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

She is academically able and doing well in most lessons. A lot of teachers (the ones she likes) would not know she had ASD if she had not been told.

Just ended up not going on a family day out as dd couldn't manage the train. Dh and dd1 have gone alone to visit relaives while dd2 and I have come home.

Anne
Is there anything you can do together,or are you exhausted if it all and in need bit quiet time to yourself?

Anne, sorry today hasn't gone as planned.

Feel free to ignore, I'm sure you've thought of these ideas, or they don't work for you. The Q's are just thoughts, you don't have to answer.

It's not just academics, especially as she's struggling socially and emotionally. This is where the school should be focusing. DS' are academically able, but DS1&3 have EHCPs for SEMH and ASD respectively. As a recently diagnosed teen girl there must be something to make life easier for her, and you, before her MH deteriorates further.

The school should be dealing with bullying. Are they helping with social skills? If DD can't manage DT or PE they could focus on these when in student support. She's not left to her own devices in student support is she? What about ELSA? Is student support open at lunchtime? Do the school have a lunch club for those struggling at lunchtime? Have they asked the specialist teacher for advice or to observe? Does DD have a key worker/mentor? Does she have a time out card? Have seating plans in all lessons got her sat in the best place for her (front/back/side/near door/near window/on own/next to friend)? If DD doesn't have to mask as much in other lessons DT and PE may be easier. What are her organisational skills like? SALT/OT/EP assessments?

Do another group in DD's year do the tech she is doing now? If so, DD could stay where she is and join the next group doing that rotation. Alternatively, what is student support like? Some are suitable to do some form of food tech, some even have microwaves or ovens, even if it isn't the dishes the class are doing. Gloves can help if there's sensory problems of food on her hands. School could provide 1:1 support if she did make it into the classroom.

PE - do they have a gym? I know 2 pupils that don't do PE but are supervised in the school's gym. Does DD like any of activities done in PE? If so, as other groups rotate around different activities she could join the next group doing the activity she's OK with. Being unable to tolerate the changing rooms can be sorted by changing separately. Do others in the school have physiotherapy when she has PE? If so, dependent on the type of physio, I have seen it work where a student joins another's physio session. Do they have a multi sports group at lunch for targeted pupils? Is it only participating in the activity that is the issue or all of it? Could she umpire/coach/video?

Does DD like horses/horse riding? The RDA are brilliant, and I know pupils who go to the stables the afternoon/morning they have PE.

Life skills lesson #1 began yesterday evening. Teeth brushing. Oh dear. This is going to be a long process. Normally DS' have a go with constant nagging then DH or I finish off to make sure they are done properly. Last night and this morning they had a go then used disclosing tablets and finished off themselves. It took an age, lots of instruction and I still ended up finishing off DS1's.

Apologies for the long post.

Yet again,one-step so many fab ideas some of which I will take note in case dd2 needs extra support

Hello amiable, So sorry anne
Love to the rest of you.
I will contact agencies if I am still unemployable by January.
Tbh noone would take me just for a day atm, I'd scare the kids
Both eyes swollen now. Have just taken ibu and am having an awesome duvet day. Kids are delighted as I am giving them unlimited roblox this afternoon. Needs must. We are all warm and being lazy daisies and normally I would feel guilty about all the stuff that needs doing or should be done but shit on it
Big hugs to you all. Love you for keeping the thread going zoo and onestep you have so many ideas. Always grateful.
Stay cosy people X

i might be watching Strictly videos on a loop

Oh no Rage, your lazy duvet day is well deserved. Don't you dare feel guilty! No one is going to be harmed by a few down days when you are injured.

Zoo - I am exhausted, yes.
1ststep - thank you. Lots to think about there. Some yes, some no and some things we hadnt considered. I need to talk to dh about it. I need to book another meeting with school o think. I am just getting tired....
Rage - binge watch away.i watched an entire series of 'skin wars' on netflix yesterday with dd. A body painting competition. Like bake off. Was great.

Dd and I are off to psychiatrist this week. I think she needs stronger or different ads

Anne good luck with that
My binge watch of choice is old episodes of call the midwife

DS did an hour of brick church(2 he session,but was agreed that would be far too much for him)walked down with church member he knows,we collected.curates D's has ASD and took a shine to him offering him a picture which he made a thanks out of Lego for!he made multicoloured sheep as Joseph and his coat of many colours was the theme.he spent last 15 minutes well separated from the group,but at that point was talking to the church member who was looking after him(he knows her very very well as we visit her home as she has lots pets,lately adding two kittens he adores,)they said he did great.he came out saying was "a bit fun"(the equivalent of other kids saying best thing EVER)by time had walked home he had negative spun entire thing but I still felt HUGE progress and was lovely to see him interact,albeit briefly with curates son(he's much younger,about 7-8.ds is 14 next month but to talk anyone not adult is massive)after church member said the boy seemed drawn to D's and asked why he didn't talk much.when explained D's was like him he seemed doubly determined to interact with him which I found very cute

Zoo, sounds like brick church was a success!

Rage, how did the duvet day go?

Anne, any luck with the school meeting? When is DDs appt with the psychiatrist?

DD had another meeting with her therapist today, went better than last week, but once again when we left she totally refused to go to school. Mainly because she has drama on a Monday, which she hates with a passion. The idea of performing in front of others is her worst nightmare!

As soon as I told her she could come home she perked up, and even started to do some maths homework when we got home! Her school report came through, a couple of subjects were marked A, meaning she attended too few lessons to be assessed. Her year manager is brilliant, really supportive, and we've got parent's evening in a couple of weeks, so we'll get a chance to discuss everything face to face with her then.

I only slept about 4 hours last night, everything spinning through my head. I have a chronic illness, so need to take care of myself, so an early night is in order tonight. I'm hoping I'll just crash out cos I'm so exhausted!

Anne, I think another meeting, this time including the SENCO, is beneficial.

Zoo, I'm glad brick Church was a success. Does DS like Lego? Lego therapy can be successful. It is the only kind of therapy that DS really engages properly with. I wish DS could engage with EMDR, I know it would help him.

Amiable, I hope you slept better last night. I would arrange a separate appointment with the HOY, or SENCO. It's unlikely there would be enough time to discuss everything in detail at a PE, and others may be able to overhear.

DS1 didn't have a very good day yesterday or last night, consequently he is exhausted today.

It's hard when it takes all their energy isnt it 1ststep

Psych meeting is to tomorrow night so have to see how that will go.

School have emailed today about food tech next week. They have said they will introduce dd to the new teacher this week in advance, and talk to her about doing the cooking at home (I suggested this last week). So she can do the theory in class and practical at home. Dd seems ok with the idea but we will have to see if she can cope with the sensory side of things.

I think I prob need another meeting with the senco although I think I might get better results just telling them what I want. They seem really open to ideas and suggestions.

A mix bag today
I had take youngest to doctors-she has gut issues and after I knew wouldn't have time get shop and meds sorted and do wellbeing cafe with D's at same time.so I left him there doing it with a lady he knows but isn't the group leader(there was a funeral in actual church and all our church members were paying respects)I left him making Xmas cards and promised be less than hour and youngest had phone so if nec he had contact.he managed 45 mins before start text her by which time we were almost back there

Downside he's extra anxious and clingy tonight as luck back to change routine plus as she's home few days on new meds protocol no visit to see kittens with lady who looked after him at brick church tomorrow which he had been talking about for couple of days
Expecting a difficult evening with him
At least I'm home a day tomorrow so I may try and slide in a lay down if I can get him busy enough to let me be for a bit....

Anne, I often tell school, and other professionals, what I would like to happen. 99% of the time they listen. Cooking at home sounds like a good plan. I hope DD can cope with that.

It is exhausting watching them get in such a state the energy drains out of them and they don't know what to do with themselves. Exhaustion got the better of DS1 and he cried himself to sleep.

Sorry to hear your youngest isn't well, Zoo. DS did brilliantly managing 45 minutes given the change in routine.

We have been granted DLA
Middle rate personal,lower rate for help getting about
In other news,he saw O.T today.she took him out to see sheep (near village church he does brick church at) and little walk away from some horses
He didn't want to go full stop,stating didn't want be away from me.as been up most night I needed break and happily chivvy him on her cues to go!
On return he go straight to room.she said he wasnt happy she wouldn't let just do sheep.had palpitations and start dribbling so bad.sge remind him if their plan n eventually he storm off lead way to horses(she was unaware of exact location of fields,we visit iften) to look at them) he was very hyper aware /agitated in way back to car.she said if he's upset/angry remind him it's my "fault" not mum's and to note why he's angry with me
All well and good but I now have a very resentful /stressed D's who I know will keep me up most of the night.hes already hyper anxious and has been get steadily worse last week or so(incl wee on toilet paper on the loo seat a sign he's really not at all happy)I assume it's the speed of of change as agency's rev up of EHCP prep etc
Sen support services have booked come see us on 3rd Dec
Next week peadiatric check for EHCP at hospital and meet our caseworker for EHCP
I'm pleased things seem to be moving forward with support etc,but exhausted try manage him and uncertain whether he needs to be comforted or be told firmly change is happening as it's best for us all

On top of this dd2 has sixth forms to look at and "d"p won't "risk requesting leave to help at short notice(5dats notice) in case messes references for new job"..thus dd1 who drives us drafted to help with tonight(at her current school) I am "not interested" in her life etc.i lost it after try contain D's all pm and snapped at her I can come but will be in bloody lobby trying to calm a flapping,pacing,dribbling,roaring 13 year old not able to focus on how proud I am if you as you dad's not there to watch him so I can support you properly

Brilliant news for the DLA, Zoo. It always hits me hard when my DS' awards come through, confirmation of their needs. Do you think that's the right rate? If you get tax credits don't forget to let them know. And, you can apply for carer's allowance. It is also good news the EHCP is moving along.

I'm sorry to hear DS' anxiety has increased, and the OT visit didn't go well. DS1's anxiety increased before it decreased. I too got the brunt of his distress. Remember DS takes it out on you because you are his safe person, you will always love him regardless of what he says or does, and he knows that.

There is a fine balance challenging DS and comforting him, getting it right is hard, but it doesn't have to be either or. He can not continue as he is, and needs help. If he can not rationally see that, or act on it, then unfortunately it's one of the things that's for the greater good. But, that doesn't mean you have to go from A to B without adjustments that could make it easier along the way. It's really difficult when you wish you could split yourself in half.

Can the next thing I prod you into applying for be either a Family Fund grant or social care assessments? - A carer's assessment for you, and an assessment by the disabled children's team for DS. DS should have a social care assessment as part of the needs assessment anyway. And children's services can direct you to Young Carer's too.

I had a really shit morning. I visited a secondary SS, and after a frank discussion with them it hurt to think DS doesn't really belong anywhere.

Hey Zoo. I presume it is good news about the DLA? Sorry, I haven't RTFT, so still trying to catch up on some stuff! Is that the amount you were going for/expecting?

I get what you mean about needing to be in two places at once. I find myself spending so little time with DS at the moment - DH really doesn't understand DD's anxiety and invariably they end up shouting at each other, DD in tears etc, so DH spends time with DS and I spend time with DD. Can't remember the last time we did anything as a family .

DD refused to go to school yesterday but went today OK. Think it helped that they only had a half day as the school has a 6th form open evening tonight. She's been on the fluoxetine for a week now. She does seem a little calmer, but not sure if that's the meds or just how she is!

Hope everyone else is doing ok.

Zoo - that is good news.
1ststep - those moments where you think about stuff can be upsetting :(

Psych last night went very well. He is so lovely. He has increased her sertraline to 75mg as she is clearly not coping, wants to see how we get on with psychologist when we start in december, and he is not happy with the school. He thinks they should be doing more and wants to take me out of the equation and asked for the phone number of the senco so he can call them.

Anne, I agree with the psychiatrist. I hope the school are more responsive to him than they have been to you.

Amiable, I hope DD managed school today. You should also consider applying for DLA - the Cerebra guide is a helpful resource when filling the form in. While I'm at it I will also give Anne a prod.

Zoo, I hope you are OK.

I know when schools say 'can't meet needs' it's not personal, but the rejections are heartbreaking, it comes across as we don't want your child here, especially if the rejection comes after an assessment day/visit.

DS didn't have a good day, a consequence of DS' being late to bed last night due to DS2&3 watching the football. This weekend we need to go shopping, the boys need suits for a wedding that I'm not even sure DS1 will manage and DS1 needs shoes. I am not looking forward to it, we can not come away without at least knowing what we are going to order online.

Hello I found you all again

Zoo it all sounds very stressful but reading this after a bit of time away I was amazed to hear that DS let you leave him at a group and also went out with OT and you had some time by yourself. I agree with what others said and what I have repeatedly been told - anxiety has to increase to progress. Which is exactly why DD1 won't challenge herself - the anxiety is too much. That said, she is doing better in some ways. Eating rule is completely entrenched but she is less horrible to me which is a good thing!

We are working towards a diagnosis of ASD - the psychiatrist who has now left is writing a letter and we will go back to the GP for referral to CAMHS. I'm really surprised by the lack of support from family and friends about seeking a diagnosis - they all tell me not to. It's infuriating - everyone says that they want to get rid of the stigma of mental illness but when it comes to it attitudes don't seem to have changed at all!

I found this quote about girls with autism the other day and I sent it to DH and his response was "That pretty much covers it!":

Anxiety and meltdowns
A high level of anxiety is common among girls with autism. The world can be a confusing and unpredictable place. To minimize this, they may need to exert a high level of control on their environment and the people in it. This can result in quite ritualised behaviour, inflexible routines and meltdowns when unplanned events occur.
Autistic girls often want to please, and will spend all day at school trying very hard to do the right thing.
As a result, home life often suffers as they vent their frustration and anxiety for hours at the end of every school day.

I hope you all have a lovely weekend. I promise not to lose you again despite MN best attempts!

Good luck your shopping 1ststep.

Amiable- the ADs made difference for us quite quickly

Bigbus - welcome back. Go for the diagnosis. It will help your dd, mine now understands better. The quote sums up our life exactly :(

bigbus welcome back!that girls description of ASD sounds like both of my girls
One-step I take it personally that D's school have said they cannot meet his needs once ASD is diagnosed,it's horrible as a parent striving to stay afloat on a daily basis for someone else to say actually we can't deal with your son's needs.WELL I BLOODY WELL HAVE TO I want to tell...

Hope everyone's having a peaceful weekend
I got call outreach.a tutors coming Friday pm to meet D's.they will bring something art based or a game for during brief visit.its on back meet caseworker for EHCP in morning,so hoping not too much of an overload but I'm desperate to start having them on board!
Dd1 took dd2 to local college today to look at a level courses,then they went out for lunch,back to hers for a bit followed by took dog to groomers and then back here we walked Yog together at local nature reserve.dd2 petrified if dogs but has taken proper shine to their 12 week old pup he's a cross bred collie,German shepherd.smart as a whip,and very affectionate.not too bouncy and doesn't try to nip unless he's very over excited.she gets much comfort from our cats and I think he will add to this,plus a day off of being here with D's,dad not doing much to support any of us etc hadms given her a break,but then I wonder if coming back it's worse for the "other life" she's had chance to lead today

Can I join in ? DD 8 suffers from anxiety and the GP has referred her to CAMHs - can some of you wise and experienced Mums explain to me what to expect next . It’s been a tough few weeks/months/years- I have posted a few times before and will post more details later- right now just here to join you all and get a hand hold,

Welcome Autumn. Getting a CAMHS referral is the first hurdle. Depending on your area you may have an initial phone consultation or appointment to decide what CAMHS can offer, and which pathway they should place DD on. You may also get some questionnaires to fill in. Just to forewarn you there is a chance CAMHS will reject the referral or ask the GP for more information, so if you start making notes it would be helpful. They may also ask school for their opinion.

Big, I'm sorry to hear about the lack of family support. I agree that societal attitudes to MH difficulties haven't changed at all. It's still very much the poor relation of organic illnesses.

Good news about HOE, Zoo. DD2 sounds like she had a good day. Does dp realise how stretched you are? I would rather honesty, than schools insisting they can meet needs when the reality is woefully lacking, but it doesn't make it any easier to hear. When DS was teetering on the edge of an admission I told professionals that looking after DS1 24/7 was going to end up with him seriously hurting himself or me burning out, and we needed more respite. It worked.

We got through shopping without a meltdown. After visiting M&S, Next, John Lewis and Debenhams we have one complete suit and 2 part suits and some Percy Pigs, chocolate and an excitable Edgar - I'm not actually sure how DS3 got DH to agree to that one. I've ordered the remaining bits online. We didn't do shoe shopping. DS1 had had enough, and pushing on would have resulted in meltdown.