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.

Welcome Soulcake. I started out expecting the experts to have all the answers but in reality while they all have pieces of the puzzle you have to do lots of the work finding out the right questions to ask and making things relevant for your DC.

It looks like we're all making progress. Hope the EP session goes well Soul. Congrats on the ASD base placement chasing.

Here's some to help you manage the difficult behaviour chasing, dimples and open.

We're still waiting to hear whether one of the schools we're looking at can offer DS a place. I've had to push everything forward myself and with DS's anxiety flaring up and work stress I'm finding it hard to keep on top of everything .

Hello all,

So sorry it's been an absolute age since I've been on here as it's been all go. I've been reading through updates to try and catch up. Hope you're all well. (Sympathise with the behavioural issues ladies - we're only just coming out of a v difficult/trying behavioural spell which seems to happen every April for some weird reason. Leaving anywhere is also a total PITA for us too, regardless of how much preparation we do, so total solidarity with that one!).

Things here are confusing and I have a question if I may! My DS has been happy at his pre school and they have been really lovely with him although I'm not totally sure they "get" him. We had assumed he'd go there for school but we saw another local school, much smaller, and they have a lot of experience of SEN, and especially of autism, for a mainstream school. It's a lot smaller than his current school and we hadn't thought they would be willing to take him but they seem to be (they have said they'll happily take our DS if we name them. We have a draft plan now)! The big draw is that it's smaller and they have experience but I also worry about moving from a school where my DS is settled and happy and which he sees as "his" school. I'm petrified of making the wrong decision

My question is this: bigger vs smaller school. On the face of it, smaller seems a no brainer for my DS as he does have some auditory processing issues and more kids = more noise and distraction. However I'm thinking that a bigger pool of kids may mean that my DS can actually find a friend. He's a social little one and I'm really hoping he can find that friend somewhere. He has them where he is now (there are a couple of other kids with SEN who he is particularly close to) although I know that things can change by the day with kids.

Have any of you chosen a school that's fairly big (sorry, I have been scrolling back to catch up but haven't gone back far enough to answer this question myself!)

Can you tell I'm in a tizz? This choosing a school malarkey/navigating schools when your child has SEN isn't easy is it?

seekingsummer how many entry classes and what size do they have in each school?

We are going for a smaller school in a neighbouring village. They only have 18 in the reception class this year but it will be 30 in September. The school in our village is bigger and have 45 starting in September. We didn’t like it nearly as much. Ds is at a preschool attached to neither. Most children there will be going to the local school but there will be four going to the school we have chosen.

Hi open

Thank you for your message. One is 3 form entry, so 3 classes of 30 as against a one form (30 child) entry. So a big difference really.

I'm glad you like the school you've chosen. I thought we were sorted and now we're all confused!

If you find a solution to leaving places please let me know!

Seeking my son's hair pulling seems to ramp up in April/May every year - was just looking at some old pics and spotted that the bald patch was only noticeable at this time of year ...bit of a mystery here too.

I have opted for a fairly large school (60 in Reception). My 2nd choice had intake of 15 but had mixed year classes. To be honest, I wasn't really happy with any of the schools on offer. My main reason for choosing the one I did is that his cousins are there, my sister works there, neighbour's children go there so I think from a social/emotional POV it was best. Also for me practically we can walk there easily and then I can get the train to work - my 2nd choice was more difficult from school run/commute point of view as a single parent I felt that I needed to manage my stress levels too!

I have one v happy boy tonight. He is obsessed by church bells and today we popped into a church we hadn't been into before and he was invisible to ring the bell. The look on his face was priceless

Yes, that’s a big difference. Hopefully 30 is big enough to find a kindred spirit? Are children more likely to mix with their own classmates during play times? I presume the rest of the time they will not be mixing?

There’s so much to worry about and second guess. I’m reading Martian in the playground and am now wondering if we’re doing the right thing by choosing mainstream. I’m only 3 chapters in so I’m hoping there will be more positives coming in later chapters; things to suggest to the school etc.

Regarding the transitions, I’m largely winging it using a mixture of strong-arming, surfboarding (as it was described by a Mum on my course) and finding programmes to distract him with on my phone (all as a last resort, you understand). With variable success. It’s a work in progress...

I had a really positive meeting with the nursery today. His 1:1, who is doing her second week seems really good and is already working him out. He’s made some progress on his EYFS tracker since March and he’s interacting more with the other children - seeking them out to play. They are working on supporting him to verbally communicate with playmates appropriately. I’m hoping he will make more progress on this in the next half term. He wants to which is, surely, part of the battle?

Hi Dimples and Open. Thanks so much for your messages.

Isn't it strange about April Dimples? Every April we have a horrible spell of rigid and difficult behaviour and then it tails off as we approach May. Maybe it's something seasonal?

Your first choice makes total sense Dimples. If I had a school where my DS knew so many kids and relatives I'd go for that too. (Btw I've never heard of mixed age groups classes, that's really interesting. Think I'd also be reluctant to do it though).

Ahh how fabulous about the church bells 🔔 That made me smile. I absolutely love it when my DS has a moment of pure joy over something he loves. This week it was seeing the new Crossrail train. He was beaming 😊

Open- I'm hoping there will be a kindred spirit amongst the 30 kids. I gather that they pretty much stay with their classes at both schools (save that at the bigger one they'll be with all 90 kids at play time 😮).

I'll have to try that book. I'm having the same feeling about mainstream. I always thought I should at least try and start in mainstream if we felt my DS could, but I'm petrified that my beautiful boy will be out on his own and ostracised in mainstream. Or that he'll be toyed with. He's so keen to join in (I read another thread on here about that earlier which made me sick to my stomach). It's so worrying isn't it. But our kids are all making progress and they surprise is every day so you have to focus on that don't you.

That's fantastic news about your DS's progress! That must give you such a boost. Sounds like you have a great 1:2:1 there.

Our boys sound very similar. Mine is also very sociable, he just doesn't quite know how to do it! He has loads of vocabulary and his speech has come on really well over the last year (although it's still very behind for his age) but he can't seem to access it with other kids and really needs the prompts. You're right though, it is a good sign.

Our transition strategies sound similar. I'm hoping it's a (so far, very very long) phase!

My gut reaction has been to go for small schools at this age because of the "overwhelm" thing. I think it depends so much on the school, the buildings, the outdoor space, whether there is a quiet spot to disappear to if it all gets too much, etc.

Having said that I went to a small school and definitely had a bit of trouble finding a good reliable friend at primary (single form entry). I was very lucky that my best friend arrived when I was 10 and saved me from what, in hindsight, were pretty unbalanced and sometimes exploitative "friendships". And also having a bestie (even one who also wasn't cool) helped reign in the bullying.

Secondary was better. Although I was still bullied a bit the school was much tougher on it and in a bigger school (180 in each year!) I did find my little band of misfits eventually, several of whom are still friends 20+ years later.

So big schools can work for kids who struggle to socialise. But I didn't really have any sensory issues, just social, so that's another big consideration.

So hard to know until they are actually there!!

Hi seeking, glad you're ok,I was wondering how you were getting on.
We chose a 2 form entry because i had a better feeling about it than our nearest 1 form entry. I've had a couple of meetings with them now and if they are as good as they say they are, my ds should cope ok. I really have no idea if I have made the right decision, I suppose only time will tell.

Oh for a crystal ball!

My sister has twins who are still on the waiting list for ASD assessment. At nursery neither had any real friends (and weren't bothered about being with each other) now they're coming to the end of Year One they both have small groups of friends. I keep hoping that my boy has a similar experience ..

I think part of it is about space too. My boy's school has a lot of outside space and I think it's quite easy to find a quiet spot. He is getting a bit better at recognising when he needs some time to himself and just taking himself off/commanding me to

Did the Ed Psych offer any opinion? My son's Ed Psych recommended my 2nd choice but I think she understood my reasons for not going for it.

Hi Light, thanks so much for your message. Yes I was the same, thinking that smaller must make more sense, but he has done so well at his current setting that's it's hard to take the gamble even though the other school seem to really understand and have great undeeetanding of special needs.

It's so helpful hearing about your school experience. These are all of the things I have been mulling over. I'm so hoping my little one finds his tribe eventually. He is super sociable, so access to lots of kiddies would be right up his street, but he does also have lots of sensory issues and definitely auditory processing problems. Argh! So hard to know. Like you say, who knows how it'll be until they are there.

Hey liv, yes I'm been thinking how you are doing too. Sounds like you have made a good choice. I have no gut feeling which is worrying!

Ha, Dimples, please send the crystal ball my way once you've finished!

I do love hearing about kiddies who find a little group of friends (or one friend! As Light said, that thing of having a bestie makes such a difference). The bigger school has big school grounds so there's definitely some quiet spaces around. Then again, the new school realise that our kiddies sometimes need a quiet space, so they have a designated quiet space where the kids who have SEN can go if they need some quiet time.

Our Ed Psych only saw my DS's current setting as the new school came on the horizon very recently, and only after our reports we're all done. She loves the current pre school although I guess that's not necessarily the same as arecpetion.

I'll just have to hope that what we decide is right and go for it no looking back. Thanks so much everyone. And so sorry for the delay. My poor DS woke up and vomited all night. As always, sick just in time for half term. My poor boy . Let's hope it passes quickly x

It's tricky isn't it? If no accommodations are made then I think smaller must be better. But I also think a small school in a cramped space with staff who don't "get it" would be much much worse than a big school with a big space and staff who understand how to make accommodations.

I've just had a call saying a place at our first choice state primary just came up, so suddenly this conversation is very real for me. Private primary where she knows everybody, small intake, close to home but only goes to 7 - or a brand new state primary further away, intake of 60 (but she would be only the second year, so only 100-ish in the school when she arrives), but great teachers who seemed to really "get" SEN, and brand new school building next year with plenty of space including a couple of SEN rooms?

It's really tricky as we're trying to read the future and like you say, the main thing will be how accommodating a school is and you never really know how good they'll actually be until you are there.

Ahh that's a really hard one about the state primary! What would you do after 7 for your DD if you stayed with the private primary? Do you have any gut feel? They both have real plusses don't they. Do you know anyone with kids already at the state primary?

We're in a similar position aren't we? Stick with what we know or take that leap.

So I just called the state primary and actually they are only having an intake of 30 this year and next (as a precaution in case the new building isn't ready in time, as their temporary home only has room for 120). So actually that sounds amazing for us because it means the school is less cramped this year in its temporary accommodation, and they'll have even more surplus space when they move into their new building .... gaaargh!!!

But further from home (though close to work), possibly more other children with challenges (it's very inner city), new school so a bit untried. But seems so impressive and I loved what they are doing so far.

If we go for the private then they feed into a couple of schools mainly at 7. Both have assessments, so uncertain if we'd get in - but neither is super-academic so hopefully DD would be OK. Both are further from home (and work) than the state primary though. So short term the private is really tempting, but if it works out the state has a lot going for it longer term.

I have a horrible feeling I am going to want to go for the State and OH is going to want to stick private... so hard! I'm sure either are good options so it's a good position to be in really. I'm going to chant that to myself!

Stick or twist????

And of course they wanted to know today (I have pushed them to tomorrow morning... and I suppose we could take it then change our minds, though I feel shitty doing that).

Such difficult decisions for you both light and seeking. Lovely story about the twins making friends!

Funny you mention about having space. It was one of the main things that put me off the single form entry. It was so cramped and there didn't seem to be anywhere to get away. I'd just watched the Chris Packham documentary where he talks about how important it was that his space was ordered and symmetrical so had that in my mind when I went on visits.

On another note I've just done a Makaton course which was amazing. I'm starting to use it with Ds and he seems interested, which is great. Hopefully he'll have some basic signs when he gets to school.

I've just downloaded an app called MyChoicePad pro (only on iPad), which is completely brilliant. It gives you a picture of the sign, a video of someone doing it and a button you can press to repeat the word. Ds loves it. You get a free trial for 7 day's and after that it's a subscription. Worth looking at if you're doing makaton.

Also hope your ds is feeling better today seeking!

Just a quick one, I need to catch up properly.

We have a date for the ed psych assessment for the EHCP. 6th June, eek!

Light did I read that you get dd’s results tomorrow? Good luck. I hope you’ll stay with us even if she doesn’t get a dx. You always have good insights and lots of knowledge to share.

The school we have chosen has about 150 students. It has separate reception and yr6 classes but the others are mixed, so we’ll be the trail blazers there... I’m sure there are pros and cons. I believe the school in our village, while larger, also had mixed classes.

Our chosen school has a lovely garden for the reception class, off the classroom with a mud kitchen etc. The main playground is large with grass and a wooded area where they do forest school. They have a dedicated music teacher and all students get an hour of music a week. They have a strong anti-bullying ethos which, I hope, will serve us well and a buddy system. No dedicated SEN areas as far as I know but areas that can be used for quiet time. Maybe that’s something we can push for. We have a new parents evening on the 7th.

Yes it's tomorrow! That's so kind to say. I blether too much about things I don't know about is the truth...

Anyway, I will definitely stick around either way. Though everyone else seems sure she will get a Dx so I think it's pretty likely. At the moment I feel like I just want to get it done, but suspect I will be dreading it tomorrow!

Good luck tomorrow Light and good luck with the school choices.

I am now chasing the school to confirm dates for additional transitional visits (which are written into the EHCP). Doesn't bode very well ...I have also joined a parents Whatsapp group for new starters at the school - all the other Mums are expressing excitement about their kids starting school, I just feel scared and have not shared these feelings (wondering if they are being honest about their feelings or maybe it's just v different when your child has SEN)

dimples76 some of the other parents must be nervous too. I’m sure it’s just bravado from at least some of them. You may find that at least one other child will have some sn’s and the mums of summer born dc are always anxious too.

Hi open - I'm sure they must be. I guess I am just feeling like an outsider/different.

Good luck today light!

Like open said, I'm sure some of the other parents are nervous too. Just not saying it on WhatsApp. I hope they sort out the extra days soon dimples. We're having some arranged too so we can make a social story for ds with pictures taken at the visit.

So we got our diagnosis! She scored 11 on ADOS and apparently 7 is the threshold for her age, so clear cut, not borderline as I had thought it might be.

Have had a couple of wobbles but feeling OK about it I think. The report is actually really nice as it talks a lot about things she does well, not just things she struggled with. It really feels like a rounded portrait (if a bit clinical), whereas some of the previous ones have read like a litany of failings and not our girl at all.

light glad to hear you're ok about the report. We haven't had our ADOS score or written report but it made a real difference that in talking us through the diagnosis the therapist made a point of highlighting DS's strengths as well as his challenges. A complete contrast to the paed assessment reports which still make me feel wobbly.

It makes such a massive difference doesn't it? To be fair we've only had one that was really bad. I actually made some notes/corrections on it before this latest session and gave it back to them as quite a bit of it wasn't even right. I think maybe they were over-egging everything to try to justify sending her to the clinic (but given her diagnosis wasn't borderline even without all the exaggeration I'm still not sure why they needed to do that).

I read somebody on twitter last week saying that reading their own diagnosis report was really hard, and wondering what impact it had on the fragile self-esteem of teens getting diagnosed to read such negative things about themselves. It makes me feel lucky that when DD is old enough to want to read this report it will say lots of great things about her (and even the "negative" things is phrased in terms of challenges rather than impairments, etc. - they've just been really careful about language, which I really appreciate).

Must turn in now - DD has a (new) swimming lesson at 9. I feel tired just thinking about it!!