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 , I hope your DD enjoys her trip. Sometimes they surprise you, maybe she'll come back having loved it. Maybe she'll wish she'd never gone. Either way though, all you can do is support her like you're doing and let her make her choices. It sounds like you're doing all you can, especially with the counselling. Has she been doing it a long time.... Is it a particular model like CBT or DBT? You sound lovely and supportive and one day she'll give you the thanks you deserve
( but not yet, probably!)
@DarkChocHolic I can identify with the feeling that you just need a bit of respite. It's extremely intense. As we're their Mums, I guess they feel safe enough to offload it all to us. It's really draining. Sometimes I want to just leave the room when she's ranting at me. It must take its toll on us all after a while. The guilt goes hand in hand with all of this as we know. I guess we just have to remember that none of this is our fault and we are completely justified in feeling ground down.

@Theordinary
"Ground down " is so apt to describe the feeling.
I sobbed on the phone to DDs camhs psychiatrist today.
She wanted to introduce new meds and I said I cannot cope with things getting any more low than they already are.
Doesn't even feel like a long tunnel. Feels like being in a container closed, lock and the key lost.

Wow i feel like you have described my life.
My three girls are autistic age 5, 13 and 20, and my boy is 11 and so easy to parent.
My 13 year old has extreme social anxiety, she's also selectively mute, she hasn't attended school in 3 months, i have given up my career for the time being, i was already down to just working one day a week but still couldn't juggle it, i miss that day so much as it was an outlet for me.
I helped get my eldest girl into university through a disability scheme, endless paperwork but we got her in. She has dropped out now and spends all her time in her bedroom..sleeps until 3 or 4pm and comes down to eat and back to bedroom, she cannot give me any help in the house with chores, looking after a 20 year old who shows no empathy to me or kindness is extremely difficult.
My 5yr old is very funny but very demanding and easily gets into meltdowns, but I'm so used to meltdowns, they seem the norm to me.
I cant sleep so am permanently exhausted.
My husband has taken all his stress out on me, blames me for anything thats difficult in our lives so now we are going through a legal separation and he is so cold towards me and puts me doing all the time, even though i am doing it all. The girls place all their worries on me and direct all their meltdowns at me while he is at work, he has no idea how hard it is. I cant take much more😢 we are together since we are 18 and im now 42, i don't recognise this man any more, he is so heartless but yet I stupidly want us all back together again even though i know it cant happen as he is mentally torturing me. The school have been a nightmare with my 13 year old, putting fences up everywhere we turn, my poor girl needs an education and wants to go to school, will not even hear about homeschooling which i would hate to do but would do in a heartbeat if i thought that made her happy. I am up now in 20 mins when my alarm goes off and have to face the battles to school after zero sleep, mind worrying about everything..i just don't know how i can continue to live this life..my kids are my entire world, i adore them and it breaks my heart to piece's every day to watch them struggle😢

Sounds like PDA..my dd's are they same, refuse every option

@Lifeofasd1
So sorry to read about your situation.
Your husband sounds like a real idiot and maybe you will be much better off without him in your lives.
Do you have anyone else for support?
I have no wise words but wanted to say I am thinking of you and hope there is something cheerful just for you today.
Big hugs
Xx

@Lifeofasd1, I just read your post this morning. It struck me how early in the morning your day starts with all of this. I really felt your feelings of helplessness. You have so much on your plate and it sounds like you're becoming completely overwhelmed. Are you getting any counselling for yourself at all? If you have a budget for it, I would do this ASAP. You need some support for yourself.
I don't like to be a Man basher by any means or to generalise. However, I do think that as women, very often we are the ones doing all the reading, researching and problem solving for a family. As a result we know so much more about Neuro divergence eg. The signs and symptoms. I've found that my DH has very little knowledge by comparison. This makes him put certain behaviours down to brattiness, disobedience, rudeness, ungratefulness etc, etc. Whereas we know that this is all part of the neuro divergence. This can sometimes lead to misunderstandings and mean that as parents you are coming at it from different view points. I'm sorry I'm not very eloquently putting this. I think the separation rate in marriages with neuro divergent kids is high because of this. I certainly feel it my marriage. The whole situation has taken its toll. I really feel for you and hope you can get some support just for you.

@DarkChocHolic Is your DD on any meds at the moment? My DD is 4 days into Fluoxetine 10mg. So far so good I think. I'm not happy about her being on SSRIs at 15 but hey ho!
So, DD has been into school Wednesday and is hoping to go today. She did just Art on Wednesday and today might work in the SEN centre if they let her. Tiny bits of work done at home on the days she's been here.
We tried the Loops things. I got her the Loop Engage but she said they don't really block much sound at all. She could still hear DS chewing! I'll send them back and try the Loop engage plus. She can't have the Quiet ones as she said she needs to hear if people are talking about her at school. She's still quite paranoid about that.
She has made a new best friend, which is really helping her. The only worry is that she is sounding quite obsessed and over invested already. It's a worry. I'm back to work in just over a week (having been off for 10 weeks!) after my op. I'm really worried about how the mornings are going to go when there's no one here to police it. We've only got the one bathroom and every morning there are arguments and shouting over who's taking too long etc. DH is a bit on the edge with his mental health and I'm walking on eggshells a lot at the moment. At least it's Friday! I hope everyone has a relatively calm day.

I can identify both so much you said @DarkChocHolic and @Theordinary . My DD 14 tried Fluoxetine but it just gave her nightmares, which got worse when she went up to 20mg. So we had to dtop it. I hope you get a better response.

My DS 16 has been in school for the past 3 days yay! It's so normal to be in school...but not for our kids, sadly.

Sorry for the typos!

@Theordinary
DD is on fluoxetine 20mg and almost 10 weeks in and we see no improvement.
Her mood swings are intense so thr psychiatrist wants her to start anti psychotic drugs and this freaks me out.
I am getting a second opinion and a private adhd/autism diagnosis as she shows quite a few inattentive adhd traits.

I hope your dd gets benefit from the fluoxetine. Hope going back to work is not too stressful for you.
What bad timing about your DHs mental health. As if one was not enough.
Hope the new friendship for DD works out well.
Its funny how we are almost too scared to be happy for them in case it all goes wrong.
I would be the same too....
Xx

@MackenCheese
Yayyy for the 3 days in school....
Absolutely something to be cheerful about.
I know the relief and the stomach knots it brings.

Dd hovering at less than 40%attendance.
And yet still thinks she will catch up with lost work and take y12 exams.
I despair at how detached from reality she is...
Why won't she accept she needs help and take a few months off and do something else next year.
Grrrrre

Xx

I have not had the chance to read everything this morning but wanted to put this here before I forgot. I was told about these earplugs called calmer which claim to reduce noise without blocking them making noises less spikey. The leaflet certainly makes them look useful. Anyway, the link is flareaudio.com

We’ve had what I would class as a good week. She’s been in everyday and we’ve only had one meltdown.
She is adding a new class into her timetable next week which will mean doing a full day. Her first in 3 years. I must say my anxiety is running high about it.
we have an appointment with cahms today, although she wants help she doesn’t really want anything that they offer. I suspect we will be signed out from the service.

@DarkChocHolic Its funny how we are almost too scared to be happy for them in case it all goes wrong.

This is so true. It's like we are constantly sitting in a waiting room, where although it may at that moment be quiet but you can never fully relax as you may be called at any time. I have only heard once from dd so this has been a good morning. But am so tense I had to cancel what I was doing today as I won't be able to focus.

@MinionKevin I am glad you have had a good week. And I hope the extra class goes well for her. It is hard when they won't accept the help that is being offered.

@Lifeofasd1 I am so sorry that things are hard. Sending you a big hug. I also think your DH is an idiot but also someone who is in denial. It is easier to believe that someone else is to blame than actually work to make things better and adjust to ND children. I hope you have someone who can offer you some support but please feel free to rant on here as much as you like. We understand.

@Theordinary sorry to hear about your DH. I have sadly also been there. I remember being quite annoyed at the time, it is not that I didn't have empathy but I was quite resentful that I couldn't just fall apart as no one would make dinner, get the kids organised etc I just had to keep going while he had time out to rest and recuperate. And yet despite this experience, I still have to sometimes explain why just forcing dd to do things isn't going to work and her taking time off school isn't her being taking the piss.

@MackenCheese I do wish schooling would be more flexible and education departments would understand that although yes education is important, this system just leaves many ND children with trauma and terrible MH. Surely this is of no value to society.

@DarkChocHolic I wonder why they don't consider changing to another SSRI rather than adding another type of drug?I'm not a Doctor though. Is there any suspicion of any other Psychiatric condition? If so that makes more sense. My DH was on Quetiapine for a year or so, many years ago for his Bipolar 2. At the time it was a life saver to stabilise his moods. He came off it of his own accord when the side effects became too much.
@MackenCheese That sounds like great progress.. to manage 3 days is amazing. Take the win however small.
My DH is just very, very sad to be honest. It devastates him to see our child so distressed. I think it's a bit triggering too. He'd honestly be fine if she was magically made well again. I think we all would!

@Theordinary
They suspect emerging eupd/bpd 😞
And hence the anti psychotic to stabilise mood swings
But then pre assessment of adhd asc came out she was highly likely to be adhd..
So I am torn. I do not want to start the anti psychotic until we rule out adhd.
But even a private diagnosis is months away.
And we are simply not able to cope with her mood swings.
She is also quite overweight so I worry about the side effects of aripropazol which is being prescribed to her.

@DarkChocHolic that makes sense then. I remember being told when my DS was diagnosed that ADHD is the condition with the most Co morbidities. For example it's not uncommon to have ADHD with Bipolar (likely in the case of my DH) or ASD (my DS). It makes complete sense to want the ADHD to be ruled in or out first, if you can wait that long. You're right about the risks of weight gain on the anti psychotics. My DH found that he craved carbs and put on weight. Now he's off them he has lost the weight though. They are life saving if needed, so it's a case of the greater good as I'm sure you know. Sounds like a tough decision to make. What area of the country are you in? If you would consider online diagnosis it might be quicker I think.

@DarkChocHolic
My daughter was prescribed a low dose of antipsychotics as well as fluoxetine when she was 16. They helped with her anxiety and you could see when they started to wear off at the end of the day. She did put on weight but the weight fell off very fast when she stopped taking them.

@Roseau18
Thank you!
Can I ask which anti psychotic your DD was on?

Xx

@DarkChocHolic My dd is going to be assessed for ADHD too. The more I learn the more I think a lot of these things are all connected with a lot of overlap of symptoms. We have had to pay privately as GP said we would be waiting for a very long time otherwise.

I am wondering whether my dd would benefit from (if she's willing) a support group probably online as I know this thread has helped me. I do think you get some strength knowing you are not alone on this journey even during the darkest moments. I think not having any peers to discuss her fears has not helped. When she does mention it, I think they just dismiss her or think she is attention-seeking which just makes her social anxiety worse.

@DarkChocHolic She was on risperidone.
Several years after stopping risperidone she took quetiapine for a while. By then she had developped anorexia and I was hoping it would make her gain weight but it didn't. I think that's more to do with her having anorexia than it being less likely to cause weight gain though.

@Roseau18
DD was offered either aripriprazole or quietaipine.
The consultant seemed to prefer aripriprazole as it has "less if a risk" with weight gain than the others.
DD is already quite overweight with binge eating tendencies and is very impulsive too.
The recent reports on aripriprazole about increasing binging and impulsiveness (bbc, NHS, mrha and mind websites) worry me even more.
On the other hand she is severely depressed and just lies in bed all day.
That makes me think she is better off on the drug in case it even offers a trace of improvement.
It's so hard to decide what to do.
Xx

@DarkChocHolic before EUPD/BPD is diagnosed I would want someone experienced with assessing autism and ADHD in females (and maybe even a second opinion). It isn’t uncommon for ND females to be misdiagnosed with EUPD/BPD.

DS1 takes Mirtazapine and Risperidone. For us, finding the right medication has been well worth it. It reduced the rapid swings from high to low and back again, improved his communication, enabled him to engage with life and therapies, improved his physical health and reduced his self injurious behaviour. It has not been a miracle cure, especially at nighttime, but definitely worth it.

@1spinforward2back
You have mentioned to me before about the ruling out of adhd/asc and I haven't forgotten that thought ever since you said it.

I was on the AMA psychiatrist thread today where the person mentioned adhd has several comorbities and sometimes mood stabilisers have better results than stimulants.
I guess it's a case is taking the plunge and closely monitoring things.
We are seeking a second opinion tomorrow with a private psychiatrist who will also hopefully do the adhd/asc screening.
Will ask her what she thinks of starting the aripriprazole.

Thanks to everyone who responded to my moans past few days.
Hope everyone had a quiet uneventful week.
Xx