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"

@SqueezyCheesyPeasy Thank you and welcome to our thread. And don't worry about venting, this is what it is here for. We all do it and it does help to write these things down when the going gets tough. Someone will always come on with some kind words and solidarity.

Congratulations to your DS for getting his first choice. My DD suffers from social anxiety too, and it is my main concern for when she goes. DD sees University as a place to reset and finally meet her tribe, but of course she won't meet anyone if she's alone in her room. It is hard to know what is the right choice although in our case I will be letting her go and seeing what happens as she definitely does not want a year out. With your DS, would he want a gap year if someone else made the call to defer?

@Okisenough thank you. It's really difficult isn't it. I did say to DS (nicely) that if he can't make a phone call then maybe he isn't ready to live completely independently yet. But he said it's not just that, he worries (as do we) that he won't have the motivation to do anything in a gap year and it will make it even harder to go to uni next year as he'll have been out of social contact completely.

If he goes he'll be close enough to home that he can come home whenever he wants, so I suppose that might help him. His worry is the beginning before the course actually starts and it's all Freshers stuff which is his idea of hell! Once he's in the structure of the course I think he'll feel a bit better, but it's getting to that point.

He's been assessed for ADHD although didn't get a diagnosis and he's on the waiting list for ASD too, I think he definitely has some neurodiversity which makes things harder for him.

Amazing news @Okisenough. Congratulations.

Congratulations to DS too, @SqueezyCheesyPeasy. If DS wants to defer, with your help can he email rather than call? If DS decides to commute, is the commute doable by road? DSA can fund taxis.

Amazing @Okisenough you must be so relieved. Glad he is close though if he needs to pop back.

@Okisenough
Really pleased to hear about your DD's results.
I understand your anxiety about her moving away from home. You never know until it happens. She may just be alright by herself.
Take it one day at a time and be guided by her.
She has come this far...this may be the kick-start she needs and it is a positive one too based off of a success.

@SqueezyCheesyPeasy
Welcome and sorry you find yourself here.
Hope you get a positive outcome regarding your son's uni place
It may not be a bad thing to commute from home and then see if things improve. Atleast it gets him out of the house and he has a structure to the day.
Are you able to speak to uni of his behalf?
The normal rules that once 18 they do all correspondence themselves sadly doesn't apply to kids like ours.
They need scaffolding for longer.
Xx

Thanks @DarkChocHolic yes they definitely need scaffolding for longer, we're finding it tough with things like doctors phone calls where he doesn't feel able to do it but has to give permission for me to speak on his behalf.

He's more or less decided he's going to try to go and live in halls at university, and because it's quite close to home he can come home whenever he wants. I really worry that he won't be able to cope but he'll only know if he tries I guess.

It's frustrating that DH doesn't seem to quite get just how much DS is struggling. He said 'he can joint some societies and find his people'. This is the boy who is currently too anxious to text his friends (who he's known for years) to meet up. DH also just said 'lets give him a shopping list and get him to practice doing a grocery shop this week'. DS hasn't dared go into a shop on his own for at least two years so there's no way he'll just be able to do that. It needs to be much smaller steps. It feels insurmountable at the minute, and exhausting feeling as though I'm the one doing all the worrying about it.

@SqueezyCheesyPeasy DS could give written permission (even if it is a letter you write and he signs) for you to act on his behalf so he doesn’t have to give permission each time.

@SqueezyCheesyPeasy
We have done exactly the same as suggested by bounce.
Our GP has a form which DD filled out authorising me to do everything on her behalf.
I even attended a face to face appointment without her when she refused to come last minute.
However, our GP is very understanding and knows DD's history very well.

I empathise with what you are going through with husband.
We have similar though recently he has backed down a lot.
I don't blame him sometimes and there are times when I have asked him to pack up and leave as he makes things so worse and i feel I will have one less moody person to deal with.

Hang in there. You are not alone. It will get better.
Xx

DD has given permission for me at GPs and dentist. The next one will probably be college when she returns next month as because she is an 'adult' they already won't talk to me re admission queries. (About to be 20, but returning under her ehcp).

@SqueezyCheesyPeasy and @DarkChocHolic I wanted to say that I also understand the whole DH issue. I think part of it is denial as that's just easier (emotionally and practically) especially as they know we will hold onto the rope. My DH is more aware now partly as I was becoming so overwhelmed, I couldn't do everything anymore and he had to step up.

hello can I rejoin? I’ve fallen away from the thread but I’m really struggling with my DD (who isn’t a teenager anymore) but anyway.

21/2 years now she has had severe anxiety and now has OCD. She does not leave the house except for medical appointments. At the start she had a terrible experience with CAHMs and it put her off seeking help, when I finally convinced her to see a GP, she was referred to Adult Mental Health and sees a CPN and a psychologist weekly. She’s also had OT and psychiatry input too. She’s always been a teeny tiny thing but they are saying she needs to put on weight now to help her anxiety which is stressing her out. She lies in bed all day so doesn’t burn calories, she’s very upset because she feels the focus is on her weight not her mental health problems.

I could cry every night, my once sociable, outgoing, sporty girl is a shadow of herself. She’s so lovely and it breaks my heart I cannot help her.

@Okisenough - Congratulations to your DD-thats amazing, I hope transition to uni goes smoothly- is it far away?
@SqueezyCheesyPeasy welcome! of course you can join and its fine to vent. Congratulations to your DS too!
Going to Uni is a huge step-but if its commutable from home then at least you can keep an eye on him and visit often-if he decides to live in.
My DD deferred a year as she just wasnt ready to go, another year made a big difference, she had a part time job in a quiet shop with good colleagues, its really increased her confidence, however it does sound like your DS needs help and isnt ready for a job and possibly not uni. if you phone up student support and just get your DS to say yes speak to my mum you can talk to them, you can get your DS to give them permission to contact you and for you to contact them on his behalf- I cant remember exactly what its called but its helpful to have in place. You can also defer via UCAS website, if thats what he wants.
Has he got DSA? Are uni aware of his needs and have a support plan in place? sorry lots of questions! If you havent already it might be worth considering applying for PIP, takes financial pressure off as clearly wont be able to work whilst at uni.
Is he having any support with his anxiety and mental health? I completely get that having no structure for a year and retreating into his room could well make his Mental health worse, My DD is taking some medication which has helped her, it also may be worth considering if there are any underlying undiagnosed conditions such as ASC or ADHD.
My DD did manage to go to uni last year but tbh struggled socially-wouldnt join societies , spent most of the time in her room, I think the first year was just a big adjustment and going to lectures and living away from home left her with no reserves for anything else, this year she says she is going to join societies, shes friends with 1 flat mate, who has similar difficulties, and they are staying in uni accommodation in same rooms as last year- fingers crossed.

Younger DD has had a few lessons over summer but not many, she has been busy as we had a few days away for Olympics/Paris/Eurodisney which she coped really well with, helped she wanted to go! She has now slept pretty much for 2 days as is exhausted.
Our LA have called an Annual Review of her EOTAS package next month which is causing me stress, apart from the fact as its the summer holidays I cant get hold of professionals to check lead time for reports and if they can attend, its was only May when her EHCP was amended following tribunal and July when they finally released funds to implement it- and now they are holding an AR and have had a desk based EP report carried out that omits a lot of existing provision- I suspect they will want to remove a lot of the support weve just been awarded- which is what they did last year-so will probably be back on tribunal merrygoround for 3rd time:( Its just exhausting, Im hoping for the best but really expecting the worst-I just want them to leave it alone for a year and for DD to have some stability

@Runnerduck34 thank you. I have to admit I don't know anything about DSA or PIP. How would I go about looking into that? He's on a waiting list for an ASD assessment, and he's already been assessed for ADHD but they said they couldn't diagnose as his college hadn't noticed anything and it has to be present in two settings. He just hid away in college though so if be surprised if they knew much about him at all! He sees a therapist every week.

@headache so sorry you and your DD are struggling so much as well. It's so so hard isn't it. My DS has never been particularly sociable, but it's still been so difficult seeing him go from someone who would meet up with friends, go into town etc, to someone who barely leaves his room.

My younger DD, who also struggles with anxiety, actually has an appointment with CAMHS today, I'm not holding out much hope though.

@SqueezyCheesyPeasy
DSA is via student finance, uni should also be able to advise so if he is going to uni this year then I'd apply quick. They can provide mentoring, equipment etc (it's not money) well worth applying. The mentors in particular are really good, can have both academic mentors for organisation etc and wellbeing mentors.
Equipment wise it's laptops, printers voice recording or read back software, etc
For PIP I recommend you look at the benefits and work website.
It maybe that DS isn't ready for uni yet and needs a year to be in a better place for his MH, and that's totally fine but it does sound like he needs professional support.
The never let go book by Suzanne alderson and parenting mental health website and course are really good resources to support parents as recommended upthread.

@ headache - welcome back, it's so very hard to see your DC suffering, you cant fix it but you can walk by her side and support her. It isn't your fault, the resources I just recommend in post above are really helpful. It won't last forever - better days will come, it's good she is getting professional support x

@headache welcome back and I am sorry that things are hard for you and your dd. I would second the parenting mental health website. I haven't signed onto the online course but have been watching their bite-size videos and have found them very helpful.

@SqueezyCheesyPeasy you can get the forms for DSA from the government student finance website. I have printed them off and sat on them for nearly two months! My dd is not sure she wants to do it but I think the extra resources could be very helpful.

@Runnerduck34 I am annoyed on your behalf about this AR. It is completely unnecessary and clearly an attempt to save money. It is not right. I can only keep my fingers crossed that it goes well for you. I am glad that you and your younger dd had a lovely time in Paris. I absolutely love the Olympics. What an experience to share.

Also thank you. The University is not far so theoretically she should be able to get in an Uber and return home in an hour. Let's hope that won't be necessary. Although I am very pleased for her, the worry really puts a dent in it. So while my peer parents are all clapping and happy, I feel a little like a killjoy albeit only in my head as I don't share my worries out loud! But I must remember this is a good thing and a step in the right direction. It is so easy to not enjoy the progress.

@Okisenough thank you, I hope AR goes better than expected.
Im constantly in a state of high alert and it sounds like you are too- just cant relax and let my guard down.
Whatever happens it is an amazing achievement to do well at Alevels and be offered your first choice uni , an hour away is really doable so should definitely help. Do fill out DSA forms, my daughters mentors through have been amazing, it also flags up your DD with the student support team at uni

Thanks everyone I will have a look at the Parenting Mental Health website and I’ve stuck the book in my basket on Amazon. DD2 is just about to leave home for uni and I think it’s causing DD1 to be super anxious, they are very close and she will miss her loads. She will also worry about her.

Hello @headache . For some, low weight is a particular of the mental health difficulties. Some find that very difficult though.

Definitely apply for DSA and PIP @SqueezyCheesyPeasy.

Glad the holiday went well @Runnerduck34. Unfortunately for your case, the Tribunal process is separate to ARs. ARs must legally continue as normal. If the LA tries to remove provision again so soon, I would seek advice on whether JR is possible. It sometimes is because LAs should not remove provision recently ordered by SENDIST simply because they disagree with it. They must have new evidence.

@Okisenough congratulations to your DD for her results. We've got gcse results day tomorrow and not holding out much hope I'm afraid. DD is sleeping a lot during the days through the summer break. She does go out here and there but this seems to exhaust her to the point where she sleeps all of the next day. I'm worried that it's the Fluoxetine or maybe she's just really depressed still. Counselling is ongoing and like someone said, I do have to try not to ask whether it's been helpful.
I can't see how she's going to be able to manage college in September. It all seems a bit beyond her at the moment. I'm just ready to support her tomorrow after the results. I know she's going to feel like a failure. I'm just glad she sat them at all. A major achievement in itself Considering how poorly she's been.

@Theordinary
I really hope results day is better than expected.
In DDs circumstances even sitting them is truly such a massive achievement .
But comparison is almost inevitable, I hope she's OK.
I've got my fingers crossed for you.
Have college put any support in place? How does your DD feel about it? I hope it's a course she's passionate about.
When my middle DD was in college she only had to go in for 2 or 3 days a week which does give recovery time, do you have her timetable yet?

Youngest DD just sat Art GCSE this year so not too stressful but I hope whatever the result she is happy with it.
She is also burnt out sleeping a lot short with bursts of energy she did however cope with our holiday.
She's on fluxetine and quitiapine and has put on significant weight in past year which I only fully realised after looking at some photos from last year. I think its because of medication - she is always hungry.
I think I need to try and reign her in somehow before it's really out of control she gone up one or two dress sizes in about 8 months.

Skip, thank you for JR tip, going through tribunal repeatedly is stressful, long winded and leaves DD without adequate provision which really sets her back.
It's all a cost saving game to LA.
However I can imagine JR is very expensive and also stressful but possibly quicker.
I just hope AR goes through with no significant, if any, changes.

@Runnerduck34 thank you. I'm hoping she's going to have a reasonably light timetable with a level 1 course but I think the inevitable resits will add more to the timetable. Depending on whether she gets 2s or 3s will decide whether she does functional skills rather than gcse retakes. Sorry to hear about the weight gain on the Quetiapine but if she's feeling better in herself that's good. It is a bugger for weight gain as my other half found out. He's found lamotrigine to be weight neutral so far. The carb cravings are very difficult to manage with a lot of these meds. Has she a diagnosis of Bipolar?

@Theordinary
Good luck for results tomorrow.
Fingers crossed for next steps.

My DD is on aripriprazole instead of quetiapine as she already has issues with weight.
We are still battling the body image issues and am sure the combination of antidepressant, anti psychotic and adjd medication isn't helping.

It's so hard @DarkChocHolic There's just not many options that don't cause weight gain. He found the Aripiprazole better with the weight gain but it's made him quite low and flat unfortunately.