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

[craftyoldhen]

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.

[craftyoldhen]

Yet more after school drama

She's in bed now at least.

There's a few of us in the same boat isn't there, and I'm grateful for your replies, because even if we don't have the answers it's nice to know I'm not alone. I don't know many people with a child with ASD and no-one with a DD, it can be lonely because I suspect my family and friends don't know what to say sometimes.

[bialystockandbloom]

crafty my ds has only just now gone to sleep, after over 2 hours of tears, obsessing about whether he'd washed his hands, whether he was pale, stomach ache etc etc. This was after I got a call from his after-school activity club and had to pick him up early (4th time in 2 weeks). What is going on with our children?? The wheels are just coming off! Interesting so many here have/had the same in y4.

youarentkiddingme what support did your school put in that helped?

[Meeep]

What help does she have at school?

[craftyoldhen]

She has had literally ZERO help until after Christmas.

They have just started a weekly social stories session with her. She's had 2 sessions so far.

She has been referred to the school counsellor but hasn't seen her yet.

They have made some visuals for her (that she hates).

They've told her she can sit in infant classroom at lunchtime and read but she is reluctant to go because it means she has to walk across the infant yard on her own and I think she's anxious about that.

[Waitingforsherlock]

Could the school provide an older girl to mentor your dd? My dd's school did very little when she fell to pieces last year in yr 7. She too struggled massively with school refusal in year 4 too, which resulted in a change of schools. She soldiered on at the new school until leaving altogether last year. She is now home educated and although she is still very anxious at least the massive obstacle of school has been removed. I do wonder though if school had given her an older girl to look after her whether she might have had more of a chance of staying at school. (Perhaps your dd could be accompanied across the infant yard?)

[Youarentkiddingme]

bialy dis attended a nurture group for 2 afternoons a week. Here he got a chance to socialise in a small group, take part in ELSA activities and talk 1:1 about anything and discuss strategies to make it better. He also has daily interventions in literacy (spelling, reading, sentence writing etc), also a therapeutic story writing group to help him learn the skills he has delays in to reduce frustration during class work. On top of this there was a TA in class all the time who delivered the interventions as a 1:1 and small group, who supports DS 1:1 for a good period of literacy sessions (she was his reader and scribe) as well as providing visual aids for DS when writing.
Ds just seems to flourish when he had these times out of class and extra inout and made most academic progress when his actual 'teaching/in class time) was reduced.

[Youarentkiddingme]

Ds school also had a lunchtime 'club'. So students could chose a friend to go with them p. They had computers and Lego as well as books etc. There was a free choice (with limits!) of what students did as it was their free time.
The lunch club was available to invited students who were classed as vunerable so it was a group situation rather than the students involved feeling xcluded and sat out alone. There was usually about 10 in total and run by the ELSA.

[OneInEight]

Mine ran into difficulties at a very similar age. Actually although they are twins ds2 started having difficulties about six months after ds1. Strikingly, when ds1's needs were met - he ended up in an EBD school after permanent exclusion in year 5 - he returned to his happy, generally well behaved state. When that support structure is reduced his anxiety still increases but we are hoping as he gets older he will develop more self-management strategies. I think he is starting to anyway.

ds2 has had a harder journey and like you dd become very school phobic starting in year 4 and very depressed and withdrawn. We fought for four years to keep him in education but in the autumn gave up the battle and are now home educating him. We think slowly the clouds of depression are lifting and he seems happier - certainly more cooperative most of the time. In hindsight we should have either made a school move or withdrawn him earlier but it is easier said than done and everyone seemed to be telling us at the time that he needed to stay in the education system to get support.

[Ineedmorepatience]

One of the problems we had was that there were many "reasonable adjustments" available to Dd3 in school, the last 2 schools were both very inclusive but she had to be able to access the adjustments herself which she simply couldnt do!

Anxious children in my experience need really good quality support from a person who can bond with them, Dd3 needed someone who could read her because she becomes non verbal when she is stressed!

I dont know how you find a person like this in a mainstream school but without it, our kids are not coping and then academically able or not they end up not learning at all!

[Meeep]

What would the new school offer her?
It's so difficult to know what to do for the best sometimes.

[craftyoldhen]

The new school just seem a lot more flexible.

They let children stay in a playtime if they're having difficulties on the yard.

They'll give her a safe space to go to when upset.

They'll give her a named staff that she can go to about any worries.

They'll take her out of class if shes upset to give her chance to calm down.

The school caters for kids with physical disabilities in a mainstream setting so they have more support staff in class. They also have lots of kids with ASD too (but then so does her current school), and it has a good reputation for kids with disabilities in general.

It's a smaller school, quieter, much nicer environment because of the need to cater for kids with physical disabilities - so wide corridors, big classrooms, every clasroom has its own seperate toilet, it's own entrance onto the yard - so I think the whole environment is fairly low stress for a kid with ASD.

[craftyoldhen]

They do social stories, lego therapy and organise drop in sessions for parents - like next week they've got one run by CAMHS about anxiety.

However it's difficult to know what it would be like in practice. Her current school looks great on paper but the general culture of the school is inflexible, unhelpful, unsupportive and that's something you don't know until you've been there for a bit.

[Youarentkiddingme]

crafty that's how I'd describe DS current school. Great on paper but in reality they aren't good.
Same as ineed said about reasonable adjustments. School will argue they are putting them in but it's the whole general day to day stuff that's overwhelming DS.
The biggest current issue is not so much what they don't do with DS but alongside that the inability or lack of willingness to communicate without me.

[craftyoldhen]

Yes I agree the willingness to communicate is very important - and her current school are APPALLING at communication.

And I agree with what Potter said earlier about being proactive rather then reactive. School did sweet FA for years despite being fully aware of her difficulties and it's only because her behaviour has escalated recently, and because I cried in the school office because I was so worried about her , that they've started to help.

But it's almost like it's too late because DD is already too anxious to engage with what they're offering.

Anyway the big news is we've decided to move her. I spoke to the new school earlier today and she is going for a short session on Monday morning to see how she gets on.

[Meeep]

You are right that you only know when you get there how they really are.
I think a lot can change depending on the class teacher too.
But, it sounds like her old school is very unresponsive, so hopefully things can only get better! Best of luck for Monday. X

[Ineedmorepatience]

Good luck for Monday crafty and crafty'sDD

[craftyoldhen]

Thanks

[Youarentkiddingme]

Beat of luck on Monday