Parents of anxious kids/teens support thread(part three)

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

Advice please ladies im still a newbie. Well was in tears before. My brother died last week and my 6 year old has struggled with this. Her OCD and anxiety is literally through the roof. Clinging to her paediatric appointment next week.

Just got a message. The doctor has now booked leave so its cancelled until 28th January 2021.... what do I do? She is decreasing rapidly and needs to be seen ASAP. Thanks in advance guys

DayB1Day its horrible isn't the constant knock backs. You think this vulnerable little people should be inundated with support

dollypops I'm sorry for your loss

Apologies for my overtired brain fog,is DD under camhs?

If not I'd be asking g.p to look at ways to support her in the interim.

Understanding death is hard and it's bound to exacerbate anxiety,that's perfectly "normal"(hate that word)

She has been referred to cahms but I was warned its a long wait. She is developing more ocd routines by the day. Which is worrying me. She's only just turned 6. This is what I was hoping to discuss with consultant. I dread to think where she will be at the end of January 2021 if they don't help x

Dolly You could contact the consultant's secretary to ask if there is a possibility of a sooner appointment because DD has deteriorated and isn't coping. Make it known you would be available for any cancellations. You, or your GP, can also update CAMHS. DD may move up the list if the situation is more pressing (this is more likely if it comes from the GP). If you get to a point where you or DD can't cope you can call the CAMHS crisis team.

OCD can be co-morbid with ASD, but sometimes the OCD like symptoms are autistic obsessions, rituals and routines rather than meeting the seperate diagnostic criteria. In which case, look at how you can reduce DD's anxiety (sensory, predictability, environment etc.).

Have you had social care assessments? A carer's assessment for you and an assessment from the disabled children's team for DD.

DD is of an age where children first consider their own mortality and grasp the reality of death. Be honest with DD, let her talk if she wants to and use direct language. Reading a lot of books seemed to help DS'.

Day Glad you are feeling better.

Thank you so much for your advice. I'm hoping to make multiple phone calls Monday morning. I've never heard of social care assessments. What is that?

Her new thing is "am u being good or naughty?" " am I being rude or interrupting?" Am I being a nice sister or horrible?" These questions literally no lie at least twice every 5 minutes throughout a 23 hour day. If not more. She must be so so worn out

Dolly you are entitled to a carer's assessment from social care under the CAFA 2014. On page 4 is a model letter you can use to request one. DD is entitled to be assessed by the Disabled Children's Team under section 17 of the Children's Act 1989. There's a link to a model letter here.

Those questions may be DD's way of learning social norms, because of her ASD she is unlikely to know, intuitively, social communication and interaction norms. So, DD does X then asks if she is good or naughty to learn whether X is socially acceptable. Likely to be related to her ASD and exacerbated by her need for reassurance because of the anxiety. Has she had any social skills interventions?

Slight NC.

Wow I love your responses thank you. No we have had nothing. Literally no interventions, no help, no support for me so I know what I'm doing. X

DS hates the heat
Youngest has issues with sleep at best timesso I need get it done
DS is also rev up over concept of schoolwork sept

Sen support ment be ringing me at some point today

Stilllivinginazoo its days like that I turn to a can of monster or Lucazade to keep going.

dolly caffeine drinks just end up giving me a headache
Day I'm sorry last night was so stressful.it is hard on siblings,it's hard on everyone incl ds

Well I had chat Sen support services.theyre chasing up mediation and she text me bit later dates set for sept via video call(9th I think,lack sleep I can't quite remember off top head)
She's also go chase up ASD team as diagnosis was pending 6-8 weeks and that's now passed.if we get that it's another strong point why we don't want that lea school option..
Also go chase up DD camhs medic appointment,see if we can organise getting DD GCSE without needing go into school and making contact 6th form dept see how transition for DD can be handled

I felt was quite productive all in all

Hi everyone my daughter has her first camhs appointment next week. To look at ocd and anxiety. They said she has complex needs and has been given an urgent referral. What should I be expecting at this appointment xx

Have you been asked fill out forms about her birth and do rcad assessment?(questions with always,sometimes,never etc)if not that's up first.takes hour or so yo do detailed history

If already covered that then it's basically what can be done to help moving forward(options etc)

day how's things?

Dd2 gets GCSE next week.anxiety is almost unbearable now.had hysterical panic attack whilst email chat camhs.she ask her if could ring/meet on person and took her right over the edge,pacing garden in floods tears gasping cry n screaming wanted to die.did not help adding others were doing face to face engaging more.she feels that as added pressure...
I email lady in question and she just sent links to advice parents on exams stress.i really feel we wasting time and making her so much worse.i explained how fragile she is as that we still awaiting meds and that need to challenge needs be paced against how overwhelmed she is.no reply to that
DD very reluctant speak her again
Was up all night panicking and pacing.shes still strung out today.poor lamb must be wrecked

Hi no I've not filled out anything. My doctor just gave me the number of the response tram who then did and urgent referral.

Ah I feel for you. It must be such a hard situation for you both xxx

day that sounds so very very hard
I got email to say we can pick up GCSE results online.thats good,but will need go in if fails meet grades for a level
Plus they not happy idea transition back they want her there day one.try two weeks then we can see what needs be done support her properly.shes been up all night panicking,still at it.ifear will have full breakdown before they get bloody results at this rate😖

Zoo Sorry DD is stressed, and despite being cooler you haven't slept well. If you are ever worried DD2 isn't safe do take her to A&E or phone the crisis team. Many schools will be lenient with entry to A levels if results are a shock but CAGs would allow entry.

I do agree, DD should try to attend the first day if possible. Otherwise she may find it harder to go back because on top of what she's already worried about she will worry she has missed out socially and academically. So far the school have been supportive so hopefully they will continue to be.

Why have the LA not named your school? Unless it is wholly independent the LA can only refuse if it's incompatible with efficient use of resources or education of others, or unsuitable for the age, ability, aptitude or SEN.

Experts advise to get the certificate and go to tribunal. Otherwise time is wasted, and if the LA are going to concede they will anyway. I'm glad SEN Support were helpful and will chase things up for you.

Dolly the format of CAMHS' initial appointments differs area to area, but they will all want a life and social history - birth, development, other dx, who lives at home etc, and current difficulties. It is likely to be an appointment to triage DD on to the correct pathway and assess urgency. As Zoo said, there may be some forms to fill in too. It will help if you make a list of points you want to raise, otherwise you may forget something in the heat of the moment.

Have you spoken to the new school about support? From your posts I feel you are going to need to apply for a EHCNA.

Day sorry things are so difficult. Are the crisis team involved either via A&E or over the phone? Milestones assessments will look at DS' development from infancy. I am surprised this hasn't already been taken. Can you and DD spend 1:1 time out of the house or is there anywhere DD could get some respite for a night?

Like I said for Zoo's DD, there will be some leniency if CAGs meet the entry requirements.

Sorry for the long post.

We've had a stressful few days. I had to go to the bank after failing to sort a problem via the phone or online. I had to take DS' with me because DH was on a important call and it wasn't safe to leave DS'.

DS1, who is not normally a runner, bolted when he became distressed - it was much busier than I had anticipated. He was missing for 30 minutes before luckily being picked up by the police after they were alerted by a member of the public. He was incredibly distressed and the police asked for the joint MH team to assess. Since then he's been even more clingy than usual.