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

[alwaysscared]

@Stilllivinginazoo sorry, I started a thread last night part 5 as wanted to answer @1leapforward2back and @Fferny1
Will try and get it deleted

[Stilllivinginazoo]

@alwaysscared don't fret,I didn't see it,I just started another as I've been running it quite some time and haven't changed my username so some search by that.if you can link yours to mine that would be very good as people can find us both x

[Sirzy]

Ds is struggling at the moment, I don’t think the fact it’s his birthday this week is helping. He doesn’t want to do anything and although he knows I won’t do anything he is still worried other people will make a “fuss”

[alwaysscared]

@Stilllivinginazoo it's ok, they have taken it down

[Fferny1]

Not a good day here either.
DS is feeling constantly suicidal. School has maybe made things worse. I've said you can miss school that's fine but he's not ready to make that decision. Meanwhile school phone me every day if he doesn't come in. And I have 2 - 3 hours every morning when I don't know what's happening.

I'm so tired, worn out & stressed. Then dd1 ( 22) at uni told me I wasn't close to her 😢 ( feeling neglected maybe). I'm under fire from all sides as DH leaves everything up to me.

[Stilllivinginazoo]

sirzybirthdays are strange with anxiety aren't they - a very very fine line between being too much fuss/attention and feeling like they're not important
We tend to give a few gifts in a little pile,to open in own time,prehaps a cakeand unless requested something else that's it we carry in like it's as normal day.that works for youngest
Fferny no wonder you are exhausted
In your place I would try offloading at dh and expect some support with it all

[alwaysscared]

@Sirzy my DS was very anxious when it was my birthday, I think he assumed that there would be a lot of fuss and lots of people, but there wasn't. His GP's came for a bit and he scooted upstairs until they left. Just try and keep it low key I guess.
@Fferny1 sorry you are having a bad day. Your DH needs to step up! I'm very lucky that my DH is very supportive. It's just hard that he is at work all week and I'm the one who has to teach/mother/care for DS. I'm not a good teacher 😂
My DS got to sleep at 3am this morning, so very tired today. We are having a strip all demands day, see if it calms him a bit

[Runnerduck34]

Hi everyone, pleased I found part 5, took me a while to find Im just a bit inept! just in case others struggle to find it just tagging @FiveMoreMinutesPlease, @1jumpforward2back*.@StarryNight04 , @Bubbleswithsqueak, @MackenCheese, @Archersandlemonade, @MuddlingThroughWithoutAClue, @AnneOfAvonlea,*@donutqueen11, @SamW98 , @randomthings, @Canteloupe33, @sandwiches77, @Cantonet, @teelizzy, @doorornottodoor , @hanghang -sorry if ive missed anyone

[FiveMoreMinutesPlease]

Thanks @Runnerduck34

[MummyJ12]

Hi everyone,
Please can I join?
I have my gorgeous son (14) who is really poorly with anxiety, associated low mood and OCD. He has support through CAMHS and also a private clinical psychologist.
I’m exhausted.
His school are not at all helpful and aren’t recognising that his attendance is being impacted by his illness and it’s a fight. After last half term they threatened to put us in front of an attendance panel because his attendance was just under 90%. He has no immune system. We’re told by his care team that this is because of his anxiety and low mood but the school just think he has school refusal and want to sanction.
It’s hard enough looking after him, sometimes even having to brush his teeth for him and get him to school every day without fighting the school as well.
I just feel so overwhelmed. Are everyone else’s experience with schools more positive?

[Fferny1]

@alwaysscared I have no expectation of my DH being anything other then crap.
I never take him to school events or parent evenings bar 1 over 22 years of 4 kids 😂

[alwaysscared]

@Fferny1 oh man, that sucks! To be honest, I think I put too much on DH, he is a saint!

[MummyJ12]

@Fferny1 sorry you’re having a bad day….
I’m lucky that dh is supportive, I don’t know how you do it. It’s isolating enough without that lack of support and understanding. I would say that my dh doesn’t understand ds enough and can get frustrated with him. Not helpful. Make sure you get a little bit of time for you each day.

[alwaysscared]

@MummyJ12 sorry, don't have experience with secondary school as DS is at primary. He hasn't been in school since May due to anxiety and possible ASD, but I found school really helpful. After a letter from GP stating he was too anxious to attend school (after weeks of panic attacks, meltdowns etc) school referred us for Out Of School Tuition. We have a tutor virtually 3 times a week. It's still a struggle to get him engaged but at least it's something. Unfortunately it's meant I have had to give up work, so finances are crap but it's what we had to do in the end

[MummyJ12]

Thanks so much @alwaysscared. Ds’ clinical psychologist offered to write a letter but the school claimed that he wasn’t at consultant level so they wouldn’t recognise it. CAMHS have also written a letter but they haven’t recognised that either. So I’m now having to go through formal complaint procedures which is horrendous. I’m at a loss as to what to do.

[alwaysscared]

@MummyJ12 I'm so sorry, that sounds bloody awful. Someone with a lot more knowledge than me will be along soon with advice I'm sure.

[1leapforward2back]

Thanks for the new thread Zoo.

Welcome MummyJ, if DS is not able to attend school the LA have a statutory duty to provide him with an education. This should begin once it is clear DS will miss 15 days, for ongoing conditions the 15 days don't need to be consecutive, they can be cumulative. Here is the guidance, it specifically states provision should not be delayed by lack of quickly available evidence from a consultant. It is the LA with responsibility, not the school, so complain to the Director of Children's Service. If the LA still refuse threaten to begin Judicial Review proceedings. Don't worry, you will not be fined, even if the school threaten it.

Also, have you applied for an EHCNA? And DLA and social care assessments? You are 'lucky' CAMHS allow you to mix private care with their care, many don't.

Welcome Sirzy, I post on the SN boards under another name and we have spoken before. Your DS is the same age as mine. DS1 finds birthdays stressful too - the attention, change in routine, others' expectations.

@AnneofAvonlea you may be interested in talking to Sirzy about ARFID, she is the poster I mentioned previously whose DS has enteral feeds.

I'm sorry Always I didn't see your reply.

[Runnerduck34]

Just realised id left out @1leapforward2back ! and @twinkletoedelephant @blueshiningsea @scoreen @Roxie55 @whenwillthemadnessend @MaitreKarlsson @Nameandgamechange123 @pinkpip100 @Freedomprogramme @ilovebagpuss @Backofbeyond50 @vikingwoman

[Stilllivinginazoo]

runner thanks for alerting everyone to the new thread 💖
Mummyj welcome
I'm sorry school are being so unhelpful.sadly it's a lot more likely than supportive in my experience in RL and here,sadly
I'm very lucky both my girls attend a school that has great pastoral care,esp after the disaster that D's school was...
I would take advice from leap on handling education.i would also complain to board of governors of school
Do you have other DC?help in real life?it's extremely hard managing it by yourselfand offloading even here and giving yourself even precious minutes of time to recharge does make a difference

Fferny sorry you are in same boat as me re dad help/support.i don't even bother to lean towards him anymore as I just get frustrated with nothingness!filling your emotional cup matters even more when balancing it alone.today I've had half hour lying quietly reading whilst D's is gaming(he was extra hardwork so I declared we both needed time out) and it's been quietly restorative ahead of the girls getting in and chaos reigning...

[alwaysscared]

It's ok @1leapforward2back
It was a long reply and got the thread deleted then lost the post. Can't remember what I wrote!

[Runnerduck34]

@FiveMoreMinutesPlease- hope everythings ok with you? and a bit calmer

Just had email from LA, tribunal gave them to midday today to name a school , they were saying mainstream but no school named as current school said they cant meet her needs. LA have just said they are unable to name a school but will do so "in due course" but now believe provision type should be specialist, so Im pleased about that at least but have heard many dc in our area have specialist listed as provision type on EHCP but with no named school as there arent enough places.
DD has been offered a taster week at a specialist independent school this week but she didnt manage to in, she had outfit picked, bag packed but was just "frozen" with her anxiety really high. Going to try again tomorrow but if she cant go in they wont be able to tell LA they can meet need. Still trying to get LA to agree EOTAS in interim, its hard work but maybe there is slow movement with them conceding specialist

[MummyJ12]

Thank you so much everyone for making me welcome
We are fortunate to have ds so well supported @1leapforward2back and for CAMHS to be so understanding. They know that we were trying not to use them because we can afford to pay private and are also aware of them being so overstretched. However, we had to engage them when the school refused to cooperate with the clinical psychologist and the deputy head actually threatened to complain about him when he copied us into an email exchange. Ds has been suicidal and we couldn’t wait for their help with the prolonged timescales and they know this.
He started group CBT but has now progressed to face to face, one to one sessions because they are also now worried about him.
Thank you so very much for all of the information that you’ve posted for me. It’s really helpful 💗
I’m really happy to have found this thread. I can’t tell you how much it means to have you guys. I’m crying now!! I’m such a mess!! Thank you.

[Stilllivinginazoo]

runnercurious to you saying can't meet need if don't do a taster session.i thought it was based in needs laud out in EHCP?(I may have got that wrong?)D's provisional plan got him placement at one school LEA chose.we don't have very local provision.nearest option is a 45 minutes(on a good day) drive away on other side of the county.previous choice offered was even further

[MummyJ12]

Thanks @Stilllivinginazoo I have dd (9) who is very understanding of how much time and attention ds needs. I also have a lovely group of friends who give a sympathetic ear but don’t have any such problems with their dc so sometimes although they can listen, they are often just lost for words on what’s going on at the moment….

[1leapforward2back]

Always did you apply for an EHCNA and have you had social care assessments?

Runner that is good news, don't worry about lack of places if you are now pursuing EOTAS, or even if DD manages the trial and you decide on that. If the LA refuse to arrange medical needs EOTAS tuition under s19, Education Act 1996 threaten to begin Judicial Review proceedings.

Zoo the rules for wholly independent schools are different, in order to be named in an EHCP you need an offer of a place. Most require assessment day(s) before offering one.