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.

liv yesterday sounded exhausting! I hope your meeting with the school went well.

danni 5/5:30 is ds’s norm but this year we’ve had periods where he’s woken much earlier; it’s exhausting. We did get melatonin for him at the end of his last bout. Gave it to him once and he then came out of that period. It only helped him sleep until 4:30 though so not sure it will help us much. It’s also a tablet so very tricky to give. Luckily for us he goes to sleep fine, though I do sit with him until he falls asleep. Your evenings sound difficult. If I were you I’d get an appointment with the paed to discuss melatonin. I hope you’ve had a better evening tonight, yesterday was awful for you

MrsFrisby (I loved that book as a child) I hope you get to finally see your ds in his Christmas show. I’m hoping we’ll get to see one next year after missing this one.

I’ve got chocolate for teacher and TA’s. Typically he has several so I need to get them all gifts... one is celiac and doesn’t drink so she’s just going to get a voucher . I feel like I should also give the teacher a bottle of Prosecco but the TA’s are the ones that do more with him? Not sure if I should just give them all the same.

Re gifts for TA's etc. I used to write a letter every Christmas and End of Year to the head detailing with examplew how they had supported my son. They get a copy and can then use it for any performace related stuff, future jobs CVs, and just to get recognition from the senior management team.

Mrsfrisby that is a lovely idea! I hope your ds's Christmas play goes well.

Danni I feel for you, ds has been living on milk and belvita breakfast biscuits for about 3 weeks now!

Dimples your ds's 1:1 sounds lovely. It's very hard to take the behaviour when it feels calculated. Hopefully it's just a blip

Thanks Open.

I felt a bit depressed after the meeting, I can't really say why. They feel ds is fitting in well and is settled at school. He did well in the class assembly, he managed to sit on his 1:1's lap the whole way through the performance and grudgingly got up to do the dance at the end (they showed me the video).
They want to focus on communication (obviously) and self care skills, which is fine. But they were on about him not wearing shoes again and I just don't feel like this is something worth tackling at the moment.
All in all it felt a bit rushed and his teacher seemed very distracted.
I think it was another one of those moments where I felt like, I wasn't really being listened to about ds, then you realise this will be what the rest of his school life is going to be like! But maybe that's me just feeling/being a bit defensive from the off.

On the other hand it was lovely to speak to his 1:1 a bit more and see the new sensory room they have made.

I think that's a very natural reaction to meeting the teacher Liv. It sounds like there were are so many positives and I totally agree re footwear - you don't want to sweat the small stuff.

Do you all have communication books with school? I think I need to ask for one as it was not great being told about the hitting at the gates and particularly not helpful within my boy's earshot.

liv I agree, there were many positives from your meeting, it’s great he is settled and fitting in well. Do they also use makaton with him? I would say don’t let one meeting cloud your feelings about the school and teacher. This must be one of the busiest times of year for them with all the extra Christmas activities going on. She could have just had a bad day. Give the benefit of the doubt and reserve judgement until you’ve met with them a couple more times

dimples we have a communication book - I asked for it as we had one at nursery and I liked to know a bit about what he’d done. They used to write in it daily but after the specialist teachers visit recently she said they only needed to do it weekly as he was settling so well

Ds full of cold and snotty. He was up for the day at 3am yesterday so last night we gave him melatonin again (only 2nd time). He slept until about 4:30 today, same as before. I don’t think it’s going to make him sleep beyond that however he had a long, late nap yesterday afternoon while GP’s were babysitting and it did help him fall asleep earlier than we feared. I thought he’d be up until midnight!

Thank you dimples and open. You're both right there were lots of positives and I think this time of year is stressful for everyone.

We don't have a communication book as we decided that between us it wouldn't really have been sustainable. The school have Tapestry, so I get updates on that, although not daily. Originally the plan was for them to email once a week but that didn't happen. They did show me his scrap book at the meeting, which was great and I think we get that at he end of each term.

His 1:1 has finally got on to a Makaton course so hopefully that will make it easier for her to teach him. She's been really proactive about it and has already been using the books I've given her.

I've also offered to give his 1:1 one of our old iPads so that she can use the makaton app we use at home and also be able to document his progress better (currently she only has access to a shared camera so she often misses things).

Hope your ds feels better soon open. It's horrible being full of cold.

@livpotter with you saying you use makaton is your ds non verbal or verbal but not verbal if that makes sense? My ds is the latter but they use makaton with him at school but he would rather say the word than sign it if you see what I mean.

My ds is full of cold coughing and snotty too I've shoveled some calpol in when we got back from Tesco, the whining is overtaking my brain.

Ds is yet to receive a Christmas card this year, hope he gets some before the end of next week.

Danni I would say he is partially verbal. He can use nouns and some adjectives and verbs. Mainly 1-2 word sentences. Now he's started signing (just in the last 3 weeks) he can make a 5 word sentences saying the word and the sign (I want milk please mummy). The signing is helping him to form longer sentences as he is able to put an action to the word. He's really enjoying learning new words and signs too. I was signing to him for a good 5 months before he started doing any back to me.

Sorry your ds has a cold too!

danni the whinging and acting up here yesterday was awful. Thankfully he’s settled down today.

liv he’s made so much progress in such a short time. Obviously he was soaking it up.

Liv that's great well done to your ds!

Thanks danni and open. He really has made massive progress recently.

We have had a good day today - I took my boy to see a pre-school show and was worried that it would be too challenging. He was anxious (as his soggy, chewed collar will attest) but he really enjoyed it too and was giggling away. Unfortunately we are in the land of snot too.

Liv sounds like your boy is making great leaps forward with communication. We're fortunate that language is a relative strength for my boy but he was a very late talker and Makaton helped a lot with frustration and confidence. He does not use any of the signs now apart from 'more' - that was the first one he learnt.

dimples glad your ds enjoyed the preschool performance. It so nice when you’re a bit apprehensive about something and it turns out well.

Ds back at school today. He’s a bit snotty still but I thought otherwise ok to go in. They said he was a bit subdued. He’s been getting better each day so hopefully tomorrow will be improved again.

Screen time is getting a massive issue for us; he’s having much more of it than I like. I remember reading a recommendation on the board for a book that was supposed to help. I found calmer easier happier screen time but I’m not sure if that was it. Does anyone have any recommendations for a book or tips that you’ve used? We’re not helped by the fact that he wakes so early and watches tv then but it’s also the iPad that he’s wanting more and more time on.

Open my son spends too much time on the iPad too. I have found setting a timer which counts down sometimes helps. I also read that children can get so engrossed in their screens that they literally can't hear you calling out '5 minutes to tea' etc. It suggested that you needed to enter their world to ease them out of it. So now I sit next to him and chat to him about the Youtube videos he is watching (normally of Church bells!) before telling him what is happening next. That seems fairly effective too.

Great about the performance dimples. Also really good screen time tips.

Ds also watches way too much. I find with normal films/TV he'll still interact with us but if he gets on you tube (we've banned it now) he seems to go down some kind of rabbit hole and he's almost completely impossible to engage with.

Hope all the colds are getting better.

DD also gets totally sucked into screens so we try to limit... much easier when you are at work and have childcare! The exception is holidays when she has lots to get us through airports, restaurants, train journeys, etc.

She has her rehearsal for her nativity today - she told me all the Year 1s and Year 2s are coming to watch! She didn't seem at all bothered by it which would be amazing if she does just do it. She's been so anxious about all class performances at nursery (and also for this one didn't want to say a line ... but has been belting out the songs at home and telling me her little brother has to come, and telling him all about it and the songs).

As her HT said, even if on the day she doesn't take part the fact that she's enjoyed and fully taken part in all the preparations is still a big win, which I think is the right way to think about it.

She also got into a fight the other day at school and got "punsched" ! She seemed fine about it though. Sounds like she was playing with a couple of other kids in her year trying to build a trap, and then DD was trying to get a year 2 to drive into it on his bike , so not that surprising she was met with a physical response! Anyway, school seem to have dealt with it well and DD was not upset (hopefully not the other child either - I've heard this is not his first scrape, so probably not too traumatised!) Is it bad that my first reaction was "oooh, she was playing with other children in her class, and tried to get an older child involved, amazing!"

Light I think we take the positives where we can, don’t we?

I hope the play goes ok for her today but you’re right, all the work and taking part she’s done so far is a lot to be proud of even if she finds the actual performance a step too far for now. This is the same conversation we had with ds’s teacher about his nativity.

Thanks for the advice on screen time everyone. Do they work for dhs too?

dimples on the iPad my ds is either watching cartoons on YouTube (whatever his current favourite is) or looking at pylons on google earth and street view. Interesting stuff!

Well honestly if we're talking about people needing limits on screen time and getting sucked in I should probably count myself in that too ...

Light hands up here too but I am not as bad as dh

I'd totally take that as a win light! Hope the play goes well.

I definitely use screens way too much too!

Open I feel for you with the pylons! I struggle to make comments on the bells and staircases - not sure what on earth I would find to say about pylons.

My son had his nativity today and I was terrified beforehand but he did far better than I expected. There were quite a few spells of zoning out and chewing his costume but at other points he really got stuck in and said his line more loudly and clearly than the other children. He wasn't too disruptive (if I discount the shouting out to the audience 'Hi, Dan's Dad, Hi clara's Mum etc which was quite short lived!) I felt v proud of him - he has another performance tomorrow and he's exhausted. I can't make it so I'm just crossing my fingers and hoping for the best.

Light your reaction to the incident would be just like mine - that does sound like very co-operative play too

dimples that’s amazing, well done him! Our dc have come on so much since they started school. We’re going in tomorrow to look at his learning journey books, I’m really looking forward to it.

It’s amazing what you can find to say about pylons when you have to. Follow their interests and all that