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

Hi.
I’m here. I’m so so sad to be here with you all in this club.
Our kids should be bright, happy vivacious and having the time of their lives, instead they and us are fighting for their lives every damned day.

Sorry, so sorry.
My ds is 18. Square peg, round hole syndrome.
Now social anxiety, self harming, depressive illness and surrounded by blackness almost all the time.
We have the support structures in place, he is crawling through it all, he is doing ok…at least I think that he is…
I hope he is.
How has this happened? How is my child suffering like this?
Questions, about a million of then!
Anyway, it’s good to meet you all and be at last able to talk to people who get it.

Damn* welcome
Have you been in this a long time or relatively new?
Would you like to talk about how you are doing?some of us find venting here helpful(not everyone wants to and that's fine)

@Stilllivinginazoo, I’ll keep you posted after his session next Thursday. I’ve looked up the fizzy bottle theory but all of the articles are related to ASD.
Welcome @Damnyoureyes, nice to have you on here.
@ElftonWednesday, good point, we have thought about ds changing school. We think we’ve found one but it’s independent and they’re full for year 9. We’ve applied and keeping our fingers crossed that they can get him in sooner than year 10. Everyone agrees we need to get him out of where he is now. Until then I just need to fight to get him the support and understanding that is lacking at the moment.
I hope things continue to move more positively for you 💗

Thank you @1leapforward2back

Welcome Damn.

Elfton, welcome. Is DD receiving any support at school? If DD can't attend again the LA should provide medical needs tuition, DD should have received this last academic year. Have you considered applying for an EHCNA?

Crudite never, ever again. It's helpful for some, but not us. Family therapy isn't a slight on your parenting, it's a common suggestion for children. If you post a bit more about DD and school we may be able to help you with what to ask for and how to get additional support.

Mummy the coke bottle analogy works equally as well for other additional needs. I wouldn't change schools until you have further support in place, things are unlikely to be significantly different. Moving now could be jumping out of the frying pan and into the fire, and another placement breakdown would be terrible for DS's MH. I would stay put, even if DS can't attend, push for medical needs tuition if DS can't attend and apply for an EHCNA. Be aware not all independent mainstream schools are supportive of additional needs, and when they are they often charge extra for the support.

Zoo DS1 struggles to rate his feelings too, everything is a catastrophe, we use a scale that goes with zones of regulation. With a lot of work and prompting he can now sometimes rethink when not in the middle of a meltdown. This is a good starting explanation of Zones of regulation.

Thanks all. I’m awaiting a call from CAMHS so if I do hear from them I’ll have more info and I’ll tell you.

They seem to be well meaning but incerefibly ineffectual. It’s almost impossible to communicate with them. We’ve seen them and think we have something in place and then weeks later we get an email and they’re suggesting more meetings to get a feel. DD has now refused to tell anyone ever again what the issues are and to be honest I don’t blame her.

We’ve found a private person who seems like a good fit and would start by graded exposure but be flexible. The only trouble is that their internet connection is bad.

I’m concerned that there is nothing “formal” in place at DDs school. As I’m she hasn’t got any sort of. sEN although she obviously has. She sees a teacher at school weekly and I can contact her form tutor but that’s it. Nothing formal on how to get her into school
After a holiday or on a Monday. Which leaves me concerned that when she comes to taking formal exams there will be nothing in place. This has been going on for years-since reception-but only got unworkable in Y5.
She seems okay at the moment and Moses about school but goes in. At its worse she gets dreadful stomach pains, hyperventilates and feels nauseous and faint.

We’ve thought about moving her to another school but discounted for various reasons.

The last time we talked to CAMHS I said I felt she had a disability ( ongoing, debilitating, likely to continue.). DD got really upset and counsellor challenged me so I feel unable to bring this up again.

I really can’t do family therapy. I’m not strong enough!

Thanks for the tag runner

Hi all, welcome to new posters. Things are fairly calm here at the moment. I've finally started some therapy for myself, I get 6 free sessions through work and it's helping me make sense of my feelings around all that's happened with ds and his mental health. My heart would sink if we were asked to do family therapy, it does feel like a judgement of parenting (even if that's not the intention).

I think that's one of the hardest things I've struggled with throughout this, (aside from seeing ds's distress of course) it's the constant questioning and worrying about my own parenting, what I'm getting wrong and how I could be making things worse, it's exhausting.

Starry, I am mid cbt and that is one of the biggest things that has come up for me, the worry of judgement from others or of getting things wrong. It’s hard

Thanks @Runnerduck34 for tagging me although I don't seem to get email updates from Mumsnet for some strange reason at the moment.

I thought everything had gone quiet as there had been no update on the old thread for some days - I was very wrong!

I'm sorry lots of people are having a hard time at the moment.

We had a TAF meeting last week - wasn't sure what to expect but I think it was useful. Both schools attended and DD2's CAMHS care coordinator. A plan is being drawn up and another meeting is scheduled for a few weeks time. I was grateful to everyone for attending.

I’ve been on MN since my 18 year old was about 2.
Only recently having to manage MH issues with him.
The trigger…a 3 months stint at college. Maths, group work and presentation with social anxiety.

There is huge pressure on him to pass everything or he looses his job.
So depths of depression, not eating, weight loss, burning and cutting himself, withdrawn, no eye contact. Mumbling and one word answers.
I caught a whisper from him, probed and came to how dreadful he is feeling.
Feeling shaky, sweating wanting to run away, angry at himself, wanting to harm himself.

So here we are.
Awful for the poor bugger.

Oh @Damnyoureyes I’m so sorry that your ds and you are living though this. It gets to a point where they are just existing doesn’t it?
I recognise the lack of eye contact difficult. Also, the eating. My ds eats nothing when he’s anxious and everything in huge amounts when he’s low. We have school trousers in a spectrum of sizes depending on where he’s at.
I really hope that he gets the helps he deserves and needs. I know it’s a postcode lottery. Thank you so much for the post and insight. I really wish I’d have found you all sooner. I’ve felt so isolated for a year now. Thank heavens I found you guys x

Welcome all the new posters. It's a strange sort of comfort to all be in the same boat 😁
@Damn I think I posted on your other thread a few days ago.

This sounds all sounds so familiar. Withdrawn mumbling, lack of eye contact, self harming and the eating issues.Ds lost 5 kg in two weeks in ADHD medication but then put it all back on in a week. As he's feeling suicidal and very depressed I said no more to school this week. This has taken the pressure off Ds & school who have been doing their best. So he's relaxed and has been playing guitar today.
I guess we're waiting for next week's Psychiatrist appointment to tinker with the medication. I don't think he's going to be doing his Gcse's this year.

Dd2 weight flips between sizes of trousers depending where she is mentally.it skips between undereating,comfort eating and only eating certain things.camhs said try ED team.theyre confident not their remit so the cycles continue.her self esteems disintegrated

Hi can I join please? My 15 year old dd has been anxious since year 6. Started at secondary and quickly fell apart and wasn't able to attend, she got a place at a lovely hospital school but couldn't get in the taxi so I had to take her there and back and so reduce my hours at work, and she managed about 1 or 2 afternoons a week. She announced at the beginning of year 11 she wanted to go back in to her mainstream school (dual registered) and attended the meeting- I was so proud of how far she had come. They let her go back a year into year 10 and go part time. She was barely attending, then after half term hasn't attended at all. School are brilliant and have said they will do it whatever they need to to support her but she won't go in.

She's basically missed all of secondary, had LA tutors for a time, but wouldn't engage with them. I'm so stressed out and back in that horrible place of will she go to school today and phoning the school to tell them every morning.

CAHMs have been involved for a few years, but she won't engage with them. We've done family therapy and she just gets mad at me if she does talk.

That's the short version anyway! I'm just so stressed out, permanent tight chest, worried about the effect on my younger son, scared what her future will look like and wether she'll be independent.
She was diagnosed with ASD this year, and is very very bright, has big plans to go to uni and I want to help her achieve that. My heart is breaking for her every day. She has no friends and bounces between enthusiam for all the things she wants to do when she's older and monotone voice,low mood, no eye contact. It's absolutely exhausting!
Hope everyone is having an ok day today x

neversurrender welcome lovely
It sounds like things are very hard for you right now.my D's is ment be doing english GCSE this school year despite 3years off(diagnosed at 14 with ASD unhelpful MS,battles to sort EHCP/placement practically slowed to a stop during covid) so I understand that worry!
Have you got anyone in RL to lean on?partner,family or friends?if not,you are not alone so don't hesitate to dump everything here.we are a non judgemental space and we are happy to just dump and run,check in often or occasionally and share those big wins with us that others have a tendancy to dismiss as stuff that's age appropriate so "why are you so happy they did that etc".we get those and all love to hear each others big wins!

Do you get any time for yourself.i bang on about this all the time
The brilliant mobile phone analogy at play again- you don't let your phone battery due or phones useless,so why do we let out emotional battery due and expect to be ok!over the years we've had lots of different things people do from paint nails or bubble baths to walks in nature,few pages of a book,colouring in or hiding from other kids to snaffle a quick bar of chocolate!little things do help more than you think they could

Thank you 😊 I've had a little win in that she engaged with CAHMs today and they've suggested we stop pushing for school every day and she learns at home. I'm relieved to be honest to have that pressure off again of getting her in every morning and juggling work around her going in for one lesson (awful of me I know!). She's having sessions on anxiety and autism to help her understand her (and others) emotions. I hope they help.
I have a DH and he's there for me but doesn't really get involved in the schooling because early on in the school refusal he tried to force her in and shouted (completely non violently) and she told her school she was frightened of him and it became a safeguarding concern with children's services. The social worker did get us accepted into CAHMs and the hospital school place but it destroyed him that his daughter thought that of him and since then he keeps out of school stuff. He's not much of a talker and keeps it all inside and I don't want to burden him and make him feel like I do. It's hard. I have my mum and dad but they dont really understand the autism.

I've lost my friends throughout it all, I have become such a different person. I used to be sociable and outgoing , now I'm awkward and anxious. Find it hard to talk to people because it ends up in talking about the dc and I feel such a failure as a mum.
She's not a lot of bother at home, she does her own thing, so I get the evenings to myself. I just end up staring at the tv then going to bed early.

Totally get that as lil zoo(who was 13 at the time) told school I refused allow her food when hungry

Not just us then! It was the worst time of my life (it happened twice!) I ended up signed off work sick with stress. I hate feeling judged when I've honestly given everything I can and more to improve things. I've never given up on improving things. Just I think the fighting is all for nothing! I see people fighting for help from CAHMs, and specialist school places, supportive schools and we've had all that without fighting and I feel so grateful but it's not made any difference because she can't engage.

She is much better now to be fair, a couple of years ago she was suicidal, going missing in the night, and took an overdose. I ended up in a &e with her just to keep her safe. The CAHMs crisis team were really good and visited every day. She eventually admitted she did all that to get sectioned so she could be forced to be around people. Was heartbreaking. She didn't leave the house for two years nearly. We've built her up slowly starting off just going out in the car, now she goes out and walks the dog on her own- which is massive! She has come a long way in two years, so who knows where she'll be in another two.

I don't know anyone else in this situation, you're lucky to have a friend to offload on! I feel jealous of a work colleague who's same age DC is always in trouble at school and late in after being out with his friends 🤣 I think I wish my dd was doing that!! so it's hard to connect with people. It feels good to let it all out

That's what we are here for
Wow!she has come a really long way
You must be very proud of her

You sound amazing @NeverSurrender and your dd has come such a long way. It sounds like you have all had quite the time of it. Absolutely agree that you need to make sure that you’re looking after yourself too

Thank you @MummyJ12 and @Stilllivinginazoo. I'm not amazing, far from it! I've got it all so wrong. I've been pushing her to go to school, because I thought that's what she wanted when she went back to mainstream but all I've done is made her anxiety worse. The CAHMs worker said not to push her to go, but in the past DD has said if you'd made me go to school like a parent should then I wouldn't have missed so much school ! I know she doesn't understand, and we did do all we could but it led to her not leaving the house at all, self harm and severe anxiety. The psychiatrist recommended we back off from pushing into school so we did. I hope one day she understands we did all we could!

I am so proud of her though, she has so much strength in her to leave her lovely supportive autism friendly hospital school and go back to mainstream school , a year back with a class of people she didn't know. That must've been so hard and she did it! She also has an infallible feeling that she is always right and knows best and everyone else is wrong 🤣I hope that strength will see her through life on the right path for her!

Welcome Never. I echo Zoo, you are not a failure. Everyone can look back with hindsight and wish they had done certain things differently. It doesn't help to dwell, you will torture yourself.

DS1 attended a CAMHS unit as a day patient for a while, he made a lot of progress there. I wish he could have stayed, as it was he stated longer than normal because there wasn't anywhere for him to move on to. He now has an EOTAS package and progress is slow.

Would DD be able to engage in less direct therapies? Does DD have an EHCP? If DD can't manage F2F or live online tutoring could she access recorded online lessons she can dip in and out of? As part of the children's services involvement did the disabled children's team assess DD? And a carer's assessment for you?

Muddling glad the TAF went well.

Fferny education can always come later, MH has to be the priority. It may be DS can cope with a reduced number of GCSEs. You should push for medical needs tuition and apply for an EHCNA.

Damn are the college making adjustments? You can apply for an EHCNA for further support. Does DS receive PIP?

Crudite one of the problems with CAMHS is you have to keep chasing them. Legally, under the Equality Act, DD has a disability, but it doesn't really matter whether DD accepts this or not.

You can apply for an EHCNA yourself, IPSEA have a model letter you can use here. Can DD go in a quieter entrance, a bit earlier or later so it's quieter? Could a key worker meet her every day. School could do more to make school easier for DD so hopefully getting DD to school is easier. Depending on her needs that could be: a time out card, a quiet room when needed/at break/lunch, moving 5 mins early, laptop, notes, placement within the classroom... Do the school offer counselling or interventions such as drawing and talking or emotional literacy support?

It has been a long day, I'm sure it should be bedtime.

@1leapforward2back when we had a social worker DD didn't have a diagnosis, it was just suspected and no assessment was offered. I wasn't aware of a carers assessment then so didn't ask for one. From what I no now it would've helped at the time things were in crisis. She had a place at a mental health unit, but the psychiatrist made a home visit the night before and put a stop to it. Said he was certain she had autism, and would come out of there worse than she came in. He gave us some strategies and we were really unsure at the time but followed them and she did improve. Basically to make our home like a hospital in terms of safety for her, and I became her Carer. She needed to get up in the morning, wash, and eat breakfast and try and leave the house in the car even just round the block. She couldn't have her computer until she was up washed and dressed even if it took until lunch. We broke the day up into slots and worked through them. She did improve thankfully as I thought we were going to lose her things were so bad. We aren't there at all now and she is much better and functions well seems happy enough reading and learning languages (her big interest!), just has this massive social anxiety that stops her mixing.
I'm going to speak with school tomorrow and see what they can put in place for her. They have been great, especially for a academically selective school, and the Senco is committed to doing what it takes to help her. We were going through the EHCp process before she went to her hospital school, but we didn't finish it after that. The school said they already had everything in place for her there without one, and they had had some children unable to access further education because the colleges couldn't meet their stated needs. Now she's back in mainstream we're doing it again, it will be needed for the future I think.

Hope you’re ok @1leapforward2back