Life is hard, looking for some cheeriness

[Nixand2]

DS16 has just started sixth form - he is academically very able but socially anxious and suffers with terrible lows and anger. He has had 2 positive weeks and then the last week has been awful. Came home early on Monday, massive period of dysregulation when he couldn’t control himself and then went into a low. I’ve tried to let him rest but he got angry and low again last night and it’s all just so draining . Camhs have upped various meds and started some CBT to help with the anger. Meanwhile myself and DH have to hold down jobs and look after our dS14. We are both massively on edge waiting for the next outburst or low. I’m not sure if he’s fit enough to go into sixth form tomorrow or if another day at home will make things worse. I am just finding parenting like this so difficult and things never seem to get much better. Sorry for the long bleurgh , it just all feels so overwhelming and lonely at the moment

Hi Nix
Yes, I'm here looking for some fun in the relentless lonely drudge as well. Sorry to hear of your struggles. I hope your DS is feeling better today? Mine have all hit the wall of tiredness and back to school colds etc on top of overwhelmed and overstimulated which doesn't help the behaviour.

Got to go now but I wanted to say you are definitely not alone.
Take care x

HI,
Sorry to hear about your difficulties. Its just ongoing isn't it and it feels like there there is no light at the end of the tunnel. My son suffers with social anxiety and everything got worse during Covid. Its a struggle to get him to do anything. It feels like no one else has it as bad and other children are moving on. You are not alone no matter how it feels,. We have to take care of ourselves. I try very hard not to think about him all the time and keep challenging negative thoughts which can be disproportional. Chin up x

@Sticki and @fairlybalancedmum thank you for your replies.
I think it’s the realisation that Primary school was difficult, secondary was too and now sixth form and beyond will be too and I’m just on my little hamster wheel of riding the storms with very little to look forward to in between.
He did actually go into sixth form today which was a massive achievement after such a burnout but I’m still on edge waiting for it to all kick off again.
I think you are right though that I have to make an effort not to think about him all the time as I just get myself in a tizz and then I’m drained myself.
Ive actually had time to sit and finish my book today so that kept me occupied for a while - small wins!

Hello, definitely not alone. I have two ASD teens, ds18 and ds13 and life hasn’t been as turbulent as it has in the last week. I also work full time and am exhausted. My boys are academically able but so different in personality. Expect a school suspension letter later today as ds13 has started damaging property and throwing objects when very angry.
Both of them are not on medication. Sorry to hijack the thread but would love to know if others’ teens are on meds - which med and for what reason.
Hang in there

Hi Viking. Life can be exhausting can't it with work on top of managing the home. My son is not on medication and I wonder sometimes if it might help his anxiety. Our GP was reluctant so start anything and hoped counselling would help. It's complex and a bloody long haul trying to find something that helps him. I'd be interested to hear more about your experiences. Take care x

ds1 found the first week or so of sixth form the toughest mainly because they decided to put a stupid amount of pressure on the new students by telling them how hard they would have to work and it frightened the hell out of him. Let alone the fact it was quite chaotic in the initial weeks ( particularly as he made a large leap from tiny special school to large further education college). Luckily, a phone call from us to the SENCO and her than having a chat with him restored some balance and he went on to have a successful time and got some very good A levels.

He has now just started at University and so far coping well despite being terribly anxious before he went - we luckily were able to persuade him to pick a local one so is only a bus ride away & can come home if he needs to.

We tried medication with ds2 with dire effects (he was much younger though at 11). Never again but I think he was that rare case in which medication made things worse rather than better & it does help some. Careful monitoring though is required in our experience.

Thanks @OneinNine and @vikingwoman

My ds has been on sertraline and aripiprazole to help with his OCD and low mood. The OCD is definitely better controlled at the moment. He also takes Melatonin to help him get to sleep as otherwise he would be awake all night.
I was reluctant for him to be on meds but over the years I’ve seen they do have a place in the toolkit .

fairlybalancedmum I think the feeling of isolation is very real for asd families. Our journeys are just different from other families, though similar to other special needs families. I’m not in the UK so can’t comment from an educational perspective, but the teen years can be brutal. And when they reach 18 (or legal adulthood), they can present further challenges regarding consent and services. I’ve been on SSRIs since DS2 stopped breastfeeding - they have helped me cope over the years. Our gp has the same perspective re: meds. Thing is, after DS1 was admitted to hospital for adolescent inpatient services (released after 5days) almost 2 years ago, he refused to take the sertraline that was finally prescribed to him. Sigh. Like your son, covid has largely kept him indoors. He doesn’t go out as often as he used to. I try to put minimal demands on him, as he is in the process of trying to complete high school (virtually). With any luck that will happen summer 2022, as he missed a lot of school due to stress, etc. He’ll be 19. I tell him that everyone has different timelines, and that’s perfectly ok. It’s not a race.

School very supportive of ds2’s recent anxiety/frustration. He won’t be suspended as they see where they could have done things differently.

Yes Nixand2, melatonin is a godsend for so many kids with sleep issues. It is available over the counter where I am.

Thanks Viking for sharing. It helps to feel less isolated knowing others have similar issues. I am surrounded by parents with teenagers going to Uni. I know my son wouldn't cope if he went but I don't like to disclose too much about my son to them as it's not fair on him. My son has become stuck since Covid. He is in too much and won't try new situations. We are going to ask the GP if medication might help his anxiety.

I am glad your DS2s school have made the right decision to support your son and reflect on how they handled the situation. That's very positive. You are absolutely right that there is no definite timeline and I keep telling my son there is no rush. Our teenagers will get there. Take care .

I got a phone call at work on Friday to say DS wasn’t coping well and could I pick him up ASAP…and so it begins

They had already spoken to DH who told them we both work and can’t always drop everything straight away . I was called in for the inevitable meeting about how to best manage DS when he hits the metaphorical wall and can’t remain in his lesson.

It’s so difficult because I want to rush in and collect DS as soon as he feels he can’t cope but ultimately that leaves me on tenterhooks every day waiting for al call and that’s really taking it’s effect on my mental health.

@fairlybalancedmum you are right, our teenagers will get there, I just have to keep telling myself that!

Hi Nix. Sorry to hear about your difficult week. I think it unreasonable of school to expect you and your husband to drop everything at work and collect your son. Many jobs (e.g. in hospitals) it is simply not possible. Is there not a support worker available for him? Would you mind sharing a bit more about your experiences with medication and your son's OCD symptoms? I think my son would benefit from something but symptoms are varied and a mix of low mood/anxiety/OCD. I feel counsellors and GPs don't know what to suggest. Take care of yourself

Hi @fairlybalancedmum, yes that’s pretty much what DH told them.

So my DS suffers with anxiety we sought help for when he was about 10 . He had an awful time in the last couple of years of Primary school and I think he started on Citalopram . During Secondary school the OCD became more apparent. It started off as a continuation of his sensory needs and became very rigid about what he would wear etc. This soon changed into hand washing and showering which became a huge problem , the time spent not washing was getting less and less and it impacted greatly on his life and family life. Camhs then prescribed Sertraline and gradually increased the dose to 200mg. No amount of therapy or medication helped at its peak, we were totally beholden to the routines. Eventually we bit the bullet and adapted our bathroom to a wet room with a drain so it was at least not getting flooded . This seemed to reduce the anxiety and shame and things gradually started to ease . I should add that Camhs also added in aripiprazole which also helps mood and repetitive behaviours. We are now up to 5mg of that. Whilst the ocd is more controlled , the low mood , mood swings and frustration which can lead to rage are still a big issue. I believe it’s all linked to self -esteem and the shame he carries of having autism . He is starting CBT to try and help with that this week but it will be really hard for DS to talk and open up.

Hi Nix.

Thanks for sharing your experiences. It sounds like you have had a tough journey since primary school. I hope you have supportive people around you. I must say I don't always find peoples comments very helpful and some just like the drama because its not their child. I am glad CAMHs have been good. I have heard mixed things but every areas is different . My son has benefitted from CBT but it is a slow process and we had to pay privately when the NHS sessions stopped. Have you had any more support from sixth form? It's hard to concentrate on work when you are on edge. I wish I was more consistent with my son but we all have good days and bad days like anyone. We just keep going don't we. I hope you manage to find time for yourself and destress. Take care

Hugs. It sounds like you need to find a support worker firstly. Then talk to your family doctor about the option of medicine to help him cope better. Respite care might also work.

Okay definitely a Monday pattern emerging here. I had to collect DS at lunchtime again as he was feeling so low.
I’m wondering if he is having trouble with the shift in emotions and even a slightly boring day seems so much worse to him.
He actually had a VERY good week last week and said he felt better than he had in a long time and was actually starting to feel proud of himself . I thought ‘Hoorahh he is actually settling in’ but then today he just needed to come home.
School are already expressing concern at how many lessons he is missing but I wish they would just back off and understand that we are in a marathon not a sprint!

Sorry you're all having a tough time

I also had to collect my asd sixth former early today, missing the afternoon again.

This is the longest term so I think they get tired.

I'm also constantly on edge and it's exhausting.

No helpful advice I'm afraid, just empathy xx

@TReXX - hard isn’t it, although it does put it into perspective for me when I hear that others are struggling too and yes it is a long term and I know I’m exhausted so our DC must be too.
That and combined with a truly awful year 11 and next to no meaningful sixth form transition I guess they are all doing pretty well to rock up - even if it is for just a morning! X

[quote Nixand2]@TReXX - hard isn’t it, although it does put it into perspective for me when I hear that others are struggling too and yes it is a long term and I know I’m exhausted so our DC must be too.
That and combined with a truly awful year 11 and next to no meaningful sixth form transition I guess they are all doing pretty well to rock up - even if it is for just a morning! X[/quote]
All very true!

Mine is very good at appearing to be coping while not really so it can be hard for teachers to see when they need to lay off a bit!