Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

@alwaysscared it’s likely that medication will take the edge off the anxiety and allow your DS to challenge himself to leave the house, even just to the garden for a short while and then slowly build it up. In our initial video consultation with a psychiatrist (private) it was myself and DH that spoke, DD just waved and said hello then was allowed to get on with her own thing in another room. We noticed a massive difference with medication. It’s not something any parent wants to have to do but may be necessary to move forward with therapy and strategies.

I should also say I’m so sorry that you’re all in this situation. The psychiatrist also told us that while DD was highly anxious to allow her to engage in activities that calmed her down. At that point (first lockdown) it was playing Roblox online while chatting to friends on face time. Feel free to dm me if you want any advice on what we did.

Good luck🍀 @anneofavonlea ,hope today goes/ went well, let us know how you got on.

We are still the same here, DD seems to have plateaud and not moving in either direction. Keep thinking is this it ?!
Being school holidays has really taken pressure off but she seems so "flat" .
We had a brilliant day in monday and she managed a day out at camden market, shes been wanting to go for ages so really pushed herself but now shes spent and didnt manage to leave her room yesterday ,today we just about managed hairdressers. It is an improvement to where we were but we are now almost 2 years in and I was really hoping that DD would be happier and less anxious by now, feels like treading water. I echo pp that medication can help, DD is on setraline and she says it does make her feel calmer and it definitely took edge off but its not a magic wand and she still really struggles to engage with therapy.
Roxie, how is your DD getting on atm?

@Runnerduck34 that’s good your DD managed Camden Market abs a visit to the hairdressers. Does she meet up with friends? My DD seems to have responded well to sertraline after experiencing increased anxiety with fluoxetine. She’s had a great summer to be honest. School starts again here next Tuesday (Scotland) and that will be stressful for her. I’ve phoned school to try an arrange a visit on one of the inset days and hopefully that will go ahead so that she can see her teacher 1-2-1 for a short period. She worries a lot about friendships too and I know that’s on her mind just now so I’ll arrange a play date over the weekend. She’s not happy about therapy but we need to keep trying.

Thanks for asking

We had mediation meeting. School and OT were amazing. Lady from LA apologises for some oversights and said she could clearly see the needs dd has. The issue we have is that as dd is in private school and we are paying for 121, OT etc the funding is more than LA would normally cover. She says they may argue a special school placement is better. None of us think this is best as she won't cope with another transition and the LA lady said she will recommend against this.
We now have to get LA OT assessment, submit an appeal so the LA know we are serious and hope it can be resolved internally in the LA before tribunal.

Anne the funding is more than LA would normally cover.

The LA may like you to believe that but it isn't true! It is more than possible to get an independent MS named and fully funded alongside a package of SEN provision. There are a few such parents on MN. To give you an idea of what level of funding can be provided DS1's EHCP costs more than £100k pa and whilst DS3's costs significantly less it is still more than the average UK salary.

Runner we always pay for good days.

Zoo DS is making wonderful progress with independence skills. The initial settling in period at school will be rocky but hold on to the fact once DS is settled things should improve.

It's good to hear the family therapist was nice, it always helps. Hopefully the meds will help DD2. What are DD1 and DD3's plans longer term? Didn't you say DD1's wedding is soon? Presumably they are going on honeymoon, what is their plan for then?

Always to an extent you do need to push, otherwise it is common for DC with MH difficulties to become stuck and they cannot rationalise what is in their best interests (this is one of the reasons timetables in CAMHS day and inpatient units are intense), but it's imperative to learn when you must stop pushing as continuing will cause further harm. Each DC will have their own telltale signs. It's about learning how far you can push without reaching crisis point. A fine balance.

Did you apply for an EHCNA? MH therapies can be included in EHCPs, and can be in excess of what is typically provided by CAMHS and for a longer period - if may even be quicker if the 30 week wait is t actually for therapy, just assessment.

No one sets out to medicate their child, but sometimes it's in their best interests, just like it's sometimes necessary to give medication for a physical health condition. DS1 takes mirtazapine and risperidone, an antipsychotic that is also used for PTSD. One thing to take in to consideration is medication should never be used on its own, NICE guidelines state it should always be alongside therapy.

Roxie what kind of therapy are you looking at? Would some kind of indirect therapy (play, equine, Lego, art, music, drama... wherever DD's interests lie) be better. Then the focus isn't directly on communicating.

Planning to submit appeal against EHCNA refusal this weekend - now have as much evidence as I think we able to (got Ed Psych report)

IPSEA refusal to assess pack mentions finding out schools's SEN budget, number of pupils on role, number of pupils with SEN, number with EHCP. I have got this information but have no idea of context and whether or not this information is helpful or not helpful and therefore not sure if we should include it. Does anyone know anything about school SEN budgets? School (academy) has 5% FSM pupils which I understand is a factor in budget allocated.

@1jumpforward2back I am DD2's appointee for PIP thanks to you advising me of this previously. I asked to be appointee when I first called DWP but no How Your Disability Affects You forms arrived. When I phoned I to to chase up I was told they were unable to verify me to be appointee but for some reason I hadn't been contacted. Luckily person I spoke to was very helpful and was able to do it all over the phone - finishing the forms is another job for this weekend.

Celebrations this week as DD2 has been awarded a GCSE pass in a core subject (the one she's studied in her EOTAS setting) when we'd previously been told there was no evidence to award any.

DD2 seems to have been a bit happier the last couple of days (she's not been in or on her bed as much as usual. She's been out of bed earlier and at her desk playing computer games (I'm afraid she does probably too much of this but it seems a lesser evil than lying in bed miserably and she says it makes her happy and distracts her). However her CAMHS homework of going in the garden for a brief period and building up to leaving the garden and at some stage going for a brief walk has regressed and she has hardly left the house for the last 2 weeks with a handful of time outside the back door after much reminding. She has eaten 1 meal with us in the last week which is actually an improvement and I have not been asked to leave her room quite as often as last week when popping to check her (she often wants to be alone).

How's everyone else doing?

Thank you so much 1jump. We are looking at around 50k I think. This is really helpful.

The worry is that they will argue her needs are so great she needs to move to a special asd school. This would not be in her best interests

Muddling, that's so interesting about ipseas advice about school SEN budget, we are waiting for DDs draft EHCP to be finalised then will appeal for specialist, but like you would have no idea on how to use the information,other than to say they dont have funds to support ( but wouldn't know how much it all costs or what funds were needed!)
Great news about DDs GCSE!
It is so hard to get them out if their room, we have managed a couple of trips DD wanted to do this week but it takes her days to " recover". DD seems happier to do something big on occasion rather than the small incremental steps cahms recommend which she thinks is pointless, I know they're not but cant convince DD otherwise, we spent last few weeks of term trying to get DD to sit in the car in school car park for half an hour then driving straight home as a way of diminishing her anxiety, its exhausting and I'm dreading when the schools go back.
Anne ,DD has seen a friend that I have managed to organise by stealth as she wont reach out to anyone herself but its much harder to do for a teenager.

Runner - your DD and mine sound quite similar. DD 2 is hard to get out of her room, takes days to recover after a meeting or appointment. DD2 also doesn't tend to see the point in things (unless it's exactly what she wants to do!) Has been referred for ASC assessment (though who knows when that might be?) I see possible traits that I didn't see/weren't there a couple of years ago - I'm still a bit surprised as her difficulties seemed to come out of the blue quite suddenly around 14 1/2. Social difficulties/friendship breakdown stemming from differing interests (theirs not hers) and DD not joining in with social activities that she didn't interest her and she felt were a "waste of her time"! She also says she found it increasingly difficult to join in conversations so just stayed quiet.

Sitting in the school car park and then driving home to reduce anxiety sound like a good strategy - I hope it helps for your DD next term while you are trying to secure specialist school.

Runner advice for content/placement appeals is different from advice for refusal to assess appeals, and both are different to refusal to issue appeals. When appealing the placement it is advised to also appeal B and F as they will be written to support the placement the LA named. At this point funding isn't your concern, and the notional SEN budget isn't important. You would focus on why MS can't meet DD's needs. You will need evidence of this. And ensuring section F is detailed, specific and quantified. Then regardless of funding the provision must be provided, if it isn't you can enforce it. If the placement needs more funding they should approach the LA.

Does DD read about ASD online? If so, would she read about pacing and spoon theory? About how if she does too much one day she will borrow 'spoons' from the next day, but that will make the following days harder. If they haven't already CAMHS can help explain the rationale behind building up slowly and pacing herself - sometimes it helps when someone else says it rather than you.

Anne don't get too stuck on what placement will be named as your appeal is for refusal to issue, not contents/placement. SENDIST's focus will mainly be on whether an EHCP should be issued rather than on what should be included. If your appeal is upheld but you disagree with the contents or placement you would need to submit another appeal.

Going forward you will need evidence DD's needs are best met in MS. Then evidence of needs the state sector can't meet, but your independent can - i.e. small class sizes, smaller school, consistency, stability etc. Because the school you want is wholly independent you need evidence as to why only that school can meet DD's needs and why none of the LA's proposed schools can or why your option is not unreasonable public expenditure - this may be easier than you think if the LA propose an indie ASD SS. An ASD SS with all the required provision specified and quantified could very well cost more.

If all else fails it is sometimes possible to come to an agreement where parents pay the fees and the LA pay the SEN provision. Although not all LAs will do this as it can open the door to them needing to pay it all. Some LAs will say you are making suitable alternative arrangements therefore they are relieved of their duties.

Muddling congratulations to DD on passing when everything was stacked against her. I hope it boosts her confidence.

You only have to show DD may need SEN provision to be made via an EHCP. If DD needs provision not normally available in MS, and I'd suggest she does, then the notional SEN budget is less relevant. I would focus more on needing provision not otherwise available in mainstream than on the SEN budget. The notional SEN budget will help if you can show the school are providing all it can within the resources it has and add still requires more provision to meet her needs. 5% FSM is relatively low, although you would need to know they other data that influences the notional SEN budget before drawing conclusions.

DS1 has had a few difficult nights recently. He is still awake with high anxiety. I am exhausted and feeling touched out as he is constantly stroking my arm.

Jump Thank you, DD is pleased with result but also with the fast food she chose to celebrate with! Hope You and DS1 managed to get some sleep in the end.

EHC refusal to assess appeal finally submitted - now got to wait. Hope we have enough evidence now.

Did a SAR to LA on advice from Jump and interestingly the info we received did not include any evidence from DD2's school, just from EOTAS setting. Refusal letter didn't appear to have taken school evidence into account either - not sure what happened. We have the evidence from school and have submitted it with appeal. Also additional evidence and EP report.

PIP form completed and ready to send also.

DD2 has had shower and hair wash so that's another thing of my list!

How's everyone else doing?

muddling you've been busy!

Nothing positive to report sadly.wedding us two weeks Saturday just gone,dd2 revving into a frenzy over it.decisions all but made we will attend ceremony and photos then leave before meal.uts just so overwhelming I'd rather cut that and I can get her there in a terrible state than blank refusal to leave the house at all.there was no way D's would cope with evening disco,so that was already decided
She's becoming very depressed and as uncertain what's going on with school sept she's in a spin over that too
DS is increasingly stressed about return to a school building camhs have suggested some flash cards in his pocket reminding him to breathe.i can't see that helping tbh as once he starts to free fall it's very fast and there will be no logic to remember that but I've held my tongue and let him bluntly tell them what he thinks if/when an app to sort that happens!his capacity to remember things has vanished and need to say I love you has gone from everytime leaves a room to every couple sentences.he will repeat until I acknowledge which is exhausting.hes also not sleeping as much and very tired
Lil zoo shows no sign coming home.she saw D's overnight Friday and went out for a picnic with dd2 on the saturday.she spent Sunday in bed complaining felt I'll and still saying it today.dd1 thinks she mixes low and I'll and I believe she is finding interaction exhausting and not able to verbalise it well

I'm very very tired and not as bouyant as I'd like,but I'm starting to put small actions in place as reminders and boosters so am hoping to be in better spirits for start of term which is going to be highly stressful

Muddling you are on a roll today, so much of this type of admin is psychologically draining as well as time consuming you deserve your pick of .

Zoo don't underestimate the power of positive affirmation. I don't know if you remember but a while ago there was a documentary we discussed on these threads - I think one of the DC had similar needs to Anne's DD, it showed just how well positive affirmation cards can work. To begin with he will need prompting to use them but they can help. Have you thought about applying for an EHCNA for DD2?

DS1 finally fell asleep at 12.45. DS3 has had a terrible day. He has been to a summer school transition day at his new school which has not gone well. On a positive note the school have dealt with it brilliantly.

Whilst that must've been hard for him jump must be a relief for you they handled it so well.sorry about the lack of sleep

It is a relief Zoo. It reassures me we chose the right school. The SENCO and DS3's 1:1 get him and are willing to work with us. Today they recognised the problem (a rather touchy feely loud pupil with additional needs of their own trying to put their arm round DS3 and getting in his face) without me having to say anything, sadly it set the tone for the rest of the day.

At least they saw what was bothering him and can prevent a repeat/be aware of potential flash points jump

Well dd2 has a very rare outing tom.shes meet up someone for a picnic in park.ahes pacing and doing tictok dances as in such a state anxiety already, interspersed with dash to loo as IBS kicks off

Hello - would it be okay if I joined this thread?
My DD (10) has struggled in lockdown and even more so as we approach secondary school exams next term. Bright but anxious. We are seeing a therapist tomorrow. Will be lurking for tips and helpful suggestions.

Welcome @MaitreKarlsson, I hope the therapist visit goes well .
There are a lot of knowledgeable posters on this thread and the rest of us (including me)always happy to offer tea and sympathy ,do you want to tell us more about your daughter?

Zoo, hope DD2s outing goes well, keeping my fingers crossed!

Jump, sorry its tough atm, hope you get some rest, it is encouraging school handled problems with transition day so well, I hope DS3 settles into his new school .

No change here DD not left her room for more than a minute or two since we went out on Saturday, we are going on a weeks family holiday Friday on which will cause DD lots of anxiety so keeping it a bit low key this week in the hope she will have something in reserve for the holiday, then a week after we are back its back to school which I am dreading.
All gone quiet on EHCP front we submitted our comments on draft plan over a week ago and have heard nothing back yet. Discovered they hadnt consulted DDs school so that consult only went out after our deadline to respond had passed, DDs SENCO has told us she is leaving at the end of this month she has been very supportive so, selfishly, thats a change we could do without.

Hi all, how's it going?
Managed to get DS to the park yesterday for an 1.5hrs. Quite an achievement as our local park is one of his triggers.
We are supposed to be going to see family next week, but he can't even manage a small trip in the car to the swimming baths, so I don't think he will manage a 4hr drive! Just don't know if to try and push it. He will love seeing his cousins but I also know there will be a lot of pressure on him to do lots of stuff, I just don't know if it's worth it when he is in such an anxious state.
Waiting to speak to head of new school about DS start date (definitely won't be September at this rate, he hasn't been in school since May) and also about applying for EHCP because I really don't know where to start.

Hello @MaitreKarlsson sorry your DD is having a hard time. As Runner said already there are a lot of knowledgeable posters on this thread and I have found people to be very kind and supportive. I hope therapy goes well today.

Thanks @Runnerduck34 and @MuddlingThroughWithoutAClue

I have been especially worried about DD recently as she wrote me a note saying she felt desperate, sometimes wants to kill herself, doesn't want her life and it is not fun anymore.
She has a lot of school work and finds it very hard to do as much as she's supposed to - then panics about the consequences of not doing it, so it's a cycle.

The session this morning was really helpful. Had to drag her there but once she was there she opened up a lot. The therapist was really thorough - going through food, sleep, home life, school life - and I have a much better idea of what is the problem. She's recommended a couple of sessions of CBT. My DD isn't keen on going back, but we've said we will watch the videos that the therapist sends through before making a decision.

I actually feel somewhat relieved to have a better idea instead of general all round panic!

Sorry for not picking up on a newbie,my notifications for MN have vanished...
Welcomemaitrekarlsson
Do you think when she says she wants to die is it that or just go to sleep and not wake up?my DD is of the latter.just wants a break from it all/it all to stop.
I'm glad therapist was thorough.did you gain anything from it?
Most importantly what about you..I bang on again and again about this,but it's so important to realise you need to be watching your own needs are met.do you have friends or family to offload to in RL?if not please vent away as much as needed here.it is HARD watch your child struggle and feeling helpless.no one who hasn't experienced it can truly take on board how mentally draining caring for an anxious child is.me time isn't a luxury it's what will allow you to keep going even when you feel you can't.me time is different for all if us.a bath,a choc bar hiding in bathroom,a walk,painting toenails,watching sunrise whilst rest of the house sleepsit all counts to just recharge your battery a bit

Runner good luck with the holiday!let's not mention the s word

Always that's a fab win!well done D's for the park trip💞

DD was in terrible pickle 48 hrs- prior to her outing.in end it went brilliantly and she was out for 5HOURS!!!!they fed ducks,had picnic,walked,chatted and got a drink at a costa.she did freak about ordering and friend hot it for her,but other than that she did fab!
Very low and exhausted today"all peopled out" as we call it!
She's also bit anxious about last camhs call tomorrow ahead if dd1wedding next weekend
I've made executive decision we will attend ceremony and photos,not stay for the meal.we hadn't planned on doing evening do as D's has never coped with disco type things as hates loud music etc.it maybe the wrong thing to not challenge her but food throws so many anxieties at her it's unfair to challenge them in a room if 70 when she cannot eat in front of me and D's simultaneously.shes still very distressed about venue being a car ride away,strangers,strange place,be bridesmaid,the unknown of the events of the day etc.i told dd1 I'd rather we accepted be part the ceremony would be nigh on impossible but we'd get there somehow,than promise it all and she gets so overwhelmed won't leave the house and we miss everything