Parent and carers of anxious teens(part 6)

[Stilllivinginazoo]

Another thread full!!
For anyone new,these threads started as my D's had crippling anxiety in year 8( and was later diagnosed ASD)now about to start 6th form in September we have been running this quite a while!
This is a safe space to discuss the overwhelm that can engulf us,seek advice and find friendship with others in a similar position.
Please note this is a non judgemental space and respect and care of each other is at the centre of what we are here for.
Whether you want to vent and run,or hang around a while,welcome!

I know this deep down much as it saddens me. I intend to try and keep DD in education/training for as long as possible - current course can be up to 3 years. She has started looking at possible courses/careers which match her interests but that will at some point mean joining a mainstream placement/course. Realistically whenever it happens work could be difficult - how many jobs allow you to have days off because you need a day away from people?!

Does it have to mean joining a MS placement/course? If there isn’t a suitable specialist placement what about EOTAS?

Other people are going to be the barrier to DS1 coping with work too. What job doesn’t require communication &/or interaction with others in some form at least some of the time? I don’t think DS1 will ever be independent, sadly.

I haven't looked into anything yet - just enjoying DD2 going out again having some interaction. She is enjoying herself at times and she is starting to build some friendships with some of her course mates. She is due to stay in her current placement for 2 years and planning next steps is part of the curriculum. There is a career path she has always been interested in that would suit her personality and interests and if she was able to pursue it then it is an area of employment where remote working and lone working sometimes might well be possible. Further FE and HE would be needed though. There is a university in the next town that has a small campus running the course so living at home would be possible.

At the moment she finds it difficult to be "social" every day. The more interaction she has with people outside the house the more exhausted she is. We have been pacing her time for the last few years and we don't plan more than one thing per day eg appointments, hobbies. Spoon theory was discussed at her diagnosis appointment and there will be an offer for us and DD to attend a course to learn more about ASD.

Muddling, that sounds really promising that DD is able to enjoy herself again and starting to make friends. I hope the course works out, sounds like a good possible future plan too, especially as she could do uni without leaving home.
Good luck with ESA.
Ive just got a letter about DD transferring to PIP, Im not confident she will get it, a friend of mines daughter has just been turned down-she scored zero points and I cant figure out how that was possible !!! They have also gone for ESA.
The spoon theory resonates with us too and Im careful of adding too many demands or expectations.
It makes me sad when I think she used to manage a whole day at primary school often followed by an after school activity or friend around, a full day of being "on" seems impossible right now. But in truth she was often anxious and was masking, she doesnt mask as much now.
Today was a good day we had extended family round this afternoon and she come out with us to a visit a local beach and really engaged with her younger cousin. She stayed downstairs when we got back rather than retreat to her room, this is the first time she has managed anything like this for over 3 years!! She willingly came out with us and willingly stayed downstairs!! She was asleep by 7pm though- will see if she manages tutoring tomorrow...

How are thnigs with you zoo??

Not great runner but we plod on.
Girls returned to school yesterday,dd2 went in for 1lesson(agreed first week back would be home for frees,not in school on days has appointment,so off Wednesday for ASD/ADHD assessment and Friday for adult services assessment.she took last consecutive 25mg sertraline yesterday.we have a few alternate days to go then she is due a short break before starts Prozac.given she's suffering combination of anxiety and withdrawal/so body aware she's extra sensitive to how she "feels" she's been so anxious and tearful.shr had Ibs 4x and was literally shaking as I walk her in.did the lesson then cried as should be catch up coursework,revising etc she had a nap then a virtual breakdown over having to go in tomorrow saying it's too much,I can't do it etc.we went for a short sunset walk and I encouraged her to seek sensory comfort so she lit a lavender candle,had an icy drink and sat magic painting in her room by candle light with music on wrapped in fluffy blanket.she has completed so much and it's hard to know which to do.do I keep sending her in or accept it's too much and lose all her hardwork and a chance of uni in September,which is already upset her a year behind her peers?

Lil zoo adamant she was too ill - gut pain and felt sick.i can't exactly drag her there so what do I do with her also?,we are due at camhs at 9 for ASD feedback I'm certain she won't go as it's uncertainty and she cannot deal with that.if I can't get her out the door they will have to do an online result and I suspect she will refuse be on screen for that either.

At weekend D's and dd2 visited next county on bus.we has all Been due to go but I finally got words of availability from church with both transportation and strong boys to carry sofas so I couldn't be rude and ask rearrange nice not to be sit on floor,even if still sleeping on it!they had a good time.dd2 seems to like "running away" from her head and visit places.hrr anxiety after is horrific and at the time she texts constant.she likes having pip to buy stuff with too and got some paint by numbers at the works,sensory toys and trousers for her build a bear.wibbles in evening cos she's not like other nearly 19 year olds as likes "such babyish things" but I pointed out she's hurting no one it's a non issue if it brings her joy.

I've started practising stretching and breathing exercises in hope it'll be a positive habit the kids see me doing and to try manage my own anxiety which is getting very bad,but I cannot Medicate as I get so angry in initial phase I would consider myself a danger to all of us☹️trying to eat at more regular intervals and real food not sweets/snacks too

Runner I hope DD manages tuition today after having such a good, if exhausting, day yesterday. DD should get PIP. Your friend/friend’s DD should ask for a mandatory reconsideration and then appeal if unsuccessful.


Zoo good luck with the appointments this week, I hope you managed to get DD3 to attend.

Thanks bounce she wouldn't go,I spoke to them on the phone briefly.they still want to see her,but admitted they are unanimous she meets diagnosis criteria.however,they said something about whether the young person actually wants to be labelled the rest of their lives(?) I think I understood correctly in them meaning it could not be put into medical records,I dunno.its a bit vague tbh but we are go try again 3rd march to go and discuss what this means going forward.
I have email school ,and made clear until we have had that meeting I have no certainty about anything incl attendance.we have a school meet for this currently set for 6th march.
I'm not sure what to do for the best now.
dd2 has come home in terrible state again so I don't know about her either.do we hang tight and try to do the exams or let the hardwork of return and repeat and watch peers go to uni without her go.i just drowning in what to do for the best☹️

For DD2 I don’t think you/she should make any decisions right now. Mid changing medication is not the right time to make any significant decisions. Take each day as it comes and see the response to the new medication.

An assessment wouldn’t be undertaken without consent, but DD3 has had the assessment so any diagnosis should now be given regardless so push for them to give a formal diagnosis.

I really think you need to push for medical needs tuition and apply for an EHCNA and DLA for DD3.

Zoo- Sounds like DD2 really needs some time out, honestly Id let her have some time at home with no pressure. Has she been taught most of the curriculum by now? Maybe she would be better not trying to go to school and IF she is able to study/revise at home. Its sounds so tough for her, and frustrating when the end is in sight but really her MH has to come first. She may already have enough knowledge to sit Alevels if she can just revise, at worse case she can do an access course if needed to get into uni once her MH has improved-shes clearly very bright and very determined but its coming at a high cost. I hope her appointments go well this week.
Pleased lilzoo has got a diagnosis- I know people are sometimes hung up by "labels" but diagnosis can help and adjustments can then be made- she doesnt have to tell anyone if she doesnt want them to know. My DD19 has ASD diagnosis on her medical records but didnt disclose it to her work. I think diagnosis can open doors and probably benefit claims etc like DLA. So I would ask for formal confirmation of a official diagnosis.

DD made it to tuition today, very touch and go, only got dressed 5 mins before taxi arrived then I had lots of anxious texts whilst she was stuck in traffic so at one point I thought Id have to collect her - but she did it:)

Glad your DD managed tuition yesterday Runner - DD2 sometimes leaves getting ready for things until the very last minute and my stress levels go through the roof while trying to remain calm on the outside of course! Hope she wasn't too exhausted afterwards.

Zoo sorry things are so hard for DD2 at the moment and hope adult services are helpful when she sees them. Glad DD3 got diagnosis - must be a relief for you. I don't understand why CAMHS would go through assessment and diagnosis then ask if young person wants label? What is the downside if as Runner says they can choose who to share with? I am confused by that! Is DS having a good half-term?

Hope everyone had a good day.

Apologies Zoo, reading Runner and Muddling’s posts I think I have misunderstood. I thought you meant DD3 meets the diagnostic criteria but they won’t give a formal diagnosis unless DD3 wants it. If I have misunderstood and DD3 has been diagnosed that’s good news.

Bounce - I think you've worded what I thought Zoo meant in a much better way than me!

Agree with bounce zoo, push for formal confirmation of diagnosis .
Good luck with todays appointments

Can I please join too? I am realy struggling to support D (Yr8) who is spiralling wiht anxiety and suspected autism. Spend so much time talking to school and now found out autism diagnosis appt wait is stupidly long (way in excess of 12 months) Has anyone gone private?

I really don't want to go private as I need to get some CBT for DD to manage anxiety in the meantime and we are not made of money. DD is very set on havign this appt though. An advice re private/waiting for an NHS slot even though so far away? Are they viewed in the same way.

This really all feels so overwhelming. My DH just is useless with this and does not even communicate about it, it's all on me.

All advice is very gratefully received!

Welcome purplepandas.

What support is the school providing? Have you applied for an EHCP?

If money is tight don’t feel you have to go private for an assessment. Support is based on needs rather than diagnosis, so a diagnosis won’t necessarily result in more support.

The school, LA and NHS can’t refuse to accept any diagnosis just because it is private. The validity of the assessment and any potential diagnosis is less likely to be questioned if the assessment follows the NICE guidelines and/or the HCP also does/previously has done NHS work.

Zoo I hope today’s appointment went as well as could have been expected.

Welcome pandas
Bounce has said everything so well about the process.its no comfort but whilst in compulsory education (ie under 17 years) schools are a bit more pliable for support<in my experience>
You mention DH,have you any other children?do you have family of friends to talk too?it's genuinely very hard supporting anxious children.the emotional drain can be huge and it's vital you have somewhere to offload (we are always here to listen should you prefer not to ,or don't have,anyone in RL you feel you can open up with)and make time for yourself (even just a few minutes).you cannot pour from an empty cup!

Bounce turns out was initial contact we have yet more paperwork to do,choosing either ASD or ADHD -whichvever is "more meaningful to us" as they only do one at a time,if felt potential for both impacting you can opt for one complete process then start again for the other..however we full firms,they meet and decide if we meet diagnostic potential and then either discharge or we join the wait adult testing....which is currently around TWO YEARS..she could sense our dismay and the urgency given DD is drowning with a levels,and uni is hanging in the balance and added full time education does allow bump up but currently clinicians are already fully booked til June so expect it to be around a year minimum☹️
On this basis DD is ready to give up.declaring so much work to catch up on ,not revised etc and prospect not be able manage uni anyway what's point!I did my best to be positive,adding we have finally got her adult services assessment on Friday this week(that 6 week wait being 6 blinking months in the end) and they're really more responsible for supporting anxiety related issues but camhs was so unhelpful she has no faith this will be any better.
Cue a mini meltdown,followed by snowballing it's not worth it/I can't do it)what's the point til I reached my limit and said slightly sharper than I should've if she was going to keep snapping at me(we were about to decide on TV and dinner time) I had reached capacity for the day and was going to sleep I laid down and she stomped back upstairs, crying ...didn't return so I went to sleep and now wide awake and very worried about her and brother of us ate anything in the end!

*neither of us

Hi - can I join please?
DD age 13 privately diagnosed with ADHD/ASD after years of anxiety and school refusal. Two admissions to A&E since Christmas (overdose). Out of school since January.
I guess we are finally on the CAMHS radar and school is putting together an EHCP.
To be honest I am at the end of my tether. At this stage my feeling is that a short course of medication might at least get her engaging with life again - but CAMHS is very reluctant to go down that route and our private psychiatrist (who previously offered sertraline), has said that they cannot be involved now we are with the CAMHS crisis team.
Apologies as I haven't read the whole thread but I think I may belong here.

@purplepandas not to alarm you but your post sounds familiar. We went the private route and school accepted the diagnosis with no problem. We are waiting to see if CAMHS accepts it so we can move through the system. My DD is so good at masking she never met the threshold for a full CAHMS assessment. CBT sounds like a great idea and I am looking at that myself.

Welcome Cowzen.

If DD can’t attend schoolthe LA must provide alternative arrangements, are they? You say school are putting together an EHCP, have they actually requested an EHCNA from the LA?

Zoo I hope this morning DD2 is calmer. I’m sorry the appointment wasn’t what you expected. I was surprised at the short wait times, I think I mentioned when you said you had an appointment that adult wait times are often longer than paed waiting lists. Did you/DD decide on ASD or ADHD?

cowzen welcomebounce we felt ASD was more of a priority,given the struggle to emotionally regulate when anxious/overwhelmed,difficulty with social cues and situations and the extensive self soothe habits she's developed

Zoo- just to say that a friend of mines 18 year old daughter was referred to psychiatry-uk.com/right-to-choose/ by GP for ADHD assessment-got one within a few months. I dont think they do Autism assessments but worth asking your GP if they can refer DD for ADHD, if shes over 18?
Im sorry appointment wasnt quite what you thought it would be, I hope Fridays appointment goes OK.

Welcome@purplepandas My DD now 15, started to school avoid, have spiralling anxiety in year 8, school suggested possible ASC and after about 6 months of form filling triage she was finally accepted onto the waiting list which we was told was in excess of 2 years. In the end we went private which from cost around £1700 , so huge expense (we used a small inheritance) . Private diagnosis is accepted- just make sure it is a multi disciplinary team that assess- clinical psychologist, speech and language therapist and paediatrician. The professionals that did my daughter's also work for NHS.
I successfully applied for DLA prior to diagnosis- this is worth looking into if DD needs more support than an average child her age, money can help with private therapy. Its a very long form but read the notes, it will help reframe the things may do every day that have become your normal, and put worse day scenario.
We also applied for an EHCP as school became such a struggle. The official line is that diagnosis arent necessary but I do think it helps. My DH also sticks his head in the sand and all the appointments, form filling, school meetings etc are down to me...

@cowzen Welcome, Im sorry youve had such a difficult time. It is draining. My DD was prescribed setraline, which helped somewhat but not sufficiently and then tried flurexotine which worked better for her, but everyones different. It took a long time to find right medication and right dose but medication was helpful. Takes a while to work and there maybe side effects initially so not a quick fix but something worth considering so would talk again to CAMHS. CAMHS told us DD didnt need to see a child and adolescent psychiatrist- they are the only ones who can prescribe- I think it was down to staff shortages tbh- is your DD seeing a Child and adolescent psychiatrist as part of the crisis team?
I echo Bounce about asking school and your LA for alternative provision (health needs education service) whilst out of school and do chase the EHCP and I would also look into applying for DLA.

Zoo Just looked at they website link and they are currently offering adult ASD assessments as well as ADHD see link below

psychiatry-uk.com/right-to-choose-asd/

Id follow their instructions and go and see your GP and ask for a referral to them

Thank you so much for letting me join and for the kind and helpful welcome. Sorry for all the typos, it's been a crappy week!

@1bounceforward2back , school have been good actually but this is all very new. I can't believe I have missed it until recently. SENCO good but I think communication of info to teachers is tricky. There was a stressful incident this week which whilst not nice for DD, has meant that I think all teachers know now not to call on her for stuff (it spiralled). Her tutor is lovely for which I am very grateful. Had not even considered an EHCP.

I have decided to go private. I think I was freaking out at the cost of CBT and the assessment (some are £3K!) but I managed to speak to a lovely CBT therapist today who was way cheaper than the £130ph one I contacted yesterday. I feel hopeful that this one will help, she was lovely and very interested in DD on the phone today. I got a really good vibe from this and DD has agreed to try an initial online meet.

@Stilllivinginazoo , I have confided in a few people here. Some people have no idea of how draining this is (no reason they should), I think I have spent three hours of my work time on this today and two hours yesterday. That's obviously without the supporting DD part! Thanks for checking though. Jus sayig how exhausting made me feel better. DD does not want my family to know at all so a bit trickier!

@cowzen , thanks for letting me know that my post sounded familiar. I wish you well and appreciate your comment about the private diagnosis, that does help.

I will try and keep up a bit and be a bit less me focused!

Purple, on their website IPSEA have a model letter you can use to apply for an EHCNA. I second Runner’s advice to apply for DLA too, the Cerebra guide is helpful when completing the form. There’s no pressure to keep up with the thread. Post as much or as little as you want/need.

Zoo I hope today’s appointment is helpful.