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.

My son has FT 1:1 and the total cost of the EHCP provision which includes extra prep time for the class teacher is £21,654.40 so the school gets an extra £15,654 from the LA, we're in the North East.

On a bit of a high today after a meeting with my son's teacher this morning - I couldn't sleep last night as I was so nervous. I think that she really understands my boy and she was v positive about how he has settled at school. I think one of the highlights for me was hearing that over the last few weeks he has started engaging in imaginary play with some of his classmates - this has amazed me. He came into the classroom with some of his class as the meeting was ending and even though I was there he stuck to the normal routine. I felt super proud.

Now, we just need to get toileting back on track ...

That sounds brilliant dimples!! I think DD would have been right over or just confused/upset, so brilliant he managed to carry on with what he was supposed to be doing! So great when you have confidence that the teacher "gets" your child!

That's so great dimples!

dimples that’s great news, you must be so proud of him and happy with the school

We had our parents evening too. All seems good! Her teacher is lovely though, I can't imagine her really saying anything else. Still nice to hear though! I think she is just the kind of person DD needs - very positive and good at positive distractions if DD starts to get in a tizz - I hope we're as lucky again next year as I don't know the Yr 1 teacher (Gaargh... why can't I just turn my brain off and enjoy this year instead of worrying about next?)

We had gone back to very difficult drop offs so our nanny has started taking DD to school in the morning and she is now dancing into school, happily hanging up her bag, cheery goodbye and off to play with the other kids (with me I have to do it all, then she has to stand in exactly the right spot with the TA and cling on to me crying...) Sometimes I feel like I get DD so well, but other times it's a bit of a mystery even to me! Anyway, it's great she is having better drop offs but I love taking her to school so really want to find a way to transition back to me doing it... sigh well that's a challenge for next week. Hopefully if she settles in to doing it happily then we can swap me back in without her getting upset again.

It's funny, I never really think of DD being "hard" to parent exactly because she is just herself and we parent how we parent and it all feels quite natural. But then this morning DS, who is 20 months, saw me refilling a hand soap dispenser and came up to me and did the actions for washing his hands, and then proceeded to wash his hands pretty much by himself... and I thought back to teaching DD how to do it laboriously step by step for months and having to remind her of each step when she started pre-school at 2.5 and I thought "hmm... yes... maybe parenting DD is a bit more work"!

I don't mind it, obviously, but it does just bring things home a bit. DD is my "normal" and DS keeps surprising me!

That's great that parent's evening went so well light. Yes it is very hard not to worry about the future!

I often think that ds is easier to parent than dd. Ds is very predictable in his unpredictability. Dd just seems to fly off the handle out of nowhere.

It's similar here in terms of learning though. Things that take lots of time and effort to teach ds, take dd no time at all to learn. She does also listen (most of the time) and it nice to know that what I'm saying isn't falling on deaf ears the whole time.

Oh yes the listening! Well, DS also doesn't listen at the moment, but I'm hoping that's because he's 1 rather than because it's a permanent state.

DD actually put her shoes on the first time I asked the other morning and I spent AGES hunting for them before I realised they were miraculously actually on her feet .

That made me giggle! I think I'd probably fall down from shock if ds got his own shoes on!

My new favourite thing he does is when he asks for something (toast, milk etc) and I've bought it to him he says 'well done mummy'. It makes me smile every time.

Awwwww!!!

So glad to hear that your parents evening went well too Light. That's exactly like what I would have done re the shoes.

Liv I love the well done comment!

We're waiting for a date for my son's replacement grommets op so I can't tell sometimes if he has genuinely not heard or is ignoring me and I get told off (by him) if I raise my voice

Do you get reading books / phonics letters / words home for your dc?

Just wondering how your dc are all getting on with it.

Ha. We do danni but he refuses to do any of it outside school at the moment. Well, we can read the reading books with him but he won’t tolerate any pointing or sounding out words etc. or look at his cards

Light so pleased your parents evening went well and that the teacher is lovely. Sorry drop offs are worse though, it’s a shame you can’t take her at the moment. Hopefully that will change soon.

liv am loving the ‘well done mummy’, it’s so cute.

dimples I hope you get the op date soon, though I guess that will bring its own set of worries.

How did all the dc cope with CIN and any dress down days? Luckily ds is ok with this but he did refuse to go in the supermarket because someone was dressed as Pudsey collecting money in the foyer. People dressed as animals etc. freak him out.

He got a certificate in assembly today for ‘great improvements in his learning’ which was so nice.

His OT was in this morning so I’m looking forward to getting her feedback.

I have a cold and didn’t sleep well last night. Looking forward to bed. Apologies for staccato paragraphs.

Danni we have reading books and then homework once a week which so far has been letter writing practice.

We practice reading every day and I'd say 80% of the time he's happy to do it. We have abandoned doing the homework - it isn't differentiated for him and way too hard. They're focussing on 4 letters/sounds a week so I do other activities with him around the 4 - he enjoys an app little readers where you can trace letters with your finger tips.

Open what a great certificate. Have you had to go private for OT or is that NHS?

Great about the certificate open. I can't say we've been affected by CIN at all. I'm not surprised your ds is freaked out by people in animal costumes.

We get reading books every week. One fun one and one ORT. No words in the ORT ones yet as we are supposed to be talking around the images, which ds will do sometimes. We don't get any other homework.

We get letter sounds each week, & some sight words recently, he knows his letters and the sounds they make he's quite spikey with that he knew his letters at 2 aswell as his numbers up to 10, but putting the letters together to make a word or getting him to sit long enough to participate he really hasn't got a clue about blending the sounds to make a word.

He can't really hold a pencil properly but he's getting better with that just needs to be told 'hold it properly' and he'll change to the correct grip, he drew a letter t couple of weeks ago and won't now so not sure what thats all about.

I've put my ds on an OT sensory integration waiting list it's private unfortunately as there is no nhs OT here for asd, this is run by banardos I thought it was a charity so assumed it was free or cheap but its £550 for the assessment then the actual OT work on top of that the waiting list is 8 months long we have been on it about a month now the assessment is 6 weeks, he will be observed at home, school & the sensory centre and you get a really detailed report outlining all of the issues & they make some recommendations free of charge to home & school to implement & then you can pay for the OT sessions afterwards but you are not under obligation for the treatment afterwards iyswim.

Still waiting on ds dla renewal, he has been on hrc for 2 years, I sent the renewal off 7 weeks ago & still not heard. I'm hoping they add mobility to it now he's nearly 5, if not I'll have to appeal that bit heard they are being a bit ruthless atm so really looking forwards to that!

Also wanted to mention in case it's useful for any of you, I applied to our council for a blue badge, I sent in lots of reports that confirm about his asd and associated problems & a report to say he is a full time tip toer & he has to wear piedro boots and have serial casting done and he falls a lot, i was expecting a fight but they have given him one in less than a week! So I'm pleased with that hopefully make life easier

dimples it’s private. He doesn’t qualify for and OT or SLT on the NHS.

That's interesting about the blue badge danni I thought you could only get one with high rate mobility DLA.

Liv that's what I was led to believe but apparently it's at the councils discretion, I had heard April next year is when the autism blue badge comes in & the council verified that but thought I'd apply now anyway with some evidence, they didn't request evidence but wanted to send some in anyway.

That's good on the blue badge danni

DD gets 3 reading books a week (mainly for us to read but she reads the speech bubbles). She tends to guess rather than read first time but she does get there in the end. She gets 2 new sight words in her "word pot" a week which is quite good as we just get it out a couple of times a week and try to make it silly/fun if we can).

She's not so keen on writing but actually we just got her some thin bright coloured whiteboard pens and some of those Collins wipe clean books for learning writing (which come with chunky pens that are very hard to use) and the combination seems to go down well. She mainly traces but I think it's building her confidence so I'm happy with that.

How is life treating everyone?

My boy is constantly singing at the moment - he has really enjoyed practicing for the Nativity, whether he enjoys the real thing is another matter!

We foolishly braved the school disco on Friday - it was a sensory nightmare! The music was v loud (too loud for me), the room was v dark and there were lots of kids running around. I did suggest to my boy that we left but he was quite determined to stay. We spent most of time by the hatch where they were serving food as this was brightly lit or just outside the hall. To be honest for a lot of the children there (it was just Reception and Year 1) it was difficult to cope with. What shocked me was my boy's interactions with the other children - it is clear that some of the girls see him as a baby/toy (he is v small and has quite dainty features) and they kept trying to manhandle him - lifting him up, trying to pull him on to the dancefloor etc. I was so impressed with my son - he said clearly to them 'stop it, I don't like it' unfortunately, however, they ignored him. I was a bit disappointed that none of their parents tried to correct them. I had to speak quite firmly to the most persistent girl.

That sounds very frustrating dimples but well done to your ds standing Up for himself and making it through the disco.

Ds is going through a not being able to get to sleep phase. I'm hoping it's not going to last too long. Otherwise all seems ok.

He has his class assembly next week and I can't decide whether to go or not. I want to see him but I don't want him to get super stressed if he see me then I leave.

Thanks Liv

I went in to help at school a few weeks ago and my boy was very upset when I left but his TA said he calmed down as soon as I was out of sight. Afterwards he seemed v happy I had been there - it's always so hard to tell though isn't it

dimples well done for braving the disco. What a shame some of the girls didn’t listen. Did you mention to his TA afterwards? Ds’s school had a disco but we didn’t bother going. Apparently it was complete with foam!

When is the nativity? Ds has been joining in all the preparation for his. I’m hoping we get to see him on stage for at least some of it this week!

liv I hope the sleep has settled down by now. Did you go to the assembly?

Ds is doing pretty well at the moment. We met with his teacher last week and it was all really positive. He’s made a lot of progress in one term. He’s getting very excited about Christmas too.

Thanks dimples that is good to know.

Wow foam at a kids disco! I'm glad your ds is doing well at the moment Open.

Sleep has settled a bit here. We went to centre Parcs this weekend, which was lovely although ds refused to go to the pool. I think being outdoors most of the day settled him down a bit.

His assembly is on Friday, I'm still undecided! He also has an assessment day that day, so I would really hate to throw him off.

We have the nativity on the 18th. Apparently ds is going to be a horse, good luck anyone trying to get him into a costume!

What’s the assessment liv? Glad sleeping has settled. We’ve had 4:30 wakes today and yesterday. Grrr.

We watched the old Louis Theroux programme on autism last night. It was interesting, if a bit hard to watch. Most of the children had fairly severe issues but one 17yo was doing really well, having been non verbal at 6. He was being transferred from a special school to mainstream with a unit. He had taught himself Japanese and Hindi and written a novel. There was a funny moment when he found Louis’ Wikipedia page and was reading out all the things he had done and Louix was trying to get him to close it.