I don't understand my DD, I don't know how to help her and there is nobody to give me any advice...

(44 Posts)
craftyoldhen Wed 03-Feb-16 22:20:00

My poor DD is really struggling at school. She is constantly in tears. She has come out of school sobbing her heart out every day this week, most of last week and she's just getting worse. She says she hates school. She struggles to articulate why she hates it so much. I don't even know if it's just school in general she hates or is it that school in particular?

I don't know how much of this is just to be expected with ASD. People tell me anxiety is normal for people with ASD, so should I just accept that she is going to be upset all the time for the rest of her school years?

She is a completely different person to the 4 year old who started school, she's a totally different person to the one she was last year. She is just regressing in front of my eyes...but I've been told this is normal too. So I need to accept it even though it's like watching a car crash in slow motion.

I've tried accessing support for her. School are slowly putting stuff in place, I still think they're a bit shit but they tell me they're doing what they can.

Her CAMHS referral got bounced back - as her anxiety is an ASD issue not a mental health issue apparently. She doesn't see anyone else.

I've considered moving schools 100000's of times just in case it is the school that's causing her anxiety. We've even found one with a space that has a good SEN policy and DD looked round. She wants to move but I don't think she has any realistic idea of what it involves. She is totally head in the clouds and when I talk to her about it she just comes out with nonsense (to me) and I get the impression she doesn't really understand...or maybe I don't understand HER.

It would be a big change. I know she would be terrified of starting a new school where she doesn't know anyone. She would probably not make friends. It might not be realistically any better...

At least in her current school everything is familiar and she has friends, even though they exclude her a lot and are often quite nasty to her. These are friends she made in reception and year 1 back when she was confident and sociable (in her clumsy way). She can't speak to strangers now, she won't even look at them! So she'll struggle to make new friends.

DD says she wants to move schools because she doesn't like all the arguments between her friends (they fall out constantly) but surely it's better for her to have some friends even if they fall out a lot, rather than no friends at all?

I feel so clueless, I have no experience of ASD before my DD and I feel I have no idea what to do or how to help her.

OP’s posts: |
PolterGoose Thu 04-Feb-16 07:25:51

Message withdrawn at poster's request.

onlyoneboot Thu 04-Feb-16 08:19:28

Reading your post took me back to years of DD2 going to school miserable, coming home miserable. Nobody should be telling you it's normal for a child with ASD to be so distraught as if that's all you can expect.

DD2 wasn't diagnosed until she fell apart completely aged 11 after years of me telling school how unhappy she was but because she was academically way ahead they shrugged me off. We did almost get used to her misery because she was so quiet and I feel awful about that but she's now home ed. She does have a dark way of looking at the world but her humour and curiosity is back and that is wonderful.

What I'm saying is a change is worth a try, as Polter says, to break patterns and to give her a chance to be herself. Good luckflowers

onlyoneboot Thu 04-Feb-16 08:54:40

Also you might find it helpful calling one of the autism charity helplines. National or local to you. They've been helpful to me as a listening ear and have sent follow up emails with lots of links.

PolterGoose Thu 04-Feb-16 09:06:21

Message withdrawn at poster's request.

craftyoldhen Thu 04-Feb-16 10:08:34

To be fair to her friends DD is difficult to get along with. She has very poor social skills. The teachers say she's controlling, won't compromise, can't see anyone else's point of view and regularly loses it when things aren't going her way.

She's also very difficult to help. The teachers have done things like asking her to "help" them at playtime when she's got no-one to play with. She complains and tells them she doesn't want to help them.

The teachers have told her she can go and sit and read in one of the infant classrooms at lunch time if she wants. She refuses to go because she doesn't want to walk across the infant yard on her own confused

The teachers have given her visuals to use, but she won't use them because she doesn't like them, she thinks they're silly confused

She really is a prickly pear.

But underneath all that she's very anxious and unhappy too.

I'm really at a loss. I'm tempted to move her but suspect it won't make much difference. The teachers say you can't help a child that doesn't want to be helped, maybe they're right?

OP’s posts: |
craftyoldhen Thu 04-Feb-16 10:11:57

She's 8 and in year 4.

Yes she definitely has a dark way of looking at things - she's my little eeyore.

She hasn't always been this way though.

OP’s posts: |
onlyoneboot Thu 04-Feb-16 10:15:44

Yes, very difficult to know what's a worry. DD2 writes a lot but won't let me read it, I'd love to have that insight into her world. The school really didn't know what to do with her because she didn't fit into the sunny, inclusive primary school mold. They even edited her work for presentation. That said, I do ask her to quieten down when she's loudly ruminating over the best ways to die while wandering round the supermarketblush

onlyoneboot Thu 04-Feb-16 10:30:46

Sorry, cross posted.

She's still very young and it's not about not wanting to be helped, she just needs the right kind of help. And teachers should ideally be constantly looking for what does work.

onlyoneboot Thu 04-Feb-16 10:33:12

Would she make her own visuals?

craftyoldhen Thu 04-Feb-16 10:38:06

Yes I have no idea what goes on in that head of hers.

It's her behaviour that's worrying me - the tears, not eating at school, her social skills seem to have got worse, she's lost all her confidence and self esteem. She never wants to leave the house.

She does this zoning out thing a lot. She did it when we went to look at the new school. She was OK for the first 10 mins and then it's like she'd just switched off, she didn't respond to the headteacher and her body started to go floppy. I could see her gradually start to fall off her chair and I had catch her and sit her up again confused The headteacher said she looked shell shocked.

How is she going to move schools if she's like that after 10 mins in the headteachers office with her mum sat next to her?

OP’s posts: |
craftyoldhen Thu 04-Feb-16 10:41:21

I doubt she would onlyoneboot - she thinks they're silly hmm

It has taken me a year and a half of constantly going into school to get them to do the stuff they're doing now.

I can just imagine their faces when I say it isn't working and can we try something else!!!

OP’s posts: |
PolterGoose Thu 04-Feb-16 10:50:28

Message withdrawn at poster's request.

craftyoldhen Thu 04-Feb-16 10:55:55

No I'm not aware of PDA strategies - where would I find out about these?

OP’s posts: |
PolterGoose Thu 04-Feb-16 11:07:24

Message withdrawn at poster's request.

craftyoldhen Thu 04-Feb-16 11:30:43

Thanks Polter. I have the explosive child book, I agree it's very helpful at home.

I'm just not sure how the ideas in it translate to a mainstream school setting? I don't think they have the time or the staff available. And ultimately I don't think they can be arsed.

OP’s posts: |
PolterGoose Thu 04-Feb-16 11:34:19

Message withdrawn at poster's request.

craftyoldhen Thu 04-Feb-16 11:59:42

Oh I've know it's not been the right school for her right from the start.

We almost moved her at the start of Y1 but then she had started to settle in and make friends so we decided not too. I regret that now.

I would move her in a flash if I knew she could cope with it. It's just that she might not. And then what? It's such a hard decision to make :-(

OP’s posts: |
Moominmamma13 Thu 04-Feb-16 13:33:57

Oh, your poor DD, she sounds so unhappysad
Could you home educate her for a while to get her confidence back?
There must be some HE families around your area you could get in contact with so that socialising won't be an issue.

craftyoldhen Thu 04-Feb-16 13:42:19

No HE is out of the question.

I work 9.30-3pm 4 days a week, DH works 5 days a week.

OP’s posts: |
onlyoneboot Thu 04-Feb-16 14:42:47

Oh dear, she sounds like she's at her limit crafty the not eating, going floppy, zoning out, not leaving the house sound so like DD2 before she just couldn't handle school at all. But you know that, which is why you're asking for help.

I'm trying to decide what to do with DS who is 10 and has been out of school for over 2 months. We're working through a book called Starving the Anxiety Gremlin which is helping me work out what is going on. CAHMS won't see him about anxiety either, just part of ASD hmm

frazzledbutcalm Thu 04-Feb-16 14:53:09

Oh my goodness OP ... you've described my dd to a tee! I'm no further forward either sad

Knickersinatwist36 Thu 04-Feb-16 15:07:05

Sorry just another who is in much the same position. This term has been a bit better but even though the teacher says she has had a great day the moment she gets into the car she says she is never going back. She wants to move schools but is so far behind on her work already that I think it would be awful for her. I'm going to keep plugging away until the next bout of school refusal starts (it gets longer every time) and then reassess, sorry not to add any help but flowers because I know how you feel x

bialystockandbloom Thu 04-Feb-16 15:24:32

My ds also has ASD, is 8yo and in y4, and is also really unhappy at the moment. I don't really know why either. Like your dd, he's very negative (def glass half empty) and has been tearful at school this term. I can't get yo the bottom of it. Suddenly lots of anxieties rearing, eg catching germs, washing hands, getting sick, and also very demand-avoidant. But I think the anxieties are a symptom of something else, not a basic characteristic of ASD - when he's been getting good support developmentally he's never anxious.

I wonder if the social intricacies ramp up at this age, plus the higher expectations of class work, group work etc.

However, it seems, from all my friends with NT 8/9yos, that they all seem to be struggling atm, are showing much more defiance, attitude, and "life is totally unfair" stroppiness.

No help I'm afraid, but just to let you know you're not alone here, it seems among both ASD and NT children [wan smile]

Ineedmorepatience Thu 04-Feb-16 15:46:45

Like only my Dd3 with Asd is currently home ed!

We find that it works much better for us, we dont have any of the before and after school anxiety, although she does still have anxiety issues it is much more manageable when I can work the day around her instead of trying to force her to fit in.

We went on a very long journey through 3 schools before we reached the conclusion that HE was the way forward for us.

I know there are schools out there who get it right more often than they get it wrong but how you find them is a bit of a mystery to me!

Good luck whatever happens flowers

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