a normal curriculum!

I didnt watch the program though!

So there really is no where then!!

[Canestpasmonnom]

Thank you for replying everyone. Sorry for slow response, been caught up in making tea. Apologies for not replying to all points individually.

ASD - will certainly seek a second opinion. Have mulled over many times before and wish now had moved forward earlier. Have been looking at Lorna Wing centre - either asking for referral via camhs or seeing if can do privately. Can't really see any benefit of residential for DD1, who after all might not even get a diagnosis of ASD and who enjoys her own space (probably a bit too much).

Medical evidence - so, something along the lines of a report from camhs? Paediatrician? 15 hours is more than we've been told previously.

Education - DD1 is fixated on keeping pace with her peers, doing GCSEs at same time etc. GCSEs are complicating choices. She wants to stick to the same exam boards which is probably not going to be 100% possible if change schools or elective Home Ed. Pointed out to her tonight that she could even delay doing them by a year which was met by initial panicky response, but then 'But it's nice to know that I could delay. If I wanted. But I don't.' If not careful, this could all feed her anxiety.

One thing I forgot to mention in my initial essay-like post was DD's sensory issues around sound and smell. Complex links to her feelings about places, including buildings and also memories. This never really been covered or explored in previous camhs sessions.

Thank you so much everyone, can already feel my tangled thoughts untangling a bit and the throbbing headache residing slightly.

[Flanks]

I made the residential suggestion not as a 'you should do this' but more a 'know all your options' sort of thing.

ASD in girls is often very challenging, and most of my experiences if it are of similar age to OP's. The opportunity to change environment early on is often very impactful in terms of support, and sometimes the stress of juggling two environments on top of being a teenager is why school refusal embeds as a behaviour.

As the refusal is relatively recent in OPs case I just thought I would throw it in to the mix early on so that if the suggestion is made during discussions it will not be blind side :)

[Ineedapiginblanket]

Where did you gain your experience flanks? I am just interested as the parent of a girl with Asd!

OP, sadly it is really common for girls with undiagnosed Asd or those whos needs are not being met to fall apart spectacularly!

Its great that she has understood the suggestion that she could in theory delay her gcse's.

Things were different for us because Dd3 absolutely hated school so home ed was an easy decisions for her once I suggested it after yrs of trying to keep her in school!

Did the school offer any useful suggestions when you had your meeting?

I would definitely speak to the Lorna Wing Centre and see what they can offer. Her sensory issues are another red flag for Asd so try to remember to mention them when you speak to someone.

Keep going, I am sure there will be a light at the end of your tunnel.

Good luck

[Flanks]

3 years in a FE Residential for students with ASD, focus tended to be re-acclimatising students to classroom environment with the aim of supporting them back in to a mainstream college.

It doesn't automatically generalise of course, as different provisions have different levels of need. The girls in our college were often the latest diagnosed and had the most challenging behaviour. OP's description could mirror my experience almost perfectly.

Girls are horrendously let down by the system in terms of recognising ASD. I wouldn't cast blame anywhere in particular, it is hard to recognise in girls because professionals tend to associate certain behaviours with different challenges that girls face. It often isn't until one person joins all the pieces together to notice all the behaviours at once that it is spotted.

No longer my particular area of work by the way, I have since moved in to other areas of SEN.

[Ineedapiginblanket]

Sounds like interesting work, what is the college called?

I know of Farleigh, my authority fund a couple of boys to go there!

[Waitingforsherlock]

Hi canestpasmonnon, we are in a similar situation although my dd is only 12. Briefly, she had previous school refusal back in Yr4 and we changed schools believing that was where the problem lay. It slowly resolved itself but dd never really felt ok at the new school, ( lots of negative associations, bad feeling, unhappy memories of when she first started). I suppose she tolerated it, but her behaviour was becoming more challenging and by Sept 2014 she had begun vomiting before school, refusing to get up some days etc. then one day in Jan this year she simply couldn't continue going to school any more. Honestly, it happened overnight. We spent the remainder of the term battling to get her in; sometimes until break time, occasionally lunch but mostly for an hour or so. Sometimes not at all. The strain on everyone was immense and at Easter I said that we couldn't continue like this. She has not been to school since.

In the short term I would advise the following:
Create a paper trail, even if you have an impromptu chat in the morning with any member of staff, follow it up with an email. This is really important; I didn't and then it becomes your word against theirs if things turn sour.

Don't be in any rush to get your dd off the school roll. This provides you with some protection and will give access to other bodies. My dd was in Indy prep school. I informed the LA of our decision and have heard nothing from them since. My dd is in total wilderness as she is now off school roll anywhere.

My dd, like yours, hates the thought of standing out in any way so will not entertain the idea of gradual return, shortened days etc. you may need to let her recover from this bout of anxiety and then let her try again.

Get in touch with the Lorna Wing Centre. We did and my dd had the disco and WISC assessment and was found to have Aspergers. She hates the diagnosis, ( a whole different story), but at least I know the root of her difficulties which really helps me cope.

Possibly the cessation of your dd's counselling has made her problems resurface? Is there anyone who she could get some talking therapy from?

This is just scratching the surface. Please PM me if you like. I'm happy to talk about what we are going through if it can possibly help someone else

[Ineedapiginblanket]

It is fragile polter.

Sherlock try not to think of being out of school as being a disaster! We have found a whole new world of home ed and while I know its not for everyone for us it has been refreshing!

I dont believe that school is the be all and end all anymore, there is more to life.

[Waitingforsherlock]

Thanks polter and I need. I am slowly coming round to the idea that school isn't the be all and end all but it's taken me a while... I f I could get dd to do more things socially,( maybe drama or singing, both of which she loves), I could prob feel ok about the home schooling. I suppose we are programmed to think that school is the only way to be educated but I've certainly learnt the art of pragmatism this year if nothing else.

[Ineedapiginblanket]

@ sherlock Dd3 cant cope with group things like drama or singing. She does play in a marching band and a small brass group though.
We have started very gently with social stuff, we found a nice small out door (not noisy or schooly) group that meets weekly and a horseriding group that meets fortnightly. Those are the only regular social things. We do swimming, walks in the park, occasional indoor trampolining thingy. We are lucky that there are lots of small meet ups and trips that we have joined in with. Most places are quiet in the day so being overwhelmed isnt as likely!

We have also done museums and stuff, Dd3 is like a sponge and is loving a more autonomous style of learning.

Check out facebook to see whats on in your area home ed wise. You might be surprised.

Good luck

[Ineedapiginblanket]

Oh and I should say, Dd3 was completely shutdown in June and wasnt open to any suggestion of learning or joining in with stuff!

[Canestpasmonnom]

Thanks again all for replies. Sherlock really sorry your DD is having a hard time too. Agree with thinking about life beyond school, exams and uni plans and have been talking to DD1 about this very thing tonight - but very difficult and scary for her to think about doing this in Y10, especially when her sense of identity is so closely linked to her academic and creative abilities. And scary for us to, big fear of getting it wrong for her. And yet I can see now that she has been merely surviving - I want her to be able to thrive.

School refusal happened literally within a day - although DD has been struggling for years using her own coping strategies which just became too much of a strain. Learnt from the ED experience that forcing not an effective strategy for DD. Reducing anxiety helped so that will be our guiding principle again. Thanks too Sherlock for your experience of Lorna Wing. DD is more open to going back for assessment now than she was a few years ago which is a big positive. Hmm, yes with hindsight she needed more support after ED camhs. Some kind of social communication group or something might have helped, if she would have engaged. But with some of the stuff that's happened it would be hard to see how she could have handled better as it turns out she's tried different things. Telling us or her tutor might have helped but some of it is so insidious...

Would your dd do singing or drama on a one-to-one basis Sherlock, perhaps to build her confidence?