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

That's really useful thank you. We are about 7 weeks post agreement to assess. Think I need to contact SEND officer at council for an update.

If you are 7 weeks post agreement to assess you are way behind! If the LA stuck to the timescales for agreeing to assess (your post doesn't give hope that they did) you are on Week 13. The assessments should have been completed by now. Anyone approached for information has 6 weeks to respond. In order to meet the 20 week deadline the LA need to issue the draft by week 14 and if they aren't going to issue must inform you by Week 16.

Write to the LA complaining and inform them if they do not move to complete the process quickly you will be forced to begin Judicial Review proceedings.

Do you receive DLA for DD?

Thank you @1jumpforward2back We have had contact from health who have definitely submitted reports. Under CAHMS too so I guess they will have had input. No we haven't applied goes DLA but it is now on my to do list. Although apparently dd thinks I am now using her cond8to gey money!
I think with other stuff going on I have taken my eye off the ball.

Condition to get money.

Backofbeyond that is a common reaction, often driven by a lack of insight and denial. A poster on the SN boards has a teen who didn't think he was eligible yet he was awarded enhanced rate of both elements of PIP. If DD is 16 in the next couple of months unless you need the money I would be tempted to wait, otherwise the DLA claim may not even be decided before having to apply for PIP.

A needs must include the following:
"a) the child's parents or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child's parent or young person reasonably requests that the local authority seek advice from."
SEN regs 6(1)

For someone with DD's needs I would suggest H should include SALT, OT and a psychiatrist &/or clinical psychologist.

Thank you. That is very useful.
Dd isn't 16 until early June so still tempted to apply. To be honest it isn't really about the extra cost although there is additional expenditure but more the reduction in earning potential for me. Every day there is some kind of appointment or lesson.
I can only realistically work part time.

Hi all just checking in,
Zoo I am sorry things have been so so difficult, you have nothing to be ashamed of, you are doing an amazing job. Maybe lilzoo will realise grass isnt always greener and it will give you both space to breathe, it is good she has a close relationship with her older sister, I hope she can support her but it is a big ask for a sibling.
Fingers crossed for DS for September, im not surprised about reservations , I really hope it goes well, will new school do any taster/ settling in sessions for him?
I hope it is calmer for you this weekend 💐

Backofbeyond50, our DDs sound similar, i would apply for DLA , it never occurred to me to apply before jump recommended it and it was awarded, is backdated to date of claim so is worth it imo, although form is daunting the accompanying notes are good so use them.as they give you ideas of the extra support you will be doing without realising.
We are also going through EHCP process for DD14 so about to go into year 10 , she has been school refusing for nearly 2 years going in just twice a week for a couple of hours , shes bright but theres no way she will get gcses at this rate. Shes just been diagnosed with ASC and also has crippling anxiety so its not just school its everything.
Jump, please can I pick your brains? Finally, after 24 weeks!, have draft EHCP, will go through it with fine tooth comb tonight but immediately i noticed they haven't consulted the early help worker,CAMHS or private child psychiatrist she sees, was a bit 🙄 at this, going to ask them to do so, is this reasonable,do I have any right to insist?
Also are they meant to send copies of any advice/ completed appendices they receive,like from school etc ? Nothing came with draft.

Thank you @Runnerduck34. Very sad that so many children struggle with school.

Backofbeyond the Cerebra guide is helpful when completing DLA forms.

Runner SOSSEN have a draft checking service if you need/want it. All of the assessment reports should be in section K.

The time to insist assessments were undertaken was during the needs assessment. The LA should have sought advice from social care, early help should have been part of this. Did you ask for CAMHS and the private psychiatrist to be consulted? You would have needed to, the LA wouldn't approach them automatically.

By all means highlight it when making representations but, at this point, you would be best pressing the LA to finalise ASAP and appealing. If you ask the LA to seek more assessments and consider further information and they agree it will only further delay matters with a high probability of little benefit and a big possibility the LA will use it to delay matters.

Thanks Jump
When I wrote to them using ipsea draft letter I included "a list of all the agencies/professionals and their specific area of involvement" (ipseas wording) but I didnt actually say please contact all the above, I just kinda assumed they would contact them-naive!
Do you or anyone know if they should do a preparation for adulthood? DD is currently year 9 so looks like they should have done this but they havent, however DD isnt physically disabled, is academically bright but has ASC and anxiety which holds her back in many ways but particularly school attendance. Not sure what preparation to adulthood would look like and how they assess/do it

Runner yes, PFA advice should have been sought. It isn't about being physically disabled, it's about preparing for transition, independent living skills, managing their health, integrating and functioning in society, preparing for employment/HE... They would advise based on speaking to you/DD.

CAMHS and the psychiatrist would have come under H (anyone you reasonably request) in the list of people the LA should seek advice from during a needs assessment. Unfortunately, to guarantee their advice was sought you would have had to explicitly ask.

Thank you@1jumpforward2back

Hi, I'm new to this thread but have a thread running about my 8 year old who is in a mental health crisis at the moment. Trying to figure out how to help him and what to do!
He's on waiting list for CAHMS but been told we will be in for a long wait 😫

alwayswelcome.
has he always been anxious/was there a specific trigger?
What do his days look like at the moment/are there specific flash points?
I know you've covered some of these points on your thread,but it's useful for those that haven't seen it but may have advice to offer if you dump everything here
I say it to all that join us,we understand how draining it is caring for an anxious child and how important it is to vent/offload and recharge your emotional battery.you wouldn't let your phone battery drain to empty,so don't do it to yourself either

@Stilllivinginazoo
The main trigger seems to be him being scared of being sick. He has what we think is mucus in his throat constantly and it makes him nauseous. He also has sensory issues and is he sees/smells/hears something gross it makes it worse. He has actually been sick a couple of times after seeing or hearing something gross, so he really fears that happening again.
It doesn't help that I am emetophobic and have severe OCD, so he has obviously picked this up from me.
He is in a high state of anxiety constantly at the moment, since last Wednesday, and hasn't left the house since then.
He has been off school since May due to anxiety, one of the sick episodes happened at school, and I think that has given him some school trauma.
He has so many issues going on, he is on the pathway for diagnosis of ASD and ADD but it's a long wait.
He's on the waiting list for CAHMS but again, it's a very long wait.
Am looking at going private but I just don't think we can afford it
I hope all that made sense, there is so much more as well

always goodness,what a list.no wonder you are at your wits end!
What is he doing during the day?I ask as my DD(older,but bear with) was similar state and if she hasn't got structure her brain goes into absolute meltdown of anxious behaviours and thoughts as it has nothing else to process.
Currently she's been doing drawing,puzzle books,writing,colouring.i take her out for a walk every day(she's a teen).we are lucky she finds nature calming,so walking barefoot in grass/birds and wild bunnies really help too.have you looked at sensory diet?(not food,but sensory ways to calm down)DD is extremely sensory and we have lots of things now she can use.
If he likes playdoh there's mohdoh - essential oil scented playdohwhich comes in variety soothing scents(if he's ok with smells)
Practising breathing exercises is good for panic attacks,but can be tricky if focussing on breathing increases anxiety(if not breathe in for 7,hold briefly then out for 11 counted quite fast) .we have found success with the hot chocolate breathing techniques- visualise a cup of hot chocolate,maybe even draw it?ask the colour of the cup,any patterns or pictures on it.then the choc itself,does it have cream or marshmallows on it/choc flake etc.finally imagine it's too hot to drink and take slow long puffs out imagining cooling it enough to sip
If he's not scared of flames a birthday candle in a clump blu tack/playdoh to be blown,but not extinguished is another visual aid for slow breathing

And don't beat yourself up over your MH issues,it won't help either of you laying too much Blane on yourself
From experience my advice there is do your best to model behaviours you want to see let him see you practising breathing exercises and behaving mindfully(obvs easier said than done,but even slight changes can make a difference!)when I'm out with DD I point out a pretty coloured flower,a scented one,the sound bees humming to it.it does take effort but over time it becomes second nature and my ASD son loves my weird running commentary of what I can see/hear etc and he joins in which is calming for him too
I return to the time for yourself mantra too.do you have any other DC/family and friends in real life to turn to? We all need a break sometimes.that can be as simple as 5mins with a chocolate bar in a room on your own,a few pages of a book,paint toenails etc.recharging in order to keep going isn't optional its necessary

This is the problem at the moment, he won't do anything. He has taken himself outside to the trampoline a few times today but most of the rest of the time he is on screens because he is too anxious to engage in anything else.
We are a gaming family so we have been gaming together which he has enjoyed, but only for a short time.
He also games with his friends online, which I want him to do because at least he is interacting.
It has become this bad since last Wednesday, before that he was going swimming multiple times a week, meeting a homeschool group on a local park once a week, but now it's all just stopped.
My DH managed to get him in the car yesterday to go swimming, but he was too anxious to go in once they got there.
It seems he doesn't see home as a safe place either at the moment, as he is having multiple attacks a day
He won't sleep until about 12/1am as he is too anxious, eventually I think he just falls asleep from pure exhaustion

Welcome always, I was going to reply on your thread, but since you have posted here I'll reply here.

How much VitD is in the multivitamin? It is likely not enough considering DS isn't spending much time outside. He may need an additional supplement.

Have you applied for DLA?

Have you heard of inspirative arts? They are local to you. If you do decide to go private you can search for a private psychologist on BPS and ACHIPPP.

Have you looked at ARFID?

I'm not surprised the a GP won't prescribe phenergan. It isn't licensed for this use (which is why you would have to lie that a pharmacist to get it OTC), and whilst GPs can prescribe off license they are really unlikely to in this situation. If you are going to buy something to help with sleep look at melatonin.

Is DS swallowing the mucus rather than spitting it out? My DS's have a condition that causes thick sticky mucus and if they swallow rather than spit it out it can make them feel nauseous. Also, here we are strict with medication, it isn't optional, if DS's resist we force the matter. For us the battle is eye drops, but nasal sprays would be the same. Sometimes DC can't rationalise something will help them.

Whilst it's tempting to leave him on the iPad whilst calm, for us and others on here unlimited screen access isn't helpful longer term.

Just to reiterate, don't wait to apply for an EHCNA, a MH assessment can be part of the assessment, and if you get an EHCP MH therapies can be included.

Listen to Zoo, looking after yourself is just as important, you can't help DS if you don't.

As always,excellent advice from jump.
Also to add it's harder to claw back unlimited screen time once teenager in throes anxiety

Well it's fun and games here today
DS has face longer than a horse,and isn't listening/not doing as asked.in repeat.his mind's clearly whirring with worries.ive asked him what's wrong and list seems endless,but school is top of the chart,followed by family members various issues then the usual death,climate change etc.going to crack out some board games to distract him for a while see if we can bring him down a bit

@1jumpforward2back can I apply for EHCP myself?
We have applied for DLA, but it's going to take a while to hear from them
I've spoken to crisis again today and they can't do anything, as he's still on the waiting list 🙄, the woman I spoke to did say to keep ringing them and that might push him up the list a bit
He won't spit his mucus out as it reminds him of being sick, he won't spit and can't watch others spit as it makes him feel ill
I'll look at vit d, he is looking so pale and tired due to lack of sleep and not burning off energy outdoors

always Yes, you can make a parental request for an EHCNA. IPSEA have a model letter you can use.

Are you able to rationalise with DS that he is more likely to be sick if he swallows the mucus rather than spitting it into a tissue?

Zoo I hope the face mask etc. calmed DD2. Can DS write his worries down? Then he could work through rating them on a scale and comparing them to how big a problem you perceive them to be. It's a good way of showing DC problems they perceive to be huge don't need to take up so much headspace and their reaction to the problems are out of proportion.

jumpwill try that today

@alwaysscared my daughter had a crisis last year. We had to go private and consulted a child psychiatrist through Psychiatry UK. Medication was prescribed which made a huge difference. It was initially expensive £350 for very lengthy consultation and diagnosis meeting followed by £175 for follow up appointments but these can be every 4 or 8 weeks. If you can stretch yourself financially it may be worth it while waiting for CAMHS. We are still on the waiting list 16 months down the line. Please feel free to message me directly if you want any further information.

I’m a constant lurker on here but don’t post often however I sympathise with every challenge and celebrate every step forward made by all of our DC.