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.

Glad your appointment went ok dimples. Frustrating that they couldn't give you any further information though.

Social situations are really difficult. I have some friends who are really great and understanding and the ones that aren't I don't really see anymore. Maybe they'll come back around when ds is older. I hope you can manage to find a way to do it.

Great that you managed to have an ot appointment open. Like you say it will be good for the ECHP.

Best of luck today LightTripper

Hope today goes well light

Thank you! Luckily have a busy morning at work or would be in full obsession mode by now. DD's pre-school have a picnic thing later this afternoon (appointment is 2), so I think that will help, to really spend some nice time with her after.

Yes hope it all goes well light.

Cancelled, paediatrician can't make it so it would only be the SLT. We thought about going ahead anyway, as I'm sure what the SLT can tell us will be the same - but then when we have questions I think we'd be more sensible to wait until we can get both perspectives in the answers (unless it's going to be a very long wait to reschedule).

Feeling a bit . Really thought we were going to have some kind of closure today (which I know was never realistic but still )

How frustrating! Do you know when they can rearrange for?

Hopefully next week. It's a family emergency so completely understandable. Just one of those things.

Oh no, so sorry Light, how frustrating. Enjoy your dd’s picnic and hopefully you can re-arrange for next week

A question for those of you with a dx. Have you started to discuss it with your dc at all?

I’ve read that the best time is when they start questioning or noticing differences between other people and/or themselves but I guess the seeds can be planted earlier by talking about diversity in an age appropriate way?

It seems like such a tricky thing to manage. I don’t want him to think at any point that there’s something ‘wrong’ with him.

We don't have a dx (obv!) but given DD is obviously "different" we are starting to sow the seeds. Not sure what/when we would tell her explicitly if she does get a dx, but there are a few books I like about how differences being good.

There is a lovely one called "The Wonder" (not the movie!) www.amazon.co.uk/Wonder-Faye-Hanson/dp/1783701145/ref=sr_1_17?keywords=wonder&tag=mumsnetforum-21&ie=UTF8&qid=1526560382&sr=8-17
About a boy who gets told off for daydreaming, but his art teacher and his parents appreciate his amazing fantasy world.

"Some Dogs Do" about a dog who realises he can fly (but at first nobody believes him and his school friends laugh at him).

"Millie's Marvellous Hat" about a little girl who can't afford a real hat and the shop gives her an imaginary hat for her imaginary money. In the end you see everybody else walking around with their imaginary hats showing their characters, moods and passions.

"Halibut Jackson" is nice - about a man who is very shy but finds a way to be accepted/comfortable. He is definitely different.

"Something Else" is also quite good, though I find it hard as the main character gets rejected by his peers and then rejects a stranger who comes to his house... but it ends happily. It's less actively positive than "The Wonder" though.

I think some of those books about famous people from history would also be good as they get older? E.g. there is Good Night Stories for Rebel Girls and Stories For Boys Who Dare to be Different?

I quite like the Pom Pom books, as Pom Pom has some quite challenging behaviour but also some good friends and manages to figure things out in the end. Shame none of the characters are girls (apart from Mum) but hey ho.

What a disappointment Light - hope that they reschedule soon.

Sorry about the appointment light it's tough when you've built things up and prepared yourself to have them cancel. Hope you get another appointment soon.

The book suggestions look goodlight. DS loves Halibut Jackson and I try to talk about the book's message but I'm not sure how much he takes in.

Yes, didn't feel great yesterday. Fine today, though suspect I will start to feel stressed again when we get a new date/time. It feels kind of small compared with when we were first told they thought she was autistic, or thinking about first day at school, or that kind of stuff.

Thanks for the book recommendations Light. I had some of them in my Amazon basket from another thread/post, I had forgotten until after I posted my question but some more great ideas. I’m so guilty of buying anything that I think may help so I have to really try and restrain myself. A friend has recommended some games to help develop fine motor skills and I think I’m going to get one plus the Halibut Jackson book for now.

I really need to have a sort through all his toys and books and get rid of some and try and rotate others. He has so much stuff.

My course was much more useful today, lots of strategies for improving joint attention and receptive language etc. I need to go through it all again and pull out some bits to try. I’ve also started reading More than words which looks very helpful.

Lovely sunny day today. I hope you all have sunshine too!

Sorry to have been off the radar. Have had a tough few weeks with some challenging behaviours seeming to have come from no where. Hopefully on the way up now... Su is shining here too so that always helps. Sorry to hear your follow up appointment has been postponed Light always frustrating when you build yourself up for a particular day and then it flops.
School placements confirmed here with ASD base at mainstream. Really hoping it will be great but still very anxious. The gap between DS and his peers just seems more and more obvious despite his hard work and our efforts. Really worried atm that behaviour is going to get in the way of learning and the gap will forever widen once at school. DH says very negative thinking of me but sometimes I can't help but worry!

Sorry to read of your son’s behavioural challenges Chasing. My son has been rather difficult since Easter and I think it’s partly because there’s a lot of talk about school at nursery. I thought it was getting better again but yesterday he threw a toy brick which hit one of the nursery staff on the head. It seems v up and down at the moment - I took this afternoon off and we went to a reservoir with an adventure playground- he walked miles, his behaviour was faultless and we laughed so much.

That's a good thought dimples he may well be picking up on things said at nursery. One of our issues last week was sun hat wearing at nursery. They found his protestations quite difficult to manage. Luckily with lots of work at home we seem to have cracked it....fir the most part.
It's so hard because DS can't communicate what's going on in his head. He has speech but it doesn't stretch to complexities such as feelings or past events. However someone working with him commented that he takes everything in and I think I sometimes underestimate that. Just because he can't say it doesn't mean he has no understanding of the things I'm talking about.... So complex.

Sorry you’ve had some challenging behaviour Chasingmytail17. I hope things have settled down for now. Great news about the ASD until. I think worrying is just par for the course, isn’t it.

Dimples, I hope your ds settles down again too. Does he have half term coming up? Hopefully he can recharge his batteries a bit then.

We’ve had some difficult behaviour too over the last several days. A bit tired and very whingy at times but the main issue, that we have had on and off since October, is not wanting to leave places when it’s time to go. This is despite countdowns etc. So bloody tedious. Then if you manage to get him in the car it’s the waiting for him to stop tantrumming and get in his seat while desperately trying to find something to distract him on my phone. I’m hoping this passes again soon...

Sorry you've been having a challenging time chasing. Great about the ASD unit, hopefully they'll be really supportive.

Open the not wanting to leave thing gets so tiring! I fee for you.

The walk around the reservoir sounds lovely dimples.

I'm meeting my ds's EHCP coordinator for the first time today. Feeing a bit nervous but hopefully she can shed a bit of light on what is supposed to be happening next.

Good luck Liv. Is this someone from the LA or an independent advisor?

Thanks Open. Yes she was from the LA. It went fine, we basically just went through section A so she could get to know a bit more about my ds.
I'm pretty pissed off that SaLT still haven't submitted their report (it was supposed to be in on 2nd May and they're now saying 5th June). I made it pretty clear about their legal responsibility and she's going to chase it up.

Hi my son is also starting reception no dx but is under the care of a developmental pead’ for social communication difficulites and a speech disorder.

He has a place at small supportive infant school linked to his preschool. But I’m quite concerned about how he will cope and his self esteem. The school/preschool are in process of applying for an Echp. I’m finding the process hard as it is so negative but also worried he won’t get all the support he needs.

He is being observed by the educational phycologist this week. I’m gearing myself up for another shock about what he can’t do or panic that his issues are being downplayed. Professional opinions swing between him needing full time 1:1 to him not qualifying for Sensa funding. It’s such a big difference of opinion I’m not quite sure what to fight for even!

That's the hardest thing I find Soulcake. You know you should be fighting for something but you have no idea what it is, and people who do know either won't tell you or disagree with each other!

It's like with SLT. We had SLT from the LA and every session was just awkward. The woman turned up, asked if we did sabotage games. We said yes, asked her a few questions, she gave not particuarly helpful answers and went away again. Because DD could talk (just didn't ask for things), they only had that one solution and ended up signing us off once DD started asking for things.

Now DD has SLT (private) through her pre-school and the lady does all kinds of other stuff with her: turn taking, sequencing stories, conversation skills (giving DD cards to help prompt her to ask about the SLT and tell the SLT about her week), scaffolding conversations with her peers (e.g. setting up turn taking games or a puzzle with a peer). It's been so good for DD but it never would have occurred to me as something an SLT would do (because it's broader communication skills, not just speech). But if it hadn't kind of "fallen in our lap" I never would have had any idea to ask for it.

This is why I think I must start to get involved in some parents groups IRL - otherwise you have no idea what is out there or what might be possible.

I hope the EP report is helpful. I love it when they put in something positive as otherwise these reports are such grim reading and seem to bear no relation to the gorgeous happy kids we have at home day to day!

I agree with light. The information can be so varied. I suppose everyone has their own agenda too. I hope the EP assessment goes well!