Parents of anxious kids/teens support thread(part three)

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

Viking I get that.dd2 17 in April and I can't make her do anything,nor will she listen most of the time.shes drowning in schoolwork as isnt motivated or organised.failed assessment yesterday for not completing enough work.im pulling hair out(not literally) trying decide how best to proceed.she would easily accept at 17 to stop but then what?she used to be very organised and diligent
Runner that's correct lovely

Runner schools often offer short term ELSA interventions, but more is often required. A child with suspected ASD who can't attend school needs ongoing emotional literacy support. Some schools provide this without an EHCP, so the school need not wait. Although an EHCP can guarantee a certain amount working towards specific goals.

Apologies, too many acronyms in my pp. Yes, SALT is speech and language therapy. It isn't solely about the physical act of speaking. It looks at use of language. Many with ASD have difficulties with expressive &/or pragmatic language. Most benefit from SALT, otherwise it's unlikely they would meet the diagnosis criteria. SALT can help with selective mutism and anxiety about speaking too.

Viking I hope you do speak to the GP. It's hard when you're the one holding others up. Is DS under the impression adults don't talk about their feelings and need to "man up"? That could explain why he won't talk to anyone else. Or is it that he thinks he can (or perhaps should?) cope now he's an adult?

Zoo good luck with CAMHS and TAF today. Can you help DD2 organise her work and write a list of tasks to do broken down into small steps? After that I would limit screen time during the day for anything other than school work. She may be 16 and struggling but she can't watch TV all day whilst DD3 and DS are working and you are supporting them/cooking/cleaning/keeping the house going.

MDT meeting for DS1 later. Discussing perhaps changing his antipsychotic mediation.

How did meeting go skip?

Well camhs was disappointing but expected.as failed attend last couple anxiety group they trying offload her despite now having severe depression as disengaging.reality us she hates keyworker who doesn't ever listen or acknowledge and she feels frustrated and unheard and another member of team in group us so direct dd2 finds her confrontational and intimidating..she didn't listen and when I explained our relationship is suffering as she's so angry they just offer family therapy as a possibility.we don't need that,she's angry as need support with depression behaviours FFS.

In taf front,as always girls school eager to and do offer excellent support.they concerned school nurse absconded for covid vaccine means no one to support lil zoo with disordered eating.thats been referred to eating disorders triage thing.for dd2 her feedback on how copes lessons now means head of year can find out what needs priority to understand current work and which bits of backlog can be put asidehe can also ask staff in lessons which as less clear/structured to give her better instruction so that was very positive.he checks in with her weekly and posts daily mental health bits for the whole year.
For D's school didn't come,and are saying can't meet need.annual review is shortly and ehcp team will be invited to provide evidence of this.ehcp stalled as paperwork from me wasn't delivered to staff who needed itas we're home working.niw scanned over by Sen support the tightened amendments are imminent apparently.change caseworker has happened too.whole county backlog because of covid has slowed all plans apparently..
Also I know outreach here take end year 10 and help coach thru GCSE.ds did go into their bridge program aiming to get him into placement but then covid stop this process as no longer able to provide the link between there and new school etc.the most local school that has potential to nurture friendships and mental health offers very limited GCSE as do most in county.given how distressed he has become travelling out if county has become a no go.coukd he manage stress GCSE?he could do the work,but not sure actual exams?I've no idea what to go for

Current behaviour is appalling,he gets angry fast,exhibiting all highly stressed behaviours incl wee on back toilet hinges, palpitations that mean night waking,needing things said repeatedly as isn't taking things on board etc

I'm so run over by everything I don't know where to start!

Dd1 offering have them tonight again.dd2 refuses go,D's will go lil zoo goes.lil zoo don't want go and if dd2 won't don't see why she has to.claiming IBS last night which may be true or may be try avoid going.feeling like it's not worth stress "making" them go.they seemed enjoy it afterwards last time
I just don't know what I'm doing anymore

I hope DD3 and DS do go to DD1's to give you a break. A shame DD2 won't go too.

DD's school always sound supportive. It is disappointing DS' school didn't attend the TAF, but good news for your appeal that they have admitted they can't meet DS' needs. Make sure that's in writing in the TAF paperwork.

Don't let the LA use Covid as an excuse to drag their heels. The problem with mediation is there's no legal timelines, the LA can drag it out as long as they want, which is why the advice is to just get the certificate and go to tribunal.

Personally, I would find a school that can meet DS' needs within travelling distance and try not to worry about concerns over travelling. That sounds incredibly harsh, however many pupils and parents have concerns over travelling, but it is rarely as bad as feared, pupils do get used to it once settled. DS1 travelled over an hour to the CAMHS day unit. I worried he wouldn't cope as he hates the car but I loaded his ipad with Lego films/clips/documentaries and sent him with a tub of Lego figures and it did get easier.

There are a couple of schools within travelling distance of you that offer more GCSEs. When you were first looking I PM'ed you one that you said you couldn't visit before the deadline to name your preference. Well I would get in touch with them. Their GCSE results for several years have been impressive and I have heard good things about their provision.

Or the one you did visit that DS was comfortable with, but offered a more limited selection of GCSEs, either as a stand alone placement or with a top up of tutoring via the LA.

For us EOTAS was a last resort, it isn't in any of our best interests. In some ways I get the impression your DS is the same. He would be better in a setting, getting out of the house and being less dependent on you. Otherwise he relies more and more on you to keep him level and engaging with the world.

Meeting went OK, we are going to trial changing medication in the hope we can get further improvement and to a point EMDR is possible. Hopefully do it to coincide the worst of the effects of swapping with February half term. Then everyone's disturbed sleep is less important and we don't have to worry about school work. DH is going to try to book the week off work too so we can give DS1 full 1:1 if needed.

skip that sounds promising.i hope it helps

With regards him travelling,he won't improve on it,it's always been a bit of a problem get him to go in car if I'm not with him(ie dad/sister but only with siblings too) he would never agree to travel anywhere with a stranger,and for an hour there's more chance of hell freezing over.

What is EOTAS?

EOTAS stands for Education Other Than At School. It includes what your LA call Hospital and Outreach Education, but can also include a more bespoke package or direct payments.

Would DS be willing to try transport if you met the escort beforehand and went with him initially to give time to start building a relationship with the escort and driver?

Not a chance skip it's not something he will bend a mm on

Does DS' EHCP contain travel training? It should. Part of that should start with DS working through his fears with someone, perhaps a clinical psychologist.

skip DS1 has always struggled with his feelings. He is also an introvert and getting him to talk on his terms is like walking on eggshells. He also doesn't want to keep repeating his mh history with new professionals so will only talk to the two that know his past. Unfortunately one is the gp and the other is a psychiatrist who mainly only diagnoses. I'm struggling the last couple of days with some kind of ptsd that I need to get past but don't know how as the typical suggestions won't help me address and move past my fears.
Hopefully you will be able to swap DS' meds during the halfterm.

zoo wondering how the sleepover plans went? Sigh, I can totally relate to your son's rigidity. Getting them to bend slightly almost seems futile . Fingers crossed that the zoo household has calmed now that the weekend is here. How are you feeling?

Zoo I hope DS and DD3 at least did stay at DD1's, and you managed some time to yourself.

Viking Would it help DS to have a sheet of information he (or you) can hand to new professionals with a brief outline of history? So DS didn't have to repeat it. Or if he allowed it you could speak with someone first. For DS' we have a sheet with diagnoses, current medication, allergies, professionals involved and important history. When we go to an appointment with someone new we hand them the sheet (for DS1&3 we also give their hospital passport).

skip they did go,yes.no rest tho as dd2 has got into her head if stats awake til minimum midnight anxiety won't wake her and usually lil zoo is awake til at least then so she's not up and anxious by herself..I of course then had my usual night waking insomnia with no chance go back to sleep so am exhausted.oh well.im hopeful in time if it becomes a fortnightly routine things will get easier

DS extra stressed today.the dog was excitable and barked few times which makes him scared.we often get a "fallout" of higher anxiety after new or stressful experiences..

skip thank you - don’t know why I didn’t think that...or at least ensure psych and med records are read prior with an explanation or something by me if needed.

zoo how many hours sleep do you get? Oh gosh, the fallouts I know too well. When DS1 was 5 and diagnosed with autism, the fallout from a stressful assessment appointment was DS1 opening a bedroom window (once we got home), climbing out and lying down on the roof!! I left him for two minutes to play with his trains, then returned to find he took a sharp pencil to slice open the window screen.
I hope the weekend is calm

Viking 4-6 hours is a great night 1-2 at eorst- I sleep beautifully initially but wake then can't nod off again,my head located the most irritating songs on constant replay and I get no specific thoughts just a busy whirring kind of feeling.awful.i have to have a 20 minute nap in the day

Zoo I hope today is calmer. We get payback too, hence my usernames. It's an exhausting cycle.

Viking scary, they've just no understanding of risk have they!

The summaries save us repeating ourselves to new HCPs and makes sure we don't forget anything. Helpful for emergencies as well, HCPs can pick it up and provide basic care. DS' have a copy with their meds/inhalers/epipens. We use them when giving school/clubs info too.

We also have a more detailed, idiots guide, to caring for DS'. It includes detailed instructions of what medication they take, when and in what order, treatments, physio, where to find everything etc. But also their basic routine, things that help, triggers etc. So that should it be necessary someone other than me and DH could have a good go at caring for DS' in an emergency. With, hopefully, only mild chaos and everyone remaining in one piece. I recommend any parent with DC with additional needs has something similar. Hopefully never needed, but this last year has shown it's important to have emergency plans.

Earlier I kicked everyone out of the house for 30 minutes. I had great intentions of being productive whilst they were gone. Instead I had a bath in peace. It was lovely. Quiet was instantly shattered upon their return.

skip a bath in peace sounds way more productive than cleaning etc.good for you!

I've her lil zoo muck out her side of the girls room if doom.2hours,2binbags of rubbish,one of recycling and a large bag clothes that don't fit/are not "my style" ...

She's very particular about where things go that are in view and she has tendancy shove don't know where to put that stuff anywhere out of sight.its all lovely at tidy,drawers and wardrobe reorganised and underbed decluttered and neat.everything has a home and it smells clean and fresh as shook out her bedside rugmopped floorand polished.now I just need get her to keep on top of it all!!

It was lovely, Zoo. Undisturbed baths are a rarity. Normally there's always someone who wants something.

Busy week ahead. Several appointments and a pile of paperwork that needs doing.

I hope those who haven't posted for a while are OK.

Hope it's not excessively stressful skip
Ok too hope everyone's ticking over ok

I've made an unpopular decision...as of tom morning WiFi will only be available til 5pm.this will effectively stop dd2 scrolling/stream stuff to watch into the night.it will force focus on any schoolwork getting done in school hours for dd2.it will hopefully encourage mindful activities like family films,board games,arts and crafts instead of scrolling thru SM endlessly
Came about after a day of spats with dd2 who exhausted from stay up til 4am watching stuff as has convinced self can't sleep before midnight case it triggers waking with panic attacks before morning.she just wants lay in bed and watch stuff aimlessly and got point too anxious to choose to go out,gets highly stressed going to shops with me.i pointed out depression makes us feel we can't and you mustn't let it take hold or anxiety at shrinking world spikes too and things will be unbearable.i was branded evil.there were tears.
The other two are ok with it.ds can PS4 still for couple hours and I've spoken to dad to ensure playing together online us before 5 on days he's off.lil zoo like to do edits,which only needs WiFi to post,so she's fine with it too

I've made suggestions of a walk around block once woken and had meds as dd2 has to wait half hour after taking reflux meds before eat and tends get into a scrolling habit there.our roads dead at that time if day so will be good for a quick quiet walk.preventing build up if fear being out and hopefully invigorating a good start to the day.hope it goes to plan! The WiFi is for the month,to be reviewed at end and good things carried forward.we have made no plans over weekend use yet

I think you made the right decision Zoo. I hope yesterday went better than expected, but if not hold tight. It's much easier to keep a structured routine so I would stick with some form of restrictions on weekends, even if it is slightly later.

It's the shrinking of their world that worries me. DS1 doesn't have any friends, never interacts with other children, doesn't speak to anyone outside family and 2 close family friends, has limited interests, only ever leaves the house under duress...

zoo I hope the updated routine isn’t too stressful either. Best of luck . I had to google cushion vinyl flooring as it’s not a term we use here ... daughter’s room sounds lovely!
skip I worry about DS1’s shrinking world too. He had a falling out with a good friend, and only has one other that I know of also on the spectrum. But they haven’t seen each other in well over a year. Leaves to go outside maybe once per week (corner store, walking around neighborhood, etc).
I have no energy today and we were awoken this morning to workers replacing the neighbour’s roof shingles. Very surprising as this kind of work is not usually scheduled in winter. Just too cold here.
Have had 3 phone appointments with the school social worker. She has made a few suggestions and well as reading recommendations. She works only with the parents which I also found interesting. Fingers crossed.

Hope she has been helpful viking

Cutting WiFi out has been ok.few teething probs- D's was trying connect headsets with dad to play online and they took ages get it right,effectively killing all time to play so I allowed extra time as he was so disappointed monday.tuesday dd1 shops in the evening for us at Tesco and we communicate via messenger so as I've no mobile data we left that on,maybe til 7?it's off overnight and that has ment dd2 has had to settle without devices on.so far it's been similar times falls asleep as with devices do I'm hopeful she will get used to it and improve amount sleep accrued
Lil zoo didn't get up this morning easily as can still edit without posting online and was on it at midnight when dd2 went up last night.shes a dreadful sleeper but I think her laptop will need come down to enable better attempts at sleep
So far they've filled time doing various stuff individually-dd2 plays CSI game on Wii in her room.lil zoo edits/sometimes comes down and watches bits call the midwife on Netflix with me.ds colours with me and we have played dobble.both of which he has loved❤️
I think weekends I will keep similar hours but expect at least an hour of interaction(playing a family game or watching film together) to encourage less device time by themselves

Zoo I'm glad the internet limits haven't been met with anger.

Viking DS1's distress at leaving the house is why I insist he does go out each day. Even if it is only into the garden. If he gets out of the habit of going outside it would become even harder for him.

I hope the SW suggestions are helpful. I would be interested to hear any reading recommendations.

Hope you get a more restful night's sleep tonight, it would have been nice to be forewarned. I'm exhausted too, we've had 3 appointments between yesterday and today.

Zoo, I am in admiration of you cutting out wifi , I would like to do the same for DD13 but she has 3 older siblings 17,20, and 21 so as you can imagine turning wifi off would cause world war 3 and tbh she would probably use 4G anyway. I am pleased its gone well so far for you.
Sleep is a big problem for DD13, she has real trouble going to sleep and then staying asleep, she thinks watching anime etc is good for her as its calms her and makes her less anxious but I think it also keeps her awake, I encourage her to quietly listen to music but I think as soon as I walk away anime is back on. I take away her ipad (well its mine really not that youd know it!) and her nintendo switch but she will just use her phone instead and her phone is what she uses to listen music and relaxation apps etc .

Her SENCO was talking to me informally and suggested taking her to GP and asking about Melatonin, has anyone has had experience of their DC taking it?
DD13 started taking Setraline 50mg in October and at around xmas the dose was increased to 100mg, after a bumpy start with lots of side effects and being reluctant to take it it finally started to kick in in January and we had a really great 10 days ish but after that high things seem to have gone downhill again. I dont want to over medicate, she has recently started to develop OCD? like behaviour such as going to the bathroom just to turn the sink tap on or off.
Does anyone here have any experience of Setraline or melatonin?
Her room is a tip, she doesnt like me moving anything, her bedding needs changing she freaks out if I do it but she always promises she do it tomorrow and as we know tomorrow is always a day away! I told her tonight that if she doesnt do it tomorrow I will do it but the trouble is she rarely leaves her bed let alone her room!
On the plus side I have now written to LA and requested an ECHP, everyones suggestions as to what support to ask for were really helpful.
Her school attendance is virtually non existent (she can go in as she is classed as vulnerable) she sometimes logs into lessons at home but its just like the radio playing in the background, she is not at all engaged.
I hope everyone gets good nights sleep tonight, it is exhausting caring for your DC and trying to do the best you can for them while juggling everything else

runner does she have unlimited 4G?mine are capped quite rightly so dd2 won't date waste precious data for the whole month.uts forcing her to be creative.sleep solutions do not recommend anything with blue light in the hour up to sleep,or after that.walking outside before lunch is ment to help with circidan rythms that help regulate when to sleep I spout all this in hope it's useful.dont work At all with youngest
ADs should reduce OCD tendancies I believe?I'm hoping once youngest is properly "in the system" melatonin might be an option
Skip is the ehcp expert who I'm sure will guide you what to be asking for
How did apps go skip?

ADs need to be a fairly high dosage to have an effect on OCD.
My daughter took melatonin for about 18 months. It helped keep her asleep (she had circadin which is slow release) .
Antipsychotics (risperidone/quetiapine) were (and still are) helpful in reducing evening anxiety levels and making her fall asleep within 30/45 minutes of taking them.

Runner make sure the LA inform you whether they are going to assess or not within 6 weeks.

Limiting DD's screen time rather than wifi would solve the 4G problem. You can also turn off the wifi to specific devices e.g. you can turn it off on her phone but let older DC have access. Could you get DD something so she could listen to music without having the temptation of a screen? We don't allow screens in the hour before bed either.

I can't remember whether DD has ASD or is waiting for an assessment? Sometimes people with ASD can have OCD traits but not meet the diagnosis threshold for a separate diagnosis. I would ask whoever prescribed Sertraline about Melatonin. GPs in most (? all) CCGs can't initiate treatment. You can buy it online as well. DS1&3 take Melatonin it helps them both, but DS1's sleep is still terrible. Sertraline didn't work for DS1 he takes Mirtazapine and Risperidone (but we're going to be switching that).

Appointments weren't too bad thanks Zoo. CAMHS appointment just to check in with us before we switch antipsychotic. DS1 is still on the very long waiting list for an operation and an even longer list for a MRI scan (he can't cope awake and can't be done as a day case making it an even longer wait at the moment). One this morning however ended with DS2 having a tantrum. He's been issued an ultimatum he didn't like.