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

(53 Posts)
frazzledbutcalm Sun 08-Nov-15 20:42:03

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 sad 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. sad sad sad

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.

PolterGoose Sun 08-Nov-15 20:54:28

Message withdrawn at poster's request.

frazzledbutcalm Sun 08-Nov-15 21:12:21

Thanks for the link polter ... I actually read the thread when I saw it yesterday. I've thought from 4 years old that school was not right for Dd. I hoped we could get there now we have support from her lovely new school.

School are really very lovely and want to help dd. They (fully understandably) don't know how best to help her because of her masking. They put measures in place for her and I have direct contact with the Senco by email. They answer all calls and messages, will meet with me whenever I ask - they really are very good. I really hoped that with the right support in place, Dd would be able to get to a point where she could manage school. I just don't think that can/will happen. I've always said Dd's problems with school aren't anything specific - it's the whole environment/social aspect. Dd would be very happy if she didn't have to socialise with any other child or situation.

I don't really feel I can HE, I don't have the confidence, how would I get it right? I've briefly looked at InterHigh before and was very excited to find them! But, I'd hoped to get the LA to fund it, but I've been told on here that they don't. I might post on the HE board also to get some first hand knowledge from those that use InterHigh.

If I HE Dd, I'd also have to HE Ds. I'm just not sure I can.

Ineedmorepatience Sun 08-Nov-15 21:21:29

As you know we are currently home edding, however if you want to make school work and school are on board then why not go for it!

I always thought that what Dd3 needed was a really good TA who could actually get to know her and read the signs of anxiety even when she said she was "fine".

We know the anxiety was there because the EP spotted it within a few moments of being with Dd3 but the teachers never seemed able to!

We also had a list of things that staff could have done to make Dd3's life at school easier, eg. Written instructions, an adult to advocate for her, support in transitions, a safe place to escape to! She never got any of these things but I feel sure she would have struggled less if she had and she may still be there now!

FWIW you dont have to use the curriculum if you home ed! You can follow your childs interests and allow them to learn automonously! This is a scary thought but Dd3 has surprised us with her desire to learn.

Good luck what ever you decide flowers

frazzledbutcalm Sun 08-Nov-15 21:45:34

Ineed .. I admire you for HE! I'm pleased your dd is settling. But how do you decide what/how to teach her? I'm just sure I can't do it! Dd is very academic.

I'm hoping school can pull us through but I just don't think it will happen, not for their lack of trying though.

Dd has been seen by barely anyone! One thing on my list for tomorrow was an assessment by EP. Dd has a care co-ordinator who is as much use as a chocolate fireguard. I've had to fight for any assessments she's had. I think her main problem is the social side, she doesn't like anyone talking to her, asking her anything, at all. She has a TA for non structured lessons. Some of the other children ask dd why 'miss' talks to her and keeps asking her if she's ok. They ask why she doesn't join in PE. Dd has told me she's not bothered that the others notice she doesn't do PE or that she has a TA helping her, she's bothered because they talk to her - she doesn't want to talk back. This is why I think school will never be right for her.

PolterGoose Sun 08-Nov-15 21:54:43

Message withdrawn at poster's request.

zzzzz Mon 09-Nov-15 01:18:57

Why do you have to HE both children? We have used interhigh and if your did is academic, I would say they are excellent. You really won't need to do much beyond exercise and crafts yourselves.

Youarentkiddingme Mon 09-Nov-15 07:45:59

Good luck with meeting.

Does your DD have an early access pass? Would she find she can avoid the in between lesson chat and general masses of people milling around if she left class 5 minutes early?

bbkl Mon 09-Nov-15 09:00:58

Message withdrawn at poster's request.

Schrodingersmum Mon 09-Nov-15 10:12:10

This year 18 LEA's are funding places at Interhigh for students just like your DD

Knowledge is power, challenge them with this fact!

Our DD is funded at Interhigh due to her EHCP and the change is amazing, for us it has been the best decision for he we ever made

Incidentally we moved her there without an EHCP and the LEA offered to fund months before final plan was in place as we demonstrated her school place had failed

onlyoneboot Mon 09-Nov-15 10:45:28

frazzled my DD2 12 was similar in not liking anyone talking to her, ever. She is now homeschooled and we got funding from LEA for Wolsey Hall. It's less 'school-shaped' than Interhigh, which I think DD2 would have found difficult. I had to fight for the funding provision but not too hard as the school was supportive in finding what worked for her. DD1 is homeschooled too but DS goes to school very happily.

Ineedmorepatience Mon 09-Nov-15 10:48:28

Wow well done schro its great that autorities are supporting some children in this way!

We have not looked at interhigh, my main reason for this is Dd3's demand avoidance! I know it would be a battle to get her to do the work and for us I worry that it would turn home into school!

At the moment I am working from the early yrs model withDd3 as in I am the facililitator! I make suggestions or offerings of activities, if Dd3 choses to do them then we run with it and expand or adapt it as we go. We have done a mini project on wolves, quite alot of art and loads of out doory stuff including horse riding, forest school type group, day trips, bmx, walks in the park, lots of cooking.

At the moment we are still being very informal but I am trying to gradually build it up. A couple of weeks ago I was told about a maths program on android so mentioned it toDd3 and she has got quite into it. She has gone back to yr 4 because that is where she feels comfortable and it is also where she stopped making progress!

Anyway, for me the most important part is that she has started to ask questions again and take and interest in the world which had completely disappeared before she finished school.

I dont know if we will keep up academically with her peer group but I am not that fussed at the moment because she is bright and I know that if she isnt stressed she will be learning. It may not be the same learning but its still learning!

frazzledbutcalm Mon 09-Nov-15 12:04:32

zzz ... I'd have to HE ds also as he too has problems with school, although slightly less severe than dd. He too doesn't like school, has measures put in place for him, finds it stressful, and asks to be home schooled. So I couldn't do one without the other.

bb ... I remember your dd is similar to mine. It's so hard isn't it?

schrod ... That's good to know!

only ... That' great you have a working system in place - gives me hope!

Ineed ... That's good progress for your dd! Well done!

I'm not sure how I'd rate the meeting tbh. Both senco and asd worker (who also sits on the panel for EHCP) feel dd would not be given an EHCP. But said even if she was it wouldn't give her anything extra to what school provide now. They said we could still apply if we wanted, no harm in trying type of thing. They did say we'd need one if we wanted dd to attend a specialist school. Asd worker gave a few ideas but we all recognised how difficult any of this will be given that dd masks and is often almost selective mute. We've been told to try to focus on the positives (however small) and to work with dd on recognising her feelings/emotions. Also said to contact her care co-ordinator to arrange some CBT for dd - to help with communication/strategies with dealing with others (what to say/respond to them etc)

I now say to dd that if she feels she can't go to school due her feelings/stresses/anxieties then she doesn't have to go in that day. If she does go to school then we don't have to go straight in, if she needs extra time sitting in the car etc then that's fine also. Last night I wouldn't have thought dd would go in today - but she did. So I'm looking at that as a positive achievement. She knew she didn't have to go if she didn't want to.

Also, my thinking of InterHigh - If we take dd out and either school her through that or other means, will that solve anything long term? I'm thinking it will help her now, but in 2 years time, 5 years time, where will she be? She'll have to communicate/live/work at some point. Will I be making her worse by shielding her now?

I wish this wasn't all so complicated!

zzzzz Mon 09-Nov-15 12:08:11

Does she do anything outside school? I mean clubs/socialise?

As far as parental input and a full day's work is concerned Interhigh will more than cover that.

onlyoneboot Mon 09-Nov-15 12:29:48

I probably made our set up sound far more efficient than it is, I'm not 100% convinced by online schooling for my DDs, I'd like to be doing more of what Ineed describes but DD2 hates leaving the house and any kind of interaction outside of the family. For now the online study gives some structure for me to work around, we really are doing the bare bones, and leaving lots of time for drawing and trips for supermarket sushi. Whatever works and gets the laughter back.

She'll have to communicate/live/work at some point

I worry about this too and enjoyed this ted talk about resilience.

zzzzz Mon 09-Nov-15 12:36:29

the thing is she isn't really learning how to live/communicate at school is she? She's learning how to fail to live/communicate and how to live the misery of failing. That isn't the answer IMO. I HE my ds for 3 years and he grew into a happy bouncy still severely disabled but "open" to new ideas and experiences. He has now been happily in school for a term and a half and he loves it though I am not convinced he is learning anything
dd was only at Interhigh for half a year but absolutely loved it. It worked wonders for her self esteem and she is making shy but steady progress at secondary now.

I suppose what I am saying in a round about way is that HE doesn't have to be for ever or even for very long, but it is a very valid way of supporting a child from one way of being to another. For us Interhigh particularly ended up being SO much more than we were hoping for.

Ineedmorepatience Mon 09-Nov-15 15:36:15

I agree with zzzzz the way she is at school at the moment isnt progressing her communication or social skills! We felt that Dd3's social skills hadnt progressed at all since she started school! She is stuck at 5! She cant talk to people she doesnt know and she cant tell someone when she is frightened or anxious!

For us HE is all about trying to help her in those areas. She has already shown that she is making progress by talking to adults and children on a range of ages at one of the HE groups we go to!

We are planning to put her into a studio school for yr10-13 so I see the next 2 yrs as my chance to undo some of the damage done and try to move her forward in terms of social and communication stuff!

So far so good but it has its challenges and some days are exhausting. I am glad now that I stopped working completely or I would have been knackered!

frazzledbutcalm Tue 10-Nov-15 20:35:13

Sorry youare .. I missed you earlier! She doesn't have a pass but did at her previous school so I guess it's worth thinking about. She's at a small school now though, and chances are, she'd worry about being in the corridor by herself!

only ... Haven't watched the link yet, will get to it soon.

zzz ... She doesn't do any clubs, doesn't play outside either. She used to go to gymnastics for 2 years - never spoke to anyone in all that time! I don't understand what you mean about parental input and full days work blush
You're right though about living/communicating now. 8 years at school have not gotten her any further in that department.

Ineed ... It's good you have such good plans!

Update - Yesterday was a VERY good day for dd! She came out of school very happy and it lasted ALL night!!!! She'd been taken out of Music for half the lesson to work with her LSA on the ipad. She was VERY happy to be out of Music. (This was recommended by the Asd worker).
Today has been a different story. Didn't do PE, managed to get through RE, problems in ICT but I don't yet know what they were (had email from the senco to say she'd had a bad lesson but no further details yet). Then she told me she's now not going in first with her early lunch pass anymore because her friend who she takes with her doesn't want to go first anymore. I suspect her friend is missing being with her other friends because of the early lunch pass.

1 step forward 2 steps back sad
I feel like we're going round in circles and I can't take much more sad

Ineedmorepatience Tue 10-Nov-15 22:07:07

I really feel for you! You are in the hardest place at the moment! Do you keep ploughing on in the hope that things click into place or do you throw the towel in!?

Be kind to yourself flowers

frazzledbutcalm Wed 11-Nov-15 22:50:11

That's it exactly ineed sad

I was trying to explain it to my dsis yesterday crying on her shoulder ... she doesn't understand as she doesn't live through it. "Just do this ... say this ... demand this ..." - but we know in RL it's not that easy and we hit brick walls/deaf ears ALL the time.

Someone should be helping our dc!

frazzledbutcalm Fri 13-Nov-15 20:48:21

So I've spoken to dd's care co-ordinator - She's confirmed dd has never had an educational psychologist assess her, she's never had OT assessments, she's never had physio assessments. Should she have any of these? Will they shed any light on how to help dd? Everything I asked cc she just said if I wanted assessments I had to go back to GP confused
I feel like everything has been/is being done backwards for dd.

PolterGoose Fri 13-Nov-15 21:08:35

Message withdrawn at poster's request.

frazzledbutcalm Fri 13-Nov-15 21:42:36

We originally had an initial appointment with a 'nurse' who talked us through our concerns, then what would happen next. We completed Conners questionnaires and SDQ - school also completed these. We then did an aide memoire with another 'nurse'. A young lady (some kind of trainee, but who has worked extensively with children with autism (she was fantastic btw!)) then went to work with dd in school to see her communication difficulties. Someone else did a school observation - on dd very last day of primary, saw her for 10 mins, concluded she was quiet, followed her friends around, but was fine. We then went for her ados assessment - but she didn't have it, instead the psychiatrist saw us, asked lots of questions, went over the aide memoire with us, then said his dx was autism.

That's it. No SALT, no paed, no OT, no physio, no EP.

I feel like I should push now to see these people so that someone can help get to the bottom of how to help dd. Her cc says it's dd has to want to talk to these people so because she won't engage then it's not worth it/not going to work.

Ineedmorepatience Fri 13-Nov-15 21:45:15

She should definitely have had an OT and speech and language assessment as polter says. How can they know what her areas of difficulty are if they havent assessed her ? confused

None of this is your fault though frazzled it is the system! It is badly designed and over complicated!

Was she diagnosed privately? Not that that is an issue but it would give a clue as to why the other things havent been done!

In most areas you can self refer for a communication assessment! If you ring speech and language they will hopefully be helpful! This would give you a clear understanding of her understanding of the subtleties of language.

You could ask the school senco to refer to OT, that is allowed in my LA! They will look at motor skills including visual perception and sensory stuff!

Lastly an EP, they can make recommendations to teaching staff about the best way to support your Dd! If she is not struggling academically then they wont really need to assess her abilities/difficulties but can observe her in class and around school!

Just out of interest what does the care co-ordinator actually do?

Sorry that was so long!

Ineedmorepatience Fri 13-Nov-15 21:46:46

Ok so you just answered my question about who diagnosed her.

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