Parents of anxious kids/teens support thread(part 2)

[Stilllivinginazoo]

Hi everyone
Our original thread filled up fairly fast so I'm offering a second one
Anyone who cares for a child/teen with anxiety can join us as a comment,or hang around
Post your worries,your tips,ask for advice,rant about your day -we understand
Also feel free to share any small victories

How's everyone today?
I've been bit grumpy this weekend(lack of sleep) so lack of structure as I try and plod thru day with eyes half open hasn't helped D's.must do better tomorrow!
New week,start again etc
Took everyone out 530 for stroll over local nature reserve.we don't usually do that,walks are always first thing,so made change to see different insects,birds etc and the light was different which gave the long grasses a golden hue forgot take photos as was busy trying to manage D's as was fearful of teens messing around and having fun

I am sorry for jumping in and posting this here without reading the whole thread first. I posted on the support thread in child MH, but it is quiet over there and I am desperate for ideas because I feel it is close to crisis point. I have also previously posted about this elsewhere on MN.

I have a DS(9) who has complex MH problems and some physical medical conditions. Bedtime is horrendous, he struggles to fall asleep alone (v high anxiety about being left) and wakes frequently. He sleeps in our bed, that's OK for now I just need to make nighttime as a whole easier for us all.

We have tried various lighting, a 2 way monitor, doodle book/pillowcase, worry book, music, white noise, dream pad pillow, ear plugs, tents, weighted blanket, teddy, relaxation, various apps, brushing, audiobooks. Medication - melatonin, and an antidepressant that he takes at night makes him drowsy. Talking during the day about nighttime doesn't help because he has poor insight and can't put the ideas we discuss into practice. An adapted version of gradual retreat - it's not safe to ignore him, nor just leave him to self settle.

CAMHS can't advise anything we haven't tried and sleep clinics have refused referrals. I am desperate to improve our situation.

I am really sorry for just dumping this here, and I will go back and read the thread properly now.

Welcome 1step
You don't have to read it all thru,jump in where you are
We basically rant, support each other,share our successes (however small) and chat.tje most important thing is YOU ARE NOT ALONE
Can I ask why you were refused sleep clinic referral?
My ds(13) sleeps near me and is struggling to settle/sleep thru.does he attend school/do you get any time not with him(I don't and it's exhausting)I would recommend you trying to get a nap in(if possible?)
My ds current bedtime routine includes shower,mohdoh(pretty much it's an essential oil playdoh) followed by u tube wildlife programs(I think they're BBC,think coral reefs with their sounds no commentary) whilst colouring,audio book for half an hour.all of these are on a tick list so he knows what's coming next..he doesn't settle/sleep but it buys me a bit of time out in the evenings as he knows he has to follow his routine.
We are on (huge) waiting list for sleep referral that was set up by camhs
Complete support and sympathies,sleep deprivation us a firm of torture after all!

Same here step - DS (6) sleeps across me/on me, when he's not wide awake at stupid o'clock and DD(8) insists she cannot fall asleep alone although classical music calms her down for some reason - Grieg, morning mood - which annoys the hell out of me because it's nighttime dammit!
I have no ideas you haven't already tried I'm afraid - we have Maccy D teddy bears that light up, starry light nightlights and an aquarium lamp but just end up 4-in-a-bed and the little one said most of the time. Works as a wonderful contraceptive, mind! If I didn't laugh I'd cry

Thank you. Rage, your post made me smile.

DS doesn't go to school, though he does have home tutoring and some of the therapies in his EHCP until a longer term placement can be arranged. Does your DS have an EHCP or medical needs tuition, Zoo?

You are right it is utterly exhausting. We get some respite, we tend to use the overnights to focus on other DC. Other than that I don't get much to me away from DS. I would love a nap, between DS and other DC it's rarely possible. We use visual timetables and now and next board.

The sleep clinics' (more than one) reasons included, DS is too complex - refer to tertiary centre, it is a MH problem, we can't offer anything additional to what you already receive/have received, we don't provide a service to children under tier 4 CAMHS care. We are waiting to hear if a referral to yet another sleep clinic has been accepted.

1step that's bloody frustrating excuses
We don't have anything in place at no.ds was in senco from sept- Xmas on reduced hours doing nothing as so stressed being there.occupational therapist from camhs deem him unfit to be at school January.not been back since.theyve offered a little homework couple months back,not prepared to mark it though he has done it as in own environment he manages a but better.i think we are on verge being forced into ehcp school reported me to child services,despite them doing a "safeguarding visit" they said they were happy with few weeks prior.reasonjnv us risk to my MH as I have depression and anxiety and manage ds and 2others still at home pretty much by myself

Sympathy for lack of sleep.
Ads and melatonin have been godsend for us but if they arent working I would maybe go back to toddler basics tbh and start from sleep training scratch?

Melatonin has helped DS's, and therefore everyone else's, sleep but not enough. The antidepressant along with an antipsychotic have helped his MH in general but not specifically sleep.

I tried adapting gradual retreat. It's not safe to ignore him he self harms, instead I told him I loved him and it was bedtime. I had to stop because he became v distressed when I wouldn't hold his hand or let him lay on my arm.

If I was you, Zoo, I would make a parental request for an EHCNA. Alongside that I would ask for home tuition - which should have been provided when it became clear your DS would be too unwell for school for 15 days or more.

I have 4 other DC, 2 primary school aged, 1 home from university for the summer and a DD who died.

1step in my area I'm told those to I'll for school can only access hospital tutoring,which although a small group it would be away from me which D's couldnt handle as his separation anxiety is currently through the roof.im sorry for the loss of your dd.you sound amazingly together with so much balancing on your shoulders
Have you got much rl support?

Sorry 1ststep that sounds very hard.

Zoo - sounds tough at the moment. :(

Dd is almost positive since diagnosis. I met with school yesterday and it wont really change anything as they were being supportive anyway but it will help everyone understand more I think.

Zoo, if your DS isn't well enough for small group hospital tuition then the LA have to provide something he can access. It's not optional for them, it's the law - they might need reminding. Here is the government document outlining what should happen. It might help to talk to IPSEA. Though if by hospital school you mean in a CAMHS provision I would bite their hand off - they will be well equipped to deal with separation anxiety.

DS has separation anxiety too. He thinks I'm going to leave him.

you sound amazingly together

^^I'm really not, though try hard to hide it - quite like a swan. DH is brilliant most of the time and my brother is supportive. I have a couple of good friends in RL, though no one I'm able to leave DS with - it wouldn't be fair.

Anne, perhaps having an explanation as to why your DD was struggling has helped her process everything. Other people understanding probably lessens her anxiety too.

Welcome 1step

Hugs and chocolate to you all . I'm sorry so many are struggling right now. Hoping for brighter days ahead Xx

Hi everyone
Da had camhs yesterday .O.T has learnt now best to ask questions during an activity rather than separately.they made playdoh and he sat making things as they chat about atrip to an insect house that was unsuccessful last year.he was modelling parts of his story as they chatted...she rang to tell me this,but mainly to inform me we have a TAF today at 1130! initially asking to have it here (I refuse point blank,no way ds can cope so many stressful people in our safespace)school's out of question as he will have to come with me.church it is then.she express concerns about school hols throwing us into crisis.tbh 6weeks of dd2 get enough sleep no school runs to plan around and no interference from school I'm looking forward to it!!still,I need to pull up my big girl pants today,wish me luck!

That's rather last minute Zoo. Good luck.
Were you not consulted about who to invite? Is the OT the Lead professional? They seem to have built a good relationship with your DS. If he engages best like that you could look into art therapy, drama therapy and therapeutic story writing. Do take notes and follow up with emails.

& for afterwards.

I read Rages nomination on the gin thread and found you all from there. I feel a bit of a fraud because DS isn't as anxious and volatile this year and he doesn't have a diagnosis. Last year (age 9) he had a very difficult year (refused to go into the playground; cried at every appointment, etc). School were so unsupportive that both his GP and his paediatric consultant offered to write to them but we decided there was no point.
This year, he seems more settled although for the first four months, he was waking every hour during the night. His consultant thought there was no need to investigate that any further and it has settled over the last few months.
I guess I'm just popping up to say I'm lurking and I'm in awe of the way you are fighting to get the best support for your DCs

lilliths welcome
Feel free to lurk,post about rough days,share extra good ones and offer advice if you have been there,dealt with that

So today's outcome...
TAF meeting has asked me to ensure ds continues to attend wellbeing cafe over school hols(Tuesdays)along camera club (Saturdays) and to try the family club on Thursday afternoons at church(mums n tots plus older kids in family) to ensure he continues to have social contact.i said will try the family one but if it's too much I'm not going to force him there.plus other groups I'm not making him do them if he's having a tough day- it's ment to be fun/trust building and if he's too strung out he's not going to engage!!
They want push me to go down the EHCP as school feel unless massive changes he won't make it back to them.im concerned about social care side not liking way I parent as mum with anxiety as today OT observed she has issues I'm feeding his anxiety and dp lack emotional support is adding to it also....I try to take constructive criticism,but if feels like a direct attack sometimes
They also feel so and I need couple counselling and he needs bereavement support.yeh,good luck with that as he's so fiercely private I jokingly call him furtive as after 16 years together I wouldn't say I know him well.its just how he is..I've earned her as left she pushes him too hard he will shut down on everyone,children included and blame me/them so she needs to tread lightly.shes not happy about that either....

Heyhoo.on plus church offered us financial support for a copy day out should we like to do that,and after I had chance chat to rev and she was very sorry for way child services waded in so tactlessly.she thought by saying she's worried and how can we help they'd offer advice not treat us like child abusers!!so bridges mended there and she now understands it's not so naively easy to get outside help.she has made very clear she and rest church are there for us and to ask anything they can do to help us,which was nice

I have to say zoo I am really impressed with the support from the church you have (I was brought up C of E and attended for brownie parade as a child but my father and partner are both atheist and I am a lapsed attendee/agnostic so have only attended school/kindergarten services in the last decade). The reverend where I am returning to is lovely - she was very nice to me when I attended on Xmas eve evening services (I used to go alone and probably seemed like a church tourist going once a year). I am not sure that my son would ever get through a service or Sunday school without bolting/disrupting - I could try but am not sure they's cope with him. I suppose, nothing ventured, nothing gained.
I am sorry the meeting has made you feel over-scrutinised and questioning your parenting as it is clear to me that you have your son's interests at heart zoo. I also think suggesting marriage counselling is overly intrusive. My son would probably not manage three meetings a week - it's not easy getting him through the door even if it is something you would expect all kids to love - cinema (too loud) circus (too bright/too many smells) ballpark (too busy) - and I am not usually anxious myself but not knowing what/when/how fast something will trigger him/cause sensory overload escalating to meltdown has meant I am on a knife's edge when going out.
It is bloody exhausting trying to cover all bases and anticipate all potential triggers. I wish professionals understood that - I think maybe you can only understand it if you've been there with a child of your own.

they's? they'd!

Zoo, I hope you are being kind to yourself tonight.

The current school doesn't sound like it's the right setting, without a good relationship with the school it will be almost impossible for DS to successfully reintegrate. I would apply for an EHCP.

Initially could you compromise on the groups saying that DS has to try 1 or 2 groups a week but if after so long it is too much you will take him home. Given the choice my DS wouldn't leave the house, but that isn't realistic or in his best interest, sometimes he needs someone to say you have to try - it's the approach the CAMHS unit DS attended took. The Rev sounds supportive, could you discuss it with her.

I had counselling, I would still if I had someone to look after DS while I went. Someone I didn't need to worry about upsetting and can offload to helped. In our case DS' MH deteriorates when I'm down. Though I understand feeling blamed.

rage our church is amazing.if he attends Sunday school when the children go in for blessings/communion the vicar comes to the hall door and gives him his so he's not overwhelmed by noise/amount of people

Your church sound very supportive, zoo.

They are Anne
How's things with you?

Thank you Zoo for your persistence! I have found you again. I hope you are all ok. Things are good and not good here. On the surface much better but underneath only controlled by eating restrictions and many other things. DD1 has some strange insistence that she was never going to get her period and that she had done something to mean that she was permanently damaged. Wouldn’t tell me what but insisted no one else was involved. All rather worrying until first period arrived this weekend - hooray! Eating is still up the spout but weight is maintained just about. We were at my brother’s this weekend - his 3 yr old vomited everywhere then when we go to our Airbnb DD2 was massively sick everywhere! V stressful for DD1, had to sleep on the sofa downstairs but I’m soooo impressed by how she managed. It’s a long road but I feel we’ve made some progress down it. And she doesn’t seem to hate me anymore!

Summer holidays will be the test I guess.

Thank you guys for all your support and I’m glad I’ve found you again.

Cheers to all
DS is telling me the history of pokemon again
This is why I drink.

Am joking. I am too immature for red wine, I am a zider drinker as the Wurzels used to sing but it is too hot for it. Hope you are all as okay as you can be. At least in this heat I relate to DS more, as in Don't Touch Me It's Too Blinking Hot.