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

Fab news Zoo - you definitely need to celebrate today's successes! Well done DD2 - that must have taken a lot of courage to join different year group and mix with new people. Good that she could also spend time with old friends. My DD1 also had a timetable clash over A level subjects and tried a couple of possible options out and it was really helpful and she ended up choosing one she hadn't thought she would enjoy and loved it.

It must be a relief for you that DS's new school are in the same wavelength as you re settling in approach. Friendship possibilities great too.

Brilliant news Zoo.

Thank you for the lovely welcome and well done to all dcs that have gone back to school and coped well.

After a great first day dd wouldn't go in to school this morning. So disappointed but tomorrow is a new day. I emailed her therapist and she was supportive so it's early days in the cbt road so must not get too fed up.

I hope we all have a good day tomorrow

We had extensive tears and panic last night.not helped by school suddenly deciding no facial piercing in 6th form anymore and DD having take out nose stud(had a year) and eyebrow bar(6months) both had closed enough couldn't get back in at end of day and she's DISTRAUGHT.not helped saw some flouting rule anyway
Today flurry stressed texts as she wasn't registered to allocated tutor group
Also has no registered English class...

She didn't eat all day yesterday as so strung out,not expecting any better today..

Lil zoo did ok yesterday by all accounts.dud sit by self breaks and lunch as not managing keep interactions with friends in hols etc.thafs bit of a worry.sidnt eat a food.only drink was frozen carton ribena so when dd1 collect her they pick up drinks and were downed rapidly on way back to hers.no change or improvements there then .

We are still not back at school. He has been off since May and I can't see him going to his new school for a long while 😫 so it's back to me homeschooling. We are getting a new OOST tutor who is primary trained which is good.
I am not a teacher, I never wanted to be a teacher but here I am trying to teach my highly anxious 8 year old. It's so hard, just waiting for support and referrals. New school are really good and are happy for him to start whenever, but I can't see it being until at least the new year. I'm really struggling

Always* I'm sorry things haven't gone to plan for you all
Have you seen any tiny increments of hope?
Are you getting him outside at all(even just the garden?)
Are you getting any sleep

There have been some tiny things we have been able to do, and yes he spends a lot of time in the garden. Not much sleep I'm afraid, 12:30 last night he fell asleep, then I lay up worrying

Aw,glad you are at least able to get outside a little
What time do you get up?(my memory's rubbish,do you have other DC?)
Can you write down your worries putting them in a nothing I can do so need to shelf them and rest into list with breakdown of how to improve things?
I find the action of writing on paper really useful for letting my brain "let it go'

Always did you apply for an EHCP? Why are you trying to teach DS if you have medical needs tuition in place? Medical needs tuition should provide the equivalent of a full time education, or as much as DS is able to cope with. You are not homeschooling, DS is in receipt of medical needs EOTAS tuition, it's an important distinction. If you say you are EHE the LA will say you are making suitable arrangements and therefore they are received of their duties.

zoo how did today go? I hope DS isn't too anxious about starting school again.

@1leapforward2back not done EHCP yet as I don't know where to start. We have a tutor for 5hrs a week, 2 days at 2.5hrs. I just don't think that's enough, and if I don't homeschool on the other days then he would just spend all his life on screens, as he won't leave the house and won't do any activities I suggest. It has been suggested that he probably has PDA as well so trying to ask him to do anything is pretty much impossible

@Stilllivinginazoo he has been waking about 9/10 am. We have tried waking him earlier in hopes that he sleeps earlier but that doesn't work.
No other DC
I have so many worries, I have OCD and a variety of other mental health problems so have tried worry diaries etc

IPSEA have a model letter you can use to request an EHCNA. With an EHCP you would be able to secure more tuition, SEN support and therapies, or more support in MS or a place in a SS.

You can challenge the 5 hours - the LA must provide a "suitable, full-time education". The law does not define full time (although, for comparison, the guidance mentions it would be 25hrs for KS4, so would be slightly less for KS2) but should be equivalent to what would be received in school. However, obviously if 1:1 it wouldn't be school hours as it is more intense and it cover more in a shorter time.

How long did you persevere with earlier waking? It would be one of the first things a sleep clinic would recommend.

Have you tried PDA strategies - the behaviour is often driven by anxiety about needing to be in control.

Hi all, hope it's ok to join you. @1leapforward2back suggested I post on here even though DD15 is mostly struggling with depression (although pretty sure her underlying levels of anxiety are also high). DD is autistic, and (with hindsight - marvellous thing) her mood has been very low for quite a while. She is also very skilled at masking, so no one picked up on how bad she was feeling. This culminated with a very well planned and determined suicide attempt last week.
She has been seeing a fantastic therapist for CBTi (CBT for insomnia), although she absolutely refused to engage in anything that wasn't directly related to sleep. We are lucky that we can continue to pay for weekly sessions, and at least she has a bit of a relationship with him.
At the moment she is not in school, and we are trying to establish a routine of getting outside and doing at least one relaxing thing per day (usually building models). It all feels very fragile.
GP and school have been amazing, but predictably CAMHS referral has gone nowhere so far. School have already offered full time online provision if she needs it, although this would be dependent on CAMHS signing her off school, so that will depend on whether we ever get an actual appointment...
We haven't really talked about school properly yet - she knows that online is an option, but being autistic I worry that she will want to go back to what she knows (i.e. her 'live' school), and that this is one of her major stressors, leaving her with very very little energy to do anything else, and bringing her mood right down.
She also has alexithymia (inability to identify emotions) which is what her therapist thinks is significant. We have started a 'mood dictionary', where she is creating scales for each mood, and using creative writing (one of her strengths) to describe what the different intensities of mood are like. We started by watching Inside Out!
Sorry for the long and incoherent introduction. Parenting feels like a lonely place at the moment.

bubbleswithsqueak welcome aboard.anxiety and other conditions are often chugging along together.we are a motley mix of these,so please don't feel the need to apologise for not "just having anxiety"
My D's has significant anxiety plus autism diagnosis was August 2019,aged almost 14
I have a DD who is 17,and just started repeating year 12
I started these threads when D's anxiety escalated out of control very rapidly and here we are 3years later and he's finally got a hopeful school place sorted having been batted thru the system with nothing of any consequence education in the meantime!(mum guilt is high for that)
You don't mention other family members,have you any other DC /significant other/any family support?or friends in RL you can talk to
I do not,which is why these threads started.its HARD and exhausting.well meaning "make them do it,stop pandering "etc from bystanders adds to the parental load,the guilt we can't make it right or what did we fail at..we are a safe space to vent,share ideas and support one another
You are most definitely not alone here

It's been a tough morning here.dd was very unsettled this morning
I walked her to school and she was hyperventilating before even reached sight of the buildings,so he's remind her to slow her breaths
I got messaged at 9,spent half hour in loo crying,cant do lessons etc
I am currently reading an anxiety workbook (for myself actually,but has useful pointers in I can use for her too) and I can easily recognise now she uses distraction rather than riding out the discomfort so it peaks,then troughs(she is maintaining constant anxiety by distracting at every opportunity).I text I love you and I know it's super hard but you must go to the lesson and ride it out.the only other choice is to let the anxiety voice win.its robbed you of year 12 already,of friends,experiences, independence.do not allow it to take away this chance to repeat the year and pick things back up
She replied was going into the lesson.heard nothing since,so either is smashing it or not speaking to me...

hello@Bubbleswithsqueak
So sorry to hear about your DD, Its must be unbelievable awful for you all, so pleased you found this thread, no magic wands but an understanding ear, feel free to vent here at any time.
Please be gentle with yourself as well as DD, getting help is slow, but the most important thing is that your DD is with you, baby steps.
I am pleased GP and school have been brilliant, CAMHS are a struggle no words of advice other than keep persisting to try and get help.
If you can afford it would it be beneficial to see a child and adolescent psychiatrist privately? If she isnt already on it medication may help, although its tricky because sometimes (not always) it can make them feel worse initially which you dont need right now. Of course this should be available on the nhs via CAMHS but ime help is just not forthcoming.
Does she have an EHCP? If not do apply for one, if school is one of her triggers would pursuing a specialist school be worth while? Less stressful environment? This is a long hard process but may be worth it.
Also apply for DLA if you havent already (DLA changes to PIP when they are 16) you can the use any money awarded to get help privately if needed, but most importantly look after yourself

zoo-lets hope shes smashing it!
You both did well to get into school.
After a positive first day on Friday DD has struggled, didnt manage to go in Monday, did a short day on Tuesday and came home happy but this morning shut down and not leaving her bed let alone going to school. Its interesting what you say about avoiding anxiety/distraction, I think we both do this so it peaks and troughs, its hard to get advice and help, CAMHS have been useless so I am fumbling around in the dark, I should do more reading around it but sometimes I just cant bare to think of it anymore (distraction!)
I did first session of cygnet course this morning, which is for parents whose DC have just had a diagnosis of autism. Sat in a "virtual" room with parents of autistic boys all of whom are infant school age. No other parents of a girl or a teenager, felt very alone if Im honest. There are similarities and useful info but also a lot of differences. So the other parents want help in managing challenging behaviour, such as hitting etc, as I want help to persuade my teenage DD to measure herself for a bra (and convince her to wear one) and manage periods so in a different place to other parents who found an instant common ground and a connection.

Thanks for the welcome, zoo and runnerduck, and I'm sorry that you've both had a tough morning. It started off rough here too, although we did manage to get out for a walk, which has helped.

I have a DH, who is great. DD is an only. The guilt is pretty huge - DD got her diagnosis aged 10, which was purely down to me pushing for it (rubbish primary school were not bothered because she was no trouble and doing well academically). But that was 10 years of parenting an autistic kid like she was neurotypical, which I think has probably been fairly damaging. Thanks for the idea of private psychiatry - when I think back over the last few years, there have been very very few times that she has shown any joy in life. She hasn't wanted to do anything for at least 18 months, maybe more. So it feels like her depression is clinical rather than reactive, IYKWIM. I'll look into EHCP too. She gets DLA - might be worth us applying to up that a bit. She also has a very wealthy granny who will pay for anything she needs (Granny doesn't buy things that people WANT, but is super generous with money when it comes to need).

We've had no support in terms of parenting an autistic kid. But I have learned LOADS from the autistic community. There are some amazing FB groups - it's very very uncomfortable at first - the groups are autistic spaces, and it is a real mental shift to stop viewing autism as a disability and an issue, and start seeing the neurotypical expectations as being the main problem. But there are so many autistic adults who are absolutely brilliant at thinking of strategies and recommending supports.

Bra-wise - will she actually wear one? I just ordered a shed-load off the internet (we found Boux Ave to be good because DD is titchy, and they do good non-underwired bras with small bands and larger cup sizes). DD tried them on and said which one fitted best. I just ordered a couple in that size. We also tried Molke as an alternative, but they involved a bit too much wrestling to get on. DD hasn't struggled too much with periods, but period pants have been good. We don't bother rinsing etc, just bung them in the wash fairly quickly. Not had any issues!

God another massive post - sorry! I am struggling to talk to people IRL because of dealing with their own reactions about what has happened. It feels like too much to manage their emotions as well as my own...

Welcome Bubble, don't worry about long posts.

Be aware some CAMHS teams don't allow you to mix their care with private care.

The LA should not wait for CAMHS evidence before starting medical needs tuition, the guidance covers this. Complain, and if they still refuse threaten Judicial Review. Medical needs tuition must also be suitable for a child's needs, if online isn't suitable an alternative must be provided, such as F2F home tutoring.

DS1 (complex MH conditions, primary diagnosis of PTSD) and DS3 (ASD) both have alexithymia. It makes coping with everything and engaging with support much harder. DD2 also has ASD but doesn't have too much of a problem identifying emotions, but does struggle communicating them. She was diagnosed at a similar age to your DD and now at 21 is better at it than she was. Is DD receiving any emotional literacy support? Has anyone mentioned Zones of Regulation?

Runner that's terrible organising from the course leaders. Would DD wear sports bras? Robyn Steward, who has ASD herself, has a book on autism and periods, I haven't personally looked at it but it has excellent reviews, although I'm not sure if it's aimed at younger DDs.

Zoo I hope it's the former. If it was the later I think you would have received a tirade of unhappy messages.

Thanks guys.ive heard nothing at all.
I've got a really bad headache and slept instead eat lunch.just woke up
Need walk over to meet her now

Runner in case you decide you fancy reading the book I'm using its this one

Thanks zoo for the book cover, I will look it up.
And thank you leap for the other book recommendation, I will look that one up too. DD currently wears a minimiser sports bra but I think she may need a bigger size, she's had a growth spurt but is insistent her current sports bras are OK, as you can imagine negioating bras with asc and sensory issues isn't easy!

Hello Bubbleswithsqueak sorry your DD is struggling so much and that CAMHS are not yet helping (CAMHS waiting lists are arecurring theme unfortunately). School and GP being supportive is good. Leap's advice about not waiting for referral for medical needs tuition is good - wish I'd been more aware of rights and pushed for this last autumn. Instead DD2 was out of school without any structured education until March 2021 when CAMHS referred and this was y11.

Thanks for book info Zoo, I might take a look. Hope DD's day got better.

Bra coincidence - I booked bra fit today for DD2 next week. She is about 2 years overdue (I know that's bad) and I've been saying we need to do something about her bras for a while. Covid lockdowns and anxiety not helpful (she rarely leaves the house as huge anxiety around people/crowds etc). Gave her option of in person fit when schools gone back to avoid possibly seeing former classmates/anyone who might vaguely know her or online fit appt and me guesstimating and she finally agreed to visit in person! (I think she was listening when I said I'd booked it though time will tell). I will plan nothing else that day apart from some kind of reward/treat for going out of her comfort zone.

Please can I ask (another) EHC Needs Assessment?

IPSEA says "The LA should consider whether a social care assessment or health assessment is also needed. There is some debate as to whether health and care assessments are automatically triggered when a request for an EHC needs assessment is made. In practice, it is best to request social care and health assessments independently to ensure the request is received."

We had a letter in with the pack the LA sent when we first requested a needs assessment from Children's Services to say that they had been asked to assess any care needs as they could be included in EHCP and that we might be contacted. There was an email address to opt-out via too (we didn't). Never heard from them.

Wondering now if this is something I should be requesting as the letter states needs could include socialisation, inclusion opportunities etc. DD2 is really isolated and we've wondered about mentoring - could it include this sort of thing?

Or would it be less helpful as LA might try and suggest her needs are health and care and not education?

@1leapforward2back I have looked on that website and can't find the model letter. I need to speak to our new head about the EHCP but he isn't keen to start one until he has worked with DS. I know I can apply but I just don't think I'm experienced enough?
I think we do get the equivalent of 25hrs, with 5hrs 1:1 and the rest like 'homework' which I would do with him anyway, so just like homeschooling.
I want him to be doing the same (ish) work that they are doing in school so the head sends me work for him to do (not that he actually puts any effort in to work)
We didn't persevere long with early waking because, to be honest, I'm knackered too and need sleep too. He will only go to sleep with me
Just started looking at PDA stuff and trying out strategies