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

one-step I'd take the day as a huge win if you all survived suit shopping.you cannot visit m+s and not buy Percy pigs in my house;
Autumn big hand hold here
From my experience with camhs we had an initial assessment on site.we had been sent questions like what are your concerns,how does your child cope with basic everyday situations.how does it affect life etc
We then chatted through our answers and she saw how distressed D's was getting
We received a letter accepting referral.ds was getting worse by the day coping with school and we were very worried so I rang them at that point and a member of the team offered do phone checks weekly til someone became available to work with us.it was decided he would see occupational therapist and we had to wait 6weeks for an available space.good luck with it all

DS had hospital app for checks part EHCP
Went ok,other than running hour late,and he freaked at blood pressure check and subsequently had ridiculous high reading they couldn't record and refused try again!!
Outcome- he doesn't gain weight easily so she wants him tested for celiac(sp?).again freaked at idea needles,so she's writing to gp to organise both cream and numbing spray

Sorry to hear DD2 is struggling, Zoo. It's good to hear the school are being proactive. I know you have previously mentioned she has a lot of ASD traits, do you think she would benefit from a referral for assessment before she reaches crisis point?

DS did well considering everything. I know it's difficult for you to see DS stressed, but it is a blessing in disguise that the paed saw his distress. Her report should confirm how he was and that will help the EHCP. Some people find just using the numbing spray is better, and that Emla cream builds the anxiety too much while waiting for it to take effect. Hopefully the coeliac screening is negative. How are you getting on with other assessments for the needs assessment?

It's been a busy few days here - 3 appointments, a meeting, and a visit to A&E via ambulance courtesy of DS3 who cut his head and needed it gluing. He didn't need an ambulance, but it bled a lot (as head wounds do) and school panicked because of a long term medical condition he has. DS1 tried to run off today when anxious at school drop, something he doesn't normally do. Luckily the HT caught him before he got far.

one-step goodness me,that sounds like a crazy few days!
I think it will come to assessment for dd2.shes always been quite I'm ok I can manage,but start realise she's finding hold up her mask zoo hard now,that it might be time accept some extra help support as she's unhappy feeling so desperately stressed all the time

Zoo, I hope the knowledge that DD2 has the time out card should she need it reduces her anxiety. If you are going to ask for a referral for assessment, sooner rather than later would be better. With waiting lists you don't want to risk falling between the gaps during transition to adult services. You could bring it up at your next TAF.

A quieter day today, thankfully, though I have eaten way too much . I'm taking DS1 shoe shopping tomorrow morning, so I'm telling myself it's an early reward.

one-step we have our first meeting with caseworker tomorrow for EHCP
anything I need to ask/be aware of?
Next TAF is 11th dec

Long post warning. Good luck. If you fancy some bedtime reading, it might be useful to read the SENCOP.

What week are you in?

How the initial 'fact finding' stage is carried out differs slightly from LA to LA, some seem more organised than others. Some seem to do it all in one meeting, others prefer giving you/other professionals involved paperwork. They will ask lots of questions.

1. If you haven't already you need to ask for any assessments you think DS needs. Follow this up in writing. At the least I would say you need CAMHS, EP, SALT, OT, social care. I can't remember if DS is year 8 or 9, but if Y9 they should also consult whatever service you have locally for future planning.

Couple of points about no.1:

• The LA has to seek any assessments you reasonably ask for. All the ones I listed above would be considered reasonable for DS, others may also be depending on how he is.
• Anyone asked for advice should respond within 6 weeks. Not having someone available to assess is not a good enough reason for not sticking to the time limits.
• "Not known to the service" is not a legal response.

1. They will want to go over DS' needs.

• Some people find it helpful to have a timeline of events - so X happened on A, by Y DS could only manage B, due to DS' MH he has been too unwell for school since C...
• Some find it helpful to have a list of diagnoses and difficulties, any professionals DS sees/has seen.
• They will want to know what works and what doesn't.
• What support DS already has or what you have tried but it didn't work.
• They will want to know where he is up to academically. What subjects he enjoys/doesn't.
• What his relationships and friendships are like.
• They will want to know what his strengths are.

1. They will want to know what his plans for the future are, from his and your perspective. So, you have said previously you think he needs a SS. What about longer term?

1. They will ask about home life, family etc. They'll want a life history and educational history e.g. primary and what he was like.

1. At some point they will want to know DS' views, but maybe not fully tomorrow.

• What DS likes/dislikes, strengths/weaknesses, aspirations, hobbies etc.

1. Get their email address.

1. Make notes and afterwards set out what was discussed in an email to the LA.

Hey Zoo how did the EHCP meeting go? And 1 step, have things calmed down at all?

We have had a stressful/interesting/awful/breakthrough couple of days.

To cut a long story short, DD had an absolute meltdown last night. I was trying to talk to her, she wouldn't answer and I pushed her (gently) as I was sure there was something she wasn't telling me. She hasn't been getting on with DH recently (her dad), and she just laid it all out. She hates him, he makes her feel like shit, he is always angry/negative. She doesn't think he loves her etc etc. DH did hear most of this cos she was really screaming it. He has now admitted to feeling depressed, and asked me if it would be better if he left, as least for a while.

Anyway DD had her last session with her CAMHS therapist today, and the therapist has given us the date for our first family therapy session, in January.

Thing is, Things haven't been great between DH and me for a long time, but I hadn't realise quite how bad they were for DD. My head is all over the place. Do I wait for the therapy, or ask him to leave? Will he get his act together, or am I living with false hope? I am scared of being a single parent in some ways, but other ways I would welcome it.

DD has been much better today than I've seen her in a while. I think opening up to me has been cathartic. She stays she slept better last night than she has in ages, and she opened up more in her therapy session than she has done before . Shame it was the last session!

Anyway, lots of thinking to do....

Amiable Oooh that's a tough call.only you can decide if things are worth saving.good she let rip and let it all out

Zoo, I'm glad the LA meeting and HOE went well. The tutor sounds brilliant, building trust is so important. If it goes to panel on the 12th you are further on than I thought. If the LA are not going to issue an EHCP they should inform you by week 16. If they are going to they should send you a draft by week 14. Once you have a draft you will have 15 days to reply.

You need more than just EP assessment. This is really, really important. Otherwise provision isn't going to be specific and quantified, and therefore the EHCP won't be worth the paper it's written on.

Do you have an idea of what school you would like named on the EHCP?

Amiable, that's difficult. You don't have to answer but is what DD says true? Or is it a case of DD taking it out on DH? Would she really be better if he wasn't there, or would she turn to someone else to take her frustration out on? Is he really angry all the time, or is it just how she perceives it? Was the meltdown last night really about today's CAMHS appt?

Have you had social care assessments? Carer's assessment for you/DH and an assessment by the disabled children's team for DD.

Never. Ever. Again.

We didn't go shoe shopping today. DS1 had had a meltdown before we dropped DS2&3 at school. He has been really stressed all day, and I'm not sure why.

one-step OT has done a report.appatently school barely sent anything(can't really as not seen him)
I wasn't aware we should start looking?

The provision in the EHCP will be taken from the assessment reports. So, the better the assessments now the less likely you are to need to go to tribunal over content, and therefore the less likely you are to need to get your own independent assessments done. If the assessment stage is rubbish the provision is likely to be too.

Is the OT assessment a proper full OT assessment assessing his gross and fine motor skills (children with ASD often have difficulties with their motor skills) and including sensory needs? If so, then you also need a CAMHS report to ensure the EHCP has therapeutic psychological provision.

If the OT assessment is a CAMHS report done by their OT then you need a full OT assessment.

As ASD is a social communication disorder a SALT assessment should be carried out.

A social care assessment and if Y9 a careers/planning for the future report should be done. And you will have the paed report too.

You only get 15 days once you have the draft to reply, including naming a school, so it's helpful to have an idea beforehand.

Another night of playing musical beds. We have a king size bed, but some nights it feels like there still isn't enough room.

Fun night here to
"D"p roared off in car 1 am and text me he can't do this anymore.happened before but this time I'm too tired /stressed to pander to him so I've let rip with few home truths(not bothering with the girls etc) course it's all my fault because of X,y,z he hangs on to(not doing enough "fun" outings,cept they not fun they stress trips from hell as he try tick of a list what he thinks we should be doing) I swear more I learn add he has it tooanyways fa out today is fun.ds is join my hip ask repeatedly what daddy left without saying bye and when's coming back.dd2 angry and I'm nearest vent.youngest acting indifferent but I know it's will bite her at some point and I will be on receiving end that too.the joys!!

Xmas gift shopping with them all with dd1 today.on plus dd1 great at positivity so hopefully she help me lift the mood,bring in some Xmas cheer and we can help youngest and D's navigate their first Xmas gift shops as a "fun" experience

I hope shopping went OK, Zoo. Sorry to hear 'D'P is causing you, and DC, so much stress. How are things today?

DS1 is not happy! We made him go out when DH took DS2&3 to their sports club this morning which DS1 didn't like, but I needed to make notes for a meeting this week and nip to the shop which he would have liked even less.

Life lesson #2 began yesterday evening. DS2 was still hungry after dinner so we made a cheese, ham and tomato toastie. Let's just say we need to practice buttering bread if we don't want holes in it .

Ah,holey bread and butter...D's has that "skill" tooone-step

I'm so soooo proud of him.we left home at 1130.did around 12-14 shops in town,then (a quiet) wholefoods shop.poor lamb was fraying around edges after about 8shops,and refuse rotate shop partners opt stick rigid at my side.he got a few bath bombs in lush andwas tickled my a mini supermarket trolley in the works so he bought that for dd2 desk.was lovely to see him choosing.yea,it's what he loves but he then decides who he thinks will appreciate it most,so the thought is still there in a jumbled way!!
We sat in dd1 car for final shoe shop
I then left all kids home and did Aldi/Morrison's with dd1.got home at 6!!

Wash machine officially pack up,so need get that sorted tom.damn things been pkay up all week but finally stop drain properly/filter alarm bleep and halt wash friday.cleaned filters and pipes but it's refuse empty.gah.always something throwing spanners in the works!!

Watched film with D's and lil zoo today as dd2 had sleep over last night and trip dress shop for a party with friend.shes not back yet.they argued so much over what to watch I picked pitch perfect,which D's grumbled about because too much music in it
He did watch to end with us though!!
Dd1 has collected school uniforms to emergency wash and return later thankfully
Grateful for the little things today!
Hope everyone's had a good weekend!

That's brilliant, Zoo. DS wouldn't have been able to do that previously. Appliances always pick inconvenient times to breakdown. Hope you can get your washing machine fixed soon.

We have proper butter normally (except DS1 who is allergic to milk), but I'm wondering whether to get some spreadable butter to practice with.

DS1 did amazingly with the tutor this morning. They worked through a some junior maths challenge questions which DS quite enjoyed. Unfortunately, it didn't last long because DS1 refused lunch because his sandwich wasn't cut in the right way . It was cut in half the same way it always is!

We have vitaliteone-step as youngest can't have milk products.he can still year holes in bread
Ed psych rang to book assessment next week
School did safeguarding visit.here all if 3.5 minutes.i ask you,what's the point??
Wash machine being looked at on Wednesday
We have welbeing tom morning,orthodontist for dd2 then tutor pm for first session.hes quite uptight about all the faces In our home and lots changes after a slow pace for a very long time..

Aaaaand had phone call offering ADOS next Saturday!they have 3saturday sessions before Xmas,and if we don't take the opportunity we will rank up the wait list here as others do,but it could still be next year we get it.they have targets set of start to finish asd assessment in 12 months now(which will be in the summer)
Only downside not in our town,but another at a hospital within our county.would need a lift.i may see if dd1 can do it as she's ultra reliable without all the dramas!

Safeguarding visit is so they can eyeball DS. He's still on their roll, and if anything were to happen to him they would be scrutinised during the investigation. It's to reduce the chances of children falling through the net, which sometimes has devastating consequences. It's to protect DS and them.

DS1 has Pure, but I'm going to get some ordinary spreadable butter for DS2&3 to practice with. Hopefully they'll find it easier and we can then build on success.

Good luck with the tutor. Brilliant news about the ADOS, that wasn't a long wait. I would bite their hand off.

one-step we tried pure and found it tasteless! I rang and all 7th Dec places for ADOS are gone,but we have first app on 14th Dec(9am) which dd1 can get us there

Wellbeing this morning was great.he did 20 minutes latch hook kit then 25 mins Xmas cardmaking with a lady called anne.shes older,patient,funny and really really nice.he likes her a lot so I got to wander and talk other people whilst they got on with it!

Just been orthodontist dd2.her braces are finally coming off on Thursday(cancellations mean we can do it before Xmas as her mock GCSE start week after) she's so happy.she had meeting with head of year tomorrow to review how she's doing

That's probably why DS1 likes it, he isn't a fan of food.

Your DS is doing brilliantly at the moment. It's really good that there is someone at Church who is so supportive of DS and you. I hope the tutor has gone well too.

I bet DD2 can't wait to get her braces off.

Tutor was FANTASTIC!!!she came armed few maths games and dobble.ds didn't want to play,so she asked him about his giant tarantula he has in a glass case(dead)he got it out,then went and found some others from the set and was explaining things to her about them.she asked lots questions so he kept throwing facts at her/kept him talking which was brilliant.she originally said 15 mins.she noticed at 20 minutes and said shall I go or stay bit longer?he said enough and she happily pack up her stuff!she's coming again Thursday,straight on back of his O.T app so could be more stressful..

Hi everyone
Sounds like things going great zoo.

Sorry have been AWOL. Dd got hit at school last week. Sounds like it was probably an accident but there is history with the other person and it is being investigated. Cue lots more anxiety and stress. And fury on my part. I am very tired.

She has managed food tech this week though. She cooked at home at the weekend and then was just a helper in class but that seemed to work well.

Meeting with teacher today to talk about fact she hasnt done PE since last sept. Laid out all issues. They are thinking of inviting her for 121 dance session at lunch time to see if she can remember that fitness can be fun and not scary. No pressure, anyone else around or need to get changed. Will see if she goes for it.
The idea being they start with dance then maybe add some games or suggest badminton eventually, much later. It's a nice strategy.

She is so stress and highly anxious though. Therapy sessions start mid Dec and it cant come soon enough.

I called Scope: Navigate as they offer advice for newly diagnosed families. I have no idea if it will help.

Anne my girls attend an all girl's school and pe is much better- dance,they have a gym(rowing machines etc),badminton,volleyball,trampolining.some sports still not keen on(netball/hockey) but often done as part of set choices.so much better for encouraging physical activity!!
I hope things resolve with the hitting.well done on cooking at home,and helping in class.both great steps forward
I hope if you are tired and stressed there's at least a few minutes time carved for yourself

Finally the school seem to be listening and acting Anne. Being a helper in food tech is a good compromise, one that DD did well to manage. 1:1 dance sounds like a perfect reintroduction to exercise as well. I'm sorry to hear DD got hit. It's positive that it isn't being swept under the carpet though.

Hurray, Zoo. Building on today will be easier. The tutor won't be someone unknown, DS will know she will stick to her word and she will know the way to go with DS - there is lots that can be built on his collection - science, geography, history, art, English. DS's tutor used Lego to build DS' trust.

I could crawl into bed already.