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!

Again canest not being able to ask for help or even know that you need it is an indicator towards Asd!

Your Dd and you have done amazingly well to get as far as yr 10 in my opinion.

I think now is the perfect time to take a complete break. The holidays are here now anyway. If she want to carry on with coursework at home then fine but try to encourage her to only do short bursts!

Try to get out of the house everyday again just for short bursts, we did and still do lots of walks in our local park orforest.

It isnt going to solve her problems but it might give her some headspace and allow her room to think.

I hope CAMHS get back to you quickly and offer something useful.

Good luck

Thanks Ineed. Have put wheels in motion for things suggested above re Ipsea, Lorna Wing. DD has been walking every day with me and/or DH and our naughty Labrador - who is one reason why I think she's made it this far.

Brilliant, keep going but remember to look after yourself too! Parents needs get lost in all the stress, I had reached breaking point in the summer and dropping out for a bit has been as good for me as it has for Dd3.

Good luck with ipsea and lorna wing

Thanks Ineed. Someone at work has just remarked on me 'looking drawn' , think will head home early.

Thanks Ineed and canest for your suggestions. Taking it gently is the way forward as you both say. Dd has come on in strides since the very dark days back at the beginning of the year, ( although my dh can't see it).

As you say canest, I just don't want to get things wrong for her and neither do I want to be in a position for her to tell me that I did get things wrong further down the line. Ultimately though I have to safeguard her mental health and accept that she can't cope with the stuff that other kids can.

You are right sherlock mental health is the most important thing! We need to do everything we possibly can to protect it.

EPs are not authorised to diagnose ASD. As she has already had an ADOS you can ask your GP for a second opinion and referral to a centre of national excellence (having exhausted local knowledge) like to the HFA clinic at GOSH. DS2 was referred there for a second opinion - they repeat the ADOS, do DISCO and WISC and lots and lots of questionnaires - including online questionnaire which took for about 5 hours to complete.

Also you may want find it useful to consult an OT with post-graduate qualifications in sensory integration. There is a physiological association between eating disorders and sensory processing disorder - not helped by being hypersensitive to smell. She may have a mix of hyper and hypo-sensitivity. Psychological explanations which ascribe mental health problems are often unnecessarily self-punitive and unhelpful imo.

Thanks Keeping. I've asked for referral forms from Lorna Wing and also contacted Elizabeth Newson Centre. What the GOSH clinic offers looks very thorough though and I think might be what we need. We've got a GP appointment tomorrow so will ask about the referral process. Can I state which service I'd like her to be referred to? Unfortunately our supportive, long-standing GP left a few years ago and no consistent GP since then. Also can't get hold of the paediatrician who saw DD1 from y6 - y9. Will see what tomorrow brings. From my previous experience with getting support for DD1 and DD2, I don't think there is any kind of NHS sensory OT support or assessment for sensory processing disorder in our county. Will ask paediatrician when can contact her. Would consider going private.

OTs in these parts do the Sensory Processing Disorder checklist and provide a sensory diet with training in a workshop that either 2 parents or 1 parent and the class TA can attend. They don't do specific interventions - e.g. therapressure for tactile hypersensitivity.

As you will probably be applying for an EHCP, find an OT who will do tribunal reports. Some private centres will do assessments and write reports that are used to recommend their own treatment packages and specifically say that reports cannot be used in tribunal.

ime the LA will agree OT SPD at tribunal and independent provision (but hide behind the lack of NHS provision before appeal).

I asked our GP to refer to GOSH. GOSH then have to decide whether to accept the referral. The diagnostic process takes 4-5 visits over about 6 months and the local CAMHS/comm paed service has to agree to any follow up care.

Thank you