Parents and carers of anxious teens(part 7)

[Stilllivinginazoo]

Goodness,seventh thread!
Welcome back to those who have been on board with me since the days DS was first struggling,and hello to new faces

This thread is for those who care for anxious teens.some of us have diagnosis of ASD/anxiety/depression,others are encountering and navigating escalating symptoms that are starting to prove troublesome

This is a safe,non judgemental space to share ideas,offload worries and provide support and kind words for those deep in the trenches

We get how utterly exhausting it can be and are not afraid to celebrate the small wins that in regular circles would be deemed as insignificant as participating in "normal activities"

We have the feedback appt 6th November. It's a different feeling from when ds got his diagnosis - obviously with him we knew he'd had difficulties since birth and his diagnosis was fantastic as it allowed him to access so much support.
Because he also has cognitive difficulties, he fits right in with other autistic young folk with learning difficulties. There is no masking going on. He is a very happy chappy and just has very comfortable, routine activities that totally satisfy him and fill his days.

Eldest dd who I also strongly suspect is ND - she has her art which is very successful for her and is very comfortable with her friendships. She's just found a life that is right for her.

My other boys - well they get away with it a bit more because it's not too unusual for boys to be very mechanically minded (ds1) or mathematical (ds2) ds2 i think does lean more to the adhd (probably mixed profile)

But dd2 - she's not got a talent as such. Just an all rounder. I suppose i always just thought she'd get a job and enjoy a social life alongside. But if you can't feel excitement, look forward to things, imagine how things will pan out, life is bound to feel a bit 'meh' I am an all rounder too - no specific hobby or talent to absorb myself in so my joy in life comes from social contact. And i do really look forward to meals out, holidays, trips away etc etc. But if dd cannot form pictures in her mind, she can't really paint that mental picture of what good thing might be coming her way.

On a positive note, she is planning to go to the theatre with her 2 new pals from college. And she did initiate that. They will be able to book online - it just saves booking fees if she could have bought at the box office.

Just on the emotions thing - yesterday dd was asked about happiness. She answered "when i laugh, i know i'm happy"

That is the same logic as ds used when he was much younger (about 5)

The sun went into his eyes and made them stream with tears. He felt his face and said "i'm crying. I must be sad!"

We thought that was very funny at the time but i just can't imagine what it's like not to feel

When dd was asked what made her sad she said "when someone dies"

But dd has never experienced anyone dying that she has been close to!!!

So - a very sterotypical response there.

We lost our old cat in January and dd spent more time with the cat than any of us. She did cry when the cat died. But obvs any feeling was short lived!

By contrast, when my childhood cat died, i was 12. Never felt pain like it. The loss was almost too much to bear. I can definitely describe that pain that is a cavernous hollow deep inside that just breaks you into pieces. Obvs i have had a few losses since!

But it's the highs and lows of life that make life so rich. I mean no one wants to feel that sickening feeling of loss - but then, if you can't feel that, do you also miss the moments of intense joy that make you feel so alive?

@DarkChocHolic - trip to London will be amazing! I love London. Be interested to see what plans she comes up with!

Maybe give Covent Garden a skip - dd found the crowds there far too much.

Though she did get herself some platform docs from the Doc Marten shop there much cheaper than here at home.

I have a funny story to tell though about our visit to Buck Pal.

I had got a carer ticket as i had ds2 with me as well as dd. But i didn't apply for the access entrance as ds2 is physically able.

Buck pal staff got in touch and said i'd be better getting the access ticket to avoid queueing for ages.

So we had tickets for 'East entrance access gate"

Well - when we got to the Palace, it is not at all obvious where this gate is. So i worked out where the East side was and went there. Nothing. I saw 2 staff inside the Palace gate, a short distance away.

I called to them. They said we were at the right place and they were expecting us. Next thing, the staff member is on her walkie talkie.

Within moments, a buggy (like a golf buggy) comes sweeping over the expansive gravel area from the West side of the Palace. Just for us!

Ds and dd were mortified!

All the crowds were looking through the gates as we got whisked right across the front of the Palace and round the back!

Ds got a special visitor lanyard which he promptly turned over so 'special' was hidden.

Honestly, i was just about ending myself. A real highlight!!

Anisty it is* *not surprising DD was overwhelmed yesterday with the ADOS, theatre tickets, shopping and public transport. DD would benefit from learning about pacing and spoon theory.

Although some autistic individuals struggle with recognising, identifying, understanding and expressing emotions, most feel emotions even if they aren’t the emotions most would associate with a specific situation. Feeling things is separate from being able to recognise, identify, understand, and express emotions. For most of us, it isn’t that we don’t feel anything.

Happily, dd has bounced back today @1spinforward2back . She's had a good day at college and the party seems back on tomorrow. She is borrowing a dress from one of her college friends and dressing up as a spooky clown.

You're right about her needing to pace herself. Obvs not her fault that 3 parties come back to back but it now seems she is going out for lunch with her college pals tomorrow. And they are going to book those theatre tickets online. Then she has the party tom eve.

Then work on Saturday and another party Saturday evening.

Remember though - she doesn't think she's autistic. Nor does she want to be. Maybe once she gets a diagnosis she will stop trying to go at the pace of an NT teen.

Yeah, i see what you mean about emotions. She says she just feels the same all the time. Whereas teenagehood is usually an absolute whirl of intense emotions. I feel she's missing out - but of course i'm looking through a different lens altogether and remembering my own teen years.

Pacing isn’t only for ND individuals.

It's not a concept I need for myself @1spinforward2back - obvs i must have slowed down a bit as i'm nearly 60 now but, as an NT person, i would think nothing of juggling many, many things during my day and although i probably do get a bit more tired, it is a physical tiredness, not a mental one.

Certainly, as a teen and through my 20s, my day was absolutely chokka packed and then every single weekend we'd be away out at 10pm ish to pubs and clubs and not home til 2 or 3 am. Did have a very long lie on a Sunday til at least lunch time and then away again for a new week.

And i think that kind of energy level isn't at all unusual for your average young person. That's the time you can just burn the candle at both ends and really get away with it for a very long time.

I'm sure this will be what dd's friends do (though i was 18/19 plus til i was staying out very late; had to be back by 1am at 17) and dd is pacing to a point as she does turn down a lot of social invites.

And come away early from others - certainly i remember last Christmas she went away to the Christmas markets with her pals and came home around tea time whereas her pals stayed on and had an evening meal, getting home 10 ish.

Hopefully once she gets her diagnosis (and i think she will) she will be able to accept her limitations even more but of course there is that balance always between pulling back from so many things that it then causes anxiety to do those things. And, unlike ds2 or even dd1, dd2 does like to ally herself with NT teens. So she wants to do all the things they do.

My eldest ds is a good example of pushing out of the comfort zone - he has done much better actually living away from home and seems to have got his life in order. He lived with a partner in a rented flat. That relationship split and ds had to get jobs urgently to pay his rent alone.

He got himself 3 jobs, one of which was a customer-facing role in Next. He said it gave him so much more confidence and, if he had not been in that emergency situation where he had to get cash fast, he'd never have gone for that job. He got 2 other jobs at the same time (all part time) and managed to keep paying his rent alone for over a year til he met a new partner. When push came to shove, he really turned to and got himself out of a hole.

Though he later exchanged all 3 jobs for one better paid night job!! So maybe he needed that peaceful night job to get over it all🤣

He's back in a day job now and doing fine. He's done amazing especially as he left home at 18 without any school qualifications really at all. He has just got himself into minimum waged jobs and worked his way up a bit.

I'm going to ask around some of my own NT pals to see if pacing is something they do. I do suspect I lean towards the adhd side as my energy is boundless. I'm still pretty bouncy now tbh. Whatever needs to be done in my day, i just crack on and do it. Probably a bit slower if i don't have as much to do - but the energy will ramp up whenever needed.

What does everyone else think on this thread?!

for your average young person.

DC of parents on this thread aren’t typically your average child or young person, though. Otherwise parents wouldn’t be posting on here about their DC’s mental health difficulties &/or other additional needs.

Pacing is about the physical aspects of doing things as well as the psychological side.

I get that @1spinforward2back - just at the moment dd is choosing to associate with 'average young teens'

I was responding to your 'pacing isn't only for ND individuals' and thought you meant that everyone could benefit.

I think i get what you mean - that you don't need a diagnosis to use pacing?

And some NT people could benefit from it if they need to slow down a bit?

Yes, i'm with you there. We can all burn out if we overdo it for sure.

Knowing about pacing does help everyone. Many without disabilities (not just ND) pick up the skill and adapt naturally. Some with additional needs (not just ND) &/or medical conditions need to learn about it rather than just pick it up naturally.

Even if DD is in denial about her additional needs, it would still help her to understand pacing and spoon theory. Hence me mentioning it. If you don’t want to bring that up with her that is your choice, obviously.

My comment about typically developing peers was separate to pacing and in response to you posting about energy levels in average young people.

Hello everyone! I know I have not been around for a bit and hope everyone is doing ok and looking forward to half term. I know for many of our dcs it has been a roller coaster start to the academic year and hence a tiring period for all of us.

Things have improved on our end. DD has settled into the course well, enjoying it and getting on with her coursemates plus making friends. She has finally found an equilibrium with her flatmates, yes they are not going to be besties but she rubs along with them and appreciates they are all nice people! And the texts have dramatically gone down to hardly any. I am relieved but of course I am not taking anything for granted! I am hopeful it carries on this way though and keeps getting better/easier. Fingers crossed.

I wish everyone a calmer rest of the year to Xmas.

Yes, i do see and agree with what you're saying and I expect they will come up with recommendations at our feedback meeting on 6th November. I wouldn't be at all surprised if they do bring up these exact strategies.

I know with ds we got a very comprehensive feedback meeting, including a full report, full seperate document with specific strategies to help him and also a parental course for us to learn how to implement the strategies.

That was NHS and ds was still at school when he got his so I don't think this one will be quite as comprehensive as that but it is a full hour we get with clinical psychologist and speech and language therapist so hopefully dd will be receptive to their suggestions.

I think maybe once dd gets her head round the fact this won't change her as a person, she will accept it. She's maybe looking at her brother and obviously she is nothing like him. She will still be able to leave home and do what she wants to do - as long as, like you say, she just makes adjustments to the pace of demands.

Fantastic news! I bet this is a weight off your mind. Long may it continue🙂

Well dd does do excitement after all! And has had a very exciting day as, on leaving college, she and her 2 pals saved 2 dogs running in a busy road and the grateful owner paid out 60 quid reward. 20 quid each!

She has just left for the party looking absolutely AMAZING!!! She does do a great job with the make up and had made some accesories for her outfit.

Hopefully she will have a great time. 🤞

Meanwhile a letter came from the hosp saying they'll add her to the list for a 60 min surgery for laperoscopy and coil fit but there's a risk of infection, damage to other organs necessitating further surgeries (yes, plural!) DVT and PE.

I suppose they have to put all that.

I just get a horrible feeling that dds periods are much more manageable now her stress is down and i'm actually thinking they might just be normal periods that she has difficulty with for sensory reasons.

It's so difficult to sort the wood from the trees sometimes!

Something to make you laugh @Runnerduck34. Someone in your LA has been told by the LA they haven’t lost an appeal for EOTIS yet. You have to wonder how the LA thinks they will get away with exclaiming such rubbish.

@1spinforward2back

OMG! that person is either lying through their teeth or is utterly deluded and believes everything their employer/the LA has told them!

The thing is there is no learning from tribunal or LGO decisions, they just carry on relentlessly making the same unlawful decisions.
I made a point of emailing the latest tribunal decision to every person in the LA we had dealt with so they knew the ruling and I did the same with latest LGO decision, after our case worker at the time had no knowledge (or denied any knowledge) of the our first tribunal order or previous LGO decision.

On another point can I pick your brains?
AR meeting held 10th October and we've heard nothing, are they meant to issue a report within 14 days even if there's no changes for us to comment on?
And then finalise 4weeks after that?

Within 2 weeks of the review meeting, the LA must circulate the report. Within 4 weeks of the meeting, the LA must inform you if they propose to amend, maintain as is or cease to maintain. If they propose to amend, they must send the amendment notice at the same time. If they amend, they must finalise within a further 8 weeks.

Hello I wondered if I could join you? I’ve read a few of your posts and hadn’t thought of looking in MH section for support which is bonkers really when I look back over the last few years with our youngest teen DD. She is autistic and I fully suspect adhd but has not attended school for a year missed whole of year8, we are in appeal to change to eotas on the ECHP.
She is due to start Sertraline after a MH assessment yesterday for ocd & anxiety. I was feeling positive about trying this but have just been reading about side effects or feeling worse initially which has worried me are any of your teens taking it? She’s very sensitive to any changes in her body but we need to try something as she’s spiralling again after we thought we’d stabilised her after a horrid year.

Welcome @Autumn00Storms 🙂 I'm afraid I can't help with the Sertraline question but hopefully someone will be able to soon.

All quiet here. Dd went to all 3 parties and seemed to manage ok but skipped her riding lesson on Monday.

Today she has a hospital telephone appt about the anaesthetic for her gynae investigations.

Crazily, the hospital has MY phone number on file. And i didn't want to give them her number at this stage in case in mucks up their system and she doesn't get called at all.

So, i'm going to drive up to the College later and she can take the call in the car. She'll be pleased to get a lift back as the buses are very slow through town due to major roadworks.

I think i will be able to avoid the roadworks🤞

@Autumn00Storms
Welcome and sorry you are here!
I have a DD who is 17 and she is on a cocktail of drugs sertraline being one of them.
She started on fluoxetine which made things a lot worse. She took another OD when on fluoxteine.
After nearly 4 months, she switched to sertraline and it suits her much better.
The first few weeks on any antidepressant are quite hard and you need to be watchful of her.
They say it takes 8 to 12 weeks the positive effects to start. I know it feels like a long time to wait but many report seeing benefits as early as 3 weeks.
I hope you find it is helpful. Do not hesitate to nag the GP or the prescriber if you are worried.
I would have preferred a smaller dose for a longer time but the psychiatrist wanted to ramp up after a week.
We are now on 125 mg. She went to 150 but she felt very anxious so we dropped slightly.
I hope this helps.
Do feel free to reach out in the group.
Xx

Thanks she’s on the lowest dose for 14d with a review call at 1-wk & every 4 weeks until she stabilises hopefully. I think when your “normal” is so different from others it can be hard to see the wood for the trees as we have been scaffolding her for many years. But we’re scared seeing her spiralling again. I do have another older teen DD who has coped much better so far with life so have some experience of teens in general and this tricky part. It’s also not great that I have elderly parents with declining health whilst juggling the menopause it’s certainly not an easy time of life.

@Autumn00Storms welcome and yes sorry you have to be here. We are a supportive bunch and understand. Feel free to rant or ask questions, someone will usually be able to help or simply hold your hand. Parenting a child with MH is often overwhelming and at times feels like being on a rollercoaster. If you do suspect ADHD, is there a chance you can get an assessment? I found with my dd that the adhd medication did help, it's not a miracle cure but it just makes things a bit easier and helps with the anxiety and emotional deregulation. Although I understand as your dd is already dealing with a new medication you may not want to start thinking about something else! So feel free to ignore that suggestion.

Here things are ok although dd had a bit of a bad day, nothing terrible just one of those days but my dd can take minor setbacks pretty badly so have been fielding a bunch of texts, sigh. Trying to remember to have faith in her and not step in. Sometimes things don't go to plan and she needs to learn to cope with that feeling (and more importantly I need to allow her to!!!!).

Thank you it’s helpful to hear from others in similar boats as my contact with other parents has dropped off a lot as we home ed more and I’m still juggling my job working from home. We did try to get a adhd assessment as I can see the clear linkages & her struggles but she wasn’t attending school at the time I spoke with the GP so school wouldn’t complete their forms so yet again we got rejected by peds & camhs. So we wait to see if these anxiety meds can help stabilise whilst finding ways to work with her. It really helps that by home edding simple stuff like not having to sit at a table or use a normal chair to do school work. We use a yoga ball, a stand up desk or sit on sofa or floor so she moves around learning we do short bursts. Whilst still covering gcse level work effectively but it’s exhausting for me facilitating it all.

I hear your struggles @Autumn00Storms . I was in a situation really bad back in 2010 when i was probably at a similar life stage to you - menopausal, working full time from home (childminder working 8 til 6 mon to thurs)
5 kids at home ranging from 17 down to 3. All the mortgage struggles of the financial crash happening at that time.

And then - seemingly out of the blue - DS1 walks out in front of a lorry.

Fortunately he only suceeded in badly injuring his legs but 2 months in a far away hospital, driving an hour each way to see him (and DH and i had to go seperately as the hosp had a ''flu" policy so our kids could not visit due to infection risk)
So 2 months driving an hour after a day's work and no food coz the hosp cafe shut at 6. 2 months on 11pm Maccy Ds en route home - you can only imagine what state we were in. Broken down!!
DS diagnosed with prodromal schizophrenia and was supposed to get CAMHS follow up on discharge but the heavy snow hit. They saw him once, obvs decided they were way out of their depth and offered no more appts between November 2010 and March 2011.

They were always useless, even pre-covid!!

Anyway i won't go into what happened next as i'd be writing an essay. Suffice it to say, the human spirit is a strong thing and we all got through without breaking down.
Fast forward to today - DS is now 28, in his own (rented) house with his fabulous long term partner and one year old.

He thinks he has adhd. I think he's autistic. Probably both. He's not schizophrenic. He never went on medication. In 2011, i was begging drs for meds right through that year but they had a blanket no for under 18s then (or at least that is what we were told) No anti depresssnts and no anti psychotics. He had been on propranolol for a benign tremour before the incident but that's what they figured had caused his hallucinations so that was stopped. Maybe that is why nothing else could be prescribed.

He left home at 18 (and, tbh, that was a massive weight off us as some of his behaviour was quite bizarre) and, through hard work, he has turned himself right around. I really think he was under an incredible amount of school stress, felt he was failing in all aspects of life and once he got away from the school system (and his family!!) he has been able to set up a life that is easier for him to manage. He's had another long term serious relationship prior to this one but his current partner is very calm which is what he needs. It's been 5 years now so long may it last!!

Anyway - DS1 is not the reason i am on this thread. I'm here with DD2 but, tbh, after my experience with DS1, her issues are a walk in the park. She took an overdose last year of 8 paracetomol. More a cry for help. She hated school. Currently getting private autism asst after CAMHS kicked her out.

She has really settled down now she's out of school and in college.

We have this side issue going on with investigations into heavy and painful periods. She is on the mini pill. Can't have combined due to migraines.

She had her phone appt yesterday in the car en route back from college. Next step is to get bloods done at the hospital.

And it sounds like she'll get this laporoscopy very soon actually.

She has decided against the coil.

She seems to be coping much better with periods, headaches and palpitations so much better now she has left school.

I do get a feeling that they might not find anything with the laporoscopy but we will see.

. I also have a 26 year old at home (dh is still here too; this didn't break us!) who has autism and learning difficulties to a disabling degree but (ironically perhaps!) he is the most mentally well-balanced happy chappy! He goes to supported activities every day and even does some paid work in a supported environment on Saturdays. He is always smiling and very well liked.

I am older now and don't need to do a lot of childminding any more so am very fortunate to have plenty of time on my hands to sort out any crises. Our older ones have left home and everyone is independent really. Even my 26yr old is ok if his routine stays undisturbed.

So - @Autumn00Storms - you will come through this and out the other side safely. But, in the meantime, keep talking here for support.

Autumn00Storms DS takes/has taken a few antidepressants. A couple with side effects, a couple without.

Gosh @Anisty that a hella of a lot to cope with and really highlights how utterly crap the health services are that some preventative help early in a coordinated way across services would help so so many people but we still only treat when at crisis level or unless you get your credit card out like we’ve had for do to get private help earlier. I’m watching DD now bring herself down from a meltdown as she was hungry but couldn’t decide what she wanted & cook her own noddles for lunch which is nice. As she’s now developing more skills to help herself which is what we’ve been working on this year as much if not more than doing “school” work.