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

rage you are doing great.toyally get the unhelpful"if they're hungry they'll eat" it really doesn't work like that...
DS is generally a good water,as long as texture is to his liking.he lost loads over summer refusing to eat as he was too hot.now cooling down,adding back in whole milk and making him two hot meals a day this month's weigh in he's gained 6lb!!the most ever! He's shot up in height so looks even skinnier though I may need chat to camhs when we see the medic
One-step I don't really notice much tbh,he obviously feels challenged as he regularly says he doesn't like her as she won't let me come to you when I'm upset.he goes in to see her each week but looks like he did at school accepting but not happy.we shall have to see how a trip to garden centre(we taking him,then she's in charge whilst they are there with us "around")goes.she feels he needs a push.im hoping it's not over a cliff stressful.i guess sometimes you have to step back and trust professional judgement
In other news head at D's school has resigned.sweeping reforms of stricter rules of conduct and uniform implemented and I wonder if it's worth poking the hornets nest harder for work at home...

stillI’d definitely push harder. Apologies I may have missed it but have you raised with the school governors at all? If you don’t get anywhere I would write to the governors ( should be on the school website). I am ironically a governor at my school and would definitely want to hear of this!

onestep many thanks for your response. Unfortunately ex won’t play ball ( he took them to stay with his girlfriend first weekend after separation - didn’t tell me, I found out weeks later from the kids!). I think DS is now more at peace with girlfriend being there and Tbf I think she does make an effort ( although I’m guessing DS is often very difficult). School has no rainbows unfortunately - actually didn’t do anything for my DS after the separation. They also don’t want to support an ECHP application but did finally agree to put DS on SEN register ( my ed Psych ran a dummy Connors questionnaire and is convinced the school deliberately downplayed DS behaviour . The two specialists who observed him in school stated they didn’t have any confidence that the school wanted to recognise his needs. I now have a home/contact book so have evidence of the level if disruption at least.). Luckily DS new teacher seems better but the school aren’t implementing any of the support the SENCO agreed to. Because he is academically doing very well it’s like they don’t want to provide support. Only option for DS is to go to a room on his own - when he is terrified of being in his own. I’m gearing up for the next stage of a fight with the school next week. Also think I am now going to go to the GP and try for referral myself, with support from his Ed Psych and OT.

I feel like I’m taking a lot of support and not offering much - it’s just so great to find a place to download. It’s been a very lonely road and because DS won’t stay with a babysitter I end up feeling very isolated and trapped.

Wow Zoo, 6lb in a month, that's impressive.

For DS1 it is good that CAMHS push. Left to his own devices he wouldn't leave the house, and neither would I. That isn't realistic or in his best interests. Not to mention I would go mad. They seem to know his limits pretty well. When DS1 first started seeing CAMHS he wouldn't see them alone, wouldn't talk to them or look at them. This had to change when he went to a CAMHS day unit. There they challenged his reliance on me. Now he doesn't go there and he doesn't have a school placement things have started sliding backwards.

Big an unsupportive school makes everything 10 times harder than they need to be. With 2 professional assessments and the home/school communication book demonstrating disruption, anxiety and time spent outside the classroom you could make a parental EHCP request. Your DS certainly meets the assessment criteria of may have SEN and may need the support via an EHCP. My DS1&3 both have EHCPs and are both academically able so that isn't (or shouldn't!) be a reason to refuse.

Don't worry about offloading here that is what this thread is for.

1step he's never gained so much before,usually a pond or two at best.i think a lot is fact he's shot up.hes deffo at least couple inches taller and dare I say it getting a bit squeaky voiced(my baby!!)

Mixed bag last few days.we had orthodontist yesterday.he was very brave and even went in to a room have an x-ray by himself!his bottom teeth sit in front top ones and they said if his jaw doesn't grow in next few years will need surgery.has a "fang" verging in roof of mouth too so will need braces at some point .for now it's watch and wait.he then had CAMHS that afternoon.we met OT at a garden centre and they went off together.he was very distressed when returned to us(I was mooching in the works(buying puzzle books for Xmas gifts)apparently he got upset and he had enough money to buy a cactus but hot too overwhelmed and anxious.OT said she would either take money or plant but he had do other part transaction or he couldn't have it.he cried all the way home as it was on sale do won't be there another time and he was too upset to handle it.i felt very upset for him

Hi All
Sounds like some challenging times at the moment but you are all doing well to keep going.

I have my senco meeting booked to discuss dd lack of emotional understanding and the impact on social and academic side of things. Not sure what I can ask for tbh. The school are pretty supportive as it is.

She has been and told her teacher about a problem this week rather than relying in me which is huge. I think now start of school is out of the way, and possibly ADs have kicked in proper we are in a better place.

Still need to do DLA application though

Anne lovely to hear from you.glad DD seems more settled and well done for asking for help from a teacher instead relying on you

We struggled this morning as a family lunch was planned. Took 2 hours of negotiation and she has now started working about missing school next week for a paediatrician appointment.
One step has the right name...

Anne absolutely agree!we have some days I see hope and others I want to crawl in bed and hide!not a sterling day yesterday,mainly cos D's got bored playing playstation with dad and dad sulked so D's went into garden and then saw a sparrowhawk circling.he start panic as he's become very friendly with a robin and yesterday it actually sat on his hand and ate some mealworms!!he went out four more times try convince me robin to have more (failed attempts) so when he saw sparrow hawk he was very fearful it was about to "eat my only friend"

Zoo, sorry to hear DS struggled with the OT. DS coped brilliantly at the orthodontist, fingers crossed his jaw grows. Dad sounds like another child. I hope today has been easier for you both.

Anne, well done to DD for self advocating. I hope yesterday was less stressful, and your meeting goes well. Forgive me if you have thought of this, but do the school have an ELSA? That can help with emotional understanding. Ideas to think about that may help generally are a time out card, a quiet space DD can go to, a key worker, quiet room to eat in at lunchtime, help with organisation skills. I can't remember how old your DD is, but exam access arrangements have to be the pupils normal way of working, so if she's entitled to extra time, a laptop etc. then these should be for internal exams too. Do the school have a counsellor? Would DD benefit from SaLT intervention? The autism outreach team?

A really rubbish end to the school week last week highlighted just how spiky a profile DS has, and just how socially isolated he is. We had a good weekend though.

1step his dad is,I suspect on spectrum,and has anxiety and depression(as do i,but I have to suck it up and be mum no matter what) his mum always said look after you no one else and he is just a big selfish child sometimes...since she died he's gotten worse as he lost his dad less than two years before that.ut wasn't until after his dad died I discovered his parents had been providing free board and lodgings and extra money if he wanted/demanded it

Sorry Zoo, that came across as rude.

I promised DS2&3 that if they were ready for bed before kick off they could stay up to watch England, because of this DS1 (who has absolutely no interest in football) insists he can not go to bed either. I foresee tomorrow morning being difficult.

My dd has same problems with bottom jaw btw...

Thanks for those tips one step. We have time out card already where she can go to student support. And they are helping her understand her timetable in advance and letting her know of any changes etc. But she doesnt have any intervention or specific support currently. Outreach sounds interesting, as does ELSA she doesnt need SALT. All good ideas.

We had dietician today who confirmed she has not changed weight since start of term. Ie, she gains in holidays and remains static or drops in term time. She is to stay on milkshakes and we now need to try and do another food diary to encourage her to try other foods.

anne at least you got to keep the milkshakes.we had the. Initially to build D's up along with dextrose powder to add to food but after a couple of months was decided the variety of his diet didn't warrant jtand after than gains were very few and far between.i deffo need to check we are plotting on correct chart as he appeared topless hunting for vests and he looked painfully thin despite recent gain.hes absolutely got taller too
One-step no offence taken lovely,you called it how you saw it and it's certainly not the first time someone's madethat observation!
Tough day with D's and dad was not in reasonable fettle he's back at work/not around much thisweek so business as usual resumes!
He has camhs today at wellbeing cafe so at least I get an hour off!

Hope the morning isn't to unbearable one-step

Zoo, I hope the wellbeing cafe goes/went(?) OK.

Anne, the school sounds supportive, so hopefully they will be receptive to helping. Has DD had a thorough SaLT assessment? SaLT covers far more than speech, and can help with the communication and interaction difficulties that are part of ASD. Sorry if you already know this.

Has anyone got a wall I can bang my head against? DS finds hospitals difficult. It is well documented in his notes. He needs two minor operations. Both independent of each other. It was suggested by one consultant they could be done at the same time to make it easier for the ward staff DS. You wouldn't believe how difficult it is proving to be to organise it.

I need to phone the community paed and the LA to get them to correct incorrect paperwork (why do they find it so difficult to produce accurate documentation?), but fear if I am made to go round in circles some poor sod is going to be on the receiving end of a rant.

Hello

So glad I found you again. I don’t know why I keep losing you. I think sometimes I need a break from thinking about it all and then when I look again MN has forgotten me! I hope you are all ok.

He got on ok.they planted snowdrops in one of the youngest old wellies today

Ah, 1step I didnt realise SALT was about more than just speaking. I will see what the senco says when I see her. We have had the diagnosis privately and been pretty much left to it tbh. We have private psychologist appointment coming up so that will help.

Welcome back bigbus.

I love snowdrops zoo

Anne how did you find your private psychologist? Tbh I’m not sure how things can progress currently as DD kind of functions and doesn’t want to address any issues. I did raise the possibility of a diagnosis and she wasn’t completely averse to it. I doubt CAMHS would be interested though and finding a private psychologist just seems to be a massive task!

An Education Psychologist assessment should highlight where support is needed as well, Anne.

Bigbus a psychiatrist once told me you often have to hit rock bottom before DC will accept they can not go on as they are, and that need help. Once there they are more amenable to you helping to pick up the pieces.

Thanks Zoo and are much needed! I am glad wellbeing cafe went better than the garden centre.

1step we kind of hit a rock bottom (or maybe a false bottom!) about a year ago when we had an hour of screaming before school, lots of anxiety and panic attacks, multiple hysterical phone called if ever I went out without her, lots more. Honestly I got to the point where I wondered if I could actually cope with it anymore. We saw a psychiatrist through health insurance from my husbands job and things got somewhat better but now we are stuck with all these rules that control the anxiety which she is completely attached to and unwilling to challenge because of the extreme anxiety that results. She also has emetophobia so won’t eat or drink for 4 hours before she goes anywhere (including school). She will test herself with social situations which make her anxious but she won’t budge on the eating, drinking, 2 hrs prep before leaving home, all homework done before dinner, body spray in a certain way.... I can go on! Also she’s 13 so recently developed an empathy bypass! I guess we are all a bit reluctant to challenge things as I think we are all scarred by last year.

I change my mind every day about whatever to make her see someone or just to let things lie for now. Someone on here did point out that if she got an ASD diagnosis then that could help her to access services/reasonable adjustments etc. I think I will go back to the GP or the school after half term because if I write everything down it does all sound quite complicated.

bigbus FWIW I would go back to GP.the arrival of hormones add a massive load onto anxious kids and from emetophobia aspect whilst she's functioning with rules the longer it entrenches harder it gets to accept change.it is very hard trying to find a 'hapy medium' between peace and sanity Vs helping move forward

Like Zoo, I would go back to the GP. I see why you would be nervous to rock the boat. We hit bottom a few years ago. DS was nearly admitted, if he had been older he would have been. In order to improve we, and CAMHS, have had to challenge him. It was no good letting him stay within his comfort zone - we couldn't function like that. Things got worse before they got better though.

Bigbus - go to GP. They will tell you camhs waiting list is ridiculously long and to find a private one if you can afford it. They will write you a letter.
Then look on BACP website for a psychiatrist - this is important because a psychiatrist can prescribe medication if it is needed whereas a psychologist cant. They will decide what assessments are needed, any interim medication and if a referral to a psychologist is needed.
Avoidant behaviour is the worst thing because it is a viscous cycle. I strongly encourage you to pursue this.

Thanks for the tip about educational psych 1st step. I think I I'll see what senco suggests

Hope you are all as well as you can be. I can collapse in 4 days time Xx

rage why 4 days??(nosey)

"D"p been aroundlast few days and his MH not great at mo.undettled D's dreadfully now he's gone
Got letter today from dla stating they received claim for D's 2/10 and should get decision within next 8 weeks