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

Been a busy week here getting DD1 ready for university and chasing things up for DD2.

DD2 is being supported to repeat Y11via EOTAS (medical needs) - everything is in place. Hoping it won't be scuppered by the LA as mentioned upthread by @1leapforward2back but mindful of the possibility.

Chased CAMHS (again) this week and got a call back. I am usually told that DD2 is on the waiting list for therapy still/nothing has changed but this time there was an actual conversation. Unbelievably I think CAMHS somehow "forgot" that DD2 is waiting for therapy! Because she is under a clinician and has been referred for ASD assessment, she seems to have been missed out for actual treatment. I was even asked what sort of therapy I thought she needs despite being told 9 months ago she had been referred for CBT and I have been chasing this regularly (by email and phone!) I hope a therapy appointment will now be forthcoming but will no doubt need to chase.

Where to start with the EHC Needs Assessment? To all of you who have had prolonged dealings with your LA's, I don't know how you cope. I am frustrated with my LA after only a brief amount of time. The LA use very clever wording in their communications to give the impression they are being thorough but when I re-read emails I realise they are doing very little and not trying to identify any additional needs whatsoever.

Initially they said they'd contacted a variety of educational and NHS health services to "request information on involvements they have had" with DD2. I emailed requesting they seek specific advice and information from a large list of professionals including SaLT & OT (including sensory). The LA confirmed again that they have requested information from these services (merely asking being have they had dealings with DD2). Sent another lengthy email quoting the law and requesting specific advice and information from these services under section (h) in relation to DD2's needs, outcomes and provision (SaLT has been suggested in a private report from a year ago and OT in a private EP report from a month ago coupled with ASD referral I believe this to be reasonable). Also asked who would be involved in (g) and for a social care assessment (e) - though not sure if this was necessary really.

Had a detailed reply back telling me yet again they have requested information and advise from lots of services who will provide information^ if^ they have had involvement with DD2. Email went on to say that LA are unable to make referrals to services such as OT and SaLT, or social care and if I'd like involvement I can ask for a referral from GP! They also state that they can not make referrals to independent services such as a clinical psychologist (which I had also requested). The only point that they have conceded is to request information and advice from DD2's consultant at CAMHS rather than just CAMHS. I heard from the LA EP service 2 weeks ago just requesting that we fill in a consent to share info form but nothing further.

I am angry and frustrated. I placed so much hope in this needs assessment which now feels like a farce with the LA simply relying on information we have provided and in some cases paid for. I accept that requesting a clinical psychology was perhaps a stretch but surely sensory OT and SaLT are reasonable? I will reply to say I'm not asking for a referral to OT and SaLT but that they seek specific advice and information about DD2's needs - surely "not known to this service" isn't good enough? I don't fancy my chances - I don't think they care.

On a happier note - we all took DD1 to university this week! It's the longest DD2 has been out of the house for nearly 2 years and the most time she's spent with us for that time also. She really wanted to go - her and DD1 are very close. She did really well and we are proud of her.

Have a good weekend all.

Hello Blueshingsea, what's going on with your DS?

Just popping on to say hope all goes well with the appointment today bubbles and a quick hello to everyone else (and welcome to scoreen and blue)

Welcome Blue.

Scoreen I would seek another ASD assessment from someone experienced in assessing girls. There is now more awareness of the differing presentation. If DD does have ASD CBT would need to be adapted by a therapist trained to deliver CBT to autistic patients, even then some can't access it. Does school have a homework club? Some ND pupils find it helps distinguish home and school.

Before starting it sertraline, I would want to know the rationale behind the GP's choice. The 1st line antidepressant should be fluoxetine. It is the only antidepressant where studies show the benefits outweigh the risks, and the only one licensed for use in children and young people for depression. Therefore whilst others, including sertraline, are used as 2nd and 3rd line treatments off license fluoxetine should always be tried first, unless contraindicated of course. This is why NICE guidelines state antidepressants should only be prescribed in consultation with a child and adolescent psychiatrist, and why most GPs can't prescribe. DS1 takes mirtazapine, but he tried fluoxetine and sertraline first.

There may be charities offering support depending on what relation the deaths were. Following DD1's death DS's have had support from a few organisations.

Zoo I'm sorry things are so difficult still. Would an alarm reminding you to drink help?

Runner is DD's primary need SEMH or ASD? Are there any NMSS?

Muddling it's a good job you chased CAMHS! I hope DD1 is settled and enjoying herself. I would be suspicious. As it isn't not legally required it is highly unusual for LAs to fund medical needs tuition post 16. I suspect they will refuse to issue and hope you won't appeal as DD is receiving tuition anyway, then pull the plug.

LA emails are always carefully worded. It is the same with vague and woolly EHCPs. Many don't realise until it's too late. For example, parents often think "x would benefit from 1:1" means 1:1 will be given, which isn't the case but the EHCP can't be enforced.

"Not known to this service" is a common response, especially from social care, however, it is not lawful as it does not cover a child's needs, provision or outcomes. They absolutely can get SALT, OT, social care advice, and you don't need an independent CP, the NHS has plenty. If in house advice can not be sought within the statutory timescales the LA must commission independent advice. Send IPSEA's model letter, then if they continue to refuse to seek the required advice follow the LA's complaints policy. A paper trail will help if you need to appeal or complain to the LGO.

Hi Scoreen and 'Blue - relative newbie here, so I probably won't have much useful to say in terms of MH, but sending solidarity! My DD is autistic though, so Scoreen* I would push for another assessment. Girls really tend to mask very effectively, and it only becomes apparent when the wheels really fall off...

Muddling - dealing with CAMHS, EHCPs etc just seems so frustrating. I am so worried about the scale of the mental health crisis for young people at the moment - it is a hidden pandemic. The trip to uni sounds really positive - amazing for DD2 to manage it so well!

Zoo - sorry things are so tough right now. It sounds like you are doing the most amazing job.

Leap - I think we probably need to start looking at EHCP and pushing for CAMHS involvement - I may need your expertise...

We had the appointment with the psychiatrist this morning. I wasn't feeling hugely hopeful, as it was literally the only appointment we could get, and it wasn't a psychiatrist I would have chosen based on his online bio (and he was expensive!!). However I was delighted to be proved wrong. He really listened - without making us feel that he had made his mind up beforehand, and without making us feel any kind of guilt about our parenting. He coped with DD being unable to be on camera, and communicated really effectively with her - not patronising, very clear and direct and pragmatic without being brutal. She has a prescription for Fluoxetine, working very slowly from a 4mg starting dose up to 12 mg over 5 weeks, then a review before upping to 20mg, without ruling out the possibility that she might need to go higher. He was realistic about the prognosis - he does have concerns that the very nihilistic mindset she has at the moment might be part of her autistic profile, and there is a possibility that it may not respond to medication.

DD coped well with the brief time that she was involved with the appointment. She is only engaging minimally with the CBT, but at the moment it's better than nothing. My gut feeling is that there is a mixture of autistic burnout, clinical depression and an exaggerated nihilistic outlook, which leaves me sad and concerned for her future. Trying to remain in the day to day for now.

Tonight some wonderful friends are bringing dinner, and DD is ok with them coming (although I think she will stay upstairs). Daily walks are helping with mood, but a return to school still feels a ridiculously long way off.

Hello @blueshiningsea
@Bubbleswithsqueak so pleased psychiatrist appointment was a success and you were listened to , I hope the medication helps take edge off. DD finds her psychiatrist appointments easier, they are more matter of fact and less touchy feely than counselling which she is a lot more comfortable with. Enjoy your dinner tonight!
@1jumpforward2back, our LA doesnt mention primary need anywhere on the ECHP(its a new version apparently) however I believe it is ASC, sorry dont know what NMSS is? The school we found with a place (I phoned round about 8 or so) is independent.
@MuddlingThroughWithoutAClue sounds like you are on on LAs case, I am running out of steam, I always thought they would do whats best for DD but now I think needs are met according to how hard parents fight which just isnt fair. Its brilliant she went with you to drop her sister off at uni, days like that can make all the difference and help keep us all going. DD only managed school for one short day last week so not feeling hopeful about taster week at specialist school.
@StarryNight04, I will look up that book -thank you
Hope everyone has a restful weekend

Leap - it's a good job you gave me a kick to chase CAMHS, thanks!

I fear you could be right about the medical needs tuition and plug-pulling as they will now be very aware of what's going on. A bit of a rock and a hard place though and we were just glad to have the offer of education for DD. At the point at which the current "plan" was being finalised we had just received an EHCNA appeal, date of the end of December and DD would simply be doing nothing while waiting (hoping) the LA would come up trumps with a plan. Perhaps she will get a couple of months learning in before anything gets taken away and as she's still on role with school and they did mention another alternative that might be an option.

The LA have on file the CAMHS psychiatrist report which we provided and what they have referred to as a clinical psychologist report - it's not but when I corrected them they pointed out that the report states that all the therapist's work is overseen by a clinical psychologist (really surprised they noticed this). So from the LA's point of view they are happy they have covered psychiatrist and psychologist as both reports date within 12 months. They have not mentioned our private EP report and we have heard nothing further from the LA EP. Perhaps DD doesn't need a social care assessment (not actually sure what this would involve or how helpful it would be). Thinking I have more chance of SaLT and OT as both have been suggested in reports and I have pointed this out in my emails as a reason for why this is a reasonable request. I have already used a large chunk of the IPSEA model letter in my last email and will now use it again - maybe pointing out that I'm not asking for a referral to these services, but for them to seek advice and information (don't know if this could be done via them sending info or if they would have to see DD). How do they get away with just writing to services to ask if they've had dealings with a child already and if so can they give some info?! I imagine our case coordinator utters a few choice words every time she sees another email from me (I certainly do when I see one from her!)

DD1 finding her feet I think - not so keen on the evening social life as this isn't something she has any experience of (not really had the opportunity) but she recognises the need to be a bit sociable to fit in and make plans.

Hi, all! I was directed over here from the Teenagers thread and am hoping you wise people can give me some advice. I’ve read many of the messages in this thread and I am in awe of you. I don’t think until my DS2 started having issues that I realised what an exhausting drain it is, how it’s always “there” in your mind and how it affects everyone in the family including siblings .

Anyway, here we go:

Withdrawn 16 year old son

Since Covid began. Gradually spending more and more time on his own. Immersed in audiobooks/anime/Netflix. Doesn’t want to spend time with his brothers or us. Passed his GCSEs but massively underperformed due to very little engagement in lockdown.

We got him to do some voluntary work in the summer for two afternoons a week but apart from that he just wants to lie in bed read/Netflix. No interest now in friends.

The final straw was today when my youngest said that one of my sons friends has said they have all given up on him as he never wants to hang out/do anything with them.

He’s so grumpy and difficult. Every interaction is painful at the moment. Data is limited and Wifi off at midnight. He does have to do chores but my god the effort and the strops to get him to anything. You need to brace yourself to ask him anything.

He will eat with us at dinner time and we do get him up at weekends at midday.

It’s the friends thing that worries me most. He comes home from school and goes straight up to bed. I think he’s spending his “free periods” in school hidden away reading/on his laptop as he doesn’t have much homework yet.

He spoke to a counsellor in the summer but was so angry at me for making him. He says he does not have “mental issues” he admits he’s lazy and just cannot be bothered. On holiday he didn’t want to do anything or even see his friend who was nearby.

Does anyone have any advice please?

Morning allows the weekend going?
Dd2 has been very stressed as failing to complete tasks in frees and overwhelmed/decompression time after-school =huge amount work to get on top of,which is then overwhelming
Lots tears yesterday and the mood,good lord,was tin hat conditions all the way and deffo in the trenches!!
Bit nagging after gentle words repeatedly tried she has manage pull it round and complete a massive 5assignments,just has creative English to go

Morning all
How's
My phone's autocorrect is in overdrive AFTER I press send

Can i join in?
I 'm in a very similar position to many of you.
My youngest has been having counselling since March which we recently halted. As it was causing him to self-harm.
Hes recently been prescribed an antidepressant which hasn 't had any effect yet.
We were notified by our local police that he was planning on hanging himself last saturday wherupon Dh found a rope noose in his bathroom.
I contacted the Crisis team and now Camhs are involved. Absolutely useless they are.
We are now on constant watch. Ds is in with me at night or we take turns in shifts.

Hello @doorornottodoor
just wanted to say welcome and offer sympathy, there are others on her with lots of good advice but I would say it sounds like you are doing everything right, there are no magic wands unfortunately. I try and draw out DD by chatting about inconsequential things, pets, family members, weather, news etc etc sometimes just chatting rubbish for a few a minutes will lift her out of her mood momentarily other times she bites my head off, I am trying hard not to make every conversation about school or her anxiety. Does he have any older siblings or close family members who he might be receptive to spending time with? Would he talk to them about whats going on if they said they noticed he seemed unhappy lately and gently expressed concern?

@Cantonet, of course you can join in, welcome. I am so sorry I can only imagine what you are going through, its heartrending, thank god the police contacted you and I hope the crisis team and Camhs offer proper support. Medication takes a while to work (6-8 weeks) and sadly can sometimes makes things worse before they get better, I hope you start to see an improvement soon, they may want to gradually increase his dose, not wanting to or finding it hard to engage with counselling is a common theme on this thread, hopefully once the medication kicks he will be more open to it. Do take care of yourself.

@Stilllivinginazoo, DD2 did really well completing all those assignments! Hopefully today she can decompress and relax, DDs counsellor told me DDs free time in school should be used to decompress and not catch up on work, to help her self regulate. Havent tried this yet as still havent got her into school! Sounds like school really botched up DS gradual introduction to school, best laid plans... I really hope tomorrow goes well. It doesnt take much to throw them off course and for everything to come crashing down, so I can see how frustrating this is for you, I hope it doesnt negatively impact DS too much. Good luck for tomorrow.

DD also has her first taster day at specialist school tomorrow and I know its going to be very hard to get her in and sustain for the whole week. Shes been very withdrawn this weekend,. Feeling apprehensive but will do my best to have a relaxing day today so we are fully recharged for next week

Welcome cantonet. Being on edge constantly is exhausting. I worry I have missed locking something away that DS1 could use to self harm. Keep chasing CAMHS, if you can't keep DS safe at home take him to A&E.

Welcome Door. How are DS's energy levels when he is out of bed, and what is his diet like? I ask because it's important to rule out a physical cause - sometimes teens are good at hiding illness or DS may not even recognise it for what it is. "Lazy" and "can't be bothered" could be covering fatigue. Would DS be amendable to a) asking the GP for bloods, and b) taking a multivitamin and extra vitamin D (he is likely deficient and the amount in a multivitamin won't be enough). What were DS's friendships like beforehand? Did something happen to trigger this? Would DS go for a walk/run/bike ride with you? I would insist he leaves the house each day.

Runner it's despicable, DC whose parents know the system and can advocate for them get better provision. I bet the LA use not stating primary need to shoehorn DC into available settings rather than what meets their needs. I would be interested to hear SENDIST's take on it. NMSS are non-maintained special schools - neither independents nor LA schools. Have you looked out of area?

Muddling LAs notice everything that works in their favour and nothing in parents favour. The LA have to consider your independent EP report, but, in practice, don't expect them to take much notice. SALT and OF can't give adequate advice without assessing DD directly, preferably F2F but some are still working virtually. Other professionals such as social care (aid suggest DD does need an assessment) could assess over the phone by speaking to you.

DD2 is currently on a placement year but she doesn't enjoy the night time socialising either and doesn't drink. She fund likeminded students on her course and societies and prefers to socialise that way.

Bubbles I'm glad it worked out well with the psychiatrist.

Zoo DS is bound to be stressed, starting a new school after time out was always going to be difficult. The initial period will be tough, but things will settle. Would DD listen to someone else? Perhaps someone at school or a family support worker? Other than carrying on reinforcing the tools to use, explaining the reasoning, offering support/help with organisation etc. I don't think you can do anything else. You can't make DD confront her problems. However, I know she is 17, but she has shown she can't self regulate, therefore I would limit screen time and enforce bedtimes.

DS1 has had a difficult weekend. I'm finding it hard to balance DS1's needs and DS2 having friends over. We have enough space that DS1 never has to be around DS2's friends but there is a certain amount of noise that is to be expected and is reasonable that DS1 struggles with.

@Runnerduck34 thank you so much. We are trying just to have day to day chats with him about every day stuff. He’s been pretty good today. Quite chatty when he comes out of his room! Walked the dog and collected in some apples (very wholesome!)

Best of luck to your daughter tomorrow. ❤️

@Cantonet that sounds incredibly difficult. Is school any good? How old is your son? I hope your weekend went ok. What a terrible worth and strain for you all.

I'd love to join in! I have a ds14 who has asd and who has left the house twice since 15th July. Both times for his hobby, but sadly not for school since it restarted....

@Runnerduck34 I meant to say my dad is pretty good with him so I may encourage a bit more of a regular thing there. His older brother is away at University and is pretty focused on all that entails. I don’t think he realises how worried we are. Funnily enough, his younger brother is quite supportive but I don’t want to put it on him if you know what I mean .

@MackenCheese my DS is 8 and hasn't rarely left the house since May. He hasn't been in school since then. We have an ASD assessment for him in October. It's a very hard situation, we don't really know how to handle it. He is so young and is missing out on so much but he is just so anxious all the time

@1jumpforward2back thanks got your reply. His diet isn’t great. He eats a decent breakfast Weetabix/or eggs and gets decent lunch and dinner but all the crappy snacks he buys himself. Sugar sugar and Lucozade/Coke. I’ve spoken to him about sugar highs/lows but you know what 16 year olds are like.

He gets a fair bit of sport at school but is always complaining about being tired. I’m kicking myself now about not investigating that! He did silver DoE expedition last weekend but was pretty broken after! I will make a GP appointment. Thank you.

@MackenCheese @alwaysscared I hope that your boys can get some help. This pandemic just makes everything so much harder. I’m sorry I’ve no advice but didn’t want to read and not reply

@doorornottodoor thank you

Thanks. Everyone keeps saying there are lots of kids like this (my friend has just elected to home school her anxious daughter) but it doesn't help us as a family . My job is to get some education for my son, and since he has an ehcp, my goal is to hold the LA to account!!

@MackenCheese my DS has a tutor provided by the LA. School applied for it. It's a great resource but he struggles to engage. He sees her (virtually) 3x a week for 1:45hrs and the rest is up to me. I try to get him to do school work everyday, but we also suspect he has PDA, so trying to get him to do anything is very tricky!

@alwaysscared how old is your ds? We suspect mine has PDA as well. Not sure if a tutor would work with us, but we have to try something. School are doing a home visit soon, so we'll see what they suggest.

@MackenCheese my DS is 8. From our experience there are a lot more secondary tutors than primary. Get a note from your doctor to say your DS is unable to attend school due to anxiety, then it is the LA's responsibility to provide adequate, alternative education