Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

We have had the EP assessment and draft report as part of the ehcp process. It was very thorough. I have asked for some amends to make the proposed outcomes more specific.
I think it may go to panel in the next couple of weeks. I haven't been asked for any input though. Should I have been?

Morning everyone.

1Jump Thank you for advice and links which I will look at. I'm aware EOTAS will stop at the end of year 11 and that EHCP will be needed to ensure future education provision. Everyone told us that they couldn't refer to EOTAS including GP and we didn't push enough (we need to get better at this).

We have been asked by a couple of people what we think DD will need to have put in place if able to get an EHCP (template letter included this too). I have no idea! Don't know what she will be able to manage in September - depends if treatment has started and how it's going I suppose and whether she is awarded any GCSE's or not (more likely not). She has only left the house/garden a handful of times in the last 6 months despite best efforts by us so I don't know what options there will be (hoping EHCNA would help work this out?)

Tomorrow she is due appointment for overdue and necessary eye test which will be challenging and exhausting for her - DH is taking her.

Hope you all have some positive moments over the weekend and that you get some time for yourselves too.

Morning Everyone,

I've just caught up on the last couple of pages. Welcome @MuddlingThroughWithoutAClue your dd sounds fairly similar to mine although she's younger, yr7. Only a handful of outings in months.

We've had some small successes in the last couple of weeks. I've stopped the 'expectation' that dd will go into school, and this has clearly lifted an element of her anxiety.
We're working on trying to get her up, showered and dressed earlier, 15 mins earlier every other day. Todays target is 10.45 🤪

A couple of days ago she mentioned that she thought it would be a good idea to try and go for a walk each day, which is huge progress. She got out of the front door yesterday but came back in after a minute really upset "I really want to, but I cant". 😞

School have been so disappointing. We have found a home Ed group on a farm that I think we could send her to, to build her social skills again and the home Ed group are happy to work with the school and weave in some of her English and Science curriculum. I mailed the school over the Easter hols about it, and have followed up each week (and every day on the absence line) and I've heard nothing back! I get the impression they may push for me to deregister her, but that is not going to happen! I work ft!

I need to start the EHCPNA soon. We have a private adhd appt at the end of May and we need to get a Pead referral which the school nurse is helping with after the gp refused saying 'it's a mental health issue' which it is but the Ed Pysch reports v low visual/spatial too.

She has started expressing herself through drawing which is a huge change. I had no idea how good she is! The pictures are all sad, but one has a butterfly too, so maybe she is hopeful of change. I unashamedly am attaching one

We're going paddleboarding in the rain today, ds and dd2 are excited. I doubt dd1 will come, but I'm always hopeful!

Anne was DD assessed by SALT, OT and a psych &/or CP? Also a social care assessment? And your LA's preparing for adulthood service? Yours and DD's views should have been asked and be in section A.

When you received the draft the LA should have given you 15 days to make representations and name your preferred placement. All needs should be in B, each need in B should have corresponding provision in F. If the outcomes were vague and woolly I bet section F is too. Everything needs to be detailed, specific and quantified. Nothing should be left for the school to decide.

Most first drafts aren't worth the paper they are written on. Section F is usually vague and woolly with phrases such as "access to", "would benefit from" and "or equivalent". For example, many read "X would benefit from 1:1" as 1:1 will be provided which too often isn't the case. It is unenforceable and parents don't realise until they need to enforce the EHCP. Removing "would benefit from" isn't enough - who is providing the 1:1, what's their training/experience/qualifications, how many hours, what are they doing, where...

Another example is using "a trained, experienced 1:1". Parents often assume the training and experience is much more than in reality, because the training and experience isn't specific and detailed you can't do anything about it. Also, LA's often put OT/SALT/MH provision in section G when it should be in F and enforceable.

Muddling I suggest DD needs home tutoring or a therapeutic specialist school. (Or would online school work? Presumably not if DD couldn't access remote provision.) With some kind of therapeutic support and therapy - CBT can be included. As can art/music/equine therapy. Also, emotional literacy support and OT, including sensory OT. Depending on DD's needs maybe other provision such as SALT (especially if you've ever questioned ASD), physio.

The EHCNA should help, but only if all the assessments that should be carried out are, and the reports are detailed, specific and quantified. Provision is taken from the reports, if the reports are vague the provision will be too. The LA should seek advice from:

"a) the child's parents or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child's parent or young person reasonably requests that the local authority seek advice from."
SEN regs 6(1)

Note H - for DD that's at least OT and a psych &/or CP, and possibly SALT.

Put the drawing is brilliant. Can you make an exposure ladder for going for a walk? A paed assessment is part of an EHCNA. In the meantime the LA should be providing medical needs tuition. You are right not to deregister, it makes it harder to get support.

Hello everyone, just reading through the thread trying to catch up.
Welcome muddling your DD sounds very similar to my youngest DD who has just turned 14.
She is in the process of being assessed for ECHP hopefully we should know by July.
School have been supportive ,reduced timetable can be in SEN area rather than class, some TA support etc but she still isnt coping and is averaging 2 x 3 hour days a week .
I am now thinking should I ask for some education provision outside of mainstream school as we simply cant get her there as she cant seem to cope in a large noisy secondary school environment.
Not sure what is available and don't know how to find out let alone how to go about applying for it.
Honestly some days it just completely overwhelming I have the feel I am failing her but not knowing enough, not doing enough...
Thank you for the link Jump I will read up on it, any other advice from anyone would be greatly appreciated.
Now she has an ASC diagnosis CAMHS have finally offered her some therapy- 10 week course of 90 minute group therapy sessions over zoom for teenagers with ASC and anxiety. She is absolutely refusing to do it, believes it wont help, she can make herself better, doesn't like group aspect or it being over zoom.
I am trying to gently convince her but not going well so far.
Not sure if CAMHS will offer her anything else if she can't engage with this. She has been struggling for 18 months and its hard to see a light at the end of the tunnel.
Hello again Anne, we were also told when eldest DD was ill with anorexia that they couldn't do therapy until her weight improved as very low weight effects brain function and they just can't process any therapy. Also very low bmi usually means it not safe to prescribe medication which can take edge off and give a bit of leeway to start therapy and help encourage eating. So its a rock and a hard place and it sounds like DD has a worrying low bmi, sometimes they have to hit rock bottom to start to climb up and i hope your DD starts to climb out soon, dont give up, stick to meal plan, no compromise, be just as bloody minded as anorexia, I know its exhausting, with persistence and right support they can and will get better, oldest DD now at uni studying psychology and has sandwich year next year working for CAMHS - the irony!

1jump - we saw the draft Ed psych report. Rather than a draft ehcp report. That hasn't come through yet.

They have taken info from an EP, the school, camhs. We asked for the private OT to be considered and for Salt to be part of the package. We haven't as parents been asked to fill in any forms or anything...

I think I need to follow up.

Anne if you haven't had the draft EHCP yet you are very behind. In order to meet the 20 week deadline the LA must send the draft by week 14. Send this letter ASAP, if you don't get anywhere contact SOSSEN for help with a pre-action letter. You need a SALT assessment, if you don't there won't be any SALT provision.

Runner if you google EOTAS medical needs tuition and your LA you should be able to find who is responsible in your LA. If you can't and would like me to look PM your LA and I will see what I can find, understand if you would rather not. When asking, remind the LA part time timetables are illegal whether or not parents agree unless as a short short term reintegration measure, and DD has been on a part time timetable longer than short term. Do not accept no for an answer, if they refuse threaten Judicial Review.

CAMHS should offer further support, individually and face to face if needed. You will probably have to push, remind them it is can't, not won't. Therapies can also be included in EHCPs.

@PutYourBackIntoit - hello - I recognise the anticipatory anxiety you mention your DD having with regard to going to school. DD2 is similar and tends to become very anxious/panicky/unable to function if she feels there is pressure/expectation. The drawing is very good (DD2 used to love drawing but is now too self-conscious in case someone sees it and judges her - I hope she will enjoy it again at some point).

@1jumpforward2back - thank you so much for all the helpful information and advice, I am very grateful and will investigate further. The EOTAS is online 1:1 (only a couple of lessons a week as this is all DD2 is able to manage currently). They and we hope she may be able to build-up to visiting the school room physically at some stage over the next few months. Social Communication difficulties are being considered by CAMHS and we have completed screen questionnaires which if I've understood correctly the psychiatrist will review before DD2's next appointment in mid June and then decide whether or not to refer for neurodevelopmental investigation. Until recent months ASD had not crossed my mind but now I find myself looking back at things through a different lens and reevaluating. DD1 has a neurodevelopmental condition/learning difficulty - I'm not sure but think this may increase the likelihood of DD2 also a neurodevelopmental condition? I will add some background on DD2 and see if anything sounds familiar with anyone.

@Runnerduck34 - hello - you are further ahead in the EHCP process than us as we've only just requested a needs assessment. I hope you get the provision your DD needs. It does feel very draining trying to get help for your child especially when the people/organisations you expect to help don't give you the help you need/expect. I feel like I'm floundering around in the dark trying to piece a jigsaw together blindfolded! I like having a plan - I can work with that, I need momentum to help me keep positive and there's just so much waiting around for things to happen.

DD2 has spent all day in her bedroom apart from going for a bath. On bed with headphones on and blankets. Have failed to coax her out to join us for an activity she enjoys - although she claimed she was coming downstairs 2 hours ago.....

Anne sorry to hear things have been so difficult.how are you doing?

Putyourbackintoit we encourage celebrating small wins.the pictures good!

Lots of us in progress of plans.my LA have been blaming covid/staff shortages/everyone WFH and only access office emails/phone messages when allocated staff go in to collect
Jump the 15 days to consult are working ones I assume?think that means by Tuesday/we'd they should know if school is suitable meet D's needs....
No schoolwork current one at all this week,just couple wellbeing phone calls.they saying under new academy be more independent learning rather than online stuff,with member staff available if helps needed.....

Muddling a family history of neurodiversity does increase the likelihood. Despite DD2 having ASD I'm missed DS3's it was DS1's CAMHS team that first noticed.

Zoo it is 15 calendar days for consultations. Although, you may not hear straight away because it is 15 days for the school to reply, not 15 days for the LA to inform you. If the EHCP is any good you should be able to challenge the school's offer. Even as it was it can't have been offering everything in a half decent EHCP. LAs should not be using Covid as an excuse to miss statutory deadlines, the relaxations ended last year. Do not allow them to get away with it.

Anne another thought, I know you previously discussed antipsychotics. Olanzapine is often used in eating disorders. Typically AN, but sometimes other types.

jump my apologies - I attempted to post a detailed summary re: police involvement a few days ago and accidentally deleted it. I will attempt to respond again soon. Need to be in a stable state of mind as recollections can be traumatic. But I know why you asked, am sympathetic, and happy to help.
You mentioned olanzapine for Anne’s DD
(waves to Anne). I’d been researching this myself if things continue to slip.
Bad day today with DS1. Plus it’s Mother’s Day here and still feeling fatigue and muscle discomfort from Covid vaccine yesterday.
Have read through thread and wishing everyone a good (or at least stable) week ahead.

vikingI'm sorry the day has been so diffucult
Ripped from sleep 215 by dd2 in terrific panic.say back door step half hour

Sorry you and DD2 had such a disturbed night Zoo and hope your day is better

zoo thank you. I’m hoping you get some reprieve as well. So difficult when you haven’t slept. Wishing you a calmer day ahead

Viking I hope today is easier for you and DS1. Sometimes celebration days come with an overwhelming sense of expectation. Absolutely no need to apologise, I am sorry my post retraumatised you. I understand if it is too much.

DS1 takes Risperidone. It doesn't help with his weight, nor sleep, but it does with his PTSD symptoms and swings from high to low and back again. We tried to swap to Olanzapine to see if it helped more. It didn't and his MH deteriorated so we swapped back.

Zoo I hope you manage some down time today and a better night tonight.

jump no need to apologize. When I started summarizing, I began to realize he had 3 encounters, not 2 . I’ve had a tendency since childhood to block bad memories, although I’d like to think I’ve learned healthier strategies since. With each encounter he has developed more anxiety around the law. He clearly understands what he did wrong in each situation and he has dealt with understanding officers. However there may come a time where he will have to face a consequence, and I’ve had to accept that. There is only so much I can do to protect him in a healthy manner.

Was a very late night,but I wasn't ripped from sleep
Did a little knitting yesterday pm.ive not done any in very long time so was nice change.hoping my fingers can continueas I've seen s knitting pattern in adult sized with dinosaurs in that I know D's would love!

zoo happy knitting. I hope you are able to continue to enjoy without much discomfort

Thanks viking
I learn crochet in lockdown but find a blanket too heavy on one needle (if that makes sense?) So limited to squares til I can learn to read patterns/do other stitches.ive been knitting since I was a small child,so over 40 years now,and can watch TV and not really have to pay much attention unless patterns complex!

Anne I would definitely complain about the ehcp. We submitted our 7 year old's request 2 weeks before you did and we got the final draft last week. He has learning difficulties though rather than mental health problems (it's my 13 year old who brings me to this thread) and I find with a lot of the paperwork stuff the questions aren't appropriate for mental health problems so it's difficult to say what you need to say.

Putyourbackintoit love the picture.

zoo hope you are able to catch up on sleep.

We had a scare with DS2 this evening. He went to sleep at 8pm which made me and dh panic that he had taken another overdose. Then I found him staring at his phone and looking upset but as usual he wouldn't tell me anything. His phone was open on the messages with his friend page, the same friend he was messaging just before he overdosed last time. Really scary and I think I've upset him as well by asking him about it. Sometimes I wish teenagers came with a manual!

Hi
I’m tired so place mark and will read and digest all

ellie I’m so sorry. I have been where you are and it is always in the back of your mind. Slightest change in their routine and you believe the worst has happened.
How are you coping lately?

Not a good day with DS1. Heads butted, he got upset, left the house and said he was going for a walk. I can’t relax until he gets home. Had phone appointment with his GP (update and going forward). Thankfully he wasn’t gone long.

Welcome thisisworse.

vikingdo you find the gp helpful?
It's hard as they get older isn't it?dd2 swings between wanting to be around me,and needing space to herself and the switch is sudden and sometimes with Shar words.i definitely need to get thicker skinned over it!
Insomnia is back with a vengeance last few nights
Dd2 has teams camhs app today.fingwrs X for us please that something's finally going to be put in lace to support her!

Welcome thisisworse.

Good luck today Zoo

Ellie the constant worry and being on edge is the hardest part, I think. Especially the worry you have missed something DC could use to self harm with or forgotten to put it away.

Viking this is my worry. Both times DS1 has, quite rightly, been seen as a distressed little boy with additional needs in crisis, even if last time wasn't handled well. But, I worry that one day in the not too distant future he is going to be seen as a belligerent teen that is drunk or has taken something. The two times DS1 has had contact have been because he has been a risk to himself rather than to others or acting illegally but that can change if, for example, restraint is over used or used incorrectly as it was last time.