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

And the award for most pointless home visit goes to....D's school

They turned up.ask about our summer(D's hates heat and wasn't up to outings) told us wait for ASOT is 9-18 months minimum then gleefully how many days til half-term then buggered off
Here a max of 5 minutes but caused D's a near breakdown prior to at stress the. Being in "his space"....

Zoo how ridiculous! What was the point of that? DD1 has just started to not want other people in the house. I’m clear with her that other people will remain welcome - she can go to another room if she wants. She’s become really attached to me and it’s exhausting. She won’t talk to DH (despite previously good relationship) which leaves me emotionally wrecked!

Quite frankly I’m quite exhausted. Although I’m managing to keep my own mental health reasonably ok but being a bit zen about things I’m actually soooo exhausted and weary of it all. I feel like a massive failure and everyone else managed to raise well-adjusted children except somehow I messed them all up! I think I have so much wanted them to be protected from disappointment and sadness that I have prevented them from becoming resilient.

Anyway day off work tomorrow while they are all at school so I can plough on with the to-do list!

Hope everyone is ok

bigbus do I need to pop round and give you a good shake?you are NOT useless and I sincerely doubt you are damaging your children!!
Anxiety breeds a need for control in all areas and thats what shes attempting to do.tbh we have allowed dstoo much control in a bid to lower hisstress but its raised everyone elses
No loud music(made me very unpopular with dd2),no friends or sleepovers (friends visiting was rare which I think made it more of an issue)we all had our lives on hold going it would help him get better.but wil possibility of diagnosis now all but inevitable it's about managing EVERYONES needs.so I'm about to drop a bomb that thing need to go back to how they once were
He's getting worse by the day no matter how I handle him and the gulf between him and his peers is now painfully obvious to me.no longer just"a bit quirky" he is full on different and it worries me what is to become of him
It's been a year now since that first panic attack at school and he is now in a vacuum.no friends or social life with peersat community wellbeing cafe he barely speaks anymore to the old dears preferring to hang outside with one of their dogs
He avoids everyone but me at camera club on his beloved nature reserve
Oh,and he now gets cross when challenged to do things he sees as unimportant to him(eg routine bedtime shower...he was in his pjs yesterday when I went to say goodnight to youngest.i questioned why when hadn't heard shower and he got angry saying he'd planned X,y,z instead and refused to change his plan.
Anyone got experience of tackling rigidity successfully?

I need to stop my pity party and pull my big girl pants up.will be back later with positives I promise!!

Big, you are not failing! You are doing what you think is best at the time. What is needed to get through each day.

DS is highly dependent on me. If I am around he tries to constantly sit on my knee, stroke me (I often feel like a pet), hide behind me... It is exhausting.

Anne, the school sound really supportive.

Zoo, I hope the TAF went well.

DS dislikes being made to do things he finds emotionally difficult, rather than unimportant. Some things I compromise on, others I don't. The problem with compromising with DS is he will take and take. Obviously it's the anxiety driving that but it needs challenging otherwise he spirals. We use visual timetables and now and next boards. We also have a whiteboard in the kitchen which everything for the week goes on so they know what's happening. All DS' can see what the everyday routines are, what they are expected to do and when, as a result they need less prompting. It helps we have strict morning and evening routines that don't change - every weekday morning is the same, every Monday evening the same and so on. Though this summer I have realised all DS' independent living skills need work. Probably because I do things for them because I don't have time for it to take 10 times longer, but that needs to change, otherwise I'm still going to be prompting a 16 yr old to actually wash rather than just stand under the shower, put his socks on and still making him breakfast.

It is part of a bigger picture. DDs were much more mature when they were DS' age. I would dearly love to wrap DC up in cotton wool, but that isn't rational and I want them to live life as normally as possible. DH tells me when I am being overprotective.

I won't actively make unnecessary noise if I can see DS is struggling but I won't stop everyday noise - musical instrument practicing, other people talking, DC's friends and professionals visiting, our washing machine is quite noisy unfortunately... But I don't allow music played really loud unless it's a special occasion, I ask people to stop tapping if DS is around, I don't allow shouting etc. and with the exception of a couple of DD's friends I don't allow friends upstairs, there's no need we have plenty of room downstairs, sleepovers happen in the playroom, which means DS can be safe in the knowledge he can escape if he wants/needs to. DS1&3 both have ear defenders and noise cancelling headphones that I expect them to use if they aren't coping with the noise. DD2 also has noise cancelling headphones.

I worry about DS' social isolation, especially being out of school.

We've had a mixed week. DS had a failed attempt at a scan without a GA which we've been working towards for months, so now it'll be a hospital stay because he can't have a day case admission. He's had an overnight hospital stay for blood glucose and oxygen monitoring which didn't go well. Positively he seems to like the tutor, this morning he's been working out how many Lego bricks would fit in different size containers, and how it changes with different size Lego bricks. He coped really well at the weekend with a change in routine due to birthdays. Not so positively the personal trainer tasked with fulfilling the physio in his EHCP is a bit let's say unusual and hasn't been hit, but is staying because they have the qualifications and training in all the seperate parts of his complex needs and it wouldn't be easy to find someone else. I'm starting to look at secondary schools, earlier than usual but DS1&3 have EHCPs so need to decide earlier for them.

That is a really long, rambling post. Sorry.

Big how are you feeling today? I think we all have days like the one you described yesterday. You are definitely not a failure - the care, love and concern you have for your DC is so evident from your posts. You are a wonderful parent, and the fact is some children are more challenging to raise than others. Be kind to yourself. And I understand - I do the same thing myself. I have a friend with 4 boys: age range 18-26. These boys are so well-adjusted (in my eyes), well-educated, polite, and independent. If I want to feel like a complete failure as a parent, I compare her boys with mine. Then I try to pick myself up and remember that someone out there always has it worse than me.

Zoo vent away my dear - you will get through it, and so will DS. These are some of the most challenging days for you, but with a diagnosis comes support. Unfortunately I don't have a successful plan to tackle rigidity. What I have done in the past is discuss and come to a mutual agreement, if possible. Good luck .

1step I hope the hospital visit goes well this time around. Perhaps as he has done it before things will go more smoothly.

Hellish Monday with DS1 and school. Started feeling better (and less hopeless) once told increased support would be in place. He will be meeting with a social worker weekly at his school. Just as I gave myself permission to feel some contentment as things were improving, I receive a phone call from one of his teachers that he stole the teacher's usb stick and threw it away. . Back to feeling hopeless. We have evidence that he has done this at home as well, when he is angry at one of us.
We will have to speak with him tonight and I am dreading it with DH. Gosh, he breaks my heart with his actions.

I just wrote a long post and my phone ate it!

To summarise - thank you all so much for all your kind words and support. Sounds like start term has been hard all round.

DD1 is 13 tomorrow! Here is a cake me and DD2 made her (although DD2 has lots of tantrums in the process - she’s 11!)

I’ll rewrite the whole post tomorrow

Thanks again

bigbus is 6 a ref to the musical?(dd2and lil zoo are big fans)
One-step you are a constant source of experience and information
Viking I often get these peaks and troughs of things are settling,no they aren't ...it's hard.sendi g huge hugs and support for the discussion with D's and DH

We had lil zoo trial for a ballet class today.D's loves his long hair and likes it being played with so I got to practise ballet buns on him in the day!we did a walk over nature reserve and talked lots about the route to class(45 min walk away)and what was expected.asa church hall he took phone and utilised the Pokémon gym
Lil zoo had a glorious time and declared was happy not to try the other closer to home(but less professional at responding promptly to emails)one as it would mean missing the class next week and she started on first day back of term
The church is near a huge park that is a local attraction(once a stately home now a museum)thereis an avairy section and bowling/tennis courts boating lake and two lakes with ducks.it offers us a chance on light warm days to utilise this whilst lil zoo dances(and Theres a cosy foyer there for winter/wet days)
It's first time we have committed to a after-school activity that we know will involve walking in the darksoonas D's is very scared being out after dark,but we cannot stop the girls living- he's not going to revert back and we all need to be allowed to move forward(with sensitivity obvs)

Her enthusiasm and excitement have given me a boost and I'm back to managing today,not grieving for what's changed/stagnated

Happy Birthday to DD1 Big. The cake is brilliant. I would have had a tantrum trying to ice it too - anything beyond basic icing surpasses my capabilities.

Viking, yes to the increased support. I hope you can get to the bottom of why DS1 is stealing others' possessions and help him find another way to communicate his feelings. I agree with some DC being more intense than others. DSs have had the same upbringing but DS1 is much more intense in nearly every way. Most of the time if DS2 was more laid back he would be horizontal - which brings its own problems. DS3 is somewhere in between, but is a perfectionist and can be a stress head. All are harder work than DD1 and 2 were when they were their age. Hospital admissions/appointments/scans aren't a new thing for DS so I fear the admission for a scan will be just as stressful. We were trying to help him cope with a scan without needing a GA.

Thanks Zoo it's trial and error and asking for advice from others both on here and in RL. Some things work, others don't, and it is completely child and family dependent. I am glad ballet went smoothly, and that there are things close by to keep DS occupied during the lessons. Maybe you could practice the route several during day light (perhaps during the day when it should be quieter) so that DS knows it inside out before having to travel it in the dark.

Hello all, I hope the weekend was okay.

Zoo the cake is SiX the Musical! The girls are pretty obsessed with it at the moment. It seems to be having a positive effect on her mental health.

This weekend has been exhausting but positive I think. We had a big birthday meal at a restaurant we’ve been going to for years on Friday with lots of friends and family. DD1 has requested this and managed really well - progress from last December when she wasn’t able to come in to the restaurant for DS’ birthday and DH had to take her home. That was a terrible day. This weekend she had 11 friends to a bowling party (and ate actual food while we were out) then had 5 girls for a sleepover. She did get upset at one point when they had all eaten loads and kept saying they felt sick, but generally she managed it. This was all completely unimaginable 10 months ago.

One of the girls who came to the sleepover has a diagnosis of ASD so I’m going to meet up with her mum for a coffee sometime. This girl is very different from DD1 in presentation though. DD1 has developed some more obsessional traits now - like having to spray body spray in a certain way or else it won’t work, or having to brush her teeth about 60 times. These are new things. Apparently she spends all break time in the toilet area doing various things with body spray/hand gel etc or else she will be disgusting. We are waiting to hear about a psychology assessment.

Anyway, the thing have I to be really careful of is not running before we can walk. I’ve been here before and got carried away thinking things are better and then it all goes to shit again! So I will grateful for a good weekend but not complacent.

Viking I hope you can get the support you need to find out what’s going on for DS. It’s sounds like a really difficult situation

Zoo well done with the ballet. I think it really helped me when I came to terms with this being long term and got on with other things instead of putting things on hold until this was ‘fixed’

1step that’s a really good point about diagnosis opening up other support avenues and legal requirements. I hadn’t thought of that. I think we’ll go ahead with the assessment.

Thanks again to everyone for the support x

bigbus that's AMAZINGweekends like these should be stored in your mind and held on tightly to for the days that are not so straight forward.im so pleased for you all.deffo sounds like DD anxieties are still causing her a lot of issues,(dare I say OCD type)but if she holding it together fair play to her!
Dd2 loves six (and Hamilton/groundhog Day/pretty woman) makes nice change from the rap that often is her go to

Hi. Im new here and came to mumsnet specifically to help my boy. He's 8 and has anxiety but on top of that I'm trying to find more information on an anxiety behaviour he has thats affecting his friendships and other aspects of his life.

When he does something with one hand or one side of his body, he feels the need to mirror that action with the other side. He says if he doesnt do that then he feels like something bad will happen to him or his family. Its all he focuses on, if he doesnt do this ritual he worries so much he doesnt pay any attention to anything else going on. He says that its tiring.

I am going to take him to the GP and see if I can get a referall to a child psychologist but i'm not sure if thats the correct route. This might also have a name that i'm not aware of etc!

Just looking for anyone else thats been through similar. I need to help out my little dude so he can be happy :)

Big, your weekend sounds brilliant but exhausting. DD1's anxiety is clearly high, but she has come along way.

People with ASD can show signs of obsessions as part of their ASD without it meeting the OCD threshold, although OCD can be co-morbid in others.

Zoo, there are positives to be recognised. DS went, which previously wouldn't have happened. He should be commended for that. DS recognised his sisters' feelings and tried to help. Maybe discussing with him (and separately DD2 and youngest) that spiders make DD2 and youngest anxious like noise and crowds make him anxious, and that is why DD2/youngest reacted as they did, just as he gets upset when stressed. I would also be telling DD2 that a thank you wouldn't have gone amiss because DS tried to help. DS also communicated afterwards that he was anxious - that alone is brilliant.

Don't either of you be disheartened if the next few days are difficult. We often pay for a few positive days. Hence my name. It's as if DS has used all his emotional resources and regresses as he needs time to recharge.

Buf, has DS always had the movement issues or is it something new? There is a medical condition where one side of the body involuntarily mirrors the other. Though it wouldn't be that if he is consciously deciding to move. Could it be stimming? Not quite what you described but it is difficult from a description, and one of the reasons people stim can be anxiety. It would be helpful to get a video of the movements for the GP. If he met the threshold, for anxiety it would be a CAMHS referral. If the GP thinks there's a chance the movements could be caused by a physical problem then they'll refer to a paediatrician first for investigation.

I am feeling down and exhausted, but frustratingly cannot sleep. I have all the things I need to do and whether they are the right things to do playing on my mind.

Can I join? My son has been in school refusal since year 8. Hes in year 11 and slowly over the years hes just faded away. Siblings are in sen schools but he passed his asos.

OT said she would refer to camus again and write a strong report. I'm.still waiting. His attendance was 60% last year so I just hoping he copes with his gcses

legoandloldolls welcome.how is D's managing this term?do you get support from school/other sources?and what about you- how are you coping with it all?

Bugger welcome.I would deffo go gp,and like one-step says using phone to record the behaviour would be useful obsessional behaviour with rituals isn't uncommmonin highly anxious children.but being highly anxious is always worth investigating as I've learnt the hard way moving up to secondary/puberty can cause an anxiou child I thought was coping to completely go to pieces.in hindsight I wish I had stepped in earlier

One-step thank you.i did explain to D's what happened with the spider was mostly down to misunderstanding and dd2 did make peace with him, acknowledge he was try to help even if his method wasntbrst appreciated!
He was very quiet and stressed after dinner.i know he ruminates the whole day then so took an opportunity to ask him to complete a task for me.i reminded him of the gardens and scarecrows we saw using very vivid enthusiastic language and asked him to push 3 thoughts into his overthinking-
*Remember the gardens and the colours of flowers,smell of roses etc and how much we enjoyed that
*Remember the scarecrows we liked best and why
*Remember how proud we all were of him for going and that no one is mad at him

He looked at me sadly and said I'm mad at me.isaidwhy? Because I sad I didn't want to go back and get cactus plants(super cheap but money was in the car) nor pop garden centre on way home (treat for going,he loves plant's and fish there) and now it's too late to get more cacti and I was too scared to go and as everyone was mad at me I just wanted to go home...
I gave him a big hug and reassured him and pushed the reminders he said but it's so hard to which I added and that's why they are extra important
He didnt settle to his usual evening routine very well and I have a feeling next few days maybe challenging,add in camhs is at wellbeing cafe tomorrow and I have TAF on wednesday

Lego, has DS got an EHCP? If not you should apply, and also chase the CAMHS referral. There's clearly something even if it's not ASD.

Zoo, good luck today.

I don't think people realise the extra work involved when you have DC with additional needs. I have a to do list for today:

• Finish making notes for meeting with special school.
• Reply to the secondary schools' SENCOs who answered my emails about what support they could provide, and if they could meet DS1&3' EHCPs.
• Answer DS2&3' current SENCO about specific support needed on residential trip.
• Put away the shopping delivery.
• Organise dosette boxes for coming week
• Order medication
• Unload the dishwasher
• Do 2 loads of washing
• Organise 2 appointments
• Post letter
• Chase social worker to clarify if DS1s' respite provider is still OK to take DS1 after a problem on his last overnight stay.
• The LA tutor is here and play therapist coming later.
• Take DS1 to rebound therapy

Your life is very full on one-step

I'm stuck here feet up as I've managed get infection in my foot after a simple schoolboy error gardening in flipflops
Trip docs today after hobbling on hot swollen foot yesterday I now have antibiotics and orders to rest
DS is as close as poss to be without be on my lap.he gets very anxious when I'm unwell/out of sorts.
I need a nap really,but I doubt he will accept that as keeps wanting reassurance I'm ok....

Oh no Zoo, hopefully the ABs start working quickly. DS1 gets anxious when I'm ill/down too, can feel overbearing at times.

Life is busy, it would be easier DS1 was in school. An EOTAS package isn't feasible long term as it relies on me facilitating it. Realistically I can't take him to therapies or be tied to being in when therapists/tutors are here everyday - but it's better than nothing in the short term.

Sorry everyone is tired and struggling at the moment.

Just popping in to say that the following book is very helpful for newly diagnosed : I am an Aspie Girl: A book for young girls with autism spectrum conditions www.amazon.co.uk/dp/184905634X/ref=cm_sw_r_cp_apa_i_i9-FDbXBJ78X1

Anne is DD enjoying the book? I'm really happy to hear how she seems to have turned a corner since the diagnosis. Well done to you both!

Welcome lego and buf [waves] .

Zoo oh you poor dear. That infection sounds so painful. Hopefully DS' anxiety has started to settle after a busy weekend. He did so well!! Gold stars for effort! And if he struggles due to busy week, it's understandable x.

1step I'm sorry to hear you're feeling down. Very easy to let happen when there is so much on your plate. I hope you've been able to get some sleep.

Start of school has -frankly- been a disaster for DS1. I think not a day has gone by without a situation. Had a support meeting with his school team this afternoon, present myself at the office, and first student I see is DS in principal's office. Cut story short, he's been handed 1 day suspension for slapping classmate on neck.
Support meeting ended up being about said incident. Social worker will try to find a behavioural therapist. Principal was kind, said the slap, while unacceptable, was not unprovoked. But now DS has it in his head that whenever he feels someone is unfair like his classmate intentionally upsetting him, that he should retaliate. We talked to him about it on weekend but doesn't seem we did a good job .
Exhausting to be honest - I broke down during meeting. Not having too many good days lately.

Vikingthat sounds very very hard lovely.glad the principal was kind(that makes such a difference) hope help with his behaviour comes quickly for yoi

Zoo Thank you xx

I still felt dreadful today,so arranged D's to go with O.T down to wellbeing for appointment
She was late and arrived in her car,after initial freakout out at get in he went with her
She said afterwards he had couple meltdowns but quickly passed with little distraction techniques.he declared he doesn't feel safe with her,but established he's talking originally not physically which is to be expected when she challenges him and way he thinks.she also noted he has either hi or no anxiety ratings which us apparently common with ASD rather than gradings ..
She was pleased I'd been unable to attend as it had been a huge step forward for him
I said I'd try and remember that later when I was feeling tired and unwell!!

Hi bit desperate and not sure what to do. I have a bright gay ds with anxiety and low self esteem initially caused by bullying.Now in GCSE year and grades have plummeted. He has cut himself off from friends and isn’t doing revision. Gets homework done though. School councillor apparently full and school not that supportive. He is very low.

m1ntyfresh welcome
If you are in the u.k your port of call is your g.p who can refer to CAMHS
Elsewhere I'd still pick that route as doctors can help signpost to appropriate services
Schools response is very disappointing,and tbh if be inclined to complain, especially given he's bright and grades are slipping as this is obvious indicator he's not engaging in his education as well as he was.
How is he managing outside of school?what does he do with his free time etc?

He does nothing as he has cut himself off from all his friends. Just sent 3 emails to his supposedly outstanding school. Feeling v let down. Dh ringing gp this morning. Thanks so much, just going into work. Will check back in later.