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

bigbus❤️lovely pics!
We all question ourselves and I was told once by another parent "if you don't worry about your kids you aren't doing it right"
Agree we perceive others to "have it all" etc.i think behind closed doors we are all shades of odd tbh i definitely am

Big, your photographs look lovely and your "in the middle of nowhere" description sounds idyllic.

The GP will probably refer to secondary care, most (?all but can't be 100%) trusts want a consultant to start treatment. I don't know whether your DS has any additional needs, but without all it may be difficult to convince them to prescribe. Usually there needs to be a reason - physical, psychological, developmental rather than 'just' trouble sleeping.

I too try not to cry in front of DCs'. DS1 is very attuned to my emotions - more so than his own. When I'm down or stressed his anxiety shoots up.

When DD2 turns 20 next year I will have had a teen for 13 years [shocked]. Luckily DDs' are/were relatively easy teens. A couple of years break before another stint, which I am predicting will be the a whole other ball game.

Our appointment yesterday was rubbish. DS fell apart when DH and I went off separately to him. The psychiatrist is going to talk to one of DS' medical team and if they are OK with it he is going to try a small dose of Clonazepam. They want DS to have an EEG just to make sure the movements DS has developed are definitely caused by anxiety not epilepsy. DS will not be happy with that.

That should be and DD2 has just read over my shoulder that I can't say 13 years as it's a few months short of 13 .

one-step sorry the appointment didn't go well
I had to laugh at your DD response about not being exact over the 13 years.somwthing mine would pull me up on

I should have known. You must have a need for precision in your house like we do. How is your DS coping with the lead up to the ASD assessment?

one-step not great.but "d"p had a meltdown of spectacular proportion on Saturday and I had to step in and sound him out he sulking and we not speaking girls at present want nothing more to do with him...
We have builders in tomorrow to fix steel plates into brickwork out back as we had subsidence a couple years back and house was underpinned but it's start get cracks inside again so as council property they are trying see if this resolves it before go down route questioning if under pinning failed.its going to involved two men in back garden with drills.i fear the noise will freak him out beyond comparison and sadly I have to be here and there's no where else he can go.fun times ahead...

Oh no zoo that sounds awful! We had a spectacular parent fail here last night with DD2 (aged 11) completely losing the plot - screaming, shouting, lying on the ground. DH has to remove her from DS room because she was refusing to leave and it was pretty dreadful - obviously DS could move rooms but we tried that and she just followed him everywhere. She knows if she involves DS we have to react and can’t just ignore her. It sort of started with DD1 being told she couldn’t do something and escalated from there. Neither girls manage being told no very well.

Anyway DD1 and DH have gone on an early morning walk and the other 2 are still sleeping. I’ll enjoy the piece and quiet before they wake up!

Has anyone done parenting classes? I’m starting to think DH and I might benefit from them. Do they deal with situations in which DCs have mental health needs?

Thanks

bigbus

Zoo, oh dear, P really isn't helping is he. I know you have said before that you don't have support. Have you had a carer's assessment? Also, do you get DLA for DS?

Big, that sounds tough. It's hard when one DC triggers another's meltdown. Would using some PDA strategies help? Others have success even when DC don't have PDA as it gives them a sense of control.

I have done a few different courses/workshops. For DS1 they weren't parenting ones specifically, but mental health, sleep, sensory, communication related. Some were useful, and some a waste of time. DH went on a restraint course - I didn't qualify for funding because I had previously done a more advanced course many moons ago via work. We both went to a non violent resistance training session, which while interesting wasn't really aimed at DS1's needs. For DS3's ASD we did the Cygnet course. We didn't learn much new here either, unfortunately.

Thanks Zoo seems like we need a storm sometimes to clear the air. Better today. Like your lil zoo, yr7 looming for DD2 is proving quite challenging!

1-step thanks also. Getting DH to participate in anything would be difficult I think. Sometimes I feel like a complete failure and other times I feel like we’re doing ok. Maybe everyone feels like this too.

bigbus my "d"p doesn't want to acknowledge the size of the fallout D's anxiety causes,nor accept high possibility of add,so you aren't alone at all with DH not being totally on same page

One-step I get no benefits for him,nor have I ever.dudnt even think about it as a possibility tbh.hes been off school since January on note provided by O.T so if I were to go for anything would it be backdated??

Big, I think it is common among parents with DC with additional needs. I often feel as though I am failing. I am lucky that DH is brilliant at being hands on when he's not at work. We have very different ways of coping, he can be bloody irritating at times, but I'm sure he would say the same.

Zoo, please apply for DLA. If you ring up they will send you a dated form. The DLA will then be backdated to that date. From what you post here and the fact the OT believes he's too unwell for school you should definitely get it. Further down the line, once you get DLA you can then claim carer's allowance. If you get child tax credits or universal credit you get an extra amount too which is backdated to the start of the DLA claim if you tell them within 1 month of receiving the decision.

Please also ask your council for a carer's assessment for you and an assessment for DS from the disabled children's team.

bigbus your photos are beautiful - so serene! Avoiding comparisons with other families is huge. I'm not always successful but it's much better now. Mind you, the process for me began much earlier (10+ years).
Haven't really done parenting classes. DH and I participated in an 8 week support group while our asd kids were attending socialization classes in the same building. It was good to connect with others.

zoo fingers crossed the builders don't cause too much stress for DS. I'm sorry the last appointment didn't go well. I agree that behind closed doors no one knows what really goes on.
The benefits 1step is suggesting sound so promising for you. We claim child disability benefits. We weren't aware of it when our first was diagnosed so the benefits were backdated.

1step I'm sorry DS last appointment was awful. Fingers crossed things improve and doctors are on the right track.

My friend in RL and I always joke about the "ugly car cry" (I don't drive so I have my "ugly shower cry"). Although it's no joke- it's that moment alone as a parent when you let it all out...and yeah its really ugly crying. But it's somewhat comforting to know that other mom's out there understand and have been there

Hi all
I have an ugly car cry. :)
Sorry for those of you finding it tough at the moment. I am finding it hard as it seems dd is clinging to me like a rock in the ocean as I am the one who understands her most. She is also ramping up the anxiety about going back to school.

Anne when's your return date to school?
My girls go back on 5th sept

Just wanted to say rage I remember you are moving back to UK towards end of this month and if you are lurking sending big hugs and positive vibes

Thanks all for your kind and supportive words

DH is actually very hands-on when not at work (he is at work a lot though!). He’s just not very psychologically minded.

It’s a shame you need a diagnosis for melatonin. DS is actually ok in general but just can’t get to sleep and it’s starting to bother him.

Better day all round here. DD1 ate chips at lunch even though we still had to get a little boat and drive to get home. Sounds little but this is massive! DD2 still a big mess though. Spent 2 hours in a massive huff with me because I won’t get a dog (I have always been very clear on this, it’s not a new thing). I hope she’s better after secondary school starts.

Big, you don't necessarily need a diagnosis, but usually something suspected e.g. on the ASD assessment waiting list or waiting for CAMHS treatment etc. Asking is worth a try, there's nothing to lose.

At the risk of being a pain and further to my pp regarding DLA and carer's assessments I am going to also mention 2 charities. Family Fund provide grants to families with DC with additional needs - including ASD and MH problems, and Merlin's Magic Wand who provide tickets to a Merlin attraction for those with special needs, but also to other groups of children including after bereavement, DV, young carers. The first is dependent on household income the later isn't.
Viking, I think Merlin's Magic Wand covers you too.

Zoo - we do back on 4th. Dds head of year emailed today to check in. I nearly cried. It came as dd was having a meltdown about school.

So, we have had the diagnosis through private psychiatrist. And we will find a private psychologist as camhs is a year wait around here. Should I still ask gp to refer to camhs? Is it worth it?

We dont have any financial concerns but the post about various allowances got me thinking. Is there anything I should be doing for dd now she has this diagnosis? Other than just working with school?

Merlin's magic wand sounds ace but dd is scared of them parks :(

Bigbus - you can buy melatonin online. My dd takes 4mg per night of it helps. Buy them in 2mg tablets and go from 2-6 as required.
I get from GP as prescribed but our psychiatrist told us if we had any problems with supply just to buy them.

Apologies in advance for the long post. It is a bit of a bugbear of mine that professionals often don't mention these things and getting correct information from LAs can be difficult.

Anne, we have a highish household income. But having DC with additional needs is bloody expensive. We get DLA for all 3 DS' and while we could afford not to claim it and my carer's allowance it would mean cutting back. DC would get fewer experiences - holidays, days out, clubs etc. We wouldn't be able to have our cleaner so I would have less time to focus on DC's needs. I couldn't randomly spend £££ without thinking on all the things I think might help but don't - Privacy Pop, various lighting, dream pad pillow... We have also found it acts as evidence of need e.g. Carer's tickets for museums etc., respite clubs, charities, blue badge, CEA card for free carer's tickets at cinemas, disabled railcard, disabled bus pass... If I was you I would claim it, it is to cover the extra expenses for DD's benefit. For us it doesn't cover the additional costs, but it helps. David Cameron claimed it for his son, it is not means tested for a reason. Not relevant to you but DLA for 2 year olds gives access to funded nursery hours.

A carer's assessment from the LA opens doors too. Via that I learnt of a sensory playgroup held at a local special school which let my then 7 year old DS1 attend. And of a local authority carer's grant which we got for some new garden furniture. It also means we are on their books for when we need them e.g. It made getting some emergency respite easier. It was towards the top of my to do list when we moved LAs. An assessment from the disabled children's team for DC does similar. Again not relevant for you but social care can access funded nursery hours.

Merlin's Magic Wand covers more than just theme parks - Warwick castle is included, Madame Tussaud's, Sea Life centres, London eye, London (and other) dungeons etc.

Yes, still get a CAMHS referral. Your DD is then known to them in case you need them in the future - or is there anything you need now well CAMHS version of now anyway. Also, not everyone accepts private diagnoses unless the HCP also works in the NHS.

Are school meeting DD's needs? If not then you could go down requesting an EHCP needs assessment. Has your DD had an Ed Psych assessment? School could ask for the ASD outreach team for support.

one-step I'd just like to say thank you for sharing your knowledge of support available.kike most things,if you aren't told you don't even know these things exist !!
I think I shall attempt to apply for DLA for D's.we are on benefits and any extra funds would allow us to add sensory things to his room,work on the garden(he loves watching the birds and investigating insects out there)and try to manage some outings as costs when he may not cope and we don't stay/do much there have ment we have stopped trying as cannot afford to "waste" what little we have

Invaluable info - thank you 1step.

sorry I lost you for a bit - MN doesn’t keep this post in the ‘I’m on’ section for some reason
I am so glad you wrote this - I thought it was just me.
Found you all again as I had this as a watched thread in my second e-mail just for MN notifications
Just wanted to say rage I remember you are moving back to UK towards end of this month and if you are lurking sending big hugs and positive vibes
Aww bless you zoo thank you for remembering. That means a lot to me. Tis me rage (takes off mask).
Nah, I do name change after >1000 messages
This particular name change was due to my eldest calling me a fun sponge/joysucker. Plus I read the Joy Luck Club by Amy Tan agian recently.

I need a more positive New Me, New Move, Back in the U-U-U-K, I know that I'm here to stay girl (yes, I am channeling the Beatles there, saw Yesterday with my eldest before leaving).
DH has come over with us to help set up. Dreading Sunday when he returns to Germany.
At that point I am alone with my younger two and the whole shit gets real. My lovely boy has had 2 meltdowns in Wetherspoon's, 1 in Pizza Express, 1 in Ikea in 3 days (We are in a hotel until next week as house is being painted. It feels like a siege/hostage situation. I THINK I'm the hostage ).
It is the weirdest feeling to be back. Very strange indeed. But the cashiers, waitresses and shop staff have been so nice to me just making chit-chat that I feel quite giddy with emotion.
Hope you are all very well. I will update soon, hopefully with positive news or at least some kind of resolution of sorts.
Have a great bank holiday weekend. I will have hit a sleep deprived wall by then