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.

Well I finished watching Atypical (dh is away so I’ve been binge watching it). I really enjoyed it but cried at almost every episode (both happy and sad tears). I guess it’s very close to the bone and stirred up lots of feelings and emotions.

I hope everyone has had a good week, I’m really glad it’s Friday!

It's been on our netflix list for ages, just trying to find a time when I'm not too emotional to watch it!

liv there’s a good chance you’ll find it an emotional roller coaster anyway. I look forward to hearing what you think of it.

V glad it's Friday too although Friday is homework day and I am a bit annoyed having looked at my son's book. My boy has been given the same homework as the rest of the class and it's way beyond him - the last two weeks I have written what we have done instead but this week it's the same again. They are all handwriting exercises and my son is hypermobile and doesn't have enough strength in his hands to write letters yet (especially within fairly narrow lines in capitals and lower case). So much for differentiation. The OT was also meant to go into school in September but has not been in yet - I'm used to chasing everything up myself and finding reminding school to chase frustrating.

Sorry for the moan - on a positive note my son was role playing schools this morning. He seems far happier at school than I dared hope.

I don't think I could cope with Atypical at the moment. I watched Wonder last night and cried my eyes out.

Dimples We got our first 'homework' this week but it's literally just looking at two books and talking about the pictures. My ds would be nowhere near writing either. Surely that would be within the reasonable adjustment?

I hate having to chase people the whole time, I think it's one of the most frustrating things for me. I hope you manage to get the OT to come in soon.

The school SALT is going to meet ds for the first time next week. So hopefully that will go smoothly.

dimples we don’t have any differentiation for homework either, I’m now wondering if it’s something I should ask them about or whether we just stick to doing it at some sort of level he can manage. I suppose some things will be easier than others. This week we have to make a picture, painting, collage or model based on their favourite part of a story they’ve been reading at school. I think I’ll cut out some pictures from Twinkl that he can hopefully help stick on a page. We’ll see how it goes!

I found this too where you can make your own traceable sheets. I’ve printed some off with his name to practice. For us the main hurdle is he has little interest in doing it.

We are still have a bit of resistance to getting ready for school in the morning. It’s very tiresome, I worry that I have 12 years of this ahead of me... But on the plus side, he ate lunch in the hall for the first time Wednesday and Thursday (I don’t know about yesterday) and he’s made friends with a girl in his class. I spoke to her mum at pick up yesterday and she said she had been talking about him and that he was her new best friend. I explained that ds was autistic and she asked me how he was getting on which was nice. Who knows how long it will last, but for now it’s lovely.

liv it’s great your school has a SALT, I hope it goes well. I got in touch with a new one this week and she’s coming during half term. Hopefully ds will like her better.

That's brilliant news re the friend and lunch Open.

Liv and Open your children's homework sounds more sensibly pitched. For the last 3 weeks it has been writing 4 letters (caps and lower case). This week we'll have a go at o and maybe c as he can draw a circle but as for g and k no way! I have decided just to interpret the homework as these are the letters we have focussed on this week so we have practiced with dotted lines, on the ipad and drawing the letters on his back - he has zero interest in mark making so I feel this is not going to be a lot of fun!

dimples that seems to lack imagination as much as anything. We have an ongoing ‘home learning’ requirement to practice writing their name but using a variety of medium - wet paintbrushes, shaving foam etc. - as well as pen or pencil. Plus phonics flash cards and 2 reading books weekly. Ds will do barely any mark making and doesn’t hold a pen properly yet but they know this and I guess we just keep trying. He’s not keen on using the flash cards at home so I try to use now/next to encourage a couple of minutes but I’m also happy if he uses the Pirate Phonics app, magnetic letters or his Alphablocks tiles.

That sounds tough on the writing. DD gets very frustrated if she doesn't get things right or they don't come out so she imagined, so writing is a bit of a challenge. She can do her name and familiar letters but won't even attempt anything she considers too tricky. We've been trying to laugh about mistakes and talk about all the mistakes we make to take the pressure off. School don't seem worried so far at least, and the "homeworks" are just reading (3 books a week plus a little pot of common words for them to learn by sight: things like "the" and "me" and "I" that aren't pronounced quite how they are written). We've managed to turn it into a bit of a game (oh no, there's "we" on the floor", or "eeeek, there's a "be" on my hand") which is silly but DD seems to like it so we're going with that for now, otherwise they are extremely boring

We've started watching Alphablocks which is quite fun though obviously not much competition for Paw Patrol and Charlie and Lola ... but some TV is better than no TV so DD does agree to watch it sometimes! I'll have to look up some of those apps to take away at half term.

Hope everyone had a good weekend.

We had another bash at letter writing - he managed an 'o' then scribbled all over it. It is so boring any way - I think a lot of the non SEN children have struggled. Reading is going quite well though and numbers are much more his thing - he loves Numberblocks but isn't so keen on Alphablocks.

Light I love your game with the tricky words - I think my son is a bit too literal for it though and it may descend into an argument about a non-existent bee!

Open I think we need to practice letters with some other mediums - at the moment it's only Cbeebies squiggle alphabet and magnetic letters that he likes. I'm sure he'll get there as he can 'write' his name in magnets but his motor skills are v delayed.

dimples, same here. He seems to be learning the phonemes (not yet blending) and can spell his name with magnetic letters but cannot write. I don’t know if he can’t write because he doesn’t do any practice or doesn’t do it because he finds it hard. Though he’s not yet doing up buttons his fine motor skills don’t seem too bad? I really don’t know.

I think your game might work well with ds Light and not even necessarily using the pun on the words. He responds well to humour so silliness would be a good thing to try. Probably be a week before it gets old though! Your dd’s perfectionism must be frustrating for her. I’m sure she’ll get there in time. They say to start doing the shapes very large at first and then work on getting them smaller. Maybe that would help as well as practicing in different mediums - paint, sand etc. first?

That's a good idea! We're going away for half term, so we might try some beach writing if the weather is OK!

I've noticed DD has started to do pictures that actually look kind of like letter formations (almost heiroglyphics - like a busy bedspread with circles, crosses, zig zags, train tracks, etc. in a pattern). Which I think might be her way of practising the pen control etc. without really being able to get it wrong like you can with a letter, IYSWIM? So I think we will encourage more of that.

Her teacher has asked for a call later today, which I think is about her joining in things and how we can encourage her to do a bit more, but it will be useful to get a chance to ask how the rest of it is going. Most of the other parents can have a chat with her in the morning but DD isn't really up for me leaving her in the playground and wandering in for a chat with the teacher - so I'm either there with DD or gone gone... hopefully she'll get a bit more relaxed about this next term, but I'm happy the teacher suggested a phone call in the mean time!

I hope the call went well Light. We have parents evening on Thurs. I’m quite nervous.

I have booked a call with ds’s GP on Thursday to discuss his sleeping. The ridiculous early mornings are continuing - 3:45 the last 2 days. Melatonin will most likely not help but I think it’s worth a try since there are no other options.

Hope that the call went well Light that sounds very positive re the mark making. Occasionally my son will pick up a pencil or chalk of his own volition but it's always circles with him.

Open that sounds so difficult with the sleep. Hope that the GP has some good ideas.

I had a message from SENCO today that the OT dept is restructuring and no-one seems to know when someone is coming out to see my boy .......grrrr.

dimples I hope you can get a date for the OT.

I have spoken to the GP and she is giving us a prescription for melatonin. I hope it does something, this week has been dire. He has been up since 3:30 today. Of course he needs to take it first. We’ve never had to give him tablets before.

Hope everyone's doing ok.

Great that you've got the melatonin open. I hope it helps your ds to sleep. You must be exhausted!

I can't quite believe half term starts tomorrow. I feel like this first half term has been a bit of a whirlwind. I'm going to ask for a meeting when school goes back as reception year didn't have a parents evening this term. I get really good feedback from the 1:1 but I'd like to get more of an impression from the teacher.

The school has just made space for a sensory room and are starting to put in some equipment and toys, so I'm hoping that it will be a good space for ds and there other SEN kids when they've had too much of the classroom.

I'm finding being in the school routine really tiring and I'm looking forward to my dd moving to the nursery attached to the school as I think drop off for both kids will be easier (it probably won't be , I can but dream!)

Hello all!

Could a long lost straggler please re-join you?

It’s been a really long time but we ended up having an eventful summer as my poor dad unexpectedly lost both of his brothers in 2 months. We were all knocked for six and posting took a back seat. I have thought of you all though, especiallly with the start of school, and have enjoyed reading through (still trying to catch up!).

I am going to keep reading now and (if you’ll have me back, pretty please) will update about how DS is doing (he’s just recovered from a bout of chicken pox, so life is still eventful!).

Seeking (who is quite glad it’s half term!)

Hi Seeking sorry for your loss and hope things get easier. Good to have you back.

Open just reading your post makes me feel tired! Hope that the sleep situation improves soon.

Liv the sensory room sounds good. I discovered today that no-one at school appears to have read the OT report that was prepared for the EHCP (which was a brilliant report ) so I'm taking multiple copies into school tomorrow - I'm definitely 'that parent'.

Thanks dimples that’s really kind of you. (I am already ‘that parent’, but needs must!). Glad to be back!

Gosh a lot has been happening reading through. It seems that all in all our kiddies have all settled pretty well, which is great!

Am not quite caught up yet (nearly there!) but am reading the writing posts with interest. DS has done surprisingly well with phonics and maths (his listening is atrocious mind), but writing is another thing altogether (although we were surprised to see that he can write a few sound using his finger on an iPad), so I’m lapping up the suggestions above.

Will catch up tonight!

Have a good night all, but especially open. I hope wake up time is a long time from now! x

Hello Seeking! Lovely to have you back. Sorry you've had one of those bits of life... hopefully things can get back on a more even keel in the run up to Christmas (Christmas! How did that happen?? DD happily announced yesterday that Winter was her favourite season because you get to put a Christmas tree up in your house! Although this year she's going to have to share decorating it with her little brother for the first time )

We had nice feedback from DD's teacher and SENCO (though SENCO had a bit of a stand off with our nanny today - I think they think she's pushing DD too much and I really don't think she is - I'm sure we do all push her too much sometimes but we back right off when we realise we've done it - and what's the alternative? Never trying anything new or tricky?) Anyway, hopefully that will blow over. But the feedback seems to be that with the exception of a couple of classes that take place in different rooms/with different teachers she is doing well, seems happy, is sharing her ideas even and doing show and tell and answering questions etc. and starting to get a bit more confident in some of the lessons like music where she really wasn't taking part much to start with. So still some mountains to climb but really, if you'd told me in the summer our biggest worries would be whether she joins in with dancing or not I would have been ecstatic!

And good luck tonight open. Is the melatonin supposed to work quickly, or does it take a while to build up/get into a good rythmn with it?

Ahh thanks Light. Yes, I'm hoping that things calm down in the lead in to Christmas, although I'm now 18 weeks' pregnant so things are probably not going to slow down too much! . I love Christmas and loved what your DD said about her tree (what a clever girl she is )!

Wow isn't your DD doing well. You must be so pleased. I think we need to push our kids a bit, as they are never going to be pushed as much by anyone else (in the right kind of way) than by us. It's a tricky balance, but like you we try and push when we can (although with a PDA boy, there's only so much pushing you can do!) and to stand off when it's not working. I'm sure that it'll all settle.

We had a really positive report this week for DS which was encouraging. It has been a massive slog to teach him anything in the past and we are lucky (and grateful and constantly worried that it will change again!) that he now seems to be engaged and wanting to learn (and is actually good at bits of it). Behaviour is still tricky at times though, including now having to work out how to deal with his tendency to play the class clown, having previously been massively shy! I think he's settled a bit too well!

Thanks for the good wishes all. Tonight is a new low. He woke at 1:55 and though visibly tired refused to stay in bed and try and sleep so we are downstairs with the TV on. If we didn’t live in a semi I’d be prepared to force the issue more (and ignore the resulting noise) but I have to consider our neighbour. I am praying he will fall asleep again but he doesn’t usually.

I don’t imagine anywhere local is going to stock the melatonin so we probably won’t get it until next week. No guarantee it will do anything either. I fear this is just going to be our life now like lots of those other poor parents whose ASC dc are up half the night

Sorry for doom and gloom. I’ll post properly at a reasonable hour.