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

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

Thanks for the new thread Zoo.

Link to the previous thread.

Nice link work, @1hopforward2back

dd had first CAMHS appointment today. CAMHS worker is amazing, very skilled. Explained CBT and DBT in a nutshell.

Poor dd was completely overwhelmed by all the information. But is open (thankfully) to giving it a go. Fingers crossed they develop a rapport.. I thought the CAMHS worker gave way to much info in her overview of therapy but she is amazing so here’s hoping...

Also on another positive note dd woke in positive spirits and with colour in her cheeks for the first time in weeks.

A good day!

dd also said she feels awful in the winter, we discussed vitamin D levels and mood and we ended up buying vitamin D drops!

Thanks for the new thread Zoo

How did the visit go Zoo?

Latent, I'm glad the CAMHS appointment went well.

1hop we saw two rooms.one had art with year 9s,other had 3eating pancakes they'd made.staff ratio 2 to 6 kids.asd/ADHD or a mix of the two.maths,science,ICT,English in am.fun activities pm when less willing/able.was told he is working to much higher levels than most there academically.
I've nothing to compare it against as D's been out of school a year so any setting with kids in freaks him.
To be fair we saw them during less academic activities.with ASD/ADHD had we seen maths etc would it have been noisier/more chaotic?to be honest they all were happy,interacting with each other and staff really well
I am now completely freaking what to do..would we be looking at a setting than can meet his academic needs/if not will one that can be able to offer a setting as nuturing??
He was complete superstar on trip down.armed with fave soft toy,paper and pen to note things he found interestingand cats clean pillow that's super soft and fluffy rubbing at his face
He was quiet and retreated inwards once inside building.idea of looking in class,going in felt comfortable freaked him dreadfully and whilst head went to see how many there were in classes we would look at he had a wibble and there were tears.he looked in first door and was totally overwhelmed,refuse look in second and was agitated and withdrawn.he cannot verbalise how he feels about it.considering first time in school setting over a year I was very very proud of him.he was extra anxious last night and but clingy today following me around asking what are we doing next a lot
Attempting to get in touch esmh local school so I have some comparison.i need send ECHP back tom....

On the whole that sounds like a successful visit. DS did well.

Yes, the group that school belongs to doesn't suit academically able, or even average, pupils e.g. don't offer a range of GCSEs. Some of their schools have high levels of behavioural needs too, though not all. There's a lot to be said for calm, happy and engaged DC.

There are SS that cater to higher academic ability, but they aren't as wide spread. Some of the SEMH schools I PM'ed offer more GCSEs and some A levels. Also, some of the indie or NMSS specialist ASD schools may take DS if you are just waiting to finalise diagnosis, so do enquire. If they will, some of the ones I PM'ed you can meet academic needs/ offer range of GCSEs. I will PM you another idea I have thought of too.

Some schools will provide access to more qualifications than they normally offer on an individual basis.

I think there's a balance to be had between meeting MH, social and academic needs. For the right school we would compromise on academic needs, as long as it had a social peer group, because it's no good being able if you can't cope in everyday life and having DS in a school is best for him. Unfortunately, we haven't found one that can meet his needs. DS would be less willing to compromise, he would disappointed in a school that could not stretch him academically - particularly in maths, science, history. And he would make that known .

Would the staff ratio be OK? Or would your DS need 1:1? If 1:1 will the school provide it if stated in EHCP/funded or not - some schools will not provide 1:1 full time or even the majority of the time?

Look at as many schools as possible.

Good luck this afternoon.

DS has had a brilliant morning with the tutor. He did a UKMT past paper and scored amazingly. It put a smile on his face, especially when the tutor said they would make him a certificate.

Aw onehop that lovely to hear
One of the pm schools looks great,but I've no way of getting there tomorrow.draft is due back thursday..

I keep popping onto this thread but there always seems so much to post about I don't know where to start. So I'm just going to start! I had a weekend of procrastination and still haven't started the EHCP process, avoided a piece of work that is unfinished, and avoided cleaning the bathroom too. I find weekends really hard - in fact any downtime actually. I struggle to relax but at the same time avoid stuff. So much so that I am applying for a weekend job in an area of work that I love, (in a completely different field to my actual job) and if I was younger I would have loved to have a career in. It's either a Saturday or Sunday, not both. So need to do my CV which I haven't done for years.

I have talked it over with DD and she is happy for me to go for it. So I will start the application tonight - fingers crossed for that. DD on the other hand is completely unmotivated/unable/unwilling (not sure which) to do any school work. Is sleeping late. And generally avoiding doing stuff because of her OCD (or maybe there's a family trait there).Though we did make it to the cinema last weekend which is a first in about ten years. Felt awful as we had booked aisle seats but the usher asked if we would mind if an elderly couple sat there instead and we sat at the far end of the row against a wall. I asked DD if she could cope with different seats, and she said she wasn't able to. So they moved, but didn't make eye contact. I bet they were thinking how selfish we were.

I have asked DD to apply for Universal Credit as I'll lose CB and council tax discount once she turns 18 if she's not in full time education. So we talk (rather I talk) about the benefits of education but she just say's she 'can't do it at the moment'. So I'm inclined to do what I can to encourage. Get the EHCP application in. And leave it to her.

So that's where I am. Just getting through the days. Hoping for calmer waters ahead - for us all.

ottolie it really doesn't matter what others think.no one knows your current situation and if no one shows kindness we would all be misunderstood

Ottilie, you are welcome to post as much or as little as you want and need. No one here will judge you. Sometimes getting it all out and writing it down helps on its own. Well done on the cinema visit. Your DD has additional needs just as much as an elderly couple with mobility difficulties. If they needed an aisle seat they should have booked one, or attended a different viewing if there wasn't one left.

We use a sunflower lanyard. Well I do, DS' won't wear one, so I wear it instead. Though it's obvious when you meet DS1 he has additional needs. We have used them in airports too.

Home tutor came with DS1's certificate. He is beaming and has stuck it up on the whiteboard in the kitchen. Little things make a huge difference. The home tutor told me that he's spoken to them more in the last 2 days than in the rest of the time they've been coming.

onehop lovely to hear DS1 so happy with his certificate

We were ment to go view outreach classroom yesterday but I cancelled as D's was highly stressed still from previous day's Look at esmh school which wasn't suitable/terrified him
I really need him in a good frame of mind on initial visit or any chance trying get him to go there,even one lesson a week just won't happen.he hasn't been in a school environment in over a year and to visit two in space of a few days was a big escalation .I realise sometimes you need to back up/slow down to go forwards
Dd2 had parents eve last night.didnt take D's or youngest as cram most teachers into canteen and library so it's like a cattle market of bodies.dd2 took tangle and stressball but struggled dreadfully as reflux increasing her anxiety so much(wasn't at school yesterday as meds are being adjusted to combat this and it's a case it gets worse before gets better)all teachers confident she's go pass GCSE.shock of the night was imedia teacher.shes been difficult previously but she was really nice to DD,offering extra options for possible catch ups and agreeing to move classmate nearer so when she's anxious she's not by herself.on reflection she was off best part 3months last year and I think that may have been stress related,so watch DD struggling has bought out a softer side.i was expecting to do battle(as I had to last time with unrealistic expectations) this time I was grateful and said so of adjustments she's related to make.stress of it all triggered massive panic attack for her once home.barely are then reflux flared.tired today as bad panic can go on up to two hours before she tames it down

Zoo, will the transition to the Outreach centre continue? Two transitions close together could be disastrous, and it won't be long before the EHCP is finalised - either agreeing to name the school you want or naming their choice (which I then assume you will appeal?).

I'm glad parents evening went well, and the school are supportive.

DS1 had a really difficult day yesterday. But you know the CAMHS nurse understands when they sit under your dining table because that's where DS was.

I have finished DS2's DLA renewal. Expecting to lose at least HRC, which is probably fair. I spoke to the GP about his immaturity and they agreed to get community paediatrics to see him again. I have also emailed school to ask about an EP assessment for him, I am expecting the answer to be no, but if you don't ask you never know, at which point we will look at private assessments.

Your camhs nurse sounds fab one hop on subject of camhs,I had a call at 5pm with cancellation initial assessment app available Monday 915 for dd2,luck would have it at our nearest place(we can walk there rather than hunt for a lift) I snapped it up as we had to wait til 19th march for otherside county as it stood.
Yes,plan is still get him to outreach,think aim is getting him into a school setting.there are never more than 5kids at a time there,so it's also a small setting.our initial visit will be after hours on Tuesday this week coming.think.hope is to work towards a lesson(50 minutes) ,twice a week there I think.like you say it's all coming a bit close together but when I query it OT gives me sideways glances and reiterates my anxiety shouldn't stop D's progress she really gets on my nerves if I'm honest

We have been lucky with CAMHS for DS1, they were initially slow but when we were referred on things improved. The specialist nurse is brilliant. CAMHS support for DS3 on the other hand is sparse.

That was quick for an appointment for DD2. I wonder whether OT thinks it's more about getting DS out of the house and spending time away from you than getting him settled in a placement there. Also, if you go back and forth asking for amendments to the EHCP it could be several weeks if you are trying to avoid tribunal.

Hi, this is my first time posting on these threads. I have a ds5 who's diagnosed ASD. I've noticed the last 18-24 months his anxiety over certain things slowly growing. My DH and I both have anxiety and I feel so guilty that we have either genetically or environmentally given it to him. On the one hand all I want to do is reassure him but then I've been told by therapists that reassurance makes anxiety perpetuate. But he's only 5, how can you not reassure him when he curls up in a ball and squeezes his hands over his face and whimpers 😭.

I do daily affirmations with him including "I am brave" as I know from experience it's no use someone else telling you "you can handle this", you've got to believe it yourself or its worthless. Other than that I can't think of anything age appropriate to help him build up his inner strength.

I keep thinking maybe he could grow out of it as he's so young still. I just feel so heartbroken that he has these fears/worry/phobia's when he already has the struggle of ASD. He has no idea that he has autism or anxiety as we don't use those words around him. I know this is totally rambling, I'm sorry. I've never discussed this with anyone bar my husband.

Welcome.

It is likely at least some of his anxiety is secondary to the ASD. Has he had a sensory OT assessment? Things like ear defenders and a weighted blanket may help reduce his anxiety so he can cope with every day events. Also, things like visual timetables, now and next boards and social stories should help.

What is his emotional literacy like? It's possible he struggles with being able to name what he is feeling. It is one thing rote learning what face goes with what emotion, but very different identifying which emotion you and others feel. Being able to verbalise his feelings will help you help him.

What support are school providing?

Knowing he has autism may help him understand his differences and difficulties.

Welcome nogodsnomasters
Onehop has excellent font of knowledge in all matters ASD,I can't think of anything else to add,except please don't beat yourself up with guilt
We are here to listen please feel free to pop in anytime even if it's just to offload

Thank you both for replying. He was diagnosed ASD 2 years ago so we have a lot of things already in place such as routine, ear defenders (definitely suffers from sensory issues). School do nothing at all because he doesn't struggle with the academic side of things and he has 1 solid friend so they let him muster on.

His fears and anxieties are about blood and accidents etc he faints at the sight of his own blood. He seems to have a very low pain threshold which I know is common in ASD (either a high or low one) so the slightest little bump or scrape he is so very upset and can't bare to look at grazes etc I go through an untold amount of plasters because as you can imagine 5 year old boys get plenty of scrapes! We're not even allowed to say the words blood or death/died around him, even certain discussions he'll ask us to stop as he's feeling frightened by it, for eg I was talking to my 13 year old neice about piercings last week and he asked us to please stop. If we're out walking the dog and there happens to be a few bits of broken glass, the rest of the walk is taken up with talks of how the dog might have stood on it and cut her paw and bleed and he would cry etc, it's like I can't get him off that train of thought.

Sorry I've went on so long, I'm sure you get the gist. Thanks again for replying.

School should still be helping, there is more than just academic progress to consider. For a start they should be helping with his sensory needs. Do you think DS is really coping at school, or is he masking and that is why home life is so difficult?

My DD1 died when my DS' were young. For a while afterwards they asked a lot of questions about death, their own and others mortality, whether there was afterlife etc. We were told between the age of 4 and 6 is when children first consider mortality and it is usually when they first understand someone close to them dying. They realise we are not indestructible and that people don't live forever. We were told whatever we do, do not lie. Be honest and use plain, direct language. DS2&3 mostly cope OK now, but DS1 still struggles. Was your DS' anxiety triggered by something in particular? Don't feel you have to give details, but if it was I can give you ideas of charities and books that can help.

Can DS explain why he finds injuries distressing? It sounds like seeing a Clinical Psychologist may help, or something like play therapy if he can't access direct therapy.

Thanks Zoo, my advice comes from experiences with DC, so some may help and some won't because they're all different.

Masters, if you haven't already please apply for DLA - the Cerebra guide is helpful. Zoo, if you didn't apply for carer's allowance you need to. If you did, I'm going to prod you, and anyone else eligible, into applying for a Family Fund grant next.

0ttilie, am I correct in thinking you are a single parent and your DD is nearly 18? If so, and there isn't another adult in your home, once your DD is 18 you will be eligible for a council tax discount for you as a carer - you don't have to claim carer's allowance to get the exemption.

Home life isn't difficult, just the anxiety is as I can feel it growing. It used to be difficult before diagnosis but now we really seem to have most of it managed, school even took him off his IEP this year because he has not displayed any behavioural issues since this school year compared to last year.

I am so sorry your DC died, that is awful and I'm sure it's been hard for your other children to comprehend and deal with. I don't feel like there was any trigger that started this, he's always fainted at the sight of blood since around the age of 2.5 but it seems the more he comprehends the things that can cause blood the more things he's anxious about.

Hi everyone
Lovely to see some new people, although obviously not lovely you need support.
I have a y8 asd dd primarily struggling with school, sensory and diet.
This week has been a challenge. I went into school and spoke to the majority of her teachers - some were really responsive and keen to understand. Dd asked for an emergency meeting with head of year to talk through lots of issues which did happen and was positive - she wants to move class to get away from the child there was the issue with last term so they are considering that.all very positive.
Next day a teacher (who didnt come to meeting) whose lessons she hasnt been in for 2 weeks suggests she will get homework not done stamp. Dd beside herself. I am not happy. She couldn't get in next day until break time. Head of year will be talking to this teacher and I think she was furious herself tbh. Big sigh.

Sorry Masters, difficult was shorthand for your DS' anxiety being high enough that he shuts down (curls up and whimpers), you avoid/stop conversations and having a fixed mindset.

Can DS explain why he finds blood/injuries etc. distressing? How do school deal with it?

A child with ASD should have an IEP, they are not just for behaviour. The school should be helping with some of the difficulties highlighted during diagnosis, which in order to be diagnosed must impair everyday functioning.

Anne, that sounds positive and frustrating in equal measure. Well done to DD for voicing her unhappiness.

DS1 finds high winds unsettling. I think it is the not knowing when the next gust is going to noisily pass by that he struggles with.

1hop ah yes I see what you mean, yes the anxiety is difficult to watch and manage. I'm in Northern Ireland so I'm sure there are some system differences but IEP's here are now only for children who struggle academically or who have behaviour issues that disrupt learning (either theirs or others) so since my son no longer fits that criteria this year they refused to make him a new one 🙄

I asked him a year ago why he was afraid of blood, his answer was that he thought all his blood would come out of his body through a cut/scratch, when I explained how it doesn't work that way he seemed to understand and no longer gives that answer but now just says "I don't know, it just scares me". I suppose with most phobia's because they're not rational, there is no real reason. Or maybe deep down it's loss of control? That's a common theme with phobia's regarding body.

onehop ds not impressed by unpredictability of the wind either
He had brick church this afternoon.i drop him off, leave an hour then pick up.was quieter due to weatherlady who looks after him said they did half hour then retreated to a quieter spot for a bit.curates son has ASD and he's taken a shine to D's and comes intermittently to sit with him/brings him pictures etc.ges only 7 or 8(ds14) but it's first social contact in such a long time.he kind of likes it that someone sees him as interesting but not sure what to say to him!