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

Oh dear @SamW98 that's unfortunate. If you Google SENDIASS for your area perhaps you could contact them and see if they can point you in the right direction?

I've only got experience of our area so it may be different elsewhere. No wonder you feel like your are banging your head against a brick wall. Hopefully someone with more knowledge than me will be along shortly to help.

There's also lots of helpful information on the IPSEA website including what local authorities should do to help.

MuddlingThroughWithoutAClue when DD received her diagnosis it came with mixed feelings. Firstly shock and as we read and understood more about ASD it helped us to understand DD. - No magic wands I'm afraid just a barrel load of patience

Hope all goes well later @alwaysscared

Good luck with your DS's assessment @Alwaysscared. I hope it goes well. I would hope they would be used to 'masking' and will have ways of seeing the true picture.

@SamW98 I hope you will be able to explain your sons issues at the school meeting and they might be more helpful and understanding. I really do feel for him - poor boy. And for you trying to navigate systems that i'm sure are made deliberately difficult.

@Muddling yes the demand for help must be huge at the moment. Is there any website for families of children with mental health issues? A helpLine or chat website? Services are so variable across the country. It really is difficult to know where to turn to when often something shocking happens or you come to a gradual realisation that this is a serious issue that you're having to deal with.

@DonutQueen I'm so sorry you're in such a difficult situation. It sounds as though you are trying your absolute best and you desperately need some support.
Your home should be a place of refuge, not somewhere to escape from. Even if your DH is autistic this is not an excuse for hating his children. Is there any possibility of him moving out temporarily, just to give you all a bit of a breather?

@sandwiches77 I think we are a long way from getting a diagnosis (or not) if rumours about the waiting list are true and I have no idea if DD2 has ASD or not as it's come as rather a surprise in the last year that it's a possibility!

The restricted life she is living now with no real social connections and a complete inability to deal with more than one interaction outside the immediate family in a day is so far from how things used to be that I would struggle to explain to people we knew a few years ago. I could also do without being silently judged. People don't know what it's like trying to cope when your child is mentally ill and unable to go to school (well lots of us in here do) but in real life people have opinions on how they wound do it better.

There are @Fferny1 and in fact DD's school signposts to several charities on their website.

I have previously contacted the Young Minds support line and they booked me a phone call with a health professional who talked things through and gave me advice. I had originally phoned to ask what I should expect DD's school to be doing to help. (I have notepads all over the house with contact details and information I've jotted down during calls with people over the last year which desperately need collating).

DH and I participated in a 2 session Zoom support group at the start of this year for the parents of children with poor mental health which was run by our local carers hub and flagged up by school. It was interesting but as all the DC had very different issues, we didn't find anything out to help our situation specifically.

DD2 has now been allocated a CAMHS care coordinator/therapist who she will see weekly and some of the sessions will just be with me and DH helping us with how best to support DD2 which I am very pleased about.

Donut, welcome, have you had a carer's assessment? And assessments from the disabled children's team for DS and DD? Does DD have any other markers for ASD? A DB (and potentially DF) with ASD makes her higher risk. For girls the wheels typically for off during teenage years as social demands increase, masking becomes harder and their anxiety escalates. Push the school to reconsider dropping history. If it is causing so much anxiety they are being unreasonable, and they risk school refusal if they take a hard line approach.

Sam, challenge the unauthorised absences and don't deregister DS. You need to stress to DS the importance of better not honest. When DS was in Y11 the LA had a statutory duty to provide alternative education if he couldn't attend school. Unfortunately, that doesn't apply post 16. Push for a referral to CAMHS and think about applying for an EHCP. Write to the director of children's services (you can find their details here) - IPSEA have a model letter you can use. Essex's SEN pages are here. I would caution against SENDIASS, some are helpful, many aren't and they are not completely independent as they receive LA funding so will ultimately toe the party line. IPSEA and SOSSEN are better.

Welcome sandwiches, does DD have an EHCP? If not you should apply.

Fferny some types of ADHD meds can increase anxiety in some people. IPSEA and SOSSEN are excellent resources for SEND help - the SN section on MN has some knowledgeable posters too. As well as Young Minds parents helpline Scope has a mentoring service. In normal years reasonable adjustments e.g. extra time, rest breaks, separate invigilation can be made for exams (subject to meeting the criteria, of course), but special consideration is only given for events around the time of exams, for example an exacerbation of a chronic condition. So no, a pupil cannot only be tested on work learnt, not missed.

Always good luck, the assessors will be experienced in recognising masking. Diagnostic tests such as ADOS are designed to tease out certain behaviours, and you'll be surprised what is noticed.

Muddling people have opinions on how they would do it better. Oh yes!

Runner would DD have indirect therapy e.g. art/music/equine? The therapy burden is often lower. A TAF is a Team Around the Family, an intervention aimed at ensuring families have all the support and agencies involved that they need and bringing professionals together.

Good to see you Anne. I haven't been on the course, but have heard some of the course material from someone who did. From what they said I'm not sure you will learn much - it's not about stopping DC self harming, but about how to manage it and family life more effectively.

TAF sounds really positive Zoo, although I'm not sure giving up your bedroom will say love matters - a) you then don't have any personal space, and b) the focus will probably shift to another demand. Is there a way to divide their room, even if it's just with furniture? Or could the rooms remain as they are but DD3 can retreat to your room during the day when she needs a quiet space? Alternatively, as part of the TAF housing can be invited to try to get you a bigger property. Runner's idea of timetabling 1:1 time is a good idea. Have you had a carer's assessment and DS an assessment by the disabled children's team? If you had some respite meeting individual needs would be easier.

Anyone who doesn't receive DLA or PIP should apply.

DS1 has been ill and in hospital the last few days, he's home now on treatment. He has regular admissions for a medical condition but this one was hard work.

Had the assessment. Won't have any answers for a couple of months! Is that normal??

Thanks 1leap that is what I thought.
We are past another deadline date with our appeal process. LA should have sent information back to us by 8th Oct and they haven't. Sigh.

Edc clinic don't feel they can do too much more for DDs arfid. They think trauma is at the route if everything.

alwaysyep,a wait now is normal
Leap I'm growing more and more resistant to giving up my space as yesterday D's was a nightmare of repeat forget simple stuff,getting frustrated and cross and his OCD I love you and expect response was in overdrive.dd2 has another friend down with covid,hitching health anxiety to max and again is maintaining negative my illness is the worst when she's doing much better than last year which is exhausting.then lil zoo kicked off,having wanted me listen play keyboard and watch a fave show she went hyper at teatime and refused sit and eat standing/messing around and being extra loudd and silly,which upset D's.she remained hyper til I fell asleep at 10.dd2 said lil zoo has assessment worried about todayso expecting poss refusal to go in this morning.again...latest complaints incl wanting to bind breastsim sorry your D's been poorly again.do you get any time out?
Muddlingothers judgement gets my goat.walk in my shoes before thinking you can do better!living with something that grinds you down 24/7 is very different to analytics of where we are "going wrong".grrrrr
Anne ed team here waste of space tbh.lil zoo ate lot junk food at dd1and I'm confident will drop loads again now home as become extra picky and doesn't get driven everywhere anymore now home.thwy eager ditch her despite no work to change behaviours.still won't use loo anywhere ele so restricts food/fluids.now has a friend but she don't eat breakfast and when dd2 saw them at lunch other day declared don't need to eat triggering lil zoo eat half bag crisps as lunch

Yes,I know it's 4am,insomnia back with vengeance.seems 10-2 is my sleep pattern now.permanently wrecked..
Sending strength to all for the day ahead

Perfectly normal is some areas, Always.

Anne trauma has a lot to answer for! It is the most difficult part of DS1's MH needs because it is so pervasive and affects every other aspect of his MH needs. Has DD ever seen a trauma specialist? I find you have to jump through CAMHS hoops to get further support, so I wouldn't turn the course down.

Zoo I hope you managed to get DD3 into school this morning. How is DS getting on?

I haven't had time to myself for a while. Last weekend DS1 was supposed to go to respite overnight, but because he was in hospital we now lose the overnight. When he's in hospital I can't leave him alone and he isn't allowed of of his cubicle for medical reasons. Normally someone will sit with him whilst I get a shower etc. but it is dependent on how busy they are, and this admission they were very busy and short staffed.

Hello. This is such a lovely compassionate thread. And I’m sorry that things are so very hard for the people on it.

Can I join? My 11 year old DD is in year 7. She started having attendance issues in year 5 after a big friendship incident but nothing huge. Then the pandemic happened and she spent the first lockdown on her own in her room on her phone - it was virtually impossible to get her to do any of the online learning provided. Then she started refusing to go to school all the time and ended up with about 20% attendance in year 6, most of which was at the start of the school year. So she hadn’t been to school for a long time when September came around. She was excited about starting secondary and her best friend is in her new class. She did 2 days and then hasn’t been in since apart from a couple of times when she went in to the SEN office. The school have got a bit of a plan in place but it all depends on me managing to get her to the gate.

Her mental health has really deteriorated. She doesn’t have a formal diagnosis of anything but I’m pretty sure it’s social anxiety and depression. She pretty much won’t leave the house. She won’t get dressed, wash her hair or brush her teeth, or come downstairs to eat. She gets stomach ache, headaches and brief loss of vision, all of which I think is down to anxiety. She refuses to go to sleep so is often in bed hours later than we want (we aim for 9).

After some bad experiences I found a fantastic clinical psychologist who we see privately. I say ‘we’ but my DD has never been. I’m trying to talk to her about the way her anxiety is stopping her doing what she wants and we have an exposure ladder, but we’re struggling even with the bottom rung. We have a lovely sweet shop round the corner and today she said she really really wanted to go but she can’t (I say ‘you think you can’t yet’) so I said how about getting dressed and standing in the back garden? And she said she couldn’t.

Meanwhile we have all the pressure from the local authority about her non-attendance and even though the education welfare officer is very good, she has basically said that getting her to the gate is something that I have to do. It’s so utterly exhausting - I just don’t know what to do next.

Thanks for the support on this this. I have an update after our annual review today. School say they cannot meet need (in the nicest possible way, as ds won't attend) and the LA actually agreed to a special ASD school in section I of the ehcp. We are so pleased. Now we just need to see what comes out of the consultation between the LA and the school we want. Feeling like we're moving in the tight direction now. Ds still at home, and he just popped downstairs to borrow the vacuum cleaner to do his room, so there is a glimmer of hope for him!!

Welcome Canteloupe. Has a referral CAMHS been made? If not, ask the GP for one.

If DD cannot attend school the LA have a statutory duty to provide education for her - depending on her needs this could be home tutoring, online, hospital school. Separately to this you should apply for an EHCP - IPSEA have a model letter you can use. Regardless of what the school, LA or EWO tell you you will not be fined. Don't worry!

Sleep clinics recommend a regular bedtime and wake time even if there has been little sleep during the night. Going to sleep late and waking late doesn't help, and gets you into a vicious circle.

Would DD take a vitamin D supplement?

If you aren't getting on to the bottom rung of the exposure ladder it is too much and you need to break tasks down further. Also, sometimes DC need pushing because they cannot rationalise something being in their best interest. You need to learn when to push and when to stop because continuing is harmful. You'll learn the signs in DD. For example, given the choice DS1 would never bathe, eat, leave the house but that isn't in his best interest so they are non negotiable.

X post, I should refresh if I pause typing in the middle of a post. Brilliant news Mackencheese.

Hi all - I have been reading for a few days, but not posting - energy is low! Solidarity for all on this roller coaster...

We have also had ups and downs. DD15 is still on a very low dose of fluoxetine, but nearly 3 weeks in I think I can see a small improvement in that she is less 'bored', and has actually engaged in some very low stress activities like colouring in. It's lovely to see her doing something less passive. She has definitely had a bit of a mood dip for 3-4 days each time the dosage of the meds has been upped (it's being done very very slowly and carefully as she is deemed to be at such high risk of further suicide attempts).

The new battle is with CAMHS, who are desperate to offload us onto a different health authority, due to complex (and outing) stuff about where we officially live and where we are staying temporarily. They wanted us to register DD with a different GP, which would have meant that any chance of getting an EHCP from the LA where she is still registered would have disappeared. The risk of her being left languishing on multiple waiting lists would also have been huge, leaving us unable to access support when we have already waiting far too long to get some. Anyway, I stood my ground reasonably politely, and I think we are staying with the right team.

One other small win - I got DD a 'glow dreaming' light (not cheap, but has a 30 day money back guarantee), and it has definitely had an impact on her sleep. She is up to a fairly consistent 6 hours, which is a massive improvement.

@Bubbles has your dd tried Melatonin tablets? DS's Psych.prescribed them to help him sleep and they really do help. Plus they're non addictive and habit forming.

I totally get what you mean about the rollercoaster ride. DS declared he was feeling much better a few days ago. But that was promptly followed by several days of feeling bad. He said he'd had half a day of happiness...

He's now had his hair coloured today - so he has left the house and has actually sat downstairs with me this evening. Small miracles 🙂

These are the little things that keep us going as parents. In the belief that things will/must get better.

Thanks @1jumpforward2back yes DD does have a CAMHS referral though no idea how long that will take or if she would attend. She also has a virtual school referral, but no EHCP - I’ll look into that.

She did get onto the first rung of the ladder last night - going out for a walk with the dog in the dark. She insisted on wearing a hood and mask but still did it. Today she said she was too worn out from doing that to try again.

She won’t take vitamin D but I will work on that. I’ve started getting her to sit in front of a SAD lamp in the morning and I’ve ordered one of the glow dreaming lights that @Bubbleswithsqueak mentioned so fingers crossed that establishing a good sleep pattern will help.

On the topic of DCs not knowing what’s best for themselves I totally agree but I don’t know how to make basic self care etc non-negotiable when she just flatly refuses. I can’t force her to do stuff and incentives/withholding laptop etc doesn’t seem to work - any ideas much appreciated.

Hi cantaloupe- it just takes time. But you can be tougher on what you consider the non negotiables. For a while my dd didn't shower but she was so depressed that nothing would have made her do it. I just started gradually mentioning the smell in her room or asking when her clothes were last washed and let her work it out. She is by nature a clean freak so is now showering every other day.

1leap - dd couldn't face emdr when it came up for us a few months ago. Canhs took her off the list but have now out her back on and said she needs to speak to the therapist because if she can't do that they may have an alternative idea.
Edc are trying to step out of care as they are saying dd now has put on a tiny bit of weight and we may have to accept that with Arfid this is just how dd is.
Need to write to tribunal this weekend as LA have missed the deadline to submit their evidence.

@Canteloupe welcome to this thread.
The Sad lamp sounds a brilliant idea. I will try that with mine as he's looking very pale these days. Have you tried the chewable gummie vitamins? DS likes these here. Does your DD have a family member she will listen to? DS here listened to dd1 (22) about needing to shower every day, as she's very good with him.
I'm glad your DD went out for a dog walk.Its a start. I sometimes felt it was like living with a ghost when Ds was at his most depressed as he wouldn't talk or look at anyone, or do anything, apart from eat & go on the computer.

Fferny - yes - DD is on 5mg melatonin at the moment. She has it crushed to help with getting to sleep initially, but the lamp has definitely helped quality of sleep, getting back to sleep if she wakes, and delaying her morning wake up. She is in a routine of 3am - 9am at the moment, but I'll take consistency over a 'normal' sleep routine!!

Anne - something popped up on my FB today about Tetris EMDR therapy - sounds absolutely crackers, but a quick google produced proper research papers showing that it is more effective than EMDR alone! I wonder whether it might appeal more to DC...

I love hearing people's small wins - I feel daft sharing DD's with people other than DH, because they don't get the significance. DD asked to order a craft material today - I am absolutely delighted because to me it means that she is anticipating getting enjoyment from something. And just a few weeks ago it felt impossible that she might ever enjoy anything ever again.

Bubbles where are you in the EHCP process? Fully appreciate you don't want to out yourself but be aware it is the LA you are permanently resident in with responsiblity for DD, it has nothing to do with what GP you are registered with even if they are out of area. However, there are exceptions to the timescales if you or DD are absent from the LA for a continuous period of 4 weeks.

Anne ask for a referral to a specialist trauma service, not just EMDR. The LA will need to seek permission to have their evidence included. If the EDC can't help they should refer on, there is help with ARFID. At the extreme end enteral feeding may help - there's a MN'er whose DS has enteral feeds for ARFID.

Fferny there are 2 schools of thought. Some believe you can take melatonin all the time and don't build tolerance. Others think you need breaks to ensure it is still required and establish if you are a poor metaboliser of melatonin who needs regular breaks for it to remain effective and get peaks. What you are told by HCPs depends on your area's view.

Cantaloupe how long have you been waiting for medical needs tuition? If it's been a while threaten Judicial Review.

Agree with Anne about small steps for non negotiables. A walk with the dog as the first rung is too big. Break it down to being in the garden, in the garden with the dog, to the end of the drive, end of the street with the dog... A smaller task daily/every other day is better than one big task followed by days of exhaustion. The boom and bust cycle hinders progress. Have a read about pacing and spoon theory.

One of our non negotiables is eating. DS's have a medical condition requiring a high calorie/fat/protein diet. DS1&3 also have overnight enteral feeds and have EDNOS. In response we use the magic plate method, commonly used in AN but can be useful for others too. We provide their food (3 meals and 3 snacks) and they eat, or not. No bargaining, negotiating, swapping etc., although we don't serve anything they genuinely don't like. Ignore unwanted behaviour, praise the behaviour we want whilst discussing something unrelated. Even if they don't eat they have to remain at the table. Plates are removed after 30 mins for meals/20 for snacks. If they don't eat longer term they know it will mean a hospital admission, and for DS1&3 for more calories to come from overnight feeds.

If DD won't take supplements, including gummies (check they have enough vitD, many don't have enough to treat deficiencies), I would either bribe her or add drops to something she eats/drinks, she is likely deficient and it won't be helping. The SAD lamp didn't help DS1, neither did the dreampad pillow.

bubbles we love a small win here as we know the importance of it!hope the craft activity goes well.

That's interesting regarding the Melatonin @Leapforward. I will have to read up on it. I know Ds is not taking it every night though as I leave one next to his bed for him if he needs it.

@Bubbles Ds is on a similar 5am-1pm sleeping routine. Though i wake him for the ADHD medication at 11 ish & he goes back to sleep. He says he feels happier at night 🤷🏼.
I do hope your DD gains some pleasure from the crafting kit. And thank you for the helpline contacts you posted a few days ago for parents... needing help.