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

zoo the unit looks like they're really thinking things through. I've always found that it's not the resources available (although they are obviously important) but the attitudes, understanding and values of the adults who work there. DD's school has a dreadful Ofsted, no money or resources, but it's an incredible place because of the people who work there.

I've been trying to get a psychiatry appointment this morning privately - even going private most places are completely booked up for over a month. It feels like there is an enormous mental health crisis going on for children, and no one is taking any notice. We managed to get an appointment on Saturday morning through detective work and persistance - bloody expensive though. Hope that the Dr is ok...

GP was looking at prescribing because he feels that it is so urgent for DD, even though the guidelines are that it should be under the care of a psychiatrist. Hopefully we will get a prescription on Saturday.

Provision looks great from photos zoo, so pleased things are looking so promising for DS and sorry it's been more difficult for DD and lilzoo, ,ignore their dad's sniping.
Leap I'm glad everyone's OK, hopefully all recovered from shock, it only takes a split second for something like that to happen but all well that ends well.
Thank you for pep talk, was feeling low last night and again this morning DD yet again couldn't manage school despite it being her favourite lesson and really wanting to go in today because last night she said she'd rather stay at her current school.
Bubbles, so pleased you found an appointment, yes even getting a private appointment has a waiting list and yes it is very expensive, I would get them to write to your GP and ask him to prescribe as private prescriptions are also expensive

Hi all, only Tuesday and it feels like it really should be the end of the week already....

bubbles glad you finally got an appointment sorted and I hope it goes well, your dd's honesty was brave but must have been so hard to hear, those glimmers of hope are there though

leap thanks for your advice re diary, I have been keeping one and will keep trying to log. I'm glad you and your ds are ok, that sounds very scary.

zoo those pics are great, hope all goes well on Monday 🤞

runner I keep telling myself the academic stuff can come later but it's hard not feel under pressure for them to catch up. I know rationally it's more important to get them comfortable in a school though and if I'm honest it makes me feel a bit panicky if I think too much about it but I guess we have to trust they will end up where they need to be....

Ds is up and down, has managed to be in school last 2 days but it's not been easy getting him in, lots of freezing on the spot and he's still in the sendco area not mixing with other kids. We took our time and tried distraction (mainly me chatting about inane stuff), he actually took a fidget toy off me this morning for the walk down for the first time but still can't manage breathing techniques and I've had to leave him outside with teachers both days. I have a meeting at school tomorrow, am ridiculously tearful at the moment so really hoping I don't cry.

"starry* deffo feels like longest week ever
I've ahed a few years.you won't be first or last parent who does

Today has been Very Hard Work

Runner when changing schools, and especially leaving mainstream, is mooted many DC's initial reaction is to want to stay where they are. Not necessarily because they believe it is the best option, but because that is the known and moving is the scary unknown.

Bubbles fingers crossed Saturday goes well. Don't lose heart if things deteriorate before they improve when DD starts antidepressants.

Starry breathing techniques are hard for DC to put in to practice when 'in the moment'. It's very different to learning them in theory, generalising is hard for many DC with MH conditions. DS1 has been practicing breathing techniques for years, but still isn't reliable. I hope the diary helps, we learnt a lot from keeping a detailed diary.

Zoo the unit looks lovely. Once the final touches are made it will feel homely. DS can always do more GCSEs post 16 if he wants, or as long as he gets enough to move on to the next stage you/he may feel he has what he needs.

Leap - not surprised near-miss shook you all up - hope you are feeling calmer now.

Zoo - photos are great and unit sounds excellent. Sorry you are feeling stressed. DD2 has always seemed to feel pain more extremely than expected too but I've never explored why this should be.

Bubbles - hope appointment goes well on Saturday, you did well to get one organised so quickly.

Runner - how are you doing today? It's difficult not to feel sad about what could have been. I find it difficult to see FB posts by parents of DD2's former friends as it makes me sad that DD is missing out on life while they are moving on. Hope your DD manages school today and taster days at specialist school happen next week.

Starry - your DS is doing well keeping trying and saying he wants to be in school, that's really positive.

Muddling being hyper, or hypo, sensitive to pain isn't uncommon with ASD. How interoception affects every aspect of life is interesting reading, and can explain a lot of difficulties.

That's interesting Leap, I should read up on it I think. She has always reacted extremely to pain and illness, faints easily etc. Dizzy if bends over, feels faint In shower of water hot/arms above head for any length of time. Tends to sweat a lot without exercise. Been investigated very fully with no physical cause found. EP report suggests exploring DD's sensory profile and she also asked be how DD is with heat (awful, hates it).

Has POTS been ruled out?

Poor temperature control &/or recognition can be part of ASD too.

DS3 never recognises when he's hot or cold. He could be frozen and still in t-shirt and shorts or sweltering in hoody and not notice, even if he feels uncomfortable he doesn't make the link to why and needs prompting to put on and take off layers etc.

How has everyone's day been?

Starry- hope DS made it in again, he is showing such courage, resilience and determination.

I've pulled my big girl pants back on after my wobbles of past couple of days, thank you all for your understanding kind words, I know many of you are going through similar or worse.

DD made it into school , hate how my mood is linked to her school attendance and social successes but don't know how to stop it. We will see what tomorrow brings.
Managed to get mediation certificate sent through so next step tribunal forms but will have to see if she is offered a place at specialist school after taster week first as thats the basis on which they make a decision, if she manages to go I think she'll be offered a place, but if she doesn't manage to attend I think they will say no.

Listened to a really interesting talk on zoom tonight by Kieran Rose," the autistic advocate " on masking and autistic burn out.
If you have DC that are or might be autistic I'd really recommend listening to him.

Seen by Cardiology and anxiety thought most likely cause (also low BP). I queried POTS - told v. difficult to diagnose as tilt table test so unpleasant most professionals won't do. Also think BP didn't behave as it would if POTS during sitting/standing test. DD always hot.

Hi all, I hope weds has been kind to you.

Thanks runner I completely identify with your comment re mood being linked to school attendance, the days ds struggles more the harder I find it to be resilient, I too would like to know how to break that link (or at least reduce it somehow).

Well done to dd for getting in today, you must feel pressure re taster week, last thing that's needed is extra pressure, how does she feel about it?

Ds did well today, less freezing going in and we had a long chat tonight where I told him how proud I am and how fantastic he is doing. Meeting with school went well, there are no plans to get him into class at all currently, just to get him into school each day and be in the sendco room hopefully managing a little work, he needs assessment to see if he may be depressed and that is contributing to lack of engagement (I suspect he is).

Leap and Muddling - interoception is such a huge thing with autism, and it is linked to alexithymia too - inability to understand one's own and others' emotions. DD doesn't feel hungry/thirsty, hot/cold. Her responses to pain are backwards - if she's making a huge fuss it's probably nothing serious, if she says she's fine then it's probably an A&E visit! Her therapist thinks that the alexithymia is linked to her depression - not understanding the huge waves of emotion that she feels as a teenager. She said the other day that for years she thought that there were only two emotions - happy and sad. She realised a couple of years ago that there was 'angry', but those are the only 3 she recognises. Lots of psycho-education needed!

Runner - thank you so much for that link. I have just read Kieran Rose's article on autistic burnout and sent it to DD. She is reading it now. It rang a whole church tower of bells for me - will be interesting to see if it does the same for her.

I am currently writing information for the psychiatry appointment on Saturday. It's hard to write the details of what happened.

Runner is the school wholly independent or a section 41 independent?

Bubbles DS1 (complex MH needs) and DS3 (ASD) both have alexithymia too, and linked synaesthesis. DS1's difficulties are more severe. ELSA helps and we use Zones of Regulation, although progress is slow. On paper DS1 has rote learnt faces belonging to a limited selection of emotions, but he can't always generalise this and in a heightened state reverts back to how he was prior to any progress.

Neither recognise thirst/hunger either, and both have an EDNOS diagnosis. As a result and because DS's need a high calorie/fat/protein diet due to a medical condition we make meals and snacks highly structured.

We have no proper thirst response here either in any of my kids or for myself.i just recognise being dizzy/very dry mouth as I need to drink.i do forget,as does dd2.ds has a rigid schedule he sticks to regarding water intake which gives him 5
Cups water plus two of milk

I must follow that link when o get a mo

I heard lil zoo refused school today as she "feels to sad" and has a headache...she was very quiet at dd1 last night and wouldn't eat dinner.shes also convinced we are all being passive aggressive with her if we query her ideas or say anything she doesn't like

I'm very tired and upset no progress is being made.if it's not to her liking she shuts down.i got the blame as lone parent with depression/anxiety "it MUST be your parenting"but things clearly aren't improving being with dd1 either(for newbies she visited then refused to come home).by coincidence family support rang me today to check in.they aren't impressed she's off,nor that she's refusing fluids in school still/til after 4pm even during hot weather and has disengaged totally from previous year friendship group

Well DD read the article, and said some of it was familiar (feeling exhausted after school) but much of it wasn't, particularly around the difference between wanting the world to stop and actually wanting to die. She is going to write a list of things that contributed to her wanting to take her own life for the psychiatrist, and is happy for me to read them. I'm utterly dreading it, although I'm pleased that she is at a point where she can verbalise something.

She seems to be very calm, rates her low mood as 10 (on a scale of 0 - 100 where 0 is neutral and 100 is actively trying to take her own life). I'm struggling today. On the surface everything is calm and stable and ok, but I have no fucking idea what is going on in her head, and it just terrifies me to think that she might try again with no warning signs. I'm so sad.

Can someone link the article for me please?

theautisticadvocate.com/2018/05/an-autistic-burnout/

Bubbles - I would be completely terrified too, you must be on constant high alert. It is very very positive she is talking to you, that hopefully is a good sign .
Are you able to leave her in someone's capable hands and do something for yourself for a bit. You must be burnt out , do remember none of this is your fault and you are doing an amazing job

Leap, it's a completely independent school, our LA only seem to do maintained not section 41. So choice is maintained, that I cant visit and won't talk to me other than to say we're full go away and talk to LA ( LA are maintaining mainstream can meet her needs so wont refer us to specialist)
or completely independent but this is the only one with a single place. If I can't get her there they won't offer the place ( or at least thats my impression)

Couldn't get DD into school, she's laying in her bed " trying" but seems emotionless and frozen. Just had to cancel tonight's private therapy appointment too as can't get her there either.
Just don't know how to help her, tbh I don't think anything I do makes a blind bit of difference.

Hope everyone else has had a better day.

((Hugs)) bubbles I wish I could say something to help, I'd echo that it's a really good thing she's communicating with you, sometimes it's when things are a bit calmer when it all hits you. I hope you can be kind to yourself and take some time to do something for you

Tough day for you runner I think that's the hardest thing as a parent, the feeling that you can't get through to them. There's a book I'm reading at the moment, it may well have been mentioned before- never let go by Suzanne Alderson, partnering not parenting through mental health. I'm finding it helpful

Hi everyone I'm new to this thread (new to mumsnet!) and not great with online forums in general! Very glad to have found this. My DD is 15 and has always been an anxious child. Was assessed for ASD at age 4 but was not diagnosed and instead deemed to be "very shy". I am now questioning this.
We have had a lot of difficult events in our family over the past few years (deaths of young relatives and illness). Then last year during the summer my husband took suddenly ill and was in hospital for over a month. Due to lockdown only i was able to visit, so kids didn't see their dad for a month and he was a very faded version of himself when he got out.
Anyway, that's the background, sorry for going on. DD's anxiety and mood has steadily got worse over the past two years, absolutely terrible during lockdown 2 last winter - self harming, not speaking to us, totally withdrawn, told her brother she didn't want to be alive. We were on waiting list for CAHMS, but it was taking so long that I tried a virtual CBT therapist - might as well not have bothered. Therapist was lovely, but made no impact. In May I found someone who would see her face to face, but again they tried CBT and it just didn't work. Things improved a bit over the summer - she got out with friends and we had a couple of short trips to the coast. However, going back to school this month has resulted in her being more anxious than ever. Absolutely awful - so thin skinned, we can't say anything to her. The slightest tiny decision throws her - what hoody to wear, what bag to take to school, what length to get her hair cut. She is incapable of making the simplest decision and then constantly frets about the one she has made. Homework causes a meltdown every night. She is horrible to her poor dad (who nearly died last year) and he really can't do anything right in her eyes. Everything is a complete drama - she is exhausted by this and so are we. Luckily I have found another private therapist who seems very good and is trying different approaches to CBT (more based around compassion - which feels like a good fit to me as she is such a sensitive person and very very hard on herself). I also have a very supportive GP who has agreed to start her on a low dose of sertraline. Honestly, if you'd told me a year ago that i would want to put my daughter on medication for anxiety I would not have believed it. I am so hoping that the combination of therapy and meds works, but am also very aware that it doesn't always. My husband and I are at our wits end. We love her so much, but she is often very hard to like - such a horrible thought to have about your own child. I am very scared that she will be like this for life - I can't see a future for her if we can't turn this around. She is so bright and was always a high achiever, but is not able to concentrate at all at the moment so school work is suffering (the least of our worries, but it's her GCSE year and I know it will be hard for her is she doesn't do well). I have one friend who's daughter has OCD, but she seemed to get diagnosed and treated really quickly. I feel terrible that this has been going on for years - we thought she was just quirky and to be honest before lockdown, a lot of her anxiety was kept at bay by being active. Now she does virtually nothing and I have just found out today that the climbing club she loved (her main activity) is not going to start up again post COVID! Sorry for the rant, I am just feeling pretty miserable myself today! I also can't help feeling that this is somehow all my fault (if I'd been a better mum, she would be more resilient etc etc. I know that's probably not true but....). Anyway, if you have read this far - well done (!) and thanks

screen welcome.i doubt there's anyone here who can't describe having feelings like that of our own children
Teen years are "turbulent" for all,but lob in some anxiety/depression and it really is a very exhausting experience being a constant verbal punch bag.
Totally get the everything's an insult
My youngest(known here as lil zoo) is 14 next month and every.bloody.thing.we.say is passive aggressive if she's not agreeing with it
Dd2(17) has anxiety and depression and again I catch her moods all the time and am expected often on the back of a tongue lashing ten minutes before to be kind and reassuring as she's now having a panic attack!
Don't know which way up I am most of the time

Hello scoreen
Feel free to rant away on here, totally recognise how upsetting, frustrating and worrying it is and how helpless you feel.
Thank god for a supportive GP -mine wouldn't help just said we'd have to wait for camhs, frankly theres more chance of having tea with the queen than getting an appointment with cahms.
I hope the cbt and medication helps.
My DD is on setraline, it took 6- 8 weeks before it started to help and initially had horrible side effects mainly nausea so hang on there.
It has helped somewhat, her mood has improved, she's less withdrawn but is still too anxious to go to school.
She's just started private therapy but she sometimes refuses to go.
So it's a long road, hopefully all our DCs will get there eventually and lead happy healthy lives.
Puberty and teen years are the worst. Puberty was like a time bomb for my dd who is 14 and just diagnosed with ASC.
It might be worth investigating another assessment if you suspect ASC .
DD tells me all the time I am patronising , can't show any level of concern or ask her how she got on at school etc without that accusation being thrown at me.

Hi Scoreen - this is a great place to vent and also a great source of helpful advice and support. You are doing everything you can and it's not your fault but of course we all question our actions along the way - a manual would be really helpful! Great that you've got a supportive GP and as I understand it unusual for them to prescribe. DD2 has recently moved to Sertraline from Fluoxetine - will be moving up to a therapeutic dose this weekend. lots of people have said very positive things about it and I am hoping for positive results.

How are you doing Runner? Did your DD manage school today? I totally get it when you say your mood is linked to your DD's school attendance and social successes - I know mine is but find it difficult sometimes to distinguish between whether it's DD2 related or age and peri-meno - the joys!

Bubbles that's interesting what you say about your DD's pain responses. We always though DD2 was a bit of a drama queen and has her reactions have always been quite extreme with illness/accidents and we now tend to "under react" ourselves.

Bump, anxious DS here too, been an awful 18 months 😞