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"

I will be reminding them today. I didnt sleep last night, i feel terrible!!! The placement has broken down, and he won't go in or gave a conversation or text chat about it. He's completely in freeze mode. He us interested in photography and has a local mentor (a neighbour who is a professional photographer, whom he sees for informal lessons fortnightly) so we could build something around that .

With no GCSEs could the college still take him if the LA consult? To be honest I'm exhausted every morning trying to get him out of bed, fed out to school by car. So I feel EOTAS would give him the flexibility he needs.

Not having GCSEs won’t prevent the LA naming a college placement. Colleges offer qualifications in a range of levels including entry level (which is below GCSE level) and level 1.

You will need evidence it is inappropriate for the provision to take place in a school or college.

OK, I don't have evidence, but I will speak with the college I have in mind today and see if in theory they would take him, as long as he can do his English and maths.

You would need evidence for EOTAS. If you think EOTAS is required but don’t have evidence now you could look at independent assessments when you appeal.

@mackencheese
How are you? How did the meeting with the college go? I hope you are sleeping better now.
It's very stressful trying to find the right placement and ime LAs can be obstructive rather than helpful.

I hope everyone is having a good easter weekend without ( hardly) any stress. I'm just relieved to be off work and not have to get DD up and to tutoring/ therapies. She missed an online session Thursday because I was in a meeting so couldn't double check and remind her- well i did remind her 30 mins before session but when I went back 45 mins later to check she was online she was asleep- just constantly feel I'm carrying everything so nice to not have so much pressure for next few days.

@Runnerduck34 It's very frustrating when you feel like you are the one that constantly has to be behind them chivvying them along and then they let you down. Its not their fault and its all part of the illness they have, however it is extremely difficult as a parent. My DD's tutoring went OK last week but she's let everything else slip. Her bedroom is in squalor and personal hygiene is lax. She's very socially isolated still. I'm struggling here a bit. DD is really sad still about the lack of friends. She thought she had made a new best friend and she invested everything into this one person only for her to be let down again. This girl has been avoiding meeting up and always says she's busy. DD is heartbroken again. I'm so fed up with people letting her down. I just wish she could make some decent friends. It's the one thing I just can't fix and it breaks my heart. I'm dreading Easter meeting up with family. I have to explain why she sits alone, not speaking to anyone. Everyone knows she has her GCSEs coming up and I can't face the questions from well meaning relatives about how she's getting on. I feel like hiding away to avoid it all. I'm feeling pretty low this morning.

@Theordinary
If school term days are hard, holidays are just as hard for families like us.
It is frustrating that we have to scaffold them so much and they put in so little effort. But then, I suppose they genuinely can't and that acceptance is quite hard for us parents.

I was down yesterday when i realised DD can really focus on things she wants to which is usually hair, makeup, nails and going out with friends. She can spend hours on these things.
When it comes to exercise, eating well and doing even the bare minimum school work, mental health issues kick in.
No amount of adhd or ad medication can bring motivation for life skills until they realise it themselves.
This realisation may be much later than their peers for ND kids and until then we have to say nothing and carry on doing what we do.
It's very hard.

Xx

You're right @DarkChocHolic i do need to work on my acceptance. It's been a whirlwind few months after her diagnosis in September. We're still all getting our heads around it. She had a nice day out with a new friend yesterday so yesterday turned out to be A Good Day!

Pleased to hear this @Theordinary . My dd also went into London shopping with a friend yesterday, so good days all round. Now she's still in bed haha!

The college seems promising, thanks for asking The ehc coordinator said she will step in and help if there is any resistance to taking ds over his poor attendance in school. For once she seems to be on our side!

However, he is still too anxious to even get started with revision. I've lost count of the number of false starts, and then he's off doing something else again. Oh well, I can only but try....

How is everyone else getting on?

@MackenCheese thats nice that you DD had a good day with a friend too. Its such a relief when they do something normal for their age. Today was not so good unfortunately. We had a day with extended family and she spoke to no-one all day. Even all her cousins shun her now as she looks so grumpy all the time. She just completely frozen in that situation and can't seem to speak. I just don't know what to do about it. Revision is another pending problem with the GCSEs looming.

Have you had dd assessed for selective mutism? It's so sad when it has such an impact on even family get-togethers. My sister was angling for a visit to share the roast lunch I'd made today, but I know how my 2 would be "off" with her and I couldn't face it, do I didn't invite her, eek.

On a more positive note I've been out all day with ds and my heart is so full the way he navigates around the city, talked intelligently with a train driver all about signals, types of trains , timetables. I was very impressed and started wondering if ds is a savant with all the info he was spewing! The driver took a photo with him and the driver shook my hand when he realised I was hovering not too far away and being supportive. So yeah, another day of no revision, but I'm so proud of him however the future goes....

@MackenCheese that sounds amazing. You should be very proud of your son. Exams are not the be all and end all, however much society try to tell us they are.
For DD, I think you're right about the Selective mutism. I don't know how to go about getting her assessed or even what the help available is. I suspect it's camhs anyway and we've been waiting for them to provide some assistance since October. I have battled long enough without any help. My mental health has gone downhill rapidly. I am recognising that I need antidepressants now.

@MackenCheese
Lovely to hear about your DS and his passion for trains. Hopefully he can latch on to his interest and find meaning and purpose. Something I realise our DC could really benefit from. Glad you had a good day out despite the nagging GCSE worries at the back of your mind.
Those persistent worries never go away for us as parents. It's hard to pretend they are not there.

Ordinary. Sorry you are feeling really down. I hope you find something to cheer you up. Can you take a day out for yourself?
I must admit having guests at this time in our lives really overwhelms me.
I cannot bear the thought of tidying up, sorting food and small talk. Simply have no energy
We had our lovely neighbours over 2 days back and it was really nice when they were around. But DD didn't come down to even say hello. I didn't expect her to.
I know it's difficult with family and cousins. There is more expectation.
Is there any chance you could socialise outside the house? Sometimes I think that helps a bit. Change of scene for everyone.
I am reading "Never Let Go" by suzzane Anderson and its great. There is a chapter on how to manage social relationships and families etc. I would really recommend. I hope you start to feel better.

DD had a few calm and cheerful days but starting to get more anxious..noticeably chewing nails etc
We have increase the adhd and ad dosage. I suspect she isn't coping with the sertraline increase from 100 to 150.
I was not happy increasing the ad dose as I thought she seemed calm at 100 though she claimed she was anxious to the camhs psychiatrist and she immediately upped it to 150.
I don't think any dose can miraculously cure anxiety but it sadly isn't my decision.
I had such a heart wrench when I saw the familiar blank, sad face of DD last night. After a few calm and cheerful days it makes me panic to think we may be going downhill again.
I am being silly I know 😞

Thanks for your kind words, @Theordinary and@DarkChocHolic . He really is passionate about trains and photography, hence spending long days jaunting around the city taking photos!

I sense for all of us, personal anxiety about these youngsters is starting to kick in. I'm trying to stave off antidepressant therapy by exercising like a marine. My joints were bad this past week, so I walked 19,000 steps yesterday instead (boring fact). I agree with doing something for yourself. Get your nails done, or go for a walk in a beautiful place, preferably without DC just to clear your head. Breathe. We are all busting a gut and no one can see us keeping it together🙁.

@MackenCheese
Very impressed with you doing 19000 steps with aching joints. Well done!
I agree with exercise helping with our own mood. I notice on the days I do nothing, my own thoughts are very dark.
Xx

@Runnerduck34 I hope your weekend off (paid) work has given you some breathing space. I put paid in brackets because the constant work associated with having a disabled child is never ending.

@Theordinary pleased to hear the tutoring has started well. Sorry to hear about the social difficulties though. An EHCP can help with support for SM and the EHCNA help in understanding DD’s needs. A good SALT with experience of SM can be helpful. Have a look at SMIRA’s website.

@DarkChocHolic once you get meds right you may find motivation and ability to undertake activities of daily living improve. Meds aren’t a miracle cure but once on the right meds/dosage they can help.

@MackenCheese glad the AR went OK and you have all had a good day out.

@DARKCHOCHOLIC I can relate to the increased anxiety with the ADHD meds. We've had this trouble with DS who has asd/ADHD. It's hard to get the sweet spot of working well for the ADHD but not making them too wired and anxious. Hope you can find the right balance. Have you tried magnesium and b6? I believe there is some evidence for these being deficient in kids with ADHD.
@MackenCheese well done on the exercise. Its exactly what I should be doing for my mental health but I just can't seem to get going. There's a lot of self sabotage with me. I'm eating non stop junk too which is so unhelpful.
@1spinforward2back I'm still a little torn between whether it is true SM or just very severe social anxiety. Also these cousins have really been quite mean to her in the past and are all older teenagers. She feels very intimidated around them which is sad. My DH had to stop me sending a WhatsApp full of home truths to my family today after yesterday's get together. My head is not right and I'm in danger of making some very foolish moves. I think the protective mum in me is wanting to fight on her behalf. Fortunately I didn't press send! God lord, I do need to get a grip. Back to work tomorrow for some sanity.

@Theordinary if DS struggles with an increase in anxiety on ADHD meds, have non-stimulants been tried. Some find they don’t increase anxiety as much/at all compared to stimulants. In the immediate, it doesn’t much matter whether DD’s difficulties are because of SM, ‘just’ social anxiety or both. She needs support and an EHCP could provide that, an EHCNA can help to understand her needs and the support she requires, and SALT can be helpful.

@1spinforward2back I've applied for ehcpna a few weeks ago. I'm not hopeful that we will get anywhere to be honest. I'm confused about the tribunal process and what's involved. I thought I'll just get the application in and cross that bridge when we come to it. I could look into private SALT maybe for an assessment in the meantime though. It's just even more money. We've had to go private with the asd assessment and the psychiatrist already. If she is awarded PIP when I apply, the money will be helpful for costs like that. With my DS, he has quite severe innatentive type ADHD. His Dr said that the stimulants are the most effective for that. We seem to have found a good dose of the Medikinet XL now which allows him better focus without too much anxiety. Also DS was very reluctant to change the regime. That in itself sent him into a spiral of worry. He dislikes change so much.

@Theordinary
Glad DS is stable on his meds...sometimes we are too scared to rock the boat.

DD was continuing to feel rubbish yesterday. We are still under intensive home support who advised us to cancel the holiday. We were meant to fly this morning.
I am keeping fingers crossed we get some money back from insurance.
Compared to the many months of despair we recently had, this isn't the end of the world.
I just feel sorry for DS13 who has been so lovely during these months and so mature as we support his sister.
Just hope we can do something to pamper him this week.

Xx

@DarkChocHolic I'm sorry to hear about your holiday. It must be so tough for all of you. It's so upsetting seeing your kids so deeply unhappy. I know so well how that feels and my heart goes out to you all. It sounds like you're getting some great support now with the Psychiatrist at least. They are very experienced and I know from my husbands experiences with them, they are good at what they do. Especially when it comes to medication management. My DH is doing well on his meds and we were very reluctant at the time but it's proven to have been so beneficial. Sending you lots of strength today. Hope she breaks through it soon. X

@ordinary
Glad your DH is finding the meds helpful. You could do with one less worry!
I noticed you mentioned how annoyed your family and especially Dds cousins made you and her feel.
If they have been mean to her in the past them I suppose she is perfectly justified in ignoring them!
Hope you are feeling less angry about it all. Sometimes, it's just not worth giving headspace to some people and thoughts.

Thank you for the kind words. I probably shouldn't have rushed booking a holiday. Almost like trying to run before I can walk. Clearly we are still a way off from "normal".
Just the thought of getting DD away from her messy bedroom and from lying in bed every possible hour seemed sensible when making the booking.

Xx

Yes, sorry too about the holiday @DarkChocHolic It sounds like you could've done with a break of routine. As you say, fingers crossed the insurance comes up trumps.

Talking about holidays, we're supposed to be going away in the summer, i need to pay the balance next week, then get visas sorted, but DS won't come and have his passport photos done.... because his hair doesn't look right. Hes been stalling since December. I tried to explain that passport photos are generally horrible, it doesn't matter! 😁😁

@DarkChocHolic sorry you had to cancel your holiday.

@Theordinary don’t worry about Tribunal now. If you get to need to appeal post back here then. Unless money is no object I wouldn’t seek an independent SALT assessment now. If the LA e.g. agree to assess but refuse to issue an EHCP by the time you get to a hearing any report now may well be considered out of date. Also, you may decide instead you desperately need to target your money at e.g. an independent OT report.

Hello everyone, I have been lurking, reading and relating to all the ups and downs as we parent our anxious/ND teens/young adults. Sending all those who are having a tough time some strength and a hand squeeze. Here things seem a bit better and calmer, we still get massive meltdowns to remind us that adhd meds aren't a miracle cure but I do feel they are less frequent and in some cases less explosive and long-lasting. We have been incredibly lucky that so far no real side effects, sleeping is unaffected. I am pleased about that but I am still on high alert all the time so I don't think I have adjusted to the changes yet nor will I until med levels are stable and we all get used to the diagnosis and what it means. I want to be hopeful but also I don't want to let myself go there. I hope each and every one of you are able to find a bit of time to rest. I think we are all so extraordinary!

@DarkChocHolic hope you get all your money back and can rebook for another time when your dd is ready. Bless your ds.

@MackenCheese good luck with those passport photos

@1spinforward2back I marvel at all your expert knowledge. I think everyone appreciates your input on these matters.

One point our psychiatrist made about adhd meds was that you should always take them after eating a high-protein meal whether eggs, meat or even a protein bar/shake. She said evidence shows they help the meds to work better.