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

Do let us know how you get on minty
How we roll-- I always say this thread offers no judgement.its hard to understand if you have never lived it how exhausting caring an anxious child can be
We listen,offer advice and love to hear how people are getting on,pop in for a chat(offload worries,talk anything really as it's a friendly thread) and we love to hear small triumphs.note word SMALL we know it's not going to be huge leaps forward and it's lovely to share little bits of joy in a good day and moments we are proud of that others would dismiss because "that's just normal"

Had TAF for D's today.much less feeling like I was under attack
Our lovely reverend held it at church and a member of church D's knows very well(plays her dog at wellbeing cafe) watched him in hall whilst we used a little meeting room.ds school was there and OT from CAMHS.
Outcome- I am filling out EHCP plan and DLA forms,looking if autistic support groups locally I can take D's to to "socialise",research an outing for family church are funding❤️
OT was told outreach tutoring in our county don't take 13 years olds(too young) but school piped up another child in D's year has been accepted so they are willing to run gaunlet with LA on that one.they also going look at topics for this term so we can at least begin planning something at home on course with topics peers are learning

It's been suggested the girls school join as I feel dd2 is crumbling via mix of GCSE stress,her own anxiety and the impact of D's etc.i always thought she was the autistic one tbh,but in hindsight I see huge amount traits in all of us,dp included...
So I felt that a good idea,as she's resistant to going gp despite not sleeping,anxiety attacks, procrastinating in the extreme,having spasm/tics in her legs and her silent reflux is becoming all but unmanageable and yet diets not changed much(comfort eat a little) but stress really cranks it up.
Plan is to invite head of year for dd2(who was her tutor for two years and knows her well) and see if they can just do a little observation on how she's doing not necessarily a full on chat(for now) she appears settled and to engage with friends at school but comes home exhausted from the interaction.

Welcome m1inty. Solid advice offered by Zoo. Is he open to getting help? If so, that is a great first step.

Are you feeling better today, Zoo?

oops posted before realizing I missed an entire page!!

Sounds as though things are rolling along Zoo . Your church is so very supportive.
Supporting DD2 as well seems a very smart move. I found the same thing in my family after an initial ASD diagnosis. You start to look at other members and see similar traits for the first time. Traits that may or may not be enough to be on the spectrum, but similarities no doubt

Zoo, the TAF sounds very positive. I am glad you are going to apply for an EHCP and DLA. IPSEA have a model letter for requesting an EHCNA. It's a good idea to invite DD2's school - I believe TACs/TAFs work best when everyone involved is present, think about asking your youngest's school too. Don't worry about there being too many invited, we have a very, very long list, though not all attend. The LA's policy sounds very close to a blanket policy, which are illegal. The LA are obliged by law to provide an education to those of compulsory school age too ill to attend school - this can be at a centre, hospital, home tutoring or online. I understand if you would prefer not to but if you want to post or PM your LA I will try to find their provision for you. DS did amazing to go with the OT yesterday.

Viking, how are you and DS1 today?

I agree with Zoo, M1nty. I'd see the GP for a CAMHS referral.

We had a good day yesterday. DS1 did really well with the tutor. I thought he may take a while to get back into formal teaching and learning, but he hasn't. I even managed to leave the room to take a phone call without him having a meltdown.

Today however we have gone from one disaster to the next. DS1 had an appointment this morning and he threw himself along the corridor because "this place hates me [DS1]" . This afternoon followed a similar pattern, as has this evening, DH is trying to get him to settle.

Viking I am very grateful for the support of church.rev rachel raised two boys(now in early twenties)so is great with children.shes also a keen birdwatcher and has lent D's a book on different foods to put out for different birds which has lots gorgeous photos in it!

One-step I'm sorry to hear it's beensuch an exhausting day. for the tutor session and having chance make a call in peace!
Youngest moved up into dd2 school in september,so she should be kept an eye on also

Hope today's been better/productive one-step
I've had DLA forms for D's appear,so I spent a mind numbing two hours filling in and emailing school and OT for supporting evidence
Then rang IASS about ed healthcare plan and took some notes
Also,taking matters into my own hands educationally for now we are learning about tactonic plates(poineers of to be precise),immune system and reading if mice and men,so adding in chores etc a busy day
Foots on the mend,swelling down just bit sore stand on it for too long

Zoo, I am glad your foot is healing. Take it easy, don't do too much too soon, especially after the DLA form. Forms like that that highlight the level of need can be mentally draining.

IPSEA and SOS SEN both have useful online resources and advice lines. Your local SENDIASS/parent partnership can be useful, but be cautious because they are not completely independent of the LA.

Today has been a better day for DS, an amazing one. He engaged really well with the different professionals visiting as part of his EOTAS package today. He is already asleep! The Clonazepam is helping I feel.

Glad today was a better one one-step call me an idiot but IPSEA and SOS SEN are???

IPSEA and SOSSEN are charities that have lots of SEN advice on their websites and have advice lines you can ring.

The SN section on here has some very knowledgeable posters too if you need EHCP guidance - SN chat and SN children are busiest.

Hope everyone had a reasonable weekend

Dd1 visited yesterday.we are doing initial wedding dress shopping next weekend.eeeeek
Need plan snacks and distractions for D's and we are starting to look at how on earth we can help him cope with the wedding (June)

Well I made lots of calls today and on advice I woke to council team who said I need to write an email explaining why I feel D's should have an EHCP as it's normally done by schools,and their input will be necessary.needless to say I did point out in said email amongst his issues the fact we have had just a few pieces if work in twelve months,no more and none marked.hopefully they will help me!!

Well done on starting the EHCP process Zoo. Your LA are just trying to put you off, parental requests are just as valid as school requests. At this point all you have to prove is DS may have SEN and may need an EHCP to meet his needs. They have 6 weeks to tell you whether they are going to assess.

I've had a busy few days with lots of meeting and appointments, none of which have gone well. I need a few extra hours in a day.

one-stepit's exhausting when days merge together that are difficult.hope things level off for you soon
I sent the email and got one back asking for address (school boy error I added loads detail but forgot something so basic)but hopefully that means they will be looking to say in writing they will start the process!!
DS had CAMHS,which DP had to take him as both girls home with nasty throat/chesty cough/fever bug.OT was asked add her role in D's care to DLA form,which she did and that's now been posted so I feel I've at least done a few proactive things!

Hello all
I googled to re-find this thread and drop in just to say hi. It's been five weeks since I returned to the UK and my kids are now coming to the end of their second week at school.
I never thought I'd see myself writing that and am hoping and praying (am not devout but take comfort where I find it) that the honeymoon period continues.
There have been ups and downs in coming back and now being to all extents and purposes a lone parent to two but the positives outweigh the negatives at the moment by a long way. No miracles, DS is two years behind his peers, but the class is inclusive and tolerant and the class teacher who is also SENCO is kind and nurturing. The LEA have a poor rep for SEN provision and EHCPs are 4 year waiting list but I bloody love the school at the moment and they are doing their best with him. It is so different to Germany I could cry with relief.
Both kids have hacking coughs, my back is hopefully temporarily fucked but other than that, we are okay.
Bills and finances from January will be the next hurdle but I might be able to work rather than home educate after all. I do hope so.
I am not naive. There is such a huge mountain to climb and I take each day as it comes but I have seen improvements and small wins and my son is actually leaving the house every day. I never thought I'd write that either.
I am thinking of you all and hope everyone has a good a weekend as we can. Big hugs to you and yours x

Glad you're settling back into UK life Rage. To be back on your feet and the positives outweighing the negatives so quickly is a huge hurdle.

EHCPs are 4 year waiting list

Is ^^ that gem from the school or LA? Don't be fooled! The timescales are set in law. The first stage is requesting an assessment and the LA have 6 weeks to let you know if they are going to assess or not. Here is a link to IPSEA's information sheet on the timescales.

You are on a roll Zoo. The OT sounds brilliant for responding promptly. I hope the girls are feeling better soon.

I am comfort eating , lots of it.

rage as one-step says EHCP aren't on waiting list of four years.ive got ball rolling for D's and am told it takes 20weeks for a decision.glad things aren't as bad as you anticipated and that school are helpful(huge chunk of the battle)

One-step I am also comfort eating chocolate,which with lactose intolerance isn't clever but the sweetness soothes my ravaged nerves even though my gut is complaining....

Oh blimey, that's a bit of a red flag. Good job I've got you lot
The Senco said in the primary school there are only 4 children with EHCPs and one took four years to get.
I asked whether in her opinion more children should have an EHCP and she said that in all honesty no, as there was a lot of support given they probably wouldn't get one compared with the school up the road which was more deprived.
Allegedly the LEA has not had an ed psych for 18 months and now share one with another authority, the school buy in assessments from a private ed psych at a cost of 600 pounds a day which comes from their budget, local GP does not usually refer for EHCPs and refers parents back to school, she will ring the LEA and declare my son to have suspected SEN but assumes the response will be that he has come from Germany, had not been in school there and is already 2 years behind so obviously he needs time to catch up...

She seemed sincere, with the kids' best interests at heart and doing a good job with cut resources. I like her. We spent an hour chatting last week and my son has really taken to her.
She was very honest about how hopeless the LEA are, although had good words to say about one support service and my son is seeing the reception teacher for phonics and she will arrange for a volunteer who used to teach primary to do some 1-1 for his fine motor skills.
It's only been a fortnight and my son is doing well given his starting point.

But...how long do I give things before I need to push harder/advocate more? A term? A year? Until things do start going wrong? Trying to avoid the last obviously and I haven't had a call to pick him up yet. Their safeguarding seems very good and they tell me he has not shown challenging behaviour (how that is possible I have no idea. Is he masking? Was I just an awful SAHM? Is the honeymoon period going to be over very soon?)
Half term is in a few weeks - I will review it then I guess. The problem will be that even if he is happy, he has a two year deficit. And that would be challenging enough without the SEN (my daughter is in the same boat but is neurotypical - she is still behind with maths and English as she is in year 4 coming from year 2). I have no idea how the school can manage this long term. My fear I suppose is that he could be safe and nurtured there for the next 4 years but still way behind everyone else then the shit hits the fan in secondary?

Rage, have a look at IPSEA and SOS SEN, and the SN section on here. Schools/LAs will tell you what they want you to know - sometimes they will try to make up their own rules.

Being 2 years behind won't be something the school haven't seen before, you may even find there are others in his (and your DD's) class of a similar level. If DS hasn't had any formal teaching and learning before initial progress is likely to be rapid.

Parents can apply for an EHCNA.

If you have to appeal refusal to assess and then refusal to issue and content it does take longer, but if the LA don't stick to the timescales you can complain and go to judicial review - often just the threat or a pre-action letter works.

A lack of availability of LA or NHS professionals for assessments isn't a reason for EHCNA to take longer. The law states professionals asked for reports have 6 weeks, if they can't/don't report within timescale the LA should seek private assessments. While we're on this "not known to this service" isn't an acceptable response either.

From what you have posted I would focus on gathering evidence for when/if you decide to apply. If DS is attending, making progress academically, socially, emotionally etc and isn't displaying challenging behaviour you are unlikely to be issued an EHCP at this point, though sometimes it is possible to argue without an assessment to identify needs you do not know what provision DS needs. You need evidence. Follow up conversations with emails, start a diary, keep school on their toes, be aware of illegal exclusions, question everything school/LA tell you. Unless things deteriorate from what you have written here I'd revisit the question next term.

Thank you onestep
I do appreciate the advice Whatever people say about MN, I will always defend it because of threads like these where people are kind and good enough to support others. I feel less alone anyway. Thank you.

I have a diary but I don't actually have the Senco's e-mail. Would it be rude to ask for it? I don't want her to feel that I don't trust her or her professional opinion or her ability to advocate.
By the same token, I don't want to let my son down by not pushing for referrals sooner.
it is possible to argue without an assessment to identify needs you do not know what provision DS needs
This is a very good point.

No, it wouldn't be rude. Don't be afraid of being 'that parent'. You could couch it as "instead of me taking up your time at the start/end of the day when you are busy can we exchange email addresses please..." But you don't need her to reply, just for you to create a paper trail, so if you can't get it and only have the office email that's ok.

I have had amazing advice and support from MN over the years, I will be forever grateful.

Next week I am going to visit a secondary SEMH resource base. The primary ones I've looked at won't work for DS but you never know the secondary might - it can't go any worse than some of the SS we've looked at.

rage I agree that parts of MN are the absolute best and one-step has been very kind sharing knowledge for me too( one-step)I agree it's not rude asking for an email address as limits time taken at pick up/drop off and when my dad was doing time in senco they were able to communicate without him listening via email which was much better than talking about him in front of him

I'm learning it's ok to be "that parent".we have a duty to try and give our children voices when they need extra help and whilst I still don't have thick skin or sharp elbows I'm working on it!!

Ps one-step I hope next week's visit is fruitful for you

Stressful start to the day as had electrician in to fix some switches that had cracked/were coming off the wall and ds bedroom light had broken so couldn't add a bulb
Also had glazier in to replace glass in one my bedroom windows as it was "fogged up" between layers of double glazed glass
Da wasn't great with it but thankfully they were both early(electrician booked 830-12 and came at 9,glazier due 10 but was here 930). So we were done and dusted before 1030.i took him for short walk after as he was quite agitated
E have read some of mice and men together and he's sat pondering how do we know what is real?these things are too much for my fuddled brain;but he loves them so he enjoyed contemplating the answers and writing them down.i figure at least it keeps his brain active and practising writing