Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

madness that's a huge step being able go overseas for a few days and leave her.
Runner another big achievement there for your DD visiting her sister

DS has just got in taxi.he seems accept has to go but his spirit seems crushed.hes exhausted and miserable.you gave repeat constant single sentence instructions and he's irritable and snapping.he keeps saying they ve betrayed him.

We had a good week last week as ds attended school every day. For the first time this school year. Sadly he's not planning on going in this week, as it's exam week. I have a meeting this week with the school and i suspect they will say they won't put him in for his Gcse's, as he's just missed too much. Meanwhile ds is back to curling up into a ball again. After being bloody rude & arrogant to me all week.

@Fferny1 I completely relate. DD is very all or nothing (because the transition is so stressful I think) So she will go in to school for a whole day and go to everything, come home, meltdown, and then be in bed by 5 till the next morning, and unable to go into school for another week. Hold on to the good week. Was he happy and coping?

@Stilllivinginazoo I totally relate to that crushed thing. Its a hollow victory getting them to school sometimes isn't it?

I have been up with DD since 6 trying to get her to attend today, and DH has driven her in half an hour ago. I hate myself for the cajoling and coaxing and all of that. I just don't know what to do for the best any more.

The reports said that he was positive & engaged in school last week. He was gruff & exhausted with me. But the Psych. reckons it was due to the ADHD meds wearing off just before 4pm. So we now have an extra mini dose to keep him going for longer. But if he's not going to school there's absolutely no point in testing this out.
I'm afraid I lost my patience with him last night as he's been so obnoxious all weekend. His brother came home from boarding for the weekend and said hi to him and he slammed his bedroom door in his face. And he's been playing loud online games with his friends all weekend.

Oh that early morning persuasion/coercion Is just the worse feeling - so exhausting and it seems so futile at times ...

Bubble therapies can be anything from your typical CBT to narrative therapy to art/music/drama/canine/equine/aqua/play/Lego therapy or mind jam, I have even heard of alpaca assisted therapy! It is also possible for you to get assistance dog training in the EHCP.

If DD is like DS1 she worries about all of your examples equally and all are equally big problems. Even many years into this DS1 still mostly rates all his problems as a 5 on the scale that goes with Zones of Regulation.

DLA is based on needs, not a diagnosis, but it looks at what help and supervision a child needs rather than what they are receiving, so even if a child isn’t currently receiving all the help they need it’s still possible for it to count when claiming.

Runner Each time the LA amend the WD check it careful because some LAs naughtily delete proposed parental amendments they don’t agree with rather than leaving them in bold. Have you threatened to begin Judicial Review proceedings and complained to the LGO?

Hi @thedefinitionofmadness sorry for not engaging with you sooner on here. Dd was sick all last week and bless her, she’s infected me! I’m run down by all the stress and my immunity is shot. So I have not been posting. But welcome. I have recently been in a similar situation (detailed up thread). I’m so glad to read that sense has been seen, it’s ridiculous that you were even put in a position of it going to attendance panel. Totally shameful of the school. Putting in a formal complaint certainly helped us and ds. Our formal complaint has finally resulted in him getting some serious support in school and it’s made so much difference. I didn’t even realise that they could provide the level of support that they are giving him now so it was all worth it. Go for it. You have nothing to lose.

@Stilllivinginazoo I’m so sorry to read your posts and I’m sending you hugs. It’s always hard to know if we’re doing the right thing. CAMHS said last week that we are right to push for self care (it’s a daily battle) and actively encourage him to go to school. Apparently his masking and people pleasing are adding to his exhaustion and causing the irritation and lashing out once he’s home. (Aka the fizzy pop bottle theory). He has now been given this super exit card that excuses him from a full class when he’s overwhelmed and it seems to be really helping. We also been told to leave him to decompress for an hour when we get home. He can do anything he likes in this hour. He is usually just in bed zoning out but again, this has helped.

Always, keep going with it, it can take up to two hours to work, however agree with Leap that maybe you don’t have the dosage right. Giving it too early won’t be the problem as the effects last for 6-8 hours usually and as long as 10 in some.

Take care everyone.

@Mummyj12 I'm so sorry to hear that the added stress has made you rundown and ill. I'm glad you're getting some positive feed back and help from school.
Umm ... that fizzy pop bottle analogy is maybe applying in DS's case.

I'm feeling at the end of my tether, with no more left to give.
I think it's almost worse having the odd good day/week with ds as it gives me false hope.

Thanks so much @Fferny1
Also, you and I definitely seem to have some similar challenges from what I gather. Your ds acting in that way at home and in particular over the weekend definitely resonates! I’m glad to read that your ds engaged well with school last week. I hope he has another positive week this week and that the new top up of meds make a difference. However we absolutely bear the consequences of them putting so much effort in. I’m glad that he knows we love him unconditionally and that this is his safe place but I go from being constantly worried about him in the week to being exasperated with him when he’s lashing out and giving us so much s.h.i.t at home!! So don’t worry about losing your patience, you’re not a saint. Just a great mum who’s doing their very best xx

Fferny masking at school and exploding at home is common. Are you looking after yourself? Have you sought any additional help - counselling for yourself, medical needs tuition, EHCP, social care assessments etc?

Mummy hope you are both feeling better now. There is a huge amount of support schools can provide, and even more with an EHCP.

When used for insomnia promethazine typically works quicker than when used for travel sickness, the NHS recommend 20mins before bed vs 1-2hrs before short distance travel or the night before long distance travel. See here.

I am glad it is DH’s turn to do bedtime tonight. DS1 has been very anxious all day and isn’t settling. Getting him to do physio this evening was like pulling teeth.

I've just lost my cool with the HT at DD's school
I was there sitting in reception whilst DD managed one single lesson and 20 minutes of break and she came to say hello. I asked her why they had chosen to request an LEA attendance panel when all attendance was authorised (and medical evidence provided), against their own and the council's published policy, when they hadn't progressed or responded to any of my requests for SEN involvement since June, and why the idiot (managed not to say that) Deputy Head is sending emails like "is it the travel to school that upsets her, is it the chilly mornings?" .

Madness Did the HT reply? I hope the lesson and break DD managed went well.

@1leapforward2back she said I'll have to look into it and then the SENco arrived and rescued her. She's ordinarily strict but I thought, hitherto, quite good.

DD cheerful. It is about as long as she can keep a brave face on. It took from 6 - 10 am to get her to go though, tears and stress.

I suspect our children may go to the same school @thedefinitionofmadness in that the school is tone deaf and the deputy head is a nightmare (and on a complete power trip)!
Although our head is male…..
Hope your DD is ok.

Thanks so much @1leapforward2back DD is back at school and lots better. I’m on the mend thanks to the antibiotics. Sometimes your body takes over and makes you stop…..!

Well today's already made me want to go back to bed!
Dd2 still exhausted,hips and knees hurt,armpit painful and exhausted after her second covid jab sunday.she is very anxious as feels off and hardwork
Lil zoo has migraine as been refusing to drink properly for a few days- it started last night and I managed get her to drink 500mls squash but after 200 ml carton juice day before and nothing day before that was too late to stop it
DS refused get up for school(first time EVER) but I'm not surprised tbh given school are still pushing MS English and a girl who goes into ms most of the time gave him a work booklet of poetry analysis he doesn't understand and said they've moved her to sit by herself ready for him to come sit next to her
He is not coping anymore.hes not allowed hide in library and it's too loud,peopley
He's afraid one of the boys
Two of the toilets are blocked/flooded and his OCD is really not coping with that(you can use the other one or the disabled toilet but day before yesterday he misunderstood and thought could only use MS loos so didn't go all day and was upset and uncomfortable when he got home and bursting to go!)
He hardly ate last night and was on verge of tears all evening
He can't decompress anymore gaming as he can't do creative as he's imagination has shitdown and he gets angry can't do the adventure games.ive been reading to him and encouraging him to colour and listen to things that he likes whilst doing it,but he's on edge all the time
I've cancelled today's taxi(hes bigger than me and there's no way I can drag him out if bed) and will be ringing the unit and having things out

Mummy sadly all too many schools, and LAs, fail pupils with SEND.

Madness the evasiveness and feigning ignorance is exasperating, the final decision on a referral would have been hers.

Zoo I hope DD3’s migraine abates soon. Severe fluid restriction is a red alert on the junior marsipan criteria. If it continues take her to A&E. Why isn’t DS allowed in the library? Doesn’t the ARP have a quiet room or sensory room similar in set up to the library? How many are in the ARP? Is DS receiving any therapeutic input whilst there? I hope they are helpful when you call.

I heard this morning the LA don’t plan to amend DS3’s EHCP following AR, which is good news. One less thing to worry about.

leap ed team have ditched dd3 as WFH is above 100%,and has been a while.shes "ment" have cams support,but that's still try be sorted...
Having spoken to staff,they discourage D's be in library all the time as he tries avoid having interact with the others as they're "too loud and annoying"
I've also spoken head unit(who tested positive on lft in school yesterday,and now home awaiting PCR result).as there's no way we can get transport sorted before Xmas,plan is WFH til Monday,then try Mon and tuesday.if units not to manic,we'd too.but not Thurs and deffo not Friday as no lessons/wi be very loud and excitable
I'm annoyed he didn't get letter Vax was being given in school,so I need try and chase one up at doctors
..

Even if DD3 is no longer under the EDT she is still hitting the red alerts so I would take her to A&E if she continues to restrict fluids. Alternatively, have you called the CAMHS crisis line?

Is there any OT provision in DS’s EHCP? Do they not have a quiet room DS can go to instead of the library? Have they tried to build relationships with quieter pupils? It is nonsense the LA can’t sort transport quicker. Can you book a vaccine online, or are there any walk in clinics locally?

Hi all. It seems a recurring theme that schools are less than helpful, or even make things worse.
Zoo I really feel for your DS, it sounds so tough. If he needs to not interact with people, what is the problem?
Fferny what you said upthread about the early morning coercion to get them to school really resonated. I find it absolutely exhausting.
Luckily DD1 has had a much better few days, and has been going to school without any persuasion. She is exhausted by this though, so much so that I had to employ the coercion to get her to see her counsellor after school yesterday. She wants to stop the counselling, saying all it is doing is giving her grounding techniques which she knows anyway and don't really work. Also she says she just needs to go home after school. Not sure what to do.

The library is his chosen quiet room as none the other student tend hang out in there
He is encouraged to interact and does intervention within his regulation and morning work
Trying to get hold the ehcp team is like trying to get tooth fairy to do a teams meet.they all WFH and NO ONE picks up emails/replies.i am fed up of it all

Fluffy would counselling in the morning be possible? Possibly a different type of therapy too.

Zoo from your posts either DS’s EHCP is useless or he isn’t receiving the provision set out in it. Where’s the MH support, OT, SALT. If DS copes in the library why not try to bring another (carefully selected) student to him to start with.

The units been open 10 weeks and the head admits she expected lots DC like indy,not what the unit has.on paper they meet criteria as are academically able but as some have been out of school so long they have huge learning gaps and are not ready to work like D's does.he equally hates everyone as they're overall very loud.he likes one girl,but she is in MS mostly just occasional visits in when they can't meet need

The presentation of others in the unit should not detract from the provision DS receives. Sounds like excuses. The unit could facilitate building a friendship with the other girl. Although why is a pupil who this early into placement can spend the vast majority of the time in MS in ARP? Is there anyone from MS who the unit think DS could build a relationship with if they came into the unit at points? Other ARPs sometimes have success with this.

Work and life been busy so haven't managed to post for a while (despite meaning to several times) but have been keeping an eye on the thread.

Zoo - it all sounds very stressful for you at the moment and disappointing that DS's school aren't managing to meet his needs currently.

Runner - well done to your DD for visiting her sister recently.

Hope everyone has a decent Friday.

Hi everyone
Sorry it has been a while.

Zoo - it sounds like they could be doing a lot more for your DS. :(

DD has been I afternoons only this week as she is so tired. She can't get up. She has stopped her melatonin which helped a little but they've change the approach at school so her free periods are more structured with work catch upand it shows.

I think I mentioned she has been discharged by the EDT but weighed and measured at the weekend. She is now 5ft 1 after a growth spurt but has dropped from 34.5 to 34kg. She is in y10. No wonder she has no energy. :(

The EHCP draft came through yesterday and I rubbish as expected so we are getting new assessments by OT, SALT and CP but we can't get them until Feb so need to delay the timings which is frustrating.

It's a difficult time of year for many. Just do the best you can.