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.

Thanks dimples.

We have turned down every extracurricular nursery activity and party this year. It just isn't worth the extra stress at the moment. My ds really enjoyed the school visit but would've definitely been too worked up to do anything after, so I'm sure you are making the right decision. It does suck to feel like you are missing out though.

I found it really interesting on the EHCP in one of the sections it nods to the fact that as a family we may feel excluded and that efforts should be made to help us access the local offer. Probably fairly standard stuff but it does feel good to have it recognised.

Light what a tough year for you. You got through it though and it must have made you so much more resilient. Hopefully this year will be more settled for you and you can give ds more of that gazing time. I think it’s par for the course for 2nd children though, as is the guilt that goes with it.

dimples I absolutely take my hat off to you. I often find things hard even with a supportive dh. You are doing an amazing job. It’s great that you know your ds’s limits but yes, it’s sad when you have to decline fun events. I really hope our kids are able to enjoy more of these things as they get older.

liv I’m glad your EHCP has recognised how tough things can be on the family. There’s a lot of compromises that have to be made and it’s nice to get that acknowledged.

We pick and choose the things that we think ds (or us!) can cope with too. Parties depend on what sort. Houses are a no no unless it’s someone we know well as he tends to want to go upstairs. Parties with entertainers are a no based on previous experience. He also refuses to sit for the birthday tea so that needs to be explained to the parents.

4am wake up today. Grrrr.

Open and Liv thanks for your kind words.

That's great that your son enjoyed his school visit Liv.

Open my son always wants to be upstairs at other people's houses too and he is always trying to open their cupboards and drawers - unless it's a close friend or family it's too exhausting

Liv that sounds like a good section in the EHCP. Did you have input from social care? Someone came out to see me, asked a lot of questions then submitted an incomplete report (it was on a standard pro forma most of which was blank) just reporting what I had said but with no mention of support. The council's case officer was baffled!

dimples my ds is exactly the same, and refuses to come downstairs too. It is exhausting!

Has anyone tried strategies such as 123 Magic on their ASD child and found it successful?

It looks like we have hit another crappy sleep phase, 3:20 this morning. It’s not the waking up that’s bothering me so much as the complete refusal to do as we ask - stay in bed/try to go back to sleep. He is only four, my worry is that if we don’t get a handle on this he may be completely impossible in later years and I don’t want that (I am catastrophising, I know). We had a friend of the family, years ago, who believed her son had adhd which was never diagnosed and she got no help with She had no control over him at all and as a teenager he used to go out at night walking the streets.

Starting to panic here, please talk me down!

Dimples, no we didn't have any social care involvement. I think it came more from the reports saying how difficult it is to manage ds outside the house. It doesn't sound like they did a very helpful job for you!

Open I'm not surprised you're feeling a bit stressed with all the early wake ups. I've not heard of 123 magic.
Would he stay in his room a little longer if you gave him something to do, like a game or an iPad (maybe not a habit you want to start but it might give you a little more sleep)?
Or maybe something visual so that he knows that it is too early to be up, I think you can get clocks which you can set to different colours so that children know when it is ok to wake up.

Open I don't know how you manage with so little sleep. I have a gro clock for my son which he completely ignored to begin with but now checks when he wakes to see whether he can get up - might be worth a go. Or can you set up a little bed in your room that he gets in when he wakes a night - just so you get more sleep. When my boy was 3 he used to wake at 4:30 every day for about six months and refused to stay in bed or his rooms - bringing him in with me was the only thing that worked and fortunately he grew out of it.

Thanks liv and dimples.

We’ve been through a couple of decent months sleeping wise so not too tired yet. When things are bad we just go to bed earlier and we take the early mornings in turns which makes it easier. Today he slept until 5:45 which was a welcome relief. We’ll just take each day as it comes. I found a social story on sleep and staying in bed which I’ll tweak and see if that helps.

We do have a Groclock which we’ve tried to use at various times but he just takes no notice of it. Maybe he will at some point. He’s never wanted to come and sleep with us, really he’s just awake and ready to start his day. He told me ‘I’ll never go back to sleep, I’ll never go to sleep again’ 😂 (‘never’ is a popular word at the moment). But really he’s exhausted and he fell asleep in front of the TV yesterday.

Oh, and I forgot that 123 Magic involves time out which I’m not keen on. I’ll give it a read anyway, it may have some useful tips.

Hello all,

As always, it's been too long since I've been on here. I'm going to jump straight back in and try to catch up that way. Hope that's ok. Also hope you're all well.

open I did read magic 1-2-3 a long time ago, but like to you I wasn't comfortable with the time-outs. They just don't work for my DS. Actually, the only thing that's made any difference to the listening has been going easier on him when he's totally refusing to do what we say. It feels counter intuitive (and my internal voice is also saying that we will end up with a teen that we can't control) but he's so stubborn and has PDA so butting heads doesn't work. I do worry though that I'm making that rod for my back that I keep being told about and ignoring.

We had 6 months of night waking where DS was wide awake at 4am singing and happy as anything for at least an hour and a half. Really hard to keep him quiet at that time and we were paranoid about our neighbours (who all pretended they didn't hear anything god bless them). We were broken so I feel your pain. Suddenly it just ended and it coincided with a real change where DS actually tells us when he wants to go to bed now (instead of it being a fight). I wonder if it's some weird developmental thing on the way to slightly better general sleep (not that my DS is a wonderful sleeper now (he's not!) but he's not dire any more!).

As for me, we've had a bit of a time of it. Last time I was here we all had an awful virus that lingered for over 2 weeks and took us all down. After that, just as he got back to nursery my DS got concussion after an accident on his scooter and his speech went all slurred and he wasn't walking properly. It was a horribly worrying time but he seems to be better now thank goodness. And last week my beloved uncle passed away.

On a happier note, we managed to get our 1:2:1 provision increased from 21 hrs to nearly full time. That's amazing but our EHCP is still not finalised and we're still not sorted on schools. Light are you sorted now?

Hope everyone else is good and kiddies too

Sorry you've been having such a tough time seeking but great that your EHCP is finally being sorted!

Open My methods seem very similar to seeking's. Time out's did not work for us at all. I also let a lot of stuff with my ds go, unless it is dangerous or nasty. I have found that using this approach he does actually seem to listen to me more when I ask him to do something as I don't do it as often.

I read someone else on another thread talking about not making their child apologise directly after the fact as it was too much of a demand. This really hadn't occurred to me until I read it (and I now understand why my ds gets so upset about it)...I guess you learn something new everyday!

Probably making a rod for my own back too!!

Thanks Liv ❤️

Yes it's a relief that we finally have some EHCP movement. September is getting here in a hurry so it feels weird not to be totally sorted yet.

It's good to hear we have a similar approach. I second guess myself so much that even when something instinctively feels like the right thing, I'm still wondering about that rod! Ah well we'll just have to watch our backs for now 😊

Gosh my DS hates that too re apologising. I do find it hard sometimes to separate the "conventional" approach that's ingrained in us all (e.g. you do something, you say sorry) and what's realistic and useful/understandable for my DS. Especially when speech is already an issue for our children, so lots of the usual social conventions just don't make sense.

I had this yesterday with some family. They are quite "old school" about manners (although they're quite young) and all have children who are super well behaved and extremely polite (no bad thing at all). My DS said "I don't want to eat now" when they were trying to give him dinner (even though I said he wouldn't eat as he'd be too excited around all the kids). To me, that's good communication and shows how much progress he's making and I just added a "thank you" at the end, whereas for them that was rude, and although they didn't say anything I saw the flinch in their faces. I don't know, maybe it's me, but it just feels like a different world, and after an age I've finally stopped trying to fit us (and especially DS into it). It's still hard though x

Ps how is your EHCP going liv? Sorry I'm off the boil on where everyone is at. Hope it's going well

It's hard with manners isn't it seeking? I also worry I lose touch with what other people think is rude/not rude. We are just so happy when she can communicate her needs and/or feelings and want to encourage that, not squash it. Exactly how she does it we can work on, but I'd rather that she communicate (even rudely!) than not communicate. You do also just have to get a thick skin and try to care less what people think, which I am not good at.

We finally made our school decision (I say finally, it's only been about 2 weeks but it feels like an eternity and I'm still feeling wobbly about it). We decided to stay at the private she is at. The staff ratio is just so good (4 staff for 19 kids in reception) and she knows a lot of the kids/we know a lot of the parents.

It will mean we have some hard choices at 7 but they are not bad choices, and we'll know a lot more by then about what her challenges are and what support she needs, which hopefully will help us through. If all else fails we can always move house at that point to get closer to the right school.

I know we're incredibly lucky to have the choice but I still feel quite upset about turning down the state school. I still feel it may well have been better, and it feels really hard to send her to a school that a few months ago were saying they didn't know if they were best placed to support her. But in the end actions speak louder than words and they are now being very supportive, and it would mean she can keep the same SLT, same classroom support, and even her current teacher is moving from pre-school to reception, so she'll even have the same teacher. In the end we just felt that the "keeping things as they are" option seemed low risk, whereas changing now felt like a big risk for potentially a big reward, but the rewards would mainly come at 7 and beyond, and we really have no idea what her needs will be next year, let alone at 7-11...

Anyway, it's done... feeling wobbly about it but I think after a few days I'll just be able to go positively forward with the choice we've made. And it definitely makes life practically more straightforward for the next 3 years, as the private school is just around the corner from our house, whereas the State is a bus ride away...

Glad everybody's EHCPs seem to be coming into shape. I need to sit down and read some of those "preparation for school" lists to see what we should be working on next. The main thing I worry about is just resilience to people not behaving in the expected way, things not going to play, children being mean, etc. but I have no idea really how to plan or prepare her for that.

I think that sounds like great progress seeking, I would be really chuffed if my ds had managed that! Manners are all part of understanding social cues and rules so it's always going to take some time for our kids to learn. My ds is just starting to use please when prompted, most of the time he still gives a kiss instead.

Thanks for asking, our EHCP has been approved with funding equivalent to a full time 1:1. We're quibbling over the wording atm and I've got a really annoying caseworker who refuses to answer any of my questions and is almost impossible to get hold of. But we will get there in the end hopefully!

That's great news on the school decision light.

We are going to look at a special school that was recommended to us tomorrow. Still have no idea how I feel about skipping out mainstream but I guess I will have a better idea once I have looked at the school.

Seeking that sounds like v traumatic accident - v happy to read of the full recovery. Sorry for your loss.

Light so glad that you were able to choose your school. Good luck tomorrow Liv.

First school visits for my boy have gone v well - he didn't want to leave. I'm meant to leave him there for 90 mins on Thursday and I am already feeling nervous. One challenge at a time I guess. I have a team meeting at work tomorrow and today a team member who I have always thought of as a friend sent an email to the team implying that I am not a team player. I did not reply as I was feeling too angry - I'm worried about keeping myself in check tomorrow.

Thanks dimples.

Really glad your ds's school visits have gone well. Good luck at your meeting today. I hope it works itself out!

I'm sorry about your colleague being an arse dimples. I would struggle with that. I hope the team meeting goes OK. Could you talk to them before or do you think that would make it worse? Anybody else in the team who you could tell you were upset, just to give you a bit of moral support in the meeting?

Really hope the school visit goes well Liv, and good luck getting the EHCP finalised. Sorry your case worker isn't being more supportive...

Hi all,

Thanks for your lovely messages.

Light, yes the manners thing is so hard. Like you, I am just delighted at any interaction and communication from my DS as he finds it so hard, and feel that manners will and should (hopefully!) come later. It's hard when people don't get that just giving a response is amazing. I will also keep working on my thick skin!

Well done on the school decision! Sounds like a great choice for your dd and I'm sure that your wobbles will be gone soon. Reading your message gave me a wobble of my own, as we have (I think!) almost decided on the out of borough school! It will mean a 45 minute journey to school and that is a big consideration and I am really worried about whether that is totally crazy and will mean that my DS will miss out on the social side of things, I will never be able to properly get to know the parents and also if it will generally be a slog for us all. It's hard not to go for it though, as it has a great reputation for doing well with kids with ASD, it has a very supportive SENCO and the Head has been emailing us asking how the EHCP is going and if they can do anything. I am still petrified though and I read about your school around the corner and it being the least disruptive option for your DD and thought "argh were making a massive mistake!!" Cannot wait to have the decision done to be honest.

Liv I hope the visit goes well today. Hopefully it will just give you an idea of what is out there. I regret not seeing some special schools now that September is approaching.

I loved what you said about your DS giving a kiss to say please. That is so lovely! You will miss that when he just says please. Great news about the EHCP but very annoying about the caseworker. Hopefully things will get moving soon.

Dimples urgh, so sorry about your colleague. That's particularly hard to take from someone you consider to be a friend. I hope that the meeting goes ok and I'm sure you'll be great. At least you know in advance what he's up to so you can deal with it at the meeting. Best of luck x

Gaargh I'm sorry seeking... I'm just post-rationalising it to myself. And in fact although it's very local NOW, choosing this option means DD is probably heading for a 40 minute bus journey each way to/from school and me not knowing the other parents from age 7. I'm basically trading 3 years of very close and 4 years of very distant, rather than 7 years of medium distance.

I'm going to work as hard as I can to make and keep local connections on the side after she moves on from the local school, so we hopefully still have some options for weekend play dates etc. Hopefully your SENCO and Head can also help with suggesting other kids more in your area who might be good for playdates if you need help with that as DS gets older? And if there are other ASC kids in the school that should also make it easier for DS to fit in and for the other NT kids to be accepting of difference?

I also think if our kids are going to find the social side exhausting it's also going to be important for them to just have down time after school and at the weekends. Honestly I always found playdates quite hard work and was never pestering my parents for them, and I suspect our kids may turn out to be the same. I just liked hanging out with my family at the weekend, watching kids TV, F1 or old movies, playing in the garden with my sister, playing on the computer (spent hours and hours coding games on an Apple II for my sister to play - that dates me!!), maybe going out for a walk somewhere. Nothing social!

seeking I’m sorry you’ve had a rough period. Glad your ds is better after his scary accident, it must have been so worrying. Especially as regressions are a real concern with ASD. I’m impressed with his scooter ability though, ds is not really interested in his and would not be safe to ride them outside of a park (no danger awareness!). Great your 1:1 provision is higher and that you have the option of an ASD unit. I don’t think there are any here though there is an ASD specific school over the other side of town, approx 14m away.

liv I totally agree with manners. All the specialists I have spoken to say it’s not important for our kids right now and to focus on their communication. Ds sometimes does say please & thank you (sometimes the wrong way round) and we do remind him but don’t make an issue of it. There are bigger fish to fry!
How was the school?

Light great you’ve made a decision on the school. I agree, no sense in making a change if the school has stepped up and can meet her needs and she is already settled there. I can’t remember if you’re applying for an EHCP?

dimples great your school visits have gone well. Ours start on the 2nd. I am nervous!
It was crappy and, IMO, unprofessional of your colleague. I hope your meeting went well. Well done for not replying in anger, you’d have only regretted it.

Thanks for your kind messages. The meeting was the worst work meeting I have ever been to and my colleague is definitely not my friend but at least I know where I stand!

Superficially my son has very good manners - always says please (but this can be shouted 'I said PLEASE' and thank you. He can give what sound like v heartfelt apologies e.g. I am so sorry for hitting you Mummy I will never do that again (then hits me a second later).

I think we've all struggled with school choices - I guess it's a bit too much to hope for a perfect fit. We're off to school tomorrow to meet an OT there to discuss adjustments so I hope that, that is useful.

As for us. Ds’s sleep has settled back to (his) normal. Such a relief. He is doing well at the moment, good behaviour at nursery and only minor incidents here. For now anyway, things can change quickly! We are waiting to hear about the EHCP following assessment. Should be in the next week or so.

I am reading 123 Magic and finding it interesting. Only part of it relates to the time out, or ‘stop behaviour’ technique. The rest is concerned with ‘start behaviours’ for which is suggests several different methods. I’m not finished yet but I think there’s definitely useful stuff to try. I also think there are some merits from the ‘stop’ section: being firm and clear, no emotion and not over explaining/getting into a prolonged discussion about why they shouldn’t do things as they are just not listening and it just winds everyone up. He also says there’s no point making children apologise afterwards (time out) as they don’t mean it and it stirs up the issue again. Most of the issues we have with ds relate to the ‘start’ issues anyway.

Sorry, that was a bit garbled. Am rushing to finish my post!

Cross post dimples I’m sorry your meeting was awful.

Open I am definitely guilty of giving overly complicated instructions/ explanations. Recently I have been telling my boy to 'freeze' a lot which I find is a bit more playful and covers a wide variety of my boy's misdemeanours plus I am also using for musical statues. Seems to work particularly well when he is about to throw something (one of our biggest problems).