Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

Zoo why won't school let your DD2 repeat year 12 if that's what she would prefer? It must be very stressful for her worrying about catching up with backlog while trying to get well, poor thing

Al fresco lunch while enjoying nature sounds lovely and do good that she ate while distracted.

Morning everyone. I have chased up EHCNA request this morning as 6 week deadline is nearly up. Presume if the LA refuse they will send information on appealing to us with rejection letter? Hoping they will agree to assess but will appeal if not.

Tee fingers crossed for a sustained improvement.

Zoo well done DD2.

Muddling never underestimate how low LAs stoop. £££ are spent every year hiring barristers to defend indefensible cases against unrepresented parents. As disappointing as it is, qualifications can always come later, mental health is the priority. Can the fluoxetine dose be increased? Will online schooling work or is face to face tuition needed? Therapies can be included in EHCPs.

If you called the LA send a follow up email so you have a paper trail. If the LA refuse to assess the letter should inform you of your right of appeal and give the contact details of the mediation service. Experts advise just getting the certificate. LAs often use mediation as a delaying tactic. If the LA are going to concede they will do so regardless of whether you actively partake in mediation or just get the certificate. If the LA don't respond by Week 6 IPSEA have a model letter you can use to complain.

Put sorry to hear DD didn't manage the farm last week, I hope this week is better. Don't lose hope with the meds, finding the right type/dose takes time. Submit a parental EHCNA request. Then it's done relatively soon, not potentially at some point in the future.

Zoo is right, everyone can look back with hindsight and wish they had done something differently, I certainly do. 'What ifs' only add to your anguish. You did what you thought was right at that moment in time.

I am lucky I don't have to work, I wouldn't be able to look after DS' and keep up with their appointments and paperwork whilst working. Balancing work with being the main carer is a no-win situation.

@1jumpforward2back as you say fingers crossed.

DD1 has been revising today, generally in ok spirits. She is struggling a little with what to wear in the heat and is also ok with old self harm scars showing. There are a lot of these on her thighs, I can see that many of these will fade but not all.

DH finds the scars hard to see but apparently being prepared to show them is a good sign.

I am phasing back into work after a 5 week absence. Slightly gritting my teeth but think it's the right course.

Thinking on how to say to DD1, fine to have a crisis but can we please not go the A&E route. There are other options. Ie there are other cords to pull.

Hope all you lovely people are hanging in there x

Thanks Jump I sent email to case worker rather than phone as seem quite difficult to get hold of in person. Hear nothing as yet.

Psychiatrist decided against medication increase at this time due to "homework" being likely to increase anxiety and didn't want to combine with medication anxiety side effect of upping dose. Got the impression perhaps at next appointment.

I know you are correct about education/qualifications being of less importance than DD2's mental health but I've found it hard to adjust my thinking. Face to face lessons would be good in sone ways but think it will need to be online for practical reasons - DH WFH will likely end in the autumn and I have little doubt my work will require me back in the office 5 days a week as soon as restrictions end (currently doing a mix). It will become more difficult to take DD2 to appointments etc and not sure how we would manage face-to-face lessons presumably with tutor at house and work.

@MuddlingThroughWithoutAClue DH and I needed to go through this loop with DD1, as in working out whether it was better for her to be in or out of school (with both of these concepts being somewhat fluid due to lockdowns )

The bottom line is, she wants to be in school. As for qualifications......she has been so low at points over the last 18 months I've completely let go of that.

Sorry for delay, had log in problems so could post. She's been into work since, am now waiting for camhs to arrange mh assessment before they'll refer to psych, have looked at private but as I'd have to borrow from family who don't really get it, I'd rather not if possible.

We have good days and bad days and I never know what I'm going to wake up to it or come home to mood wise.

My boyfriend is struggling with my need to be available for her, which is also causing me stress. He doesn't have, nor does he want kids, so he will never understand.

Am so glad to have found this thread and realise I'm not the only one going through this type of thing on a daily basis, you are all so amazing at how you cope.

@teelizzy-hope your return to work goes smoothly, it is hard juggling everything. Its good DD1 wants to be in school

@MillyMoo1113- I hope CAMHS get a move on so she can get the help she needs, out of absolute desperation we went private route and it is so expensive, private prescriptions cost the earth too.

I dont think anyone understand the pull DC have over us, ime it is mums who will unconditionally sacrifice everything for DCs wellbeing, often even dads dont get it, let alone bf- sadly I dont think he will ever understand. Extra stress and pressure is the last thing you need.

@MuddlingThroughWithoutAClue you are right about juggling appointments ,Dh and me are wfh since covid and its been really helpful for taking her appointments and just keeping an eye on her, I couldnt have coped if I had to be in office- last wednesday I realised Id spent 5 hours that day taking her to school and attending appointments with her as well as trying to work, just felt really burnt out.

@Stilllivinginazoo I'm shocked school wont let dd repeat year 12, did they give a reason? are you able to complain or escalate it to headteacher/board of governors? usually in 6th form repeating a year is a fairly easy thing to do, will they let her repeat year 13 if she doesn't get exam results she wants? I'm so sorry you are having this fight on top of everything else.

We have had a bit of breakthrough here DD doing really well atm, was in school 4 days last week and every day so far this week, all short days but such a huge huge improvement, this is the best its been in over a year. She is also starting to engage with counselling, trying not to get too carried away as I know she often come crashes down to square one after an spurt of improvement, but tentatively hoping this time maybe just maybe she has turned a corner.
She has had her medication(Setraline) increased to near maximum dose and although I think it is helping her anxiety I noticed on two evenings she has started twiching/ tic like head movements in the evening when she is tired so I am concerned that maybe a side effect so keeping a watchful eye. Has anyone else had experience of this?
Had Ed Psych assessment for EHCP on Monday (19 weeks after my request for assessment!) so looks like things are finally moving forward, Ed Psych seemed to really understand her difficulties so I am a bit more hopeful now of ECHP being issued .

@Runnerduck34 well done to your DD and hope she had another good day today. 5 hours was a lot of running around to appointments school etc last Wednesday - no wonder you were exhausted.

We heard today that EHCNA request has been refused. We are angry and upset and will be appealing. Have told DH that I have learned from posters on her that LA are a sneaky bunch and that this may be a ploy to try and make us go away in the hope we don't appeal and that we have to fight.

I had no response to my email to the caseworker mid-week and got an out of office when I followed up earlier today. A bit of chasing around and I got hold of a departmental phone number which DH called (I was at work in a not private environment) to be told that case worker on holiday and will phone us next week, panel had rejected EHCNA request and letter will be sent out to arrive sometime towards the middle of next week. No reason was given for the rejection and I think he was too upset to push.

I'm annoyed with case worker for not having the manners to reply to my email earlier in the week - rude - and I'm also cross that we weren't informed officially within the 6 week deadline.

DD2 has missed a year of school due to anxiety, low mood and social communication difficulties, she was referred to medical education by CAMHS psychiatrist so effectively deemed too ill for school, CAMHS are considering referral for neurodevelopmental team for possible ASD. She was previously working towards GCSE grades at a high level but has now finished with nothing. I don't know how she could not meet the criteria for an assessment!

One unfortunate thing was that DD2's previous psychiatrist was a locum and she only met new psychiatrist earlier this week for the first time. CAMHS therefore said they would be able to provide information to LA after meeting with new psychiatrist (too late for panel this week I think). We were aware of this early on and submitted previous CAMHS reports (including psychiatrist's) which included diagnosis along with a private therapist report from last September prior to CAMHS involvement. I doubt new psychiatrist would have any additional insight to add at this stage.

I know we need to appeal and I presume we need the letter to arrive in order to tell us how. @1jumpforward2back please can you elaborate on the mediation certificate you mentioned getting? I assume this will also be included in the appeals information and if I've understood correctly we appeal at the same time as agreeing to mediation (can't think what mediation means in terms of an EHCNA).

Is there anything I should be doing in the meantime eg any letter writing to complain about them not really sticking to timescales although I suppose they have now we've dragged it out of them?

Thank you for any advice and insight

Have now read the section on mediation on the Ipsea website. Looks like we will have to wait for the decision letter to arrive so we can get the telephone number of the mediation service. I honestly can't see how attending mediation would help in this situation so perhaps we should just get the certificate to allow us to appeal?

Now need to read up fully on appealing the refusal to asses.

Apologies for wittering on - I am trying to channel my frustration positively otherwise I know I will be reduced to a crying mess.

muddling the point of this thread is advice,support and understanding plus a hefty dose of listening ear/safe space to rant and get stuff that you don't want taking up headspace out!never need to apologise lovely.x

Thank you Zoo xx

Runner DS1 has a motor tic related to anxiety. It worsens if attention is drawn to it and if his anxiety is heightened. When you get the EP report if it isn't detailed, specific and quantified ask the LA to go back to the EP to make it so. EHCP provision is taken from the reports, if the reports are vague and woolly the EHCP will be too, then it isn't worth the paper it is written on.

Muddling sorry to hear the EHCNA has been refused. Do appeal, the vast majority are upheld. DD meets the threshold for assessment. The legal test is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Any other test or hoop the LA want to jump through is unlawful.

The LA's letter should include contact details for the mediation service. The law requires you to consider mediation, but you don't have to actively partake. You can't submit to SENDIST whilst going through mediation as you need the mediation certificate to submit to SENDIST. Experts advise just getting the certificate and submitting ASAP. The aim of mediation is to try to resolve matters without a tribunal. However, LAs use mediation as a delaying tactic, if they are going to concede they will do so whether you partake in mediation or not.

Whatever you do don't miss the deadline for submitting to SENDIST - normally 2 months from the date of the letter or 1 month from the date of the mediation certificate, whichever is later. Although as the 2 months will fall in August you have until the first working day in September.

The time to complain the LA breached the statutory deadline was between the deadline passing and you getting the LA's decision, preferably as soon as the deadline passed. At that point you could have threatened Judicial Review, and followed through with the threat if necessary. Personally, now, I would focus on appealing. Send an email now and follow up with a phone call on Monday insisting on their formal decision notice by the end of the Monday as they are frustrating your right of appeal.

Try to get an IPSEA slot and call SOSSEN. SOSSEN have webinars and booklets you can buy if you want. The SN section on here has some knowledgeable posters. Consider whether you want independent assessments.

Also, I believe if there is a test case the law requiring LAs to provide medical needs tuition would be extended to 18 now the age of participation has been raised. I think the only reason no one has challenged it yet is because the SEN system grinds parents down.

Jump, thank you for your advice, the support and advice I get on here is invaluable , I feel like this thread is my secret weapon🤣
Muddling, I am furious for you, how the hell can they refuse to assess! Please appeal its just outrageous.
Its so hard this battle we are all undertaking, its takes up pretty much everything we have.
Hang in there everyone, wishing you all peaceful and relaxing weekends.💐

Runner they refuse because all too often parents walk away. It saves them money and resources. Even if the LA later concede or parents appeal they have kicked the can a few months down the road. Unfortunately, children whose parents know the system and can hold the LA to account get better support. It shouldn't be that way, but it is.

Jump thank you for your detailed reply which is much appreciated. I have read your advice and will read it again. The 6 weeks deadline was today and I am cross that we didn't receive the official letter and instead had to phone to get chase the decision. I like your suggestion of insisting on formal decision notice by end of Monday - they can email it just as we were encouraged to email everything to them!

Will look at IPSEA and SOSSEN further.

Have wondered about further independent reports but not quite sure what. Also, CAMHS very clear that we can't mix private and CAMHS so not sure if private reports might be considered a breach and don't want to risk anything as been waiting for what feels like a long time. Also, not sure we can afford as already spent quite a bit on private medical appointments and therapy prior to CAMHS. DD1 going to university in September and while delighted for her, financially we will be very stretched.

I am a bit doom and gloom right now but will pick myself up and get on with it. Hopefully seeing close family for the first time in a year and a half on Sunday.

Hope you all have decent weekends.

To gather further evidence make SAR requests to school, LA, GP, CAMHS and any private therapists.

I would start with an independent Ed Psych report. It won't make a difference to CAMHS care, although I wouldn't mention it to them, they don't need to know. At this point if you have other evidence you shouldn't need anything else for a refusal to assess appeal.

If you did want further independent assessments OT and SALT would help. Again, shouldn't stop CAMHS care as they are one off assessments for the EHCNA process, but I wouldn't mention them to CAMHS, they don't need to know.

If you think you need assessments but are worried about finances get in touch with Parents in Need.

Does DD get PIP?

Thanks for the thread

Jump - once again thank you for the advice. So the SARS requests would be go find out all the information different organisations have about DD? Not sure GP info would show anything other than referral they did to CAMHS. I have thought of private EP report but they have always seemed to have lengthy waiting lists when I've searched before. Will revisit.

Lack of evidence is a problem. Things weren't good from end year 9/beginning year 10 with after falling out with friends and social isolation/anxiety around school/falling attendance. We communicated with school as soon as we were aware of issues but opportunities were missed to follow-up and support DD2. Lockdown 1 was frankly a relief for us all not to have the stress of trying to get her to school but the downside was she simply wasn't able to cope with reintegration in September (quite possibly would have been the same after the summer holiday if had been a normal year). So basically she went from being a child who attended and was doing ok academically to a child who suddenly wasn't there. Private therapist report we had done last Autumn meant school tried reduced timetable, dropping of some GCSE's and safe spaces for DD2 to go if anxious/panicky but unfortunately she managed to attend for very few sessions. So from school's point of view since she wasn't there there was nothing they could do. And there isn't a trail of evidence of decline and support put in place. I feel that DD2 has just completely fallen through the cracks and DH and I are not good at being pushy enough and mistakenly believe others have DD2's best interests at heart when they don't.

PIP I looked into previously and wasn't sure DD2 has enough difficulties to qualify (also wasn't sure what the money should cover as she was still getting child benefit, free prescriptions etc) but think I will have to get her to apply now as if not in education there will be no child benefit and prescriptions will have to be paid for. She is ok with self-care as in she can bathe herself, dress herself although needs constant reminders and find washing her hair difficult due to feeling dizzy/faint often in the shower. She is also fine with feeding herself (although she couldn't currently manage to go to the shops by herself to buy food due to anxiety). We manage her medication and medical appointments etc. She lets us communicate with professionals on her behalf most of the time but can communicate with them directly if needed. I'm not sure if this is sufficient to qualify but will phone to apply Monday.

Runner thank you for being furious for me - cheered me up!

Muddling- everything you say totally resonates with DDs struggles.
SENCO at DDs school has been supportive but even so it was me that suggested ECHNA , honestly I think no one offers anything unless you push and actually ask the right specific questions- but its a struggle to know what they are! its just not fair as its a hard system to navigate let alone when you are running on empty.
We have some evidence from school but obviously gaps in school evidence during lockdowns, school discussed her at LIFT forum which I think is part of the criteria for being accepted for an ECHNA has school discussed your DD at LIFT? What strategies have school tried? Have they exhausted everything on the local offer? The local offer should be on LAs website.
We also have the issue that if we cant get DD into school then there is nothing school can do.
We have had some private assessments for DD, she has seen child psychiatrist and had ASC assessment as getting help from CAMHS was an uphill battle to even get accepted on waiting list and the a long wait from there, she has only started to receive support from CAMHS last month and she started to school refuse in October 2019 so if we relied on CAMHS for evidence we'd be stuffed and DD might be in an even worse position mentally. The child psychiatrist prescribed medication to help with anxiety (GPs cant do this for under 18s) and getting the ASC diagnosis coincided with finally get help from CAMHS, although officially they tell you a diagnosis doesnt make a difference to accessing help.
Upon advice on this thread we applied for DLA for DD ( shes 14 ) I am not sure on process for PIP which I think is for 16+ and think it might a bit trickier but honestly I would go for it, the guidance notes they gave for DLA were really helpful in giving you ideas about how to complete the very lengthy form, there are probably lots of things you will be doing that wouldnt normally be necessary for a child of that age, even prompting them to do something they can physically do themselves but wouldn't bother with due to low mood like get dressed or wash, or being too anxious to use public transport independently. Put down worst day scenario. The money we get has helped with private appointments and without hearing about it on here I would never have applied

Runner the only legal tests you have to satisfy for an EHCNA are a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Anything else is unlawful. LIFT is unique to your area, other LAs call their services different things - just to confuse parents further, I'm sure.

It is frustrating when schools pass the buck and state there's nothing they can do. They can refer for medical needs tuition, apply for an EHCNA, apply for high needs top up funding, ask the specialist teaching service for advice, support a CAMHS or local universal services referral. If a child can go on site, or even if not in this virtual world we have now, they can provide mentoring, counselling, social skills support, emotional literacy support, 1:1.

no one offers anything unless you push is spot on. If there's ever a time to be a pushy parent now is it.

Have you looked to see if you are eligible for a Family Fund Grant?

Muddling SARs will show you what information others hold on DD. Even the GP notes should highlight DD's needs - presumably you discussed DD's difficulties to get a CAMHS referral. Once you get the SARs data cross check them to ensure you have been given everything. For example, an email between the school and LA should be in both.

IPSEA will be able to direct you to EPs near you accepting tribunal work. Starting a thread on the SN boards may work too. You don't need evidence of a gradual decline. Technically you don't even need the school to have done anything, case law shows it's possible to get an EHCNA when the school could do more but won't. Although it is obviously easier if support has already been tried. It's also possible to argue DD's needs can't be met without an assessment because there is insufficient awareness of her needs and the provision she requires. As DD was receiving medical needs tuition and it would continue if she hadn't aged out it has been accepted DD is too ill to attend school so you already have a strong case. As a starting point look at this.

When you phone DWP ask to become DD's appointee. For PIP reminders and prompting count. I imagine you remind/prompt/support DD to eat/drink, take medication, bathe, dress, prepare a meal, mix with others, planning and following a journey, potentially also meeting the communicating and budgeting criteria too. Unfortunately, shopping isn't considered under preparing a meal, although one of the mobility questions considers planning and following a journey and needing support to go out.

Don't state every day is a bad day, DWP know conditions vary and except for a couple of exceptions on safety grounds you only have to satisfy the criteria more than 50% of the time for them to apply. Also, if you are called for a F2F (some have now resumed) and you are having a better day it undermines your whole claim.

If DD registers with your local careers service there is a 20 week run on of child benefit. Otherwise for prescriptions/dentist etc. look in to a HC1 form. Failing that a pre payment certificate may save money.

Hello hope you don’t mind me joining. I’ve been on the Child Mental Health board which has been really helpful but could do with some longer term support/advice and hopefully may have some info to share if needed.
My DD 14 is under a private psychiatrist for many issues which came down to a possible mood disorder.
Thankfully she is really engaging with the help and can describe her symptoms clearly. We have had OCD and self harming as part of the mix but the underlying mood swings seem to have driven this.
Now on a medication for bi polar although not diagnosed but it has good results with levelling out the highs and lows and a low dose fluoxetine that helped the OCD.
She attends school So I am fortunate that is one less thing to worry about.
The hardest thing is the fear for her when things are low and I can’t sleep and seem to be on hyper alert.
I need to get into my head that it’s a long haul and not exhaust myself but that’s easier said than done.
Thanks for listening

Welcome Bagpuss.

Getting DC to a point where they can engage with support is half the struggle. It's brilliant DD can communicate her needs and engage. Do you have support? Have you had any counselling? You can't support DD if you don't look after yourself.

DS1 takes Risperidone which reduces the swings from high to low and back again, which I am thankful for as it is draining, physically and mentally.

Hi thanks for the welcome - no I don’t have support but I have sat in on the calls so far to the psychiatrist etc and they have been helpful.
It’s nearly broke me a few times but at least I know someone is listening to us that’s worth it’s weight in gold. As long as I can get enough sleep and walk I can usually pull myself along. I totally understand the poster who took some time off work I just wish I could stop altogether. Luckily I’m part time and can be there after school.
The medication is Lamotrigine we are trying minimal side effects so far. Hoping it evens out the lows as they cause the most distress.
It’s good to know your medication is helping. We have only been on this a week so will see how it goes.