Parents of anxious kids/teens support thread(part 2)

[Stilllivinginazoo]

Hi everyone
Our original thread filled up fairly fast so I'm offering a second one
Anyone who cares for a child/teen with anxiety can join us as a comment,or hang around
Post your worries,your tips,ask for advice,rant about your day -we understand
Also feel free to share any small victories

I had my meeting with Sendco and hoy to talk about current situation, adjustments and EHCNA.
They agree dd is getting worse but I think they do now understand it is ASD driven rather than just anxiety. They have spoken with a caseworker (!?) Who has told them dd will not get the ehcp yet as they need to demonstrate two terms worth of sen adjustments. :/ they have given me this persons phone number so I can speak to them directly. I think I will call a helpline first.
They have agreed she needs more support so we have talked about ELSA, art therapy, photographs of any new teachers with seating plans, a communication book so she has solutions put in writing, and I explained that any support needs to be delivered in a mature and not patronising way or she will disengage.
So it's some progress. Whether it will be enough remains to be seen.

Anne, I'm glad school are starting to 'get it.' I would take what the LA say about EHCNAs with a pinch of salt. They are trying to put you off. You have enough evidence to meet the criteria of has or may have SEN and may need provision via an EHCP. Insisting 2 terms of assess do review is a blanket policy and illegal. Besides, you have been meeting with school for months and DD has had some interventions/adjustments for a while. Today has been much quieter thankfully.

Zoo have you looked at your LA's 2 SEMH schools? If not, start there. They may not be suitable, but in order to get an out of area of independent SS named on the EHCP you will need to prove the LA schools can't meet DS' needs, and the best way of doing that is by visiting.

If you have already looked at those start contacting some of the independent/non maintained schools. I PM'ed you a link to where you can search for them and some that are in/around your LA.

Don't get too hung up on whether the schools are SEMH or ASD specialist schools. Even within the same primary need the schools can be vastly different.

Have any of you watched the MH documentary that was aired on Tuesday night? I watched it when I couldn't sleep last night - I found it a difficult watch.

The sendco I saw the other day actually recommended I watch it. I havent seen it but she said there were similarities with our situation so I plan to find it on catch up.

Onehop* what was documentary called?

It was "Losing it: our mental health crisis."

Yes Anne, from what you have posted here the girl could have been your DD, and similar to your DS Zoo.

Seeing similarities was difficult, DS has been on the verge of admission a couple of times, and I have rung the crisis team &/or taken DS to A&E many a time. The talk of not understanding emotions is DS1 too, and to a lesser extent DS3.

Thank you onehop will have a look

Not been great couple of days here
DS had a tummyache/bad taste in mouth and completely- freaked.hes so body aware and has no tolerance for pain it's exhausting,esp as he cannot explain properly what's wrong.was either mild bug or indigestion...
His anxiety sent dd2 thru roof as he is unpredictable.her best friend has fallen out with her and has no other goto when anxious.plus gets frustrated with self about using timeout pass so isn't and instead so overwhelmed laying head on desk not taking anything in.didnt eat for 20 hours..
Youngest having friend issues.she ranted about not be asked to join in something.ahe has no empathy.no concept smiling makes people want talk to you etc.shes blunter than a spoon and is constantly set D's/D's off by telling them to suck it up
I lay on sofa most yesterday to exhausted and low to move.i worry for both girls and even a blocked nose sets D's off as feels different.its neverending and grinding me down

Try and look after yourself zoo
I just got off the phone with the county SEN case officer who the school referred me to. After explaining everything, she has recommended I request the EHCNA myself, but to try and get lots of supporting info from the school.She said dd would be borderline as she was so academically able but clearly had a lot of health needs.
It was nice to talk to someone with some empathy actually....
I'll talk to DH about it tonight.

Sorry Zoo, the programme was "Losing it: our mental health emergency," not crisis.

DC with competing needs is draining, make sure you're looking after yourself. Hypersensitivity to pain can be part of ASD. A couple of steps backwards were bound to happen sooner or later given the huge leaps forward DS has made recently. Could teachers prompt DD2 to use the pass?

Anne, not being able to get a needs assessment or EHCP because the pupil is a adequate able is a myth. The LA will want you to believe it, but it is not true. There are many on MN with academically able DC who have EHCPs, including my DS1&3.

Whilst anxiety is considered a medical condition it can also be a special educational need. Anxiety in an EHCP is a special educational need (so should be in section B of an EHCP) and the provision for it e.g. CBT/SALT/ELSA etc is special educational provision (so should be in section F). Anything that 'educates or trains' is SEN provision (section F) and they need it corresponds to an educational need (section B). There's lots of case law that makes this clear. If you haven't already IPSEA AND SOS SEN are helpful websites and advice lines.

I haven't watched it, but is this it 1hop? Might be a bit too close to home for us.

www.channel4.com/programmes/losing-it-our-mental-health-emergency/on-demand/68236-002

Sorry you're having a tricky time zoo. One of DDs main problems is hypersensitivity, especially to do with tummy/felling sick, so similar here.

It's her18th soon. But she doesn't want to do anything or see any family (apart from me). A treat for her would be staying home all day. So that's what we'll do. She doesn't even have a favourite meal and I'm worried about getting her a different cake as it's a 'special' birthday, but feel like I shouldn't just get her her usual. IDK. It's difficult to know whether to try and do something special and risk upsetting her. But I don't want her to think I'm not acknowledging it either.

It's Still0 BTW, changed my user name!

We have had EHCP draft arrive today

I had cc copies all proffessionals stuff except camhs which having read she feels parental MH has significant impact makes this unsurprising...
Recommendations seem to be small class sizes and staff trained in anxiety

Yes 0ttile, it was an interesting, if difficult watch. I would ask about the cake. If DD would like her usual one I'd go with that. I have to remind myself, what would make me happy isn't alway in line with what makes DS1 happy. For him happiness comes from the familiar even though I would think it was too everyday.

Zoo It's highly unlikely the draft is a legal. It needs going through with a fine tooth comb.

It must be detailed, specific and quantified, otherwise it is worthless. No woolly phrases like 'access to,' 'would benefit from' or 'equivalent to.' For example, small class size needs quantifying. How many exactly? And staff trained in anxiety, what staff (TA/1:1/Class teacher/SALT...)? What training? What intervention will they be delivering? How often? How long for? Who will design the intervention?

Are SALT, OT, ELSA and some kind of MH therapy (probably CBT) in section F? And the recommendations from the EP?

It is important things like SaLT, OT, MH therapy go into F and a specific and quantified because it is then a) enforceable and b) appealable.

All DS' SEN needs should be in section B and every need should have corresponding provision in F and an outcome in E.

SOS SEN check drafts, which would be well worth doing.

This from IPSEA is also helpful.

DS' wanted to make pizza tonight. So they did. I told them I wouldn't do anything other than help with the oven. Unfortunately I did have to backtrack on that. I stepped in when I thought DS3 was going to lose his fingers chopping peppers, onion and mushrooms. I did some and we did some hand over hand. DH also restacked the dishwasher. Baby steps.

Good that the draft has come through zoo.

Just had a 2 hour meltdown from dd as she cant face school on Monday. I'm so worried about the toll this is taking on her, but I know of I keep her off for more than half a day I will never get her back in. :(

Good that the draft has come through zoo.

Just had a 2 hour meltdown from dd as she cant face school on Monday. I'm so worried about the toll this is taking on her, but I know of I keep her off for more than half a day I will never get her back in. :(

@Stilllivinginazoo
Your DD sounds a lot like mine. She so motivated before. Even with the anorexia, kept up with school work, made up all the time lost and now she doesn't even oper her books. But I guess it's these motivated kids who are also the ones who really care and that pushes the anxiety up.

@1hopforward2back
Happy for all suggestions! I am always thinking about what could be the causes of all of this so if there's any stone unturned, I want to know.

We met with her psychologist this week who wants to try a different tack. Until now we've been pushing her to go to school, at least one lesson. But she doesn't seem able to even cope with this. So she wants to try backing off completely with school as it pushes her anxiety so high but set her (and us) the task of getting her into a routine. Her nights and days are completely messed up so we need to get her up in the mornings. I'm just so bloody grateful that DH is home with her and tries to keep her busy, takes her out for walks and on errands. If we didn't have a parent at home, she'd just sleep all day.

It's all so frustrating. She's such a great kid, so much potential. I'm so scared this will just rob her of her future. She even said to me the other day that she doesn't feel like a normal teen :(

Onehop there is nothing specific in it relating to class sizes etc
I am really feeling stressed at idea I need go thru everything checking and try to find answers as well as find a school to match these invisible targets

Oh Anne, sorry to hear that. I hope you and DD managed some sleep last night. As hard as it is do you think you're at the point that getting DD back into school isn't realistic? And DD needs more specialist support &/or provision?

Teen, that's what we were told too. Set bedtime and wake up times are a must for MH to improve, even if little sleep has been gotten overnight. Otherwise you get into a vicious circle.

Zoo, I agree it is stressful. But, it's so important the EHCP is detailed, specific and quantified, otherwise schools/LAs can wriggle out of providing support. Contact SOSSEN, they may be help check it. Then ask the LA to amend. Are the reports (that should be in section K) specific and quantified? If not, you need to ask the LA to go back to the report writers to make them so.

Difficult few days
Dd2 is exhausting.tearful or angry and anxious most of the time.number of huge panic attacks

Still struggling with the paperwork of EHCP.ive spoken to IASS this morning and requested copy email to them from lea

Dd had massive meltdown and failed to get into school again today.
I have sent the school a list of her difficulties in every subject. Some teachers are still getting her to run errands to other classrooms. Wtf.

The school have agreed to get all teachers together with the senco so they can outline dds complex needs, which is a start. They are also going to sit her at the front by the teacher in every class from now on.

Dh and I need to consider whether she is able to mentally stick it out while we apply for an ehcp and use the schools evidence or just change schools and start from scratch.

Anne I hope your echp is more plain sailing than mine.im drowning,not help by school blatant lies of he was support from X time and low attendance reflects this

I can't believe some teachers are still failing DD to such an extent Anne.

If it was me I wouldn't move prior to having an EHCP. It could just be setting DD up to fail before she even starts. She is unlikely to be able to attend all lessons without SEN provision, so the placement would be likely to fail. The LA may also force you to appeal for a EHCNA by saying you need to wait to see how DD settles in new school. If DD can't cope and is medically unfit for school the LA have a duty to provide education. I'd do that whilst applying for an EHCP and naming a new school when you have it.

Zoo, I'm glad DD3 is being referred for an ASD assessment. Did you raise the discrepancies at the TAF?

DS had an unsettled day yesterday. Really anxious and an increase in self injurious behaviour. I can't pinpoint the trigger which is frustrating.

onehop hope you have got to the bottom off DS3 unrest,it's always frustrating not being able to pinpoint these things

Dd2 got her mock results today in envelope with head learning...
She PASSED!!!how in earth none of us know.she was literally a wreck,but her logic and memory is very definite and I guess that pulled her through.she scrape maths by 1point to pass,and basic 4 pass in Spanish and history.which given the hysteria failed any of third of papers for that she must've excelled on the one she felt went semi ok!5s for I media,English lit and a 6 in eng lang.head learning was as shocked as she was and told her "text your mum the good news"❤️
I am bursting with prideshe was told firmly I was proud she attended every day on wobbly legs ,hold my hand tightly all the way there, gasping for air,and if got ungraded I'd still be proud of her for the determination to try.this is beyond words!!

Hoping it boosts her confidence a little and gives her a modicum of motivation to actually revise/prep for main ones!round 2mocks start after half term,but will be in library and we know what to expect,which I'm hoping will help matters

I hope it does lift DD2's confidence Zoo, she should be very pleased with herself.

It was DS1 who had a bad day yesterday. I haven't got to the bottom of it, and today hasn't been as bad. Who knows. Most of the time we can pinpoint the antecedent, but sometimes it seems to appear out of no where. DS has poor insight, so often hasn't got a clue.

I am procrastinating on here when I should really be sorting paperwork.

Two big things to report today-
DS is now signed up to volunteer at local nature reserve he lives in gardening team.i will be appropriate adult and it commences shortly with fortnightly Saturdays to help clear areas,plant seeds in wildflower bunkers/bulbs
Pond work
Planning fruit tree area
Wood chip pathways
I gives us so much therapeutic value lovely to think we can give something back and he likes being outside/pottering in our garden.theres lots wildlife there- birds,squirrels,lots insects,bees and butterflies in summer.the odd frog,fox,badger etc

And HUGE NEWS-
He agreed to go with outreach to church end our street to cafe to play chess and have a drink today
On Tuesday they're plan go IN HER CAR to library
Thursday we are all going together to "the bridge" outreach school setting.its only two classrooms behind a retail park on an industrial estate about 15/20 mins in a car but it's a massive leap for him.hes not been in a school setting since December 2018