DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Open it’s hard to relax about it though isn’t it? I start trying to get my son dressed about an hour and a half before we’re due to leave the house. We haven’t been late yet but it’s only a matter of time. Hope that tomorrow is easier for you.

His TA said he did really well receiving the award and then walked back to his space before loudly announcing ‘I did it!’

That’s brilliant. He knew it was a momentous achievement too. Well done him

Yes, so hard. I feel I need to though, I must find the time to use my Rituals app guided meditation. I do find it helps when I remember to use it.

I definitely need to get him ready earlier, he’s been so keen so far it’s not been an issue. I try to leave it until after breakfast though so nothing gets food on it. I think today he still would have refused to leave the house anyway.

We’re still on 4:30 wake ups. So tedious...

Oh no, 4:30 starts, how painful! My boy is a very messy eater and I'd much rather he had breakfast in his pjs but getting dressed has always been a flashpoint for us

We also have the resistance to getting dressed Dimples's and Open. He seems to calm down on the walk to school but it's a tough start to the day. Dinner times are improving mainly because he's been seduced by puddings and custard! He still hates the noise and the crowded hall but his TA has been taking him out early and thinks he'll be ok. Interestingly a few other parents have said their kids struggle with dinner times so it's not just DS.

Well done Dimples's DS on the award and Liv's DS on using the toilet. What a breakthrough! Hoping you get some sleep soon Open.

Ugh, another tough morning. He got dressed ok but I had to strong arm him up the road despite the bribes and he lay face down in the (thankfully dry) dirt outside the school.

I hope everyone else had a better start!

Well done on getting him in Open. DS has a fixation with having sandy things in his hands. Tbh we let a lot of things go in order to get him to try new things or visit new places. If we get anywhere without some dirt or mud on his hands or clothes we're winning!

That's great news about your DS dimples! How lovely.

Sorry mornings are still proving tricky. They are getting a bit easier here. The TA is being a superstar and letting DD transition from me to her and we've now had 2 mornings without tears on that basis.

Apparently DD is also getting quite friendly with another girl (whose mum I like - hurrah!) who is also quite shy/anxious (I noticed she was losing it a bit at the end of a party last weekend about the party being too noisy). So I think the TA is hoping DD can slowly shift from needing to transition to the TA to transitioning to this nice girl instead. Anyway, we'll see!

We had the meeting with school. I'm always braced for bad news or something new to worry about, but there was actually nothing - just stuff we already know about her not joining in some things (though she is doing PE - which I thought would be the hardest - woo!) They seem very relaxed about it and they seem confident she will join in the other stuff in due course. So we are just going to let them get on with doing it their way and see where we are at half term. They are also really relaxed about whatever we need to do to have a good transition in the morning, so overall they are being very supportive.

DD is still really enjoying herself so all in all this is about the best place I could have imagined we'd be in at this stage!

So the only "bad things" are that we are still in total refusal to do extra-curricular (ballet, swimming) ... but in the scheme of things that is the kind of problem I can handle! I think we are going to follow the school approach and take her but let her just sit with us and watch if she wants to, and hopefully she'll want to join in in time. Our general experience is trying to push DD is usually totally counterproductive, but it feels quite alien not to even try to get her to join in! We're going to try it though I think, and see where we end up in a few weeks. It all feels really like "first world problems" though in the scheme of what could be going on!

Hope this morning goes better Open!

Great about he award dimples and that lunchtime is getting better Sue.

I think extra curricular activities are still quite a long way off for us light. It sounds like your dd is doing so well with everything else, I'm sure you are making the right decision not to push her too far.

All seems ok here. Building works all finished (phew). Ds seems to be happy at school and apparently spends quite a lot of time playing with another little boy. Apparently they play lots of chase and tickle each other.
Also met another parent of a child with SEN yesterday, who's in Ds's class. It will be good to chat to them a bit more.

I went on another course on Wednesday about how to make a communication passport for ds, which was good. I now need to find the time to actually get all the information together to do it!

How is everyone getting on? I hope drop off is getting easier and that dc are continuing to enjoy school.

A bit mixed here. He’s doing really well overall I think but we’re still having mornings where he’s reluctant to get dressed and leave the house. This is resulting in a lot of persuasion and some bribery - which doesn’t always work. So far we’ve made it in every day, even if 15 minutes late but once he’s there, he’s fine and generally has a good day so I don’t know what the issue is. The teacher says it’s common after the novelty wears off and that he’s still little. The specialist teacher says it could take a full term for him to settle in and not feel anxious.

The specialist teacher will hopefully be coming in before the end of half term to give them some targeted support in certain areas. I’m concerned about his social communication with his peers and I’m hoping this is something that they can work on. I mean, I’m sure they are but I feel it needs to be a high priority.

School photographer on Monday and first parents evening mid-October though we’re in regular contact with them anyway. I can’t believe it will be the half term holiday soon.

And a couple of questions, please:

• Can anyone recommend a good website or online resource for social stories, paid or otherwise.

• Does anyone have any targeted strategies or exercises for improving social communication with peers?

Sorry it's been a bit mixed open. I definitely feel like ds is getting a bit more tired but no refusals yet. I can't quite believe how quickly half term is coming up.

We have 'the new social stories book' by carol gray. It was recommended reading in quite a lot of books I was looking at but I'm yet to read it! NAS has an online guide to social stories with links.

www.autism.org.uk/about/strategies/social-stories-comic-strips.aspx

Not sure about targeted social support. For ds it's still mainly about getting him to turn take with other children. That might be a bit basic for your ds.

Hi liv. No, I don’t think turn taking is too basic for my ds, it’s something that still needs work and is what the specialist teacher suggested but is difficult to do at home. He will turn take with dh and I but if we have a child over for a play date then they will either want to do their own thing together, investigate toys or they will play alone depending on the mood ds is in. I do feel that he needs some sort of language support to model conversation with his peers alongside this. I guess we just need to ensure we are doing this with his toys, modelling the interaction and hoping he copies when he’s ready.

A friend, and my dh, suggested that he just needs time and maybe I am just being impatient and overthinking it. It’s just I see his class mates playing together so naturally while we are waiting to go into school and ds tries to join in and he copies them but he doesn’t know what to say to them. It makes me so sad for him.

Thanks for the recommendations. We have the social stories and comic strip books but, typically, none of the social stories are quite right. I was hoping to find a magic website that might have exactly what I need rather than using the formula to try and (badly) create my own!

DS's 1:1 facilitates games with one or two other children (e.g. bucket time) as part of his social skills programme. He did something similar at nursery too which helped him to at least tolerate playing alongside others. I'm not sure if it has a name or is something they just do though. DS is v resistant to playing with other children so it's a key intervention for him.

DD did practice at turn taking with her SLT (still does I think...). They played games like pop up pirate at nursery. She seems to be doing "Guess Who" at school so I was thinking we should get a copy for home.

Bad drop off again this morning. I was trying to get her to hang her own things up and I think I just pushed it too far. It's so hard because it is a mix of normal 4 year old stubbornness mixed in with the autism anxiety and it's just so hard to get the balance right between pushing enough and not too much. Still, at least with drop off we get a new go every day, so we can keep tweaking until we get it right!

I think we've given up on swimming. We binned the family class and just went for a family swim on Saturday, and it was so much nicer. In the end if she learns to swim I don't really care how (or even how fast). So I think we're just going to cancel the lessons and take stock until Christmas.

We've also got the Social Stories book but I've also struggled to use them - as you say they never seem quite nice. I really like the Molly Potter books for DD ("How are you feeling today?" and "Will you be my friend?" - there is another one called "What's worrying you?" that we don't have yet). They aren't specifically for neurodiverse children but I think a lot of the ideas for things to do are good for autistic kids (and because there are 8 options on each page there is usually going to be something that works). They have a lot of social situations in and ideas for different ways to respond to different situations or different feelings. We probably only read one once every couple of weeks, but DD often asks questions and we end up having quite interesting conversations about them.

SueVide I’m going to suggest a social skills group to the school. Hopefully he’s not the only child that would benefit from it, even if none of the other children are autistic. I can offer to lend them a couple of books I have on social games. I always worry that I’m trying to teach them to suck eggs though...

Light thanks for reminding me. I have the two Molly Potter books bought when you recommended them previously, I have got them out of his bookcase. He wasn’t keen on them before - maybe that is an indication that he’s not yet developmentally ready for them? But I should keep trying regularly. I think he senses these books are intended to teach him something and he resists reading them. I did him a comic strip story about sharing and he refused to read it and told me to put it away. I don’t think it was just a reflection of my drawing skills.

I’m sorry your dd is still struggling at drop off. I always find I’m not sure where the autism ends and stubbornness begins. I suspect I will spend my life Trying to work this out.

Ds went in happily this morning so that was a relief.

I started watching Atypical on Netflix last night, has anyone seen it? I heard Connor Ward say he didn’t like the first season but that the second was better.

I just did a bit of a google on social stories and pinterest seems to have loads.

Thanks liv, I haven’t looked there.

Pinterest is a good idea, I never think of that!

We don't have Netflix but I also saw Connor Ward's review and the second series sounded better (is it the definition of pointlessness to watch reviews for shows you can't get?!)

So many mistypes in my last post. Garrgh.

I just thought of something else we used to do with DD that I feel may have helped with socialising with peers. It was something our ABA person suggested but we would just do silly things with her soft toys like put one on her breakfast chair and get her to ask it to move so she could sit there. Lots of exasperated "oh look, panda's in your chair, he shouldn't be there should he?... What's he doing there?.... Shall we ask him to sit somewhere else?..." and then doing voices for them and getting them to do little chats with her. So they might be sitting on the iPad, or holding her toothbrush, or whatever. At a point when she was very anxious about talking to peers it did help practice some of the "to and fro" in a more fun way.

May be worth a try!

I can't believe that we're on the count down to half term either!

I think my son struggles to know what to say to other children sometimes. I have been modelling conversations for him using toys too. He tends to ask questions that he already knows the answer to (and has asked before) e.g. is that your Mum? Is that your dog? What's your name, Laura?!

My son has enjoyed the Sue Graves books e.g. Tiger has a tantrum, Giraffe feels left out

If you need some social stories, I've found some basic (and then more detailed ones) here that are free

I've ended up buying my own laminator, and printing out different sheets of pictures, and then cutting specific cards / story boards out to make it more relevant to us

www.victoriesnautism.com/self-management--emotionalbehavioral.html

do2learn.com/picturecards/overview.htm

These are via amazon, I think its actually a UK based firm

www.amazon.com/s?marketplaceID=ATVPDKIKX0DER&me=A22JR6XE9RIH7X&merchant=A22JR6XE9RIH7X&tag=mumsnetforum-21

Light definitely not pointless, it will probably be available on another platform at some point. Or you might get Netflix! We definitely need to do more role modelling with toys, current favourites are toy story again.

dimples thanks for the book recommendations, I’ve popped a few into my Amazon basket. I’ve not seen them before.

LittleMy77 thanks for the links, I’ll check them out.

Apparently ds sat and did a big smile for the photographer so I’m looking forward to seeing the photos. Though I’m hoping it’s a natural smile and not his exaggerated ‘cheese’ grin

Ahh that's nice open. DD refused to do school photo this year - it's a shame it's so early in term, I have to say I don't hold out much hope for next year either! Though maybe when her brother is big enough to go in with her that might help a bit.

Light your DD may surprise you next yr. DS hated school photos and refused for the first couple of yrs at nursery because they were in the dinner hall (which he's just about tolerating now).

Last year unexpectedly he had a breakthrough and was in both the class and individual photos - he even managed a smile. We ended up buying lots of copies as we couldn't believe it!

Amazing Sue!

Always expect the unexpected, that's the lesson

That’s a shame Light. I agree, it’s very early in the term. Hopefully next year she’ll be more relaxed about it.

Sue great you got some good photos. We did similar this year. Last year ds refused to pose for the photographer but she managed to get a lovely shot of him as he walked towards her. This year dh managed to get him to pose and we ended up buying all 4 of them in case we didn’t get any more good ones for a while