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

Hi she will just keep coming and getting me. And getting more and more worked up. I have a 2 year old who has just started sleeping through lol so I'm used to the broken sleep. She has spiralled so much since January since she had an operation for sleep apnea. Her OCD started and each week it's a new ritual she carries out. I times her the other day 22 times in 5 minutes she shouted to tell me something. Like mum I trumped, my i nearly fell but i didnt, mum I touched the washing line. She doesnt take a break she must be shattered. I'm hearing ocd and anxiety can be part of asd. She is very verbal at home. Selective mute out of the house unless I'm there.

Dolly welcome. Is DD medicated for her ADHD? It often helps reduce anxiety. If she doesn't take melatonin, that would help at night. Unfortuantely anxiety, SM and OCD can be co-morbidities of ASD & ADHD.

Theme parks are going to be difficult for most with ASD and ADHD. Depending on the park did you have an access pass? That would make it easier, as would things like ear defenders and social stories.

If when she wakes she will come and get you why don't you sleep in your bed? The constant stream of consciousness and monologuing is part of the ASD and ADHD.

Day have you thought more about counselling for you? Zoo's right, 'What if's' will drive you mad.

How long you wait for a psychiatrist appt will depend on the HCP's notes, other patients, waiting list, when they hold their MDT meeting... The HCP will be constantly assessing. Without assessing whether a psych appt is needed she wouldn't know if one's needed immediately, it is safe to wait or it isn't necessary. Prior to starting ADs DS1 will probably need bloods, BP and maybe an ECG.

DS1 first waited about a week to see a psychiatrist. He was seen the next day when referred to tier 4 and in crisis, and a longer wait on referral to a specialist team.

DS3 has seen 2 psychiatrists for one off appointments related to his ASD assessment and the EHCNA. With the first he didn't specifically wait for a psych appt, but did wait for the ASD assessment. For the EHCNA he waited 5 and a half weeks, just before the 6 week deadline (everything to do with the LA is always last minute).

Zoo sorry DP isn't helping. Just to let you know, parents submitting to SENDIST now are receiving Dec hearing dates, so I wouldn't delay submitting DS'.

DS1 has been unwell the last few days and his anxiety is always higher when he isn't well. On top of being unwell his blood sugar levels have been high so he's going to have a monitor to wear for a few days to see whether he needs to start treatment.

X post.

Day please apply for an ECHNA.

You CCG may not have a panel. Zoo's might not either - many LAs and CCGs claim panels make decisions when they don't. Someone on MN caught their LA out about this with a freedom of information request. It is likely DS and Zoo's DS will be discussed at the MDT meeting though. And the waiting list would be triaged.

Should say "Your CCG's CAMHS"

She shares a room with my 2 year old so it saves her waking her as well of I'm already there. I'm not looking to medicate her unless they pretty much say I have to. I'm used to life like this with her. Its just the way our life is. She officially gets her adhd diagnosis in August. Doc said had to wait for her to turn 6. Which was a couple of days ago. Anxious about her new school. Moved her schools as the head teacher stated children that need any sen support in schools should not be in main stream education 🤣🤬 as you guys can imagine this did not go down well at all. Considering I worked for 7 years as sen in schools. I was vloody livid xx

Day MDT = multidisciplinary team i.e. a team made up of various professionals - doctors, nurses, clinical psychologist, OT...

An EHCNA is an education health care needs assessment. I have previously posted you a link to IPSEA, who explain what an EHCNA is and have a model letter on their website you can use to request one. You should do that ASAP, don't wait for the charity worker's evidence. If you want you can send it on when you receive it, but it's unlikely to make a difference to whether the LA agree to assess or not.

Hopefully the benign heart murmur won't be a problem. Some ADs can cause changes in heart rhythm, blood pressure and bloods, so most like to check them first and have a baseline.

GP, local carer's organisation, relate for counselling.

Dolly ADHD medication is likely to make DD's like much easier for her. Melatonin is a naturally occurring hormone, but many with ASS have a lower than normal level. If you did allow her to have melatonin she is likely to feel better and be less anxious if she gets more and better quality sleep.

Does DD1 have an EHCP? I take it she does if there's mention of SS, in which case what provision is in there to help DD. Have the new school helped with transition?

I was worried about the effects during the day. My nephew was on medication and he because so so withdrawn x

hop poor D's.hope it's nothing serious and feels better soon
I ment to ask as dd has been steadily worsening since November

I really should proof read . My pp should have said ASD, not ASS. And the post before that Zoo's DD2, not DS.

Zoo From your posts here (although I appreciate it may not be the whole picture) I don't think DD2 will get an EHCP at this stage. Partly because you would struggle to provide evidence to get the LA to agree to assess. If she fails or struggles to transition to sixth form I would apply then. That way you would have evidence. The difference between DD2 and Day's DS is Day's DS has CAMHS evidence and wasn't coping in school.

Benefits wise it would be PIP. There's nothing to lose by applying. It is hard to get for MH conditions, and like DLA the form needs completing in the right way. Again your problem may be evidence. If DD2 can not manage the claim herself or budget then you can apply to be her appointee.

DS should start to feel better soon as he's started treatment. A medical condition means he's at higher risk of a type of diabetes so I'm praying the glucose monitoring comes back OK.

Dolly, seriously consider trying ADHD meds, they can be life changing. If one type has negative side effects there are others. Once you have given them a go if they don't help you can stop. Also, melatonin won't make someone withdrawn.

If you don't already get DLA you should apply. You don't by any chance live in council or HA housing do you? If you do you could apply for another bedroom on medical grounds.

Under CAMHS my DD had weekly therapy for 3 months and then the therapist said she wanted to refer her to a psychiatrist for medication. She was seen by the psychiatrist the following week.

Hi no we had an extremely private house. But have recently moved for a better school with more SEN support. Which means bedroom sharing. I applied for DLA last week. Mainly because when she is anxious she chews her clothes. So I literally have to buy new school cardigans constantly when she has chewed them. When her anxiety is heightened xx Love this page. I'm learning so much.

Fingers cross she will be entitled to it x

Dolly I'm glad you've applied for DLA. If it is refused ask for a mandatory reconsideration and then go to tribunal if necessary. Just thought I would mention housing in case it was relevant.

Chewing clothes is a sign of sensory needs. Has DD1 seen an OT, and if she has an EHCP is OT provision in it? Can DD chew something else? You can get bracelets, necklaces, pencil toppers and toys for exactly this issue. This booklet about sensory processing is very good. DS1 and 3 have chewy Lego brick pen(cil) toppers and Lego brick necklaces (but they don't wear the necklaces just chew the brick and for DS1 I cut the string off because it's a safety risk.).

Happy birthday Day. A benign heart murmur shouldn't be a problem. Sorry to hear about your DF.

Thank you. Yes I've just got the the necklaces. She loves them. Has one with her at all times. I'm new to all the terminology haha. She has seen 2 specialist for her adhd and asd. Specialist has referred her to camhs and also to a child psychologist for her OCD and anxiety. That's all thats happened so far x

Psychologists will be part of the CAMHS team.

Ask for a referral to OT. If sensory OT assessments aren't available in your CCG (this service isn't commissioned in all areas) a private assessment or an assessment via an EHCNA will benefit DD.

What's an EHCNA x

Happy birthday day

@dollypops15 1hop explains what an EHCNA is a few posts above. Lots of very useful information.

Sorry Dolly. I assumed you knew from working in a SS and DD already had one given the HT's comment about MS education.

An EHCNA - Education, health and care needs assessment, is an assessment prior to deciding whether someone is entitled to an EHCP (education, health and care plan). An EHCP is a legal document that sets out a child's needs and what support/provision they need and must be given. A few pages ago I posted a link to a charity called IPSEA that explains everything to do with them.

In Wales and NI it is a Statement of SEN and Coordinated Support Plan in Scotland.

Ah thank you I know what a statement is I just didnt know it went by a different name. Her SENCO at school has already put an IEP for her starting. Thank you I'll look now xx

Dolly No one in England should still have a Statement. They should have transitioned to an EHCP by now. Changed with Children's And Families Act 2014 and the SEN Code Of Practice.

Day DCD is another comorbid of ASD, ADHD, SPD etc. Some in the UK don't believe SPD is a separate disorder, but that it forms part of other neurodevelopmental disorders e.g. ASD, ADHD, DCD. A good sensory OT is worth their weight in gold. I think Zoo's DS uses playdoh (mohdoh?). DS1&3 are sensitive to clothes too.

Sensory clothes issue here too. No labels in clothes. Nothing with tight necks. Socks course a massive breakdown. Hair touching is an issue. My daughter looks alot like shirley temple so you can imagine her hair. Tights are also a no no. She is currently into football kits and boxes. Refuses knickers point blank