Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

Never A diagnosis isn't required for an an assessment by the disabled children's team or a carer's assessment. You should ask for both.

The EHCP process shouldn't have stopped when DD started at the hospital school. IPSEA have a model letter you can use to reapply. With EHCPs you can access provision in excess of that typically otherwise available. It is highly doubtful without an EHCP the school could or would offer everything an EHCP can.

As DD isn't attending school the LA have a statutory duty to provide education, it should meet DD's needs taking into account what she can manage and how it's delivered. Another benefit of an EHCP is this statutory duty only applies to compulsory school aged pupils, the only way to guarantee provision after this is via an EHCP, which can last until 25.

Don't worry about this. Unless wholly independent there are limited circumstances the LA can refuse to name your preference, the bar is high. Schools are often not clued up on the legalities of EHCPs.

DS1 narrowly escaped an inpatient CAMHS admission, his saving grace was his age and a complicating medical condition which would have made finding a suitable bed harder. I was worried when he started as a day patient because he was the youngest he would learn unwanted behaviour. Like you we are in a much better place now, thankfully.

Mummy it has been a long day.

leap hope you got some sleep and are ready for today's challenges

Thanks for the new thread zoo. Just catching up and reading through. Welcome to the newbies! There is so much non-judgemental support on this thread, and an absolute wealth of knowledge about supporting children with their MH, but also about accessing support, EHCPs, LA provision etc etc. I would be really struggling to navigate the system without it.
DD15 seems to be beginning to respond to meds, with a bit more energy, and making positive choices to do things, like having her ears pierced yesterday (she has severe depression and anxiety, and is autistic). CAMHS are actually being great (although we had to get a private psychiatry appt to get meds started through the GP - the wait for this could have been up to a year...). DD has not engaged at all with the CAMHS worker - she has continued to offer appointments to DH and me, and has now organised to contact DD directly through text messaging, and attempt to connect with her this way. CAMHS have had to provide her with a separate phone for this, so I am impressed that they have found a way to do it, rather than just discharging DD for not being able to engage.
Slow progress, but progress nonetheless. We are focussing on the tiny baby steps, and not really looking any further forward. It's hard to stop yourself worrying about no education, no qualifications (DD is Y11 and not attending school), very very little social life, and the long term prognosis. But we keep telling ourselves that the only thing that will make the long term stuff possible is decent mental health, so that has to remain our focus.
Sending strength, patience, sleep and the time to take a breath to everyone...

bubbles small steps forward are huge leaps for our children
And you are correct in long-term MH being more important than the here and now stuff.that can come together at any point

Really difficult physical battles getting DD2 into school two out of four days this week. But she has been in every day and comes home in good spirits and does well in school.

Are we right in using physical force to get her into school? It feels like on the bad days she is getting more physically resistant. Doesn't help that although she is only 12 and slim she is very tall for her age so quite a proposition when she doesn't want to do something. She is incredibly stubborn, which in a way could be a good thing, I admire her strength of character, but it's also working against her, and us as parents.

Wise words Bubbles, so pleased ( and sadly amazed!) your CAHMS support has been so good.

Elfton- I think the fact she seems happier when she has successfully gone to school speaks volumes but no advice to give regarding forcing her.
DD14 school refuses and there's no way I could physically dress her and carry her to the car so I need her to cooperate.
I will say that that their world can shrink really quickly when they no longer go to school and that in turn can detrimentally affect their mood and MH. I suppose it depends if they are safe in school when they get there? - not bullied or isolated and are supported by friends and teachers? Equally to keep pushing and fighting and trying and failing to get into school every day is emotionally draining and damaging to everyone involved. Do you know why she is refusing? Is it bullying, a particular subject she hates, struggling with work, or is it the environment she finds hard, or possible ASC or Adhd?

We can't pin it down to a particular thing. We know that she is safe in school, are as sure as we can be that no bullying is involved and she has lots of friends. If anything she has the gift of being likeable to most people and makes friends easily. If anything it's the relentlessness of school and homework and how much it occupies her time and life. She thinks it's all a bit of a waste of time and would prefer to muck about all day. Wouldn't we all, to a point. Slight dyslexia was mentioned at primary school but if so she seems to have developed lots of strategies to cope with it.

I think for her at the moment school is a bit like hiking up a mountain every day would be for me, as someone who is not keen on heights (when there is a rsk I might fall off them, anyway). Some days I could do it and other days you'd have to drag me, particularly if I thought there were narrow ridges and steep slopes to descend. Some days she gets ready easily and gets herself there on the bus. Then other days it's the opposite.

Elfton, sounds similar to my DD, she started to avoid school at the start of year 8, we managed to coax her in for a while but then she started to barracade herself in her room. We couldn't find any obvious reason, not bullied, had friends ( although she did find dynamics of friendship group difficult at times) was doing well academically (however she didnt believe this even with good school reports ) no particular lesson or teacher causing a problem, just increasingly anxious. Puberty was like a bomb going off. Out of the blue ( to me) school asked if we had considered autism. I was taken aback, there is autism in the family but she is very different to her male cousins who are autistic, she was socialiable, always had friends round after school , no behaviour problems but had always been a bit of a worrier.
Had an assessment and she was diagnosed with autism. A year or two earlier I would never have believed it, many friends who knew her in primary school were shocked. She's very good at masking, copying social cues, wants to fit in but the large mainstream school environment coupled with puberty and complexity of teenage friendships pushed her over the edge and she could no longer mask and cope and she went from melt downs and panic attacks to eventually completely withdrawing from everything and everyone.
I've no idea if your daughter is autistic but it's something to perhaps consider, girls are often fly under the radar until puberty.
Just read back- sorry if that sounds scary and negative, didn't mean it to, just flagging up something to consider

Hi folks
Thank you for the tag @runnerduck
Thank you for pointing me in @sirzy direction @1leapforward2back

Dd has just been discharged by the eating disorder service as they say they can't do any more for her. She is eating the same foods she was when we went to them, but more of them. Her weight has stabilised so she now has weight for height of 74% rather than 70%. They say she may never eat normally and it will take a very long time for her to accept new foods or adjust behaviours.

We are waiting on ehcp panel 3rd review of her case, based on submission of new NHS OT report. We haven't even seen the report so I am not happy. We have barrister on the case now who is chasing up which means less stress for me.

DD attendance has increased to about 55% which is good. She has made some friends at school which is helping.

For DS the eating disorders team sadly made things worse. I think talk of food makes him more resistant to eat which was a major issue when things where at the worst.

Thanks @Runnerduck34 It's certainly something to consider. It's funny as I thought of autism more in relation to DD1 - very sensitive to noise, particular about clothes, labels, textures, used to let loose and get really cross when she came out of school, pushes herself, very academic, independent and mature for her age. DD2 has almost always been the exact opposite, so laid back as to be horizontal, apart from this real stubborn streak about what she definitely doesn't want to do. She did a fair bit of nursery-refusal at age 3/4, and I was really worried about her starting school, but that all went without incident until Y6/7. As you say, puberty is almost certainly a factor. Again DD1 and DD2 are so different. Puberty was late-ish and gradual for DD1, she was if anything a bit on the small side for her age for a while and is now about 5'5" aged 16. DD2 on the other hand has always been tall, but grew about 6 inches in a little over a year between Y6 and Y7 and is 5'9" (or possibly more, I haven't measured her for a while!) and is not yet 13. So puberty hit her like a ton of bricks, she went from a girl to young woman in appearance overnight but is still a child.

Could I ask how you went about getting your daughter assessed? I did ask if DD2 could be considered for an EHCP though I didn't expect to be successful and wasn't.

Anne I can't believe DD has been discharged at 74% WFH, if the local EDT can't help they should refer on.

Sirzy DS1&3 are the same, they don't have ARFID but have EDNOS and a medical condition requiring a high calorie/fat/protein diet, they have overnight feeds.

Bubbles small steps are more maintainable. A MH nurse once likened it to slow weight loss being more likely to be long term. Have you got medical needs tuition arranged, and applied for an EHCNA?

Elfton did you formally apply for an EHCP? Reapply and appeal if refused, the majority of appeals are upheld. The bar for an EHCNA is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. DD meet the threshold. If you didn't formally apply and it was the school who told you DD wouldn't get an EHCP don't listen to them. Schools often incorrectly tell parents that, but parents go on to successfully apply themselves.

Dyslexia is often co-morbid with ASD and other neurodiversities. Things often unravel for girls in their teens as the demands increase and they struggle to mask and cope. You mention coping strategies for the suspected dyslexia, could the school refusal be because she's struggling with the increased demands of secondary.

To a point I think you do need to push DC. DC with MH difficulties often struggle to rationalise what is in their best interest, and as Runner posted, we have found once a DC's world shrinks if is much harder to expand it again. It is one of the reasons we make some things none negotiable, given the choice DS1 would never leave the house again. But you need to know when to stop pushing because continuing would be harmful, each child has their own tell tale signs of reaching the tipping point.

Hi all.... back with an update--hence why I'm up at silly o'clock! My lawyer has just written to head of children's services outlining all the LA breaches on ds ehcp. No opportunity given to us to appeal after previous ER; no access to the asd ARP and parents not informed; no medical needs tuition (anxiety letter from GP) despite ds not attending school for this term yet (40+days); no decision letter 1 month after last AR. I could go on! Feeling stressed that this is actually happening, but I need an education for my son!

Having said that ds and I had a big row this afternoon and I told him he can go back to the horrible mainstream school as I'm done fighting for him. Not true of course , and we made up and had a good evening with some model building. Onwards and upwards...

Hi all, hope you are all doing ok.
Spoke to docs to try and get something to help DS sleep. No go, need CAMHS. Spoke to CAMHS and they said still months to wait. I mean, seriously. DS is getting worse by the day. Not sleeping, restricting food because he's too anxious to eat most stuff (sensory)
What am I supposed to do??
School work has gone out the window this week, he's just too anxious

@MackenCheese I'm not surprised you are up in the early hours with all that on your mind. It must be reassuring to have an expert dealing with the LA and holding them to account - hopefully takes some of the pressure off you.

We've just heard from the LA that they have agreed to issue an EHCP for DD2 (17)! I'm pleasantly surprised although not seen the draft yet so there will probably be more battles to come but presumably the agreement that a plan is needed is a a very good step as they are acknowledging her needs?

@always scared you can order melatonin - called Circadin, via online prescribing. It's perfectly safe & non addictive but you might have to pretend it's for you. As I think it only licensed for adults. DS is prescribed it by his doctor.

DS also has a S.A.D. lamp that he uses for half an hour every morning. The special light is meant to regulate the natural melatonin in the body and help regulate sleep. It certainly helps DS.

I'm utterly down at the moment.
Anyone else?

@Fferny1 thanks. We just want someone to prescribe something, as we don't want to get anything wrong. Although I'm getting everything wrong!
Yes, I'm incredibly down too. Sending a non mumsnetty hug.

We have some good news! The LA have finally conceded to issue the EHCP. They now have 5 weeks to issue a draft. Amazing what having a barrister on board can do.
I finally saw the OT report and it talked a boys toileting issues so a lot of cutting and pasting. Our legal advisor now wants independent psyc, salt and ot assessments for dd to help with the formulation of the draft.

1leapforward2bak - I agree about the edc. We have so much going on tbh that it's impossible to know what should be happening. I think when we get all the reassessments done I will see if we can get the food stuff picked up there.

Congrats muddling through

That’s amazing anneofavalon so pleased your fight is paying off.

I’m another one utterly down at the moment, was doing well but seem to be struggling to get out of this latest dip

Could it be worth calling the crisis team at CAMHS @alwaysscared? Sending you and @Fferny1 supportive hugs. I’m so sorry to hear you’re both feeling so down at the moment.
I’m exhausted as usual, have spent most of the day running ds round between home, school and his CBT session (it’s an hour away so a three hour round trip).
Formal complaint submitted to school today, lost sleep over that last night. 😬

That’s really good news @AnneOfAvonlea

Well done Anne. DS1 once had a C&P EP report with 3 different names, none of them his!

Brilliant news Muddling.

Mackencheese I hope the complaint works, if it doesn't send a pre-action letter.

Always GPs won't prescribe melatonin or anything else to help with DS's sleep without it being initiated by a specialist. If DS isn't deemed to need the crisis team you could ask for a referral to a sleep clinic, or if you can get a referral accepted by general paeds. I don't know if either would be quicker though. Although melatonin is only licensed for insomnia in over 55's (or jet lag in adults for immediate release preparations) it is considered safe. Alternatives are something like promethazine - but again it is unlicensed for insomnia unless a result of urticaria and pruritus, you can buy it OTC but would have to lie to get it. It's wouldn't be prescribed long term either. Or piriton, don't try this for the first time at night, it makes some DC hyper. How much is DS restricting his intake?

Fantastic news @AnneOfAvonlea.

Great advice so far thanks. Yes I did properly apply for an EHCP. I might mske an appointment with the school senco anyway, we've only dealt with pastoral so far.