Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

Welcome Milly. Perfectionism is common in high functioning autistic females. Asperger Syndrome is no longer diagnosed, it is encompassed with ASD now.

If you are worrying how DD will manage to live independently I would think she meets the PIP criteria, although it isn't easy to get. Genuine question, what makes you think DD isn't eligible given your worries about independence? DD, or you on her behalf if you become her appointee, have nothing to lose by applying. Have a look at the benefits and work website and this guide.

Unless short term and working towards reintegration part time timetables are illegal whether or not parents agree. DD should have received medical needs tuition when at school and an EHCNA submitted. If DD still is attending full time or is struggling when there you should make an EHCNA request now.

Zoo speaks a lot of sense, you can't look after others if you don't look after yourself.

It's a shame you can't go Zoo. Next time you should go and give DD2 the option to join you or not. It's not fair on you or your other DC that you miss out. I think you've done the right thing with meals, 3 sittings isn't sustainable. The rest of you have needs too and DD2 can not continue to dominate you at the expense of yourself and others. You can't please everyone all the time, do what you think is right and ignore the fall out. With DS1 I find if you let it the MH condition takes and takes.

Much less stressful for all and safer with only one GA. DS1 has had a brilliant day. DH took the boys kayaking, previously the leader has given DS1 1:1 and they kindly did the same this time. He had also voluntarily been in the paddling pool, he didn't want to go in to the garden but once outside got in of his own accord.

The medical needs tuition never happened because school never got round to organising it. She finished year 11 the weeks the first lockdown was announced.
She's in art college now and they are supportive but her executive function is not good but she won't accept help with planning to meet deadlines etc.
I meet a lot of neurodiverse students through my work and used to deliver training to TAs about working with students with autism and other SPLD. I'm adamant she is on the spectrum and is high functioning.
Camhs have been useless so she sees a private counsellor that my dad pays for. She had some issues with drugs last summer and Forward Leeds did some sessions with her. They seemed to work tho I know she still uses weed from time to time.
I see my own counsellor that the college I work for organised and he's brilliant, and my partner and most of my friends are a fantastic support.
I'm awaiting a diagnosis for probable fibromyalgia for myself and don't sleep well due to restless legs, general menopause crap and my own anxiety around her.
My family struggle to support me, a couple of them are great, but the rest really don't understand mental health or anxiety.
I will look at the websites about PIP, thank you, I just think she'll struggle to ever work full time.

I have no idea why she took either overdose, I've kind of got to a stage where I've accept I will never know, but as long as she is discussion it with the counsellor, then she is getting support. Both times she has said she regretted it, but she was in resus after the one a couple of weeks ago, I don't think she understands how serious it could have been.

DS comes for tea once a week, his dad doesn't live far away. We actually get on better since he moved out, I think she caused a lot of stress on my relationship with him. He is going to uni in September and I've been helping him sort the finance, halls of residence and buying bits and pieces he'll need. My relationship with him is in a much better place that it was six months ago.

She's drunk, she's high, she's manic, I've phoned 999, she needs more than I can give her right now.

Milly I'm glad D's ratio shop is improving
Thinking of you right now,what a difficult evening

*relationship damn auto correct

Welcome Tee and Millymoo

Sorry you have had tough weeks Zoo and 1jump

Dd has been diagnosed with ARFID by the EDC. No surprise but leads to another load of appointments. His anxiety at the moment. Letter through from child services yesterday requesting EHCP OT assessment in July. Not sure whats going on as I haven't submitted appeal yet. Only thing I can think is school went back and said we would be appealing but I am not sure.

Everyone here is very stressed right now. Trying to diffuse but it's difficult.

Anneremind me,do you have other DC?
Have you got any half term plans(that can reduce/add to stress?)

Think we are just going to try and do a local pretty few walks if weather's as nice as forecast.we are very lucky to have a natural designated area on our doorstep(literally 5minute walk) a number of green spaces/parks and a disused railway line that is now a pathway that swathes through beautiful countryside by a river,and a managed for tree forest that's open to public for walking.i don't drive so all DC are used walking.more difficult to engage co operation to walk now older teens but I've found the wi fi,or lack of access to it, to be an excellent tool for compromises when they've been hiding in rooms with curtains closed and not a chunk of daylight!

Zoo hope DS and DD3 enjoyed their day out and you got some time to recharge.

Anne don't be fooled in to not submitting the appeal because the LA undertakes further assessments. Some LAs try this or offer a further review in a term, conveniently taking you past the SENDIST deadline. Let them assess but still appeal.

Milly how is DD today? PIP isn't about whether you work or not, that would be the limited capacity for work element of universal credit. It was the LA who were responsible for medical needs tuition, not the school. You could have forced the LA to provide it via Judicial Review. Have you had a carer's assessment? Weed will not be helping DD's MH, will she engage with further support to stop?

Hello, I'm so glad I have found this post (although sorry to everyone going through the heartbreak of trying to help and support an anxious child).

My DS 7 has been struggling with anxiety on and off since about 4 but it has recently got much worse.

His mains issues are around food; being sick and the thought of dying from not eating.

I am finding so hard to help him and have had to give up all hopes (at the minute) of him eating anything remotely healthy and just let him eat what he fancies; which is beige food (fish finger, nuggets, potato waffles).

He is really struggling to eat at school and only picks at his packed lunch.

I am finding all this a complete mind field and I know that if I express even remote concern it makes him worse, so I am trying very hard to remain calm when it comes to eating

She's ok today, quiet but she's been to work.

She has had support for weed before from forward Leeds and I'm going to get back in touch with them.

I haven't had a carers assessment, I'm going to look into it all tomorrow after I've phoned mindmate spa to reinstate the camhs process.

indecisive welcome.we have had another scared of vomiting here previous

So if I want my daughter to apply for PIP and she won't, can I become her advocate? How would I go about doing that?

Welcome Indecisive. Does DS have any other sensory issues - clothes, noise, light, pain hypo/hypersensitive, temperature, movement? Does DS cope brushing his teeth? Would eating in a quiet room at school help, either alone or with a friend?

We use the magic plate with DS'. We plate up their food, no discussions/bargaining/negotiations, ignore moaning and negative feeding behaviours, praise positive behaviour and discuss something unrelated. DS' eat, or not, but have to remain at the table. Plates are removed after 30 mins for meals/20 mins for snacks.

Similar to Zoo's approach, some have success serving new items on separate plates. Chaining works for others. If DS will eat fish fingers it could be something like chunky fish finger - breaded fish fillet - small amount of plain haddock - small amount of plain cod... or cod bites - salmon fish finger - lemon sole goujon - fish cakes...

Milly be aware some CAMHS teams don't allow you to mix private care with their care. If a person lacks the ability to manage their own affairs someone can become their appointee. You apply by starting a claim and asking to become appointee. Becoming appointee involved a home visit, but DWP swapped to a phone call during Covid. However, if DD has the capacity to manage her own affairs and does not wish to claim you can not make her apply.

Thank you for the replies.

DS has been a some what picky eater since about 3 years old (nothing happened that I can recall to change his eating habits).

The school are on board and he can eat in a quiet classroom or the dining room whatever he chooses. He has also been told he can snack whenever he wants.

Th only thing to have really worked for us so far is me saying "I'm not worried so you don't have to be".

I like the idea of modelling new foods and sometimes he is interested in what we eat (DH and I eat later in the evening) and will sniff or sometimes try a bit.

He is fine brushing his teeth, no other real sensory issues although he has started to chew on his sleeve a lot (which is driving me mad as he keeps making holes in one arm).

Does DS have a sensory chew toy? You can get a variety of types - pencil toppers, bracelet, necklace.

Any possibility of you eating together at least some nights?

Yes good idea about a chew toy.

We did used to eat together as a family around 3 times a week but it seems the pressure to eat was much worse for DS so I stopped. He eats with his big sister abs we eat about 2 hours later now.

Maybe I should try to slowly introduce a family dinner time but keep it very relaxed!

Hi all
1jump just saw our OT who confirmed they had not contacted by LA for an assessment. Imagine my surprise the other day when I got a letter requesting a LA EHCP OT assessment ! Looks like they made a decision without having all of the information they were meant to have, ie haven't followed their own process. My OT says the LA OT won't be allowed to perform the same tests she has done so it's all a bit of a dogs dinner. I will be following up next week.

Dd has put on 2kg this week. She has eaten lots of chocolate, popcorn and cereal but I think the ED team will be really pleased at follow up. This is the same amount she out on in the whole of last year!

So DD has apparently gone to the top of the camhs list, not quite sure what that means. Camhs worker and I kept missing each other all day on Friday, so will hopefully get hold of her on Monday. DD has managed work and finished her college work by deadline which is all positive, complete meltdown earlier tho because I'd moved some stuff in her room, long story, but had an hour of tears/strop/banging.

It's just draining. My one positive atm is that I feel she's safe at work, today I managed to sit in the garden and read, and whilst she's at work tomorrow my boyfriend and I are going on a proper "date", first since restrictions were lifted!

Wow, well done on the weight gain, Anne. Don't worry about what DD is eating, the focus is on weight gain. DS' have a diet others would consider horrendous. If DD was previously eating very few calories watch out for refeeding syndrome.

It's not unusual for LAs to not seek all the advice they legally must. You really have to keep them on track all the time - given an inch they will take a mile. No, assessments can't be repeated within certain timescales, it's the same with EPs. Otherwise the results are inaccurate as the child could learn/remember how to respond.

The onus is on parents to provide the LA with private reports when the LA seek their views. The LA won't approach the OT, if OT advice is requested they will seek their own less detailed, specific and quantified assessment. LAs must take in to account all assessments/reports, but in reality reports sought independently by parents are 'considered' and ignored.

Thanks 1jump. The LA didn't come to us to ask our views other than a call with the EP. I had assumed we would have been asked to fill in a form or something but nothing.

Anne the LA should have sought your views. However, they will probably argue they did via the EP and your paperwork from the EHCNA request. Don't worry though SENDIST will consider independent reports. You may need other private assessments for appeal.

Makes sense. Thanks 1jump

I will be talking to school this week and making decision about the appeal and whether to go via solicitor. I also need to contact the council OT and let them know about private OT due to potential report conflicts.

I have ED appointments this week too. It feels relentless.

Hi all, how is everyone feeling about back to school tomorrow? DD has already had a huge meltdown.
Her school seem to be pushing for a full timetable rather than the reduced one we agreed to, I suppose this is because they cant really offer part time timetables, especially longer term but this isnt helping DDs anxiety, it is too big of a jump and she cant run before she can walk,
Ive been chasing ECHP, but have been told they have referred to EP and cant do anything until they have their report, but no idea when appointment will be, the 20 weeks is up on 21/06/21.
I dont think they are looking at other specialists so I have asked if she can also be assessed by SALT, due to communication difficulties and OT due to sensory sensitivities, fingers crossed they will agree to it but not hopeful, everything seems to be a battle.
I have an appointment with iask Tuesday eve as well as family cahms tuesday morning and a parent support group monday- as everyone says it does just feel relentless so bloody hard juggling everything, Im back to work tomorrow too, was so nice having less stress during half term!
Good luck Anne with all your appointments, it feels relentless because it bloody well is! but weight gain is fantastic news. Are you appealing ECHP? I lose track, I am hoping I will not be in that position soon
I hope you enjoyed your date Millie:)

You are both right about how relentless it is.

Good luck with your appointments Anne.

Runner complain. Inform the LA they are breach of the statutory timescales and if they do not move quickly to complete the EHCP process you begin Judicial Review proceedings. Tomorrow is week 18, you should have had any assessment, received the draft and schools consulted. Don't allow them to get away with it, if they get away with one thing they will take liberties with other things - especially your LA!

In order for the LA to comply with the 20 weeks deadline they must send a draft by week 14. If they are t going to issue they must send the refusal by week 16. Anyone approached for information must respond within 6 weeks. If the LA EP could not assess within the timescale the LA must commission an independent EP. The LA must seek advice from anyone you reasonably request. Remind the LA of all their legal obligations.

Part time timescales are illegal but can happen short term for reintegration purposes, so it doesn't have to be one big jump.

Be careful with SENDIAS, some are brilliant, but not all and they receive LA funding so will ultimately toe the party line. IPSEA and SOSSEN are better.

Good luck tomorrow.

DS3 was a bit jittery at bedtime about going back to school, but not too bad.