Got to get my act together to help Dd ... Help please ...

[frazzledbutcalm]

I've posted about Dd before, many of you will recognise/remember. Briefly, Dd is 12 in year 8 and has a dx of Asd. We're still not much further forward with school - Dd doesn't like it, never has. She has no statement/EHCP. We have a meeting with school tomorrow and a fantastic Asd worker is going to be there also to help/advise. I need to do my upmost now to help dd, I feel like I've not been proactive enough for too long now. Things have to change now for her. School are very good but don't know what to do for her as she masks completely.

Dd missed 1 day last week due to anxiety/upset/tears. But she doesn't like any day/time at all at school. I feel every day like I'm sending a lamb to the slaughter house I've talked to dd tonight to try to get some ideas. I went through the Aldo Goes to Primary book someone posted on here to see if dd could identify with any of it. She's said (in far few words than this) that as soon as she wakes up she feels sad/upset about going to school. While driving there she feels the same, when walking through the cut with me she still feels this way, when walking down her school path she still feels this way. All through the school day the feeling doesn't change. She feels better when she comes out of school but then the feelings come back at bedtime because she knows it's the same again the next day.

Realistically, what can school do? How do I work out what dd needs? In my heart I just think school is never ever going to work for her. She's very academic but just so unhappy and stressed/angry all the time.

Ineed - dx was nhs. That's exactly our problem - we're second guessing her difficulties as no formal professional assessment has been carried out. We've seen ian jordan who dx spd. Nhs in our area DON'T CARRY OUT ANY SPD ASSESSMENT! They talk about sensory issues but that's not SPD
Care co-ordinator is supposed to liase all services available to dd and get her the correct help she needs/correct pathway. Our cc is not very good. And she's our second! We kicked the first one out due to her attitude with dd.

Polter - That's my view also, the professionals should engage with dd.

I have yet another meeting at school next week with senco and dd care co-ordinator. So, my view is to say I'd like dd to been seen by SALT, OT and EP. Will this be reasonable? She's transferring to high school next year, I want some concrete structure in place by then.

Dd has hypermobility, but I wonder if it could be dyspraxia or part of her SPD?

Thanks polter

The high school she'll transfer to (if things go ok in the meantime), is part of a partnership of schools - 2 middle schools and 1 high school. They share the same executive headteacher (although each school has it's own head teacher) and the senco works between the 3 schools. So there'll be no change in senco for dd, and it also means there will be no disruption in her support.

So are the SALT, OT and EP all I need to ask for now?

We did go private for an EP assessment purely because we knew there was something going on with Dd3 but we couldnt get to the bottom of it! It turns out she has some quite severe difficulties with writing, reading speed and spelling!

I would only recommend it if your school is likely to take it on board though! If not you are wasting your money and it will cause frustration!

I would suggest asking the senco if she/he thinks it would be useful!

I had to push hard for a sensory assessment and even then I did most of the work by printing off the checklist! They then advised and diagnosed with sensory processing dysfunction!! Why not disorder who knows!

Keep going, you still have time to sort this out before secondary

Thanks again polter and ineed

I'd definitely get a private assessment if I had to, I wouldn't think twice. School really are great, they just don't know how best to support because dd masks and is almost selective mute. Senco asked the asd worker how common selective mutism is as she's never encountered it before. They're desperate to help dd feel happy and secure!

I was discussing anxiety around speaking with a SALT yesterday! I think your Dd needs to build a trusting relationship with one or two people at school. These people need to begin by talking about things which interest your Dd and then gradually expand the range of conversations they can have with her.

My aim for Dd3 is for her to be able to ask a familiar adult other than me for something which will help her to meet her own needs eg a drink !
We have 2 yrs before she is going to try to go back into education and we need to be at this point before she does.

One of the reasons Dd3 couldnt cope at school was that she didnt have a single adult that she could trust or rely on to know when she needed help. At home that has always been me and now I need to be the person to gently push her to trust others.

To be fair to school it wasnt just them! When Dp and I escaped for a night in the spring last yr and left Dd3 with Dd1 she was texting me from Dd1's house to ask me what she was having for dinner! That was when I realised we had a biiiig problem!

Dd just doesn't/can't talk to others Ineed. Her LSA talks to her about her own dd (nothing personal obviously) to try to break the ice, help dd relate to her, starting point etc. I could honestly say even I struggle to find things that interest dd! Like your dd, mine can't approach an adult to ask for help/drink/feeling poorly etc. I'm not even sure it's a trust thing - a confidence issue maybe? I also think she goes into 'school mode' (selective mute) as a coping mechanism, which prevents her talking.

Yes I totally get what you mean by "school mode" Dd3 was exactly the same, she also carried it into most group situations. Especially where there are other school children present.

I have no clue how to solve it, I am now taking the lead and prompting other adults to try to engage with her which she is beginning to do when I am there! Baby steps!

Do they run a social communication group at the school? Dd3 was talking in the one she attended, she wasnt transferring the skills out of the group but that went on her statement so it may have improved with support over time!

No social communication group. It's a small middle school (4 year groups, 3 or 4 classes in each year group).

I'm going to go to the meeting on Thursday and say I want to go back to basics - All we know for sure is dd has autism - I want assessments by EP, OT and SALT. Fingers crossed they listen to me!

I am sure the school is big enough to justify a social communication group! There cant just be your Dd who would benefit!

Anyway it doesnt matter, what matters is that they are listening to you and that they can move things forward!

Good luck

Ha ha, cross posted polter

Actually I was thinking of it as a way for frazzled's Dd to build a bond with one or two members of staff!

She wouldnt probably transfer the skills but at least she might have one place in school where she could speak!

I can't imagine dd speaking in a social skills group - however, thinking about it further, if it was directed in the right way, direct questions asked etc then she may actually speak out. I think like you say Ineed, she wouldn't speak outside this group/room, but it would be a start for her.

The Senco has already observed and rightly stated that when dd speaks/answers in class, it's not because she wants to, it's because she feels she has to - a teacher has spoken, it's good/rules etc to answer.

Yes thats exactly like Dd3! She could answer questions directly but couldnt expand or offer ideas!

I do think that if we had left her in school that with some decent support as specified in her statement that is one of the things that we may have had success with!

There were just so many things that I couldnt see working sadly!

Well dd came out of Music again today to work with her LSA. Again, has come out of school so much happier! Tomorrow (her worst day), she's been told her LSA is taking her out of RE for most of the lesson and they're going to do some art together for the school play. Dd is VERY happy at missing this lesson. So I'll definitely report this to school on Thursday at the meeting so they can understand what a difference this makes.

Her LSA was chatting to her today asking what kind of things dd likes etc as she's looking for ideas for her Christmas present ... is this normal practise?? I thought it would be nice for us to buy the senco and LSA a little something to show our appreciation as they are trying hard with dd .. but I certainly didn't expect LSA to be buying dd something! Has dd got this wrong I wonder?

Lastly, a new boy started in dd's class today. He went all though primary with dd and also did yr7 in dd's previous secondary. He's a lovely, lovely boy, but has some kind of learning difficulty. He's always been very behind his peers and it seems is now finally getting the support he needs. Dd told me her LSA is now in ALL of her lessons because of this boy. So how does support work in these instances? Dd has the highest level top up funding which gives her (apparently) 15 hours support. From what dd says, this boy gets full 1:1. So from what I understand the same LSA supports multiple pupils .. is that correct? What happens in a lesson if dd needs to go out but the boy is ok to stay in the lesson?

Hmm, this is the problem when support isnt specific and legally set out in an EHPC/Statement, the school are perfectly within their rights to juggle and move support around to eek the most out or each LSA!

If the boy has full time 1:1 on his EHCP/Statement then him sharing an LSA is not legal but lots of authorities avoid specifiying how the support will be provided making it very easy for schools to do their own thing!

It is very frustrating when you are told that your child should be getting 15 hrs support and you know very well that that is either not happening or is in jeopardy!

I think you need to ask on Thursday whether your Dd is now sharing the LSA with the other boy!

Apart from that it sounds great! It is slightly odd that the LSA is talking about buying your Dd a present but so long as its not massive it wont be a problem in fact its very sweet and it sounds like she is trying really hard to bond with your Dd

So, Tuesday, dd wasn't taken out of RE as planned so the day was the usual horrible day for her. PE, RE and ICT. Dd has the option not to do PE, she has recently been joining in (I'm surprised), but she told me yesterday she joins in because on the days she doesn't join in, the teacher keeps asking her why. So she's not participating because she wants to, it's to avoid having to talk/answer the teacher. RE and ICT, we still don't really know what her problems are with these lessons.

I emailed asking why she wasn't taken out of RE as planned, today the Senco told me it was because the new boy was unsettled so dd's LSA stayed in the lesson to keep an eye on him. She did keep checking on dd, asking her if she was ok etc. I feel a bit annoyed that dd's plans were changed for the sake of someone else. But having said that, the boy is such a lovely nature, and I understand he needs time and help to settle in.

From the meeting today, I've been told an OT assessment won't be helpful as (here) it's used as part of the pre ASD assessment process - it identifies areas of difficulty which might indicate ASD. So as dd already has a dx then the OT assessment will only tell us what we already know. Hope that makes sense. SALT is a possibility (although they've never known it be used for dd's age and reason), dd's care worker is going to look into it and find out who to see/fund etc. In the meantime, cw is going to contact her team to get someone to work with dd along the lines of communication/emotions/poss CBT. I mentioned EP early on, but it got cast to one side while we all discussed OT/SALT and such like. Also, I asked about dd being looked at for her hypermobility, ruling out dyspraxia, co-ordination problems etc ... to give her something 'official' to show what difficulties lie because of these conditions. Cw is going to contact the OT physio to arrange an overall assessment of dd.

Senco talked about the transition to high school next year, how dd will need extra visits/support, smaller group visits, she has a LSA in mind that she thinks will suit dd, and said November is the earliest she's ever had to start thinking about transition

OT can be used as part of the ASD assessment but it could still be useful especially as you have concerns about her co-ordination and possible hypermobility.

A SALT assessment is a definite because no one [except you] really has a clue about her communication skills.

The senco is right to start transistion early, we started Dd3's in the november before she started too!

Sounds like an ok week apart from a couple of things. What has her general mood been like and do you feel like she has coped!

She's definitely hypermobile Ineed, I'm not sure if there's also dyspraxia there or not. It sounds like her care co-ordinator is going to arrange an OT physio assessment which should show exactly what's going on.

Her general mood and how she's coped is a very grey area. She goes to school without tears. She gets through her days, she's very quiet at school. She comes home almost every night and is angry/growly/stroppy/grumpy to begin with. She usually settles down at some point after tea. Goes to bed and says she doesn't want to go to school, school is stupid. Some evenings she's just constant grumpy. So while she's not weeping and wailing, she's certainly not happy and carefree.

Its so hard isnt it! I used to feel that Dd3 was unhappy so much of the time that it became unbearable!

She was such a happy little person before she went to school and we would get glimpses of the real her in the holidays.

We reached crisis point in the summer and knew that we couldnt continue. I wouldnt change my decision now but then we didnt have a supportive school so it would have meant a change of school even if we had continued ahd there just wasnt anywhere.

I am sorry you are stuck in this situation and hope that things improve soon.