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

croydencat welcome.apart from bedwetting,sounds a lot like my youngest DD(who is ment to be on wait list ASD tests)she too has high academic capability(top set maths etc)
If bed wetting is new I would be a bit concerned at this age where that was triggered.its hard to say for certain,as I'm told again and again everyone has "traits"
Have you other children?what's you real life support like?

Hi zoo! She is an only, but says she likes it (extra attention). No real support - feels a bit taboo - I don't want her treated any differently by friends/family. Yes, I am concerned about the bed wetting - worried that her anxiety symptoms are escalating. How old is yours on ASD test wait list? We have a CAHMS interview next week. x

cat she's 13.ds started process aged 14 and initially after CAMHS first visit he was connected with OT.she queried ASD and from initial form filling and first interview to diagnosis took 16 months for us

I'm sorry you don't feel able to talk to anyone in RL
If you haven't read back over any previous pages

Thank you. :-)

Welcome, Croydoncat. There are enough markers in your post to consider an ASD assessment. If the bed wetting is new have you spoken to the GP to rule out physical causes?

Zoo I hope you are managing to carve out time for yourself.

Hi skippy and zoo. Thanks for your message. We thought when she was about 5 maybe Sensory Perception Disorder (though didn't get it formally diagnosed) as that was really evident. But those behaviours have been lessening over the last two years and at first I was so happy but now seem to be morphing more into ASD behaviours. Can I ask - what will be the benefits to our daughter if she does have an ASD assessment? I don't want to put her through it if there is no real benefit for her at the end. Thank you for your help - really appreciated.

Croydon in the UK SPD isn't commonly diagnosed as a separate diagnosis. Many HCPs view it as part of other diagnoses, such as ASD. Your first post does suggest sensory processing difficulties - food, clothing, noise, water.

A diagnosis would bring an understanding - for DD herself and from most other people. It would give her protection under the Equality Act, and allow DD to apply for DSA support if she goes to university. It is often easier to push for support at school with a diagnosis and DD could access ASD specific support if any is available locally or needed in the future. IMO it is much better to get a diagnosis before reaching crisis point.

Thanks Skippy. We are engaging again with CAHMS this week, so will see how it all pans out. I am nervous about making it a 'thing' therefore and possibly making my daughter's anxiety worse. Hopefully CAHMs will have good advice. Really appreciate your input though.

Hi all, popping in for a bit of a handhold. Today was wretched, and brought up recurring feelings that I've failed my DCs in certain ways. DS1, now 18, thinks he no longer has to do anything I suggest (which has become the bare minimum) because he became an adult this month. DS2 and online learning has been hell. We have been in a second lockdown since Christmas holidays, with schools closed until February. Phone appointment Thursday with school social worker for DS2: anger issues with online learning, rude to teachers, etc. Teachers have had to remove him from the zoom class several times. DS1 still underweight although not losing...still same weight he has been for about 2 years.
I've come a long way in not comparing my situation to others, but I do have friends with SN DCs who have come so far with school, college, etc. DS1 has lost all interest in a real job and just wants to be a youtuber. I feel like a broken record with him. I feel defeated.
Thanks for listening x I don't normally highjack like this.
Always appreciate my friends on this thread. zoo, skip, etc I think about you all even when I don't post.

Viking don't apologise lovely.we are always here and you have been with us since the beginning❤️
How utterly despairing for you
what's dh opinion/support like?
I get the talking to a brick wall feeling.ds is starting resisting and dd2 in anger fuelled depression is very hardwork on everything from why should I help take out the binsto I can't/won't do school work
Sending huge hugs lovely

Thank you so much my darling zoo - your words were so comforting. I know you understand . It’s so hard isn’t it?
DH support is mixed. And complex - I wouldn’t know where to start. He understands but so much of the raising kids falls on me. DS1 doesn’t have a good relationship with him. But DH does have steady employment- even in a pandemic- and does help practically (ie picks up groceries I’ve ordered). He wouldn’t know where to start with their schooling though. And has little patience.
Today ran more smoothly so I am thankful. As we all know it is such a long, hard road.

Viking you haven't failed DS'. Not have you hijacked the thread. I hope your appointment with the SW was productive.

You sound utterly exhausted. Is there any chance of some time away? Even if it's just a walk or bath in peace.

Sorry things are so difficult with you Zoo.

I am so tired tonight.

Viking
Skip how's things at yours?

DS' are OK Zoo. I on the other hand am exhausted, and talked and touched out by the end of each day. There's a reason DS1&3 have 1:1. DD2 is frustrated she's missing yet more lab time.

Apart from struggling with video calls, which is somewhat eased by not having the camera on and being on mute, home learning works well for DS3. It will be the reintegration when they go back to school that will be rough.

DS1 has had several meltdowns about going outside or exercising recently.

How are you?

Crashing and burning spectacularly...
Dd2 is angry and unmotivated.everything us an arguement.fundinf schoolwork overwhelming and can't concentrate,yet can binge watch CSI on laptop indefinitely.ive cried for couple hours two night running on the back of arguements about dinner and what to watch in tv from her.
Getting simple help with chores

Thank you for your kind words skip, and I’m sorry it has been an exhausting time for you. Sheesh, I struggle with two DCs and am awed by how you (and zoo) effectively manage more day in and day out. I do hope the last couple of days have been kinder to you.
Oh zoo how utterly difficult things seem right now. Are you ok with asking your doctor for advice? It probably sounds redundant suggesting this to you so my apologies. Where I live there’s been an increase in the number of online mental health services due to lockdown. Perhaps there is a new service that may help you? How has today been? Sending hugs and chocolate

Viking I hope your week is better than last.

Zoo I find everything is easier to cope with when the days are lighter, too.

School shouldn't be so stressful, can you speak to the school? The exchange will help your EHCP appeal. Other than schoolwork can you limit screen time during the day? DD2's struggles don't excuse her taking it out on you.

on Sunday I had the house to myself for a whole half hour . DH and DC arrived home to find me asleep on the sofa.

Normal service resumed yesterday when there had been tears 3 times by 7am. It set the tone for the rest of the day. Quieter day today, thankfully.

Please can I pick everyone's brains for advice? I feel bad asking as I am in awe of what so many in this thread go through on a daily basis and still find time to support others on here, you're all amazing!
I often look here for updates but dont always post.
Further to advice previously received on here I have just applied for DLA, finger crossed for a positive answer.
I am now moving ono the next item on my list which is asking for a ECHP. SENCO has said they will help which is great but has also said school will not be able to provide any more support than they are currently giving.
DD13 has anxiety and is probably on ASC spectrum and is on waiting list for assessment.
She has been school refusing for over a year now, hasnt been engaging in online learning during lockdowns and since september has been going into school 1-2 days a week for 1-2 hours only , and when she is there sits in sen area, so shes not attending school very much at all and if she does go in she isnt in lessons.
So my question is what sort of things should I be aiming to get in place for her?
If anyone has an ECHP for their DC with anxiety/ASC what help does it provide and what support worked well for them?
Any advice on getting through the process would also be gratefully received.
TBH tonight I am wondering if its even worth applying for an ECHP if I can barely get her into school. she is so far behind she feels overwhelmed and the longer she is out of lessons the harder it is for her to engage with school work and the more anxious she becomes. Its so hard to get her to try .

You've nothing to feel bad about Runner. for completing the DLA form. I find them emotionally draining.

Do apply for an EHCNA. If DD can't attend school there is EOTAS e.g. home tutoring, or a school with a resource base/unit. Therapies can also be included in EHCPs so well worth applying. Schools have to provide provision in EHCPs regardless of what they perceive they can provide or what is normally provided.

For now focus on getting the LA to assess. IPSEA and SOSSN are helpful. IPSEA have a model letter for requesting an EHCNA.

I would expect OT, SALT, ELSA in an EHCP for someone with ASD and some form of therapeutic intervention for anxiety. 1:1 if needed. Between DS1 (complex MH problems, EOTAS) and DS3 (ASD, mainstream) they have home tutoring, 1:1 TA, OT, SALT, ELSA, Lego therapy, art therapy, play therapy, physio, rebound therapy, swimming, social skills group and a few smaller bits such as touch typing.

For DS1 Lego therapy is most helpful, it's the only type of therapy he truly engages with. He doesn't engage with art therapy. The tutoring works well, as does physio/rebound therapy/swimming - getting him active is a struggle but is important for a medical condition. ELSA is helping DS understand and communicate his feelings and recognise others' emotions.
For DS3 the most helpful are his full time 1:1, OT and ELSA.

Separately to EHCPs, LAs must educate those too unwell for school. However, at the moment IPSEA believe it may be difficult to enforce new requests.

Sorry, that should be IPSEA and SOSSEN.

runner do apply ehcp.withput it school will leave her without an educationand we'll done on the DLA form

It was bliss Zoo. I am going to shove them all out the door encourage them all out of the house this weekend too. I hope DD1 can have DC for you and DD2 changes her mind. I hope the TAF and CAMHS review go OK.

Zoo/Runner the LA can't actually leave you with no education. They have a duty to educate those too unwell for school. If they don't you can force them to via Judicial Review. Although, how easy enforcement would be at the moment I don't know, IPSEA think whilst schools are off it may be difficult.

Thank you so much for your replies, you are all fonts of knowledge 😊
Im so glad I found this post.
Today was another difficult day,DD is meant to go into school tues-thurs,just for 3 hours ,didnt manage it yesterday and didn't manage it today either. School offered
DD had about 3-4 sessions of ELSA in year 7, i thought it was just a short program ?? Is it something that can be ongoing?
What is SALT? Im struggling to keep up with acronyms! I would never have thought of asking for some of the things you suggested, basically because ive no idea what can be offered, so your input is very helpful . Thank you for taking the time to reply.
Lets hope we all have a happy, relatively stress free day tomorrow.

Just googled SALT! Speech and language therapy?

Welcome runner - yes I believe SALT is just that (I’m not in the UK). Best of luck going forward!

skip that break sounded like pure bliss! Hopefully you will have another opportunity soon.
zoo fingers and toes crossed that dd2 changes her mind so that you can get a total break. DD1 is wonderful.
Not doing too well the last couple of days. Considering emailing my gp tomorrow for something...a little Ativan. She last gave me a script for 10 pills two years ago and I took the last one yesterday. I am DS1’s only real source of engagement re: his feelings, well-being, etc and it’s so difficult. I’m happy he trusts me but I think he needs professional MH help and I’m so worried he won’t talk to anyone. He has in the past but now that he is 18 he says things like ‘I’m an adult now so...’.
I think I can arrange for him to talk to his GP but she isn’t an MH professional. Sigh.