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"

@Runnerduck34 thanks. I am not surprised you are frustrated, a saint would be! It annoys me so much as I know this is about money, not about what's best. So much is about numbers and not people. Good luck with the complaint and AR.

Spoke to GP and have been given a list of generic brand names that are equivalent to concerta, I need to phone around all the chemists to see if they have any and then call back GP to prescribe. The GP has been super helpful so am not complaining but really hope this shortage ends as feel like it's a lot of work to just get one bottle of pills each month!

@Okisenough
Where they xaggitin and affenid?
We substitute xaggitin for concerta and was told affenid is also a bio equivalent.
I cannot find all 3 close to me.
I may need to have "pill holidays "
It's so frustrating.

@Runnerduck34
Thank you for the kind words!
Good luck with next steps.
It's hard enough having a child who struggles. I feel for you battling the authorities and everyone else to get help you so desperately need.
Xx

Yep, also going to try to see if there are lower dosages available and double up to the right dosage! The joy of phoning around, I feel like I am doing marketing calls.

@Okisenough
My psychiatrist today has said dd can go on to any extended release medication after previously saying no to other brands.
This does worry me but what can we do.

How can you help your teen when they shut themselves off when they are socially anxious?
dd had an social event at school today and found it really tricky. She had her friends around her but when she is anxious she tends to get herself to point where she doesn’t/wont speak to anyone and isolates herself. She can look quite threatening when she feels anxious- stoney faced. She says she just sat to the side and no one spoke to her.
she says her friends just carried on with their day and I can’t blame them. I think she expects them to encourage her to join in and I suppose that’s what her dad and I have done- now I wonder if we’ve helped to create the issue. She expects everyone to stop and support her.
She is upset that they haven’t messaged her to see if she’s ok… I’ve tried to explain that they probably think they’ve done something wrong or don’t understand .
anyone got any words of wisdom?

@Saxonlady
No wise words from me, but we have the same with DD.
She loves to be included but often is anxious and overwhelmed. It's often body image and not wearing the "right thing " for her.
She can also have a sullen look and body language, which comes across as unfriendly.
I despair she can come across as "moody Margaret" but obviously don't say it to her.
I think they have to learn in their own way and time.
I read somewhere to have a good friend, You have to be one.
At the moment, DD can't be one because she is wrapped up in her own problems.
She does feel bad that everyone is moving on but that's life. I don't think there is any exclusion, but if you don't fit in and keep up, you are sadly out.
I do think this generation lacks the kindness and qualities like checking up on a friend. Maybe we did too growing up. Maybe I just don't remember how it was in my time.
It's hard to watch them like this. Hopefully, they will catch up.
Xx

Thank you- it helps to know we aren’t alone.
she is such a lovely girl and brilliant company. I just wish she believed in herself like we do.
the moody Margaret phrase made me smile as she loved the horrid Henry books as a child!

Just found this thread. Have to be honest that I haven't read it all but need a place to vent. My 16 year old DD is autistic, has OCD, phobias, huge sensory problems and social anxiety. I have tried so, so hard to help her in every way possible, including getting professional help. Today is just one of those days when it all feels insurmountable. I can't see how she will ever be ok and be happy. As a result, I don't think I can ever be happy either. My whole life has changed and doesn't look anything like I expected. Every time it feels like we are getting somewhere, it's like we're back at square one. She has bitten herself hard today because she is so stressed. I don't know how to stay optimistic when there are so many problems. I love her with all my heart which is why it is so painful.

I'm a long-time lurker who's experiencing the same as many of the others here in this thread, and I've found this thread so helpful. So just wanted to say to SpookySpoon, sorry you're going through this, sorry I don't have any words of wisdom, other than you are not alone, and I feel the same things that you describe. I have found this book comforting: "How to cope when your child can't: Comfort, Help and Hope for Parents" - I think I discovered it because others here recommended it a while ago.

Thanks @Shnapps I'll check that book out. It's just been one of those (many) days! Appreciate you taking the time to reply to me.

@SpookySpoon22
Sorry its so hard right now, I completely understand the feeling of overwhelm and how your life has been turned upside down. It's painful like mourning for the life you thought she ( and you) would have.
It can and will get better.
Suzanne Aldertons book never let go is also a good read.
Is she getting support from CAMHS? Medication can help alleviate the worse symptoms which allows them to access/ process counselling. Has she seen a child and adolescent psychiatrist?
Another thing that has really helped my daughter is an occupational therapy assessment that recommended sensory integration therapy it's really helped my autistic daughter regulate her emotions.
Feel free to vent here, it's really hard journey.

@SpookySpoon22 I'm so sorry to hear what you're going through. I just wanted to offer some solidarity and hope, if I can. My 16 year old had a mental health breakdown after her autism diagnosis in September. It was around Dec/Jan time. She couldn't attend school anymore. Her only friend dumped her (later found out she was bullying DD)Her mental health was in tatters. She was self harming. I can't tell how much I cried for her. The sadness crushed me... I completely know how you feel. She started on Fluoxetine (private psychiatrist as camhs did nothing!) and we started to see an improvement gradually. The counselling has been amazing. I can't believe how things are so different now. She goes out, she has friends, even a boyfriend now. This was unimaginable 7 months ago. Things aren't perfect. She goes out and has started to drink and smoke. I can't recommend that bit obviously. The most important thing for me is that she is happier and becoming more confident. Please have hope things will change. In the meantime vent on here and know that so many of us know just what you're going through. It hurts like nothing else and we will try and support you. I'm so grateful to the fellow mums here who offered their support to me. I'm sure there's troubles ahead for my daughter and I, but for now I can breathe a little. Sending you all my best wishes.

@SpookySpoon22 just wanted to say you are not alone. We all understand what this journey is like. It is hard, some days I am very optimistic and others I despair. Know that this moment will pass. I am sending you and your daughter a lot of warm wishes and handhold.

Thanks everyone - was too exhausted to reply yesterday and am now working but wanted to thank you for your kind words. Will try to reply properly later.

@Runnerduck34 thanks, will also check out that book. My DD is getting support from CAMHS but this has been therapy without medication and I am starting to wonder if medication may be needed in addition as the anxiety is still there. Not seen a psychiatrist to date. We paid for an OT assessment and I've recently looked into getting more help from them. It's a struggle to get DD to do any OT exercises though as she says they make her feel worse!

@Theordinary I'm so glad to hear that things have turned around so much for your DD. At the moment, my DD won't even walk down the road by herself in case she sees someone she knows, it's such a worry. At least we can still get her out for peaceful walks as they keep us all sane. I hope things improve.

@Okisenough - thanks, sometimes a handhold and just knowing you're not the only one going through this stuff helps!

@SpookySpoon22 I'm sorry to hear that your DD is struggling so much. We had exactly the same here. To be honest she still won't pop out of the house without full make up. Awful social anxiety to the point where she was practically mute at school in the run up to her dropping out completely. I hope one day she will be able to be confident without the mask of makeup but for now it's her coping strategy. My daughter found friends through Instagram as she's into quite alternative culture. She made most of her friends that way. A large number of them are also neuro diverse too. Could that be a way to make friends for your DD?

@DarkChocHolic sorry to hear about DD’s overdose.

@SpookySpoon22 sorry things are so tough right now. Don’t forget to look after yourself. You can’t help DD if you burn out. Push for an appointment with a psychiatrist. Does DD have an EHCP? If not, request an EHCNA. An EHCP can provide more support than DD would not otherwise receive. OT shouldn’t make DD feel worse, so it is worth relooking at an OT assessment to better understand DD’s needs.

@Runnerduck34 if the LA propose to amend without new evidence just because they disagree with SENDIST, it is worth looking at if JR is possible. It sometimes is.

@Saxonlady is DD willing to consider therapy?

@Theordinary yes, online friendships with a shared interest have been a lifeline here as well. My DD stopped being able to attend school but a couple of girls have stayed in touch online and they message each other. I wouldn't worry about your DD's makeup - whatever helps I reckon!

@1spinforward2back yes, she has an EHCP which was agreed this year. Currently awaiting news on her online courses we've requested for September.

I honestly don't think I could have got much more in place for DD so I agree I need to look after myself a bit more so that I can cope better with the rough days! It's hard when you feel like you've worked so hard but nothing seems to help. But I know I can't yet see the full picture - am trying to stay positive and take it a day at a time.

@SpookySpoon22 if DD has an EHCP, what therapeutic provision is in there? OT should be in F.

You should chase the LA. You should know what provision will be in place for September by now. If DD’s EHCP was finalised by 31st March, you should have known by then at the latest - IPSEA has a model letter you can use to contact the LA. Even if it was finalised after that, you should still know by now. If chasing the LA doesn’t work, post back here for the next steps.

@1spinforward2back yep, I'm on the case. It's the provider holding things up at the moment. O.T. has already been requested at post-16 review. It's like pulling teeth waiting for a decision so I'll probably end up paying for it from her PIP.

@SpookySpoon22 that is not a lawful excuse for the LA failing to finalise the EHCP for post 16. If you had a post 16 review, you had an EHCP before the phase transfer deadline, so the LA should have finalised by the 31st March. This isn’t an optional deadline for the LA. You need to force the LA to finalise, via JR if necessary, because if you need to appeal, you need to act fast. If you have to appeal and it goes to a hearing, you are already at the point where it will not be sorted by September.

What therapeutic provision is in the EHCP now?

Thanks, I don't really have the headspace to discuss it all here at the moment but I appreciate your help :-) I won't give up until it's been sorted.

We ended up having to go privately to get medication for my DD. It was a lot cheaper than I thought and was the best use of our resources at that time. I resented having to pay but camhs flatly refused to let her see a psychiatrist even though she was self harming and in a really bad place. It took a little while to see an improvement but it's been quite dramatic. Now she's feeling better, the counselling has been amazing too. I don't think she would have been able to talk to the counsellor when she was at her worst. It's a difficult decision to make as a parent to start them on SSRIs, but for us it was the only way forward.