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"

@Okisenough @Theordinary
thanks for your advice, yes she saw a psychologist a few years ago which did work wonders but she’s adamant she doesn’t need any help. She actually seems quite chirpy and positive about life at the moment as long as we don’t talk about college. She’s certainly in a better mindset which makes this social anxiety even more frustrating.
In terms of changing to a creative subject we’ve discussed and discussed 🙈 she isn’t interested in a career involving art and hated gcse despite getting a 9! 🙄 so not convinced in that being a positive.
She does art as a hobby at home and singing, piano and guitar as hobbies so she has plenty of opportunity for creativity. I’m also hoping she can join an art or music extracurricular club once they are allocated.
Thank you everyone for your lovely thoughts xxx

To have art and creativity in your life is such a gift. Whether she makes a future career of it or not, if it brings joy to her life that's fantastic. Sometimes studying a subject sucks the life out of it a bit I think. Sometimes it's best kept as a hobby so it cam remain a pleasure.

@roodledoodle83 sorry to hear its been a tough week, I hope next week is better, medication and therapy have really helped my DDs anxiety.
It's very positive overall she in a much better frame of mind.
@okisenough, wishing your DD lots of luck at uni, I hope she settles and is happy.
Does she have DSA/mentoring in place etc
Is she living away? Apologies if you already said and I forgot!
@theordinary I know what you mean about should you be pushing for more, DD is demand avoidant and I've become used to it and accept that I can't see the carpet in her bedroom, however I saw tutor feedback recently and it was a wake up call about how her PDA impacts her education prospects.

Hello Skip, how are you? Unfortunately due to timetable it's going to be tough to reschedule OT, have one potential swap which I'm going to discuss with a mentor tomorrow.

I've had a full on week, had meeting with LA psychologist during my lunch break on Thursday followed by a meeting with tuition centre in lunch break on Friday . Frankly I'm frazzled and stressed and I've been allocated a new project at work which frankly I don't have headspace for.
However on the plus side DD has had a very positive week and managed her whole timetable! I can't remember the last time that happened! Let's hope LA don't screw it all up at AR next month.
I'm currently sitting in the car waiting while she trials a new social group for anxious autistic young people. I am not allowed to go home in case she wants to leave.
She's been on waiting list for 13-17 group for 2years so now she's been told she can join the 18-25 group earlier-she's 17. There are 12 boys 3 girls which is probably too boy heavy for her. When I went in I couldnt see any other girls and all the boys looked like they had higher need, so not sure it's going to be a good fit. However she hasn't text me to say she wants to leave, so maybe it's OK.....

How did the group go, @Runnerduck34 ? Hopefully well after so many months on the waiting list.

Good to hear everyone else's updates. Social anxiety is a tricky one @Roodledoodle83 That feeling of being judged but, with your DD feeling chirpy about life in general, that is bound to bring her self esteem up and give her a chance at connecting with her peers over time🤞

Some progress here. It turns out DD was feeling under pressure with all the questions fired at her in the appt - her verbal processing is on the slower side and it seems that the conversation was going too fast for her. She did not want to admit she was having better days in case she got no help.

It turned out, when i phoned DD1, she has also been referred for an urgent laporoscopy for endometriosis as well!

I didn't realise the recovery time can be quite long and DD is worried about that with her course.

DD1 (who lives in a different NHS area) has been told the urgent wait list is 36 weeks (!)

So - DD2 says she wants to join the list now and then think about it more over the weeks. Sounds sensible.

Have any of you any experience with the Mirena coil? What could be the negatives and, on balance, do positives outweigh them?

I suppose a concern would be DD does not get on with the coil and wants it removed - she is not going to be a priority for another GA just to remove a coil. I have never had a coil fitted. Are they less painful to remove than to fit?

Apparently, for under 25s (that have never been pg) it is too painful to fit a coil without sedation as the womb is small.

It wasn't the idea of having a coil fitted that made DD cry - it was just having so many questions and options fired at her. She is willing to try anything that helps.

As for DD1 - she's is her early 30s and very excited to see if she has endo or not! She was running the combined Pill back to back for years but some horrible things (she said she'd rather spare me the deets!) have happened recently so she's been referred for this urgent scan.

Cant believe this is both my DDs. I never had any of these problems; it's awful for both of them.

On a positive note, all good at the College.

@Anisty i had a Mirena in my 30s which was great and one now for HRT and to manage my horrendous peri meno periods. I must say, I'm so happy with it. After 8 months or so, no periods anymore. No side effects so far. I know the dose of Progesterone is miniscule in comparison to the combined and mini pill. There's lots of horror stories online about the Mirena but it's excellent for endometriosis and heavy periods. Might be good for your Dd? If she's having surgery I would say it's a great opportunity to have it inserted under anaesthetic as the only draw back for me is the uncomfortable insertion.

Sorry I've just seen you asked about removal vs insertion discomfort... Far easier coming out than going in. I've had a few now (including copper iud) so can be sure about that!

Thanks @Theordinary - that is SO helpful to know

@Runnerduck34 Thanks. Hope the group turned out ok and glad to hear about your dd's positive week. Ultimately, we didn't apply for DSA, she didn't feel like she needed anything that it would cover. I am not sure this is the right choice, but I went with her decision. She still has counselling which again she doesn't feel she needs but has agreed to keep going with it for a few more months to cover the move and settling into university. I told her that she could always go down to one session every two weeks so we will see. Things are still relatively calm here but I can feel the stress/anxiety slowly rising as we get closer to the leaving day. Yes, she is moving out which does scare me. Since school finished (forever hurray), I have allowed the years of stress and exhaustion to take me, I've been on autopilot so I have let things slide a bit. I haven't done a deep dive into the student support available at this University or how to let them know about her ADHD and anxiety. These are things I need to rectify. On the plus side ADHD meds have been easier to get hold of which saves a lot of time and have managed to stock pile some for emergencies.

Wishing everyone a positive week.

I wanted to ask if anyone has any experience of PIP applications? I have someone coming round tomorrow from DWP for a meeting, as I have asked to be my DD's appointee if she gets awarded PIP. My argument for applying is that she needs a lot more input than your average person of the same age. I manage medications, medical appointments etc. Also manage her time keeping and provide a lot of emotional support. Has anyone had a successful claim in similar circumstances? She does go to college and I don't know if that would mean she's deemed to be completely independent. The reason I would be the appointee is she would spend it all on vodka and vapes!

Hi @Theordinary - my middle DS was awarded DLA at aged 3 at middle rate so i applied every 3 years right through his childhood, always successfully.

They were slow with PIP roll out in my area so he stayed on DLA well beyond 16. I applied to be his appointee when he turned 16.

The day they came actually worked great. We got a letter to say they were coming, it was school hols. So i estimated the soonest they'd arrive would be 9.30 (thinking they'd check at office first)

Dot of 9, banging on the door. DS still in bed! He stumbled down in a right mood and stared at the wall throughout!

So that was granted right away.

Then, later he got PIP. When he got UC, we had to go through appointee thing again. His support group felt i should give up the status so they could support him to apply for UC but DWP visited and said i should remain appointee as giving it up had a lot of disadvantages.

You might get it - but they will speak to DD. If she has not yet had a successful pip claim, you will need to wait on that outcome first.

The site benefits and work is a minefield of info. You do need to pay a small fee to get onto their forums but they know the system inside out.

My DS is now under a legal guardianship which gives us much more powers over his affairs, so not quite the same as your DD.

It will all depend on how capable they deem her to be. Written reports of cognitive ability always go a long way - but they will get it all from your PIP application.

@Theordinary attending college doesn’t mean DD isn’t eligible for PIP or that you can’t become appointee. To become appointee you need to show DD doesn’t have the capacity to manage the claim herself. spend it all on vodka and vapes! would be enough of a reason to become appointee. For the PIP application itself, it is worth looking at the points table to see where you think DD will pick up points. For example, needing supervision, prompting or assistance with medication would get 1 point for the daily living component. Some use the benefits and work guides. The best free one I know of is this one. Not my LA but a good free guide.

@Anisty a friend’s DD with additional needs had her coil inserted under GA and removed under sedation.

@Runnerduck34 I hope the group went well. It’s busy here.

When he got UC, we had to go through appointee thing again.

UC should not have required this. Being appointee isn’t specific to DLA/PIP. It covers UC too.

If she has not yet had a successful pip claim, you will need to wait on that outcome first.

No you don’t. You can request to become appointee when first applying. Or for rising 16s, before you even apply.

https://www.benefitsandwork.co.uk/

@Anisty I don’t know why you have tagged me in the benefits and work website?

Thank you both!

Thanks @1spinforward2back - we definitely did need to go again but there is a story behind it.

You're right - it isn't benefit specific and that's what caused a problem when DS support worker went to the JC to help him through a UC claim.

No can do because DS is under appointee (me) and i wasn't there.

The support worker said most young folks in the autism group manage their own claims with help from support staff.

So DWP came to the house to see him and me with a view to having it removed. The conclusion was this was not a good idea in his case.

Sorry re other mistake - it's 6 years since i needed to put in a claim and the next one will be for ADP (Scotland) current pip is on til NoVember 2026 though so it might be left til then🤞

Lol so sorry @1spinforward2back - i am really new to this site🤦‍♀️ it was meant for @Theordinary . Oops!!

* 4 years since i claimed. DS got a 5 year award, extended to 6 due to Covid **

Think it's me that needs a carer today lol!!

The support worker said most young folks in the autism group manage their own claims with help from support staff.

@Anisty this is probably because that is what is easier for the LA rather than what is in the person’s best interest.

You're right @1spinforward2back - people over estimate DS's ability all the time as he looks very normal. I think the support group is excellent and they want to maximise ability. So, DS can get a bus himself and has done many years supported employment through them.

And, just this year, he is in a small amount of paid employment! Simple tasks he does really well.

When we had the psychiatrists out for the guardianship (2 independent ones needed) they uncovered his difficulties within moments by posing scenarios and asking what he would do. He hadn't got a clue.

But he's 26 now, very smiley and has surface level chat of how are you, fine, awful weather etc down to a tee.

Hello everyone,
Have been reading updates but not had the chance to post recently.
Am sorry to those having troubles with school/college/Annual reviews etc
It is never ending and the beginning of September can be such a difficult time for parents like us who have children with mental health issues.
And to those having to battle extra work pressures or ageing parents or our own physical and mental health's. We all deserve cake, wine and a month long holiday by ourselves!

DD has been fine with her new college. We had agreed with her old school to have a week's trial which they readily agreed.
Last Friday, I sent the final email saying goodbye to her old school where she was from Year 7.
I must admit, I felt heartbroken as we came to this school with hopes and dreams (it was a selective grammar)
DD was very clear even if she wasn't continuing at college she wasn't going back to her old school and it was a no brainer after that.
She is coping so far with the hour long commute each way. We have had the sudden mood dips on and off but I still need to learn to deal with that myself rather than having a mood dip myself.
Its still very much a take it one day at a time approach at ours. All I want at this point is for her to get out of the house most days, interact with people, get some self-esteem. If she passes her A levels that would be a huge bonus.

Xx

Sorry for mistakes earlier - I had really limited time before starting work and was really rushing. Not a good time to post at all!

Thanks for info re coil @1spinforward2back 🙂

I called the hosp gynae today and spoke to the secretary to get DD added to the wait list.

Good luck to your daughter for uni. I hope the move goes well.
You probably have been in fight mode for so long that you don't have any energy at the moment for next steps. But its ok! take your time. I hope the DSA can be sorted later too. I keep hearing a lot about uni's being quite good and on the ball for student support and I hope that is your experience too.

We are still not having much joy with stock for extended release ADHD meds.
I am planning to ask the psychiatrist if we can switch to immediate release.
DD also finds she needs a top-up as she now takes her meds quite early to leave for college on some days.
Besides, she realised she needs to actually do homework/study in the evenings or at night. This is after nearly 15 months of doing very little so it is a shock to her system.

@theordinary I've applied for pip for 2 my DCs.
I recommend looking at the benefits and work website as it's got lots of useful information and guides.
Youngest DD transferred from DLA at 16 and it was actually straightforward.
DD20 has recently been awarded lower rate mobility we did the mandatory reconsideration and her length of award was reduced-so that backfired! So we've now appealed, I think she should be able to get it for living (tbf I thought she'd get that and not mobility) she was 2 points short of being awarded living element, I think they put a big store on the fact she goes to uni and drives and isn't cognitively impaired - but we weren't claiming for cognitive impairment!!
It was for anxiety, autism, sensory overload, organisation and planning, restrictive eating, too nervous to talk etc
Good luck for tomorrow my friend had someone come and see her when she applied to be her sons appointee and she said it was fine.

@DarkChocHolic I'm pleased DD is settling into college, it is hard letting go of the future you thought they would have , I felt that way when it became apparent DD would never go back to her(also grammar!) school. I think it's such an achievement for them to get a place it's harder to let it go.
Older DD also left grammar school to go to college, she acknowledged the teaching and support wasn't great-that came as a shock to her - but the environment was better for her and she was happier there.

DD wasn't that impressed by social group, she said the other 2 girls are already close friends and at uni, so didn't talk to them. she said hello to a couple of the boys but it sounded like she spent the time making origami with one of the mentors. She's a bit young for the group she's 17and it's aimed at 18-25year olds and apart from the 2 other girls the rest are all boys. But she's been in waiting list for 14-17group for nearly 2years so it was suggested she try this one but it doesn't sound like a great fit and she was a bit despondent afterwards, she has older siblings so I thought perhaps the age range might OK, I was worried about male/female ratio but I didn't take into account they would be at a different life stage to her.

That's good news @DarkChocHolic about managing the commute and the college. Totally get what you mean about the main aim being for your DD to get out of the house each day and build friendships and self esteem. Any academic success is a bonus! Well being has to come over and above anything else.

Yes, @Runnerduck34 - DWP say that awards aren't based on diagnosis and it's what help a person needs with each descriptor, but having reports from professionals about the support needed definitely must go a long way to securing a successful award. Ironically, DS1 took up far more of my time as a teen than DS2 and was on DLA for a short time. He is probably more similar to the DC on this thread in that dyspraxia (and likely undiagnosed autism) led to school difficulties and anxieties. He is sharp as a tack but failed in the school system. I think i mentioned him earlier on this thread - his teen behaviour was so off the wall that they thought it might develop into schizophrenia. But he really kicked off against any support, left home at 18 and it was the best thing he could have done.

He's in manual work currently (he always worked and self supported from 18 in low level jobs as his school quals were poor) but he has a really understanding and supportive partner and they seem to rub along somehow on a shoestring budget. He had a lot of support in primary school and was back and forth to hosp outpatients continually but really rebelled against that as a teen and decided no more help; he'd make his own way.

DS 2 qualifies for full PIP, both elements and did not need a F2F as they had all the evidence needed to make a paper based decision. Having the results of cognitive testing by clinical psychiatrists, his comprehensive ADOS report and a support statement from his support worker definitely helped his claim.

Because I knew there was something amiss with him from birth, he has exceeded all expectations and, as a result, has high self esteem! All his life, the smallest thing and it's like 'yay!!! Very well done!' And of course he has never had any pressure on him at all. Because we never expected much. In fact he can do lots of things.

Sometimes it's the cognitively able ones that struggle more I think. My DS2 lives just in the moment. He doesn't worry about the future; we do that for him!

Hope all goes well with DWP tomorrow @Theordinary - be prepared for them banging on your door like you're a criminal though!! They don't seem to ring the bell and wait politely - they come charging in as if looking for evidence of a crime scene! But they are perfectly reasonable once they see your young person has actually got needs!

So sorry to hear the social group might not be a good fit for your DD, @Runnerduck34 It's a real tough situation, especially after waiting so long for a place.

Hope everyone has a decent week, no drama!