I just don't know what to do next - advice welcome!

[siblingrivalry]

I apologise in advance if this is a long post, I will do my best not to go on too much

I am basically having a really rough time with dd1, who is 9 with AS and I have kind of lost my way.

Basically, she started at a fab MS school in Sept, after 9 months of Home Ed (previous school gave zero support).
DD loves the school and the staff and has settled in, but she is finding it really tough to cope on a full-time basis.

I think this is largely due to her pretty extreme sensory issues, especially around noise, and her need for a decent amount of 'down time' - at home she likes to spend a good while running , bouncing etc in order to process her thoughts.

So, at school she appears to get on with things and is very adept at painting on a smile and going through the motions.
However, at home she is having huge meltdowns and refuses to go to school again. She is verbally aggressive and seems to be struggling to control physical aggression.

During a chat the other night she said that people and situations (eg chairs being put back in the wrong order) make her angry and 'boiling inside'. She says that she wants to hit/punch people but that it's against the rules.
Her angry outbursts are becoming more frequent and she keeps saying she can't cope .

School are pushing for the Autism Outreach Team to come in, but there's still no news. I feel as though I'm a fraud and they may think I'm exaggerating, because she is no problem at school.I do have DH to back me up, though.
I really like the staff, so I feel bad about pushing for more support -do I just accept that this behaviour and anger is part and parcel of dd dealing with school, or is it an indication that things are getting too much for her?

I'm so confused about how to handle her and would be grateful for any advice. Thank you.

Hi sibling

I would ask whether your DD has a Statement of special needs in place. If she does not have a statement I would seriously consider applying for such a document asap from your LEA.

It does sound like she is bottling up all her frustrations of a day to do with school and then taking out on you at the end of the school day. This may be as a result too of the school not currently meeting her additioanl needs (this is why I mention the Statement).

IPSEA are very good at the minefield that is the statementing process, their web address is www.ipsea.org.uk.

Push school for more support, do NOT feel bad about asking where they are with regards to getting the Autism Outreach team in and apply yourself for the statement if she does not have such a document already behind her.

You are your child's best - and only - advocate. No-one else is better placed than you to fight her corner. Also no-one else is going to do it.

have you explained the home stuff to school?

i would be meeting with them and asking for some additional down time/ release time to be built into her timetable - is there a 'safe space' she can go to when she starts getting tense? my old school used to have a free room where children with AS could just turn up to at any point in the day. (it was staffed, lol, but aware this is unusual at primary)

does she have any 1-1 time or a keyworker that can recognise if she's getting to that point?

trying to get school to build in some extra of what you think she needs (running/ bouncing/ 10 minutes 'out') would be worth a trial to see if it helps with home?

dd2 is allowed to walk around the school if she needs time out - with her it's more of a muscle issue - she needs to 'wake up' her muscles periodically or she finds it really difficult to maintain posture etc, but both have a reasonable need for differentiated time.

do ask them to chase up the referral for outreach - or call them yourself and say hi - could you tell me where she is on the waitlist please?

quite a few of the sn kids in our ms had a card that they could flash to the teacher when they were finding things too much (like the whole chairs issue ) and all the staff recognised the importance of allowing 'out' time.

i often think that secondaries can be a little better at dealing with this - part of allowing the child to make the decision/ teaching coping strategies for taking part in a busy curriculum.

great that you've found a good school though - you must give them the chance to give you some more support - ask for what you think she needs. don't be afraid to be a little bit pushy, they won't know the difficulties you are experiencing at home due to the fact she is managing to hold it together at school...

Thanks Attila and Madwoman.

There has been a lot of talk -instigated by me - about starting the statementing process. I feel as though I have been going round in circles so I will contact IPSEA and get some advice, thanks.

They have a sensory tent, where dd can go if she needs to, and she has been told that she can have time alone eg at playtime, if she needs it.
However, she isn't good at knowing when she needs help, or how to ask for it. I have told school that she needs a fair bit of prompting etc but it hasn't happened.
It seems that they don't recognise when things are getting tough for her so she kind of slips through the net.

She told me that she goes in before everyone else on a morning to rearrange the chairs correctly (!) yet no one seems to have noticed.

I agree, I need to talk to the school about how bad it is at home. Her teacher appears amazed if I mention a meltdown at home, so I kind of stopped saying anything. I will phone on Monday and arrange a meeting.
Thanks for the support.

if she is finding it difficult to recognise herself, then it is worth asking them to 'timetable' out time until she starts to recognise.

i know it's totally diff, but i also have an 8yo ds who doesn't recognise when he needs the toilet - so essentially his bathroom needs are 'timetabled' otherwise he just gets himself into all sorts of difficulties. it's sort of a similar idea - by timetabling an 'essential' activity (something that will help her to deal with the stresses of ms) you can try and avoid the meltdowns/ trouser disasters later...

someone on here had a spoon theory - can't remember who. it might give her a few extra spoons.