Nursery concerns - worried and confused

[TippetyTapWriter]

Hi, don't really know where to start with this, just feeling very confused and worried.

Ds (3y 8m) started nursery in September doing his 15 free hours. Within a couple of weeks they asked us in for a meeting and said they had some concerns. He was basically unable to cope with other children, with transitions, with routine and was having huge meltdowns over everything. They put some strategies in place e.g. a now/then chart and egg timer and said they'd keep an eye on it. Recently had another meeting to review. Things have improved slightly but he's unable to cope if they withdraw the strategies and is unable to take turns or share with other children, not interested in playing or making friends, lacks eye contact, is controlling and wants everything on his own terms, and is very literal and unimaginative. They brought someone in to see him who agreed and he has now been referred to the local SEN type service.

But he's not like this at home or with me. He never has meltdowns except for what feels like normal whingy threenager stuff. He's absolutely fine with transitions. Totally fine with eye contact. He loves going to new places, is fine with changes of plans. Gets sarcasm and humour and facial expressions. Loves supermarkets, busy cities etc. Doesn't seem sensitive to any sensory stuff though he does like to chew on toys. He's really imaginative and creative. Always coming up with his own songs and stories and play scenarios etc. He was a bit high needs as a baby, a bit quirky, super smart, obsessed with trains (also fascinated by lots of other things), a bit unruly and boisterous. But very social, interested in other children though clearly a bit clueless at trying to play with them. I always put this down to lack of practice as I've never managed to make mum friends and arrange play dates (I have social anxiety, cue massive mum guilt!).

Of course everything nursery are saying sounds like ASD though they are tying themselves in knots to avoid saying so (which I understand as he has no diagnosis and they can't diagnose). But there's no explanation from them why they think he's struggling or what I need to. He will have another assessment but I couldn't work out what happens next. They haven't mentioned any sort of diagnosis being required but they have said he won't cope at primary school without new strategies and extra funding for classroom support. Surely school won't do any of that without a diagnosis? I'm just going in circles wondering if he does have ASD. If he does I want to know. Perhaps that's the next step after this second assessment though they didn't say so.

Don't really know what I'm asking. But I guess: what should I be doing? Is there anything I can do to help him socially etc? Has anyone been through this and how did it turn out?

He's such a smart, funny boy. It's so hard to imagine he'll struggle at school :(

Just on what to do while you wait: I haven't read it yet (still waiting for it to arrive) but you could probably do worse than reading the ESDM parent manual. Also the Hanen TalkAbility book as these can form the basis of early intervention that you can do yourself (particularly if you get some parent training).

Also I agree with the recommendations of How to Talk So Little Kids Will Listen, and Philippa Perry's The Book You Wish Your Parents Had Read. They both make interactions easier.

I find that on days when DS is tired, he isn't massively interactive. So we do favourite games that work on turn-taking, we bake cakes, we go to the park or swimming. I try to talk, make eye contact, get down right at his level, as much as possible but I also just give him space. For us at the moment that involves him watching Minuscule while I get meals ready, and while he eats, and having toys at the table. I think we need to do less, possibly dropping playgroup and one day of nursery, to give more time for 1:1 interaction.

TippetyTapWriter if your ds doesn’t always respond to his name or when you talk to him, definitely arrange a hearing test with your GP. We did this following our application for the early help assessment programme. I was 99.9% sure his hearing was fine but it’s another box ticked and will help move things along.

For us it involved ds listening for sounds and then when he heard it putting a peg figure in a basket. I’d say he was only about 50% co-operative (he was very anxious about being in the room at first) but it was enough for them to be sure hearing wasn’t a problem.

I would second (third?) the "How to Talk So Little Kids Will Listen" recommendation. I've not read all of it, but I think I got the gist (my other half keeps telling me I'm doing it, so I guess I must have read the key bits!)

Honestly I think early intervention is a bit over-hyped. Don't forget there are lots of people out there (especially in the US) who make a lot of money out of convincing parents they have to "intervene" early. The most important "intervention" is from you, just finding ways to connect with your child and get into his world, and there's no reason you can't do that without a Dx (it actually sounds like you are already doing a lot and nursery is doing a lot of the right things with now & next, etc). If he learns that it is fun to include you, in due course he can learn that it is fun to include other people too (but if our experience is anything to go by it will go in the order of (a) you, (b) other closely related adults, (c) other adults e.g. at nursery, (d) older and younger children, and only some time after that (e) same age children).

Same age children are just hard. They have very specific expectations of what is expected behaviour and how to play. Older children will happily "mother" without being too precise on how a younger child of your child's particular age should behave, and younger children will happily be led/entertained. I actually think playground is perfect for early interactions and it's where I was able to support my DD in learning early interaction skills (a lot with slightly older or younger children). Really I think it's just model model model. So if your DS is interested in another child, stand next to him and say what he would ideally say to show him how it's done (e.g. "hello" or "what are you playing with?"). If he manages to say something even vaguely social or appropriate then praise (in a way he likes - my DD really hates over the top praise). See if you can make any suggestions that might lead to a fun interaction (e.g. if you've brought bubbles or chalk, see if they want to play with that together - or at least side by side). If he manages to play/interact with another child say you are proud of him, pick out anything he did that you thought helped extend the play (e.g. "it was really nice when you showed that boy the drawing you were making", "I really liked it when you asked the girl what she was drawing" or "it was great when you gave the boy a turn on your scooter" or whatever).

But your DS is still very young, and it sounds like you are doing all the right things. There are huge amounts of turn taking even in just getting ready for lunch (e.g. hand washing can be a kind of turn taking: Mum turns the tap on, then DS gets his hands wet, then Mum pumps the soap, then DS rubs his hands together ... maybe talk about it in a turn-taking kind of way so he can get the rhythm of it?), making the lunch (could DS put his and your cutlery on the table?), baking a cake (there are bound to be things DS can do and then he has to wait while you do something).

He really sounds very like DD - she also struggled with turn taking at that kind of age because she would lose interest and start doing something else once it was somebody else's turn, rather than because she couldn't tolerate it being somebody else's turn. But like your DS she would also be generous with us and her brother, and she did get there in the end. Really we just had to wait until she was old enough to have an interest in the game itself (e.g. now she is interested in reading and counting she finds maths/phonics games quite motivating). But any kind of interaction with anybody is good and builds a positive memory for your DS that interactions can be good/fun. It doesn't just have to be formal games.

And don't give up hope on the social side. Honestly from what I see in the playground at least at Reception level screeching around being boistrous and spouting train trivia will fit right in. A few of the (I assume NT) kids at DD's school have special interests that she will come home and tell me about (in particularly I now have quite a few random facts on basking sharks via one of the girls in DD's class, and on snakes from one of the boys). I'm not saying there won't be tough times or he won't do things differently, but so far I've been pleasantly surprised by how accommodating the other children are of DD's quirks, and how many of them have their own quirks anyway.

i agree with LightTripper - don't panic about early intervention. If you had the opportunity to go to High Table dinner in an Oxford or Cambridge college it would be full of people who might qualify for an ASD diagnosis, but who didn't get early intervention because it wasn't a thing then when they were children. What they did get, probably, was a lot of early engagement from a parent at home (because parents at home were a thing then). It's important to note that the screaming headlines "autism cured by XXX therapy in 50% of children!" often are totally overblown - it could be a study of 6 children of whom 3 moved from a diagnosis of severe autism to moderate autism, or 3 moved from mild autism/Aspergers to PDD-NOS - and they might have done it anyway as ASD is a developmental delay rather than a fixed inability to learn.

That isn't to say early intervention techniques are all rubbish and you ignore them - there's good evidence that ESDM and ABA do work, with appropriate caveats about different therapists, different children, different starting points, and different ideas of what constitutes progress.

ESDM is about revving up joint attention skills to the point that they become far easier and then the child ends up noticing a lot more socially and is then able to apply learnt social skills naturally - it is probably the therapy that could offer your DS the most.

ABA is more hardcore back and forth behaviourism (starting point of behaviourism: BF Skinner teaching pigeons and rats to do stuff like find their way out of mazes) and works less well on children who have the capacity to deliberately refuse to engage because they're bored.

Thanks everyone. So much useful information. I sound like a stuck record but I really do appreciate it.

I have bought myself a copy of How to talk. Only had a chance to read the first few pages but I like the techniques suggested. Some I’ve been doing already more or less - eg using fantasy instead of a direct no. Ds loves imagining so any time he asks for something impossible (a steam train for his birthday etc) I would start saying things like ‘wow, what colour would it be?’ etc. Always felt guilty for distracting rather than addressing the question but apparently it’s a proper technique so I’ll stop feeling bad about it!

lighttripper I think you are so spot on about peers being the hardest! With adults ds seems fine, albeit overly chatty and affectionate (eg will hug the plumber etc and say he loves him!), and doesn’t seem to have that natural ‘respect’ (for want if a better word!!) that other children seem to have for grown ups. But with peers he is like a different child. Though to be honest I don’t blame him hand the time! Eg today on way to nursery we saw another boy who goes. I said ‘hey it’s X’ and ds went over of his own accord to say hi (proud parent moment) and the boy just started hissing really loudly. Ds was a bit stumped and seemed to conclude the boy was telling him to be quiet (he wasn’t, it was more like an aggressive snake sound than a shhh) because I could hear him saying, a bit confused, but I don’t want to be quiet! Honestly, I totally emphasise with his confusion. I had no idea what to do either! I just feel bad that when he does try it doesn’t quite go right somehow.

Thank you all for the reassurance about early intervention. I will book a gp appointment about hearing. He does ignore us and ask us to repeat ourselves a lot but I know his hearing is good normally (can hear the rustle of a biscuit packet from anywhere in the house.). It wouldn’t surprise me though if he had trouble picking voices out against background noise because I can’t do this either.

lighttripper thank you it’s so good to know he might fit in ok at school. To be honest this is really my main worry. If he has asd then fine, ok, I’m sort of coming to terms with the idea, but I just worry so much that he’s going to have an awful time at school. I absolutely hated it, right from reception through sixth form and even uni nearly gave me a break down though it was better than what came before! I so so want him to have a better time!

I totally feel you on the school thing. I was OK in year 1 and 2 because I was oblivious. But then looking back it was quite painful until 6th Form when our (large) school let us choose classes and I could filter myself into a small group of fellow freaks and geeks of various kinds.

But DD so far seems to be doing much better than I did. And I'm hoping understanding that her brain is just different will make it easier for her to understand when things do get tough and confusing. FWIW we have friends of friends with 2 autistic girls and they both have friends at school (late and mid primary). They have their issues but I think schools are better at fostering acceptance of difference than when we were at school.

Plus even if school is tough your DS will have what I had which is a totally accepting and accommodating home life.

Honestly I know it feels endless but our experience has been Dx and starting school have both been so much better than our fear of what they were going to be. Uncertainty is the WORST. Things will feel much better once you know what is going on.

Thanks lighttripper. It’d be nice to think things have moved on, I’ll try to be optimistic for once in my life!

Can I ask how your dd was at preschool/nursery? Did she enjoy going? Ds still complains every morning that he doesn’t want to go. It seems to be getting worse. It makes me worry with school starting in a few months that he is still so reluctant to part from me etc. He says he is excited about school but he doesn’t understand that it will be like nursery but more of the stuff he doesn’t like (no mum, longer days, more kids, more rules) and less of the stuff he does like (free play and running around in the garden). I guess I worry about the sensory/social overload of being around so many people for so long every day. I find it exhausting now and I’m a grown up! He’s exhausted after just a few hours at nursery.

She has always seemed to enjoy it once she got there. I think drop off was easier for her at nursery as I could take her right into the classroom and leave her doing something. But once she had a routine for school drop offs she's been fine again. Definitely a bit of an adjustment though, and she does get very tired!

Thanks. It’s reassuring that even if drop off isn’t always plain sailing your dd can still get on ok at school. Our drop offs at nursery are getting worse!

Lots of things seem to be getting worse really. Finding it all a bit overwhelming and worrying, especially after the last few days. Feel like I’ve gone from thinking ‘maybe ds isn’t 100% nt but still gets on fine’ to really not knowing how he’s going to cope at school at all.

He suddenly seems much more distressed by noise. He’s never liked dd crying or hand driers but now he is actually getting quite distressed by things that didn’t used to bother him like children playing loudly, ambulances, the Hoover etc. Has anyone experienced noise sensitivity getting worse? I am planning to get a hearing test done but I think his hearing is probably fine. He went to a party recently and had his hands over his ears shrieking for people to be quiet when it was just a couple of boys playing near him. Not sure how he’s going to cope in a classroom or playground? Maybe he’ll need ear defenders.

He also recently got really upset about someone playing in a playground. A girl was on a climbing frame pretending it was a castle and ds got really really upset, hands over ears again and crying, telling them ‘no pretending! No pretending!’ I’ve not seen him do that before. He doesn’t like pretending to be other people or dressing up but he’s normally fine with other kinds of imaginative play. Again, how will he cope at school he doesn’t like kids playing?!

Ear defenders are good if he'll tolerate the feel of them (maybe leave some around for him to play with so he can get used to them first? Or try him with big headphones to listen to something he likes to listen to so he can get used to the feel of having stuff over his ears? DD has never tolerated them...)

Hopefully as he gets older you'll be able to talk more to him about the things he finds stressful and put strategies in place to help. It's a tough age as they are starting to notice more and having more demands placed on them, but still struggle to express what the problem actually is. Even at 5 I worry that sometimes with DD she's following my suggestions/nudges rather than really telling me how she feels, but it's still a lot better than it was.

Is there anything else that's changed? I think things getting worse can be an increase in external triggers (noise, changes in life, greater expectations, or whatever) or it can be a developmental leap that means that maybe they're suddenly noticing or processing things that they weren't before, and struggling to do that. Hopefully either way things will stabilise/settle over time, but there may be things you can do to help if you can work out the trigger.

Maybe it’s developmental. It’s subtle but he seems more aware of sensory stuff ... is it possible to shift from sensory seeking to avoiding? There’s less running up and down and crashing into the sofa but he now dislikes teeth and hair brushing and having sun cream put on. And is also saying he doesn’t want clothes on, takes them off at any opportunity! The chewing has increased I think. He probably spends at least a third of his waking hours chewing, and really hard! And he bites whenever he gets a tiny bit frustrated (luckily not us, normally a toy or whatever is close at hand).

But he’s got better at going to the toilet, far fewer accidents in the last couple of weeks.

I don’t know, just overall he seems more obviously ‘different ‘ (ie asd though I don’t feel right saying it when he has no diagnosis). Maybe because he’s older, and I see him around peers more at parties, school visits etc. He also increasingly reminds me of a friend with Aspergers. Something about the tension in his body, some mannerisms, even his sense of humour.

I’m finding it hard at the moment. It’s just all starting to dawn on me I guess. I can’t keep explaining things away. And practically it’s getting harder too. Just little things like yesterday I was trying to play a game with dd with a toy post box and ds got really upset because I called her the postman. What do I do when he won’t let me do pretend play with dd? It seems unfair on her. I also feel bad for her when she says hello to him and tries to hug him and he shouts at her to stop. How do I balance their needs?!

Where are the Nursery staff in all this ?
Does he have a Support Plan (called different things in different LAs - but a document setting out how they are differentiating for him, and /or setting targets for him to work towards ?
Have they - either the setting SENCo, or via the people that came in to observe him - suggested any strategies, or even let you know about strategies they are using with him at Nursery ?
Has there been any discussion about EHCPs?

Can I just mention that, in out authority, they wouldn't diagnose anything at the first appointment. Here, you get to see a Paediatrician within about 4 months of referral, but, if Autism is suspected, you then get referred for a specialist Autism assessment, and the waiting list for that is about 18months from when you've seen the Paediatrician.

I really like this guide on sensory behaviours. {Full credit to the OTs and SEN/D Support staff at Falkirk Council for putting it together in the first place, but then also making it freely available on the internet to share.

Children can be, broadly, sensory seekers or sensory avoiders but it doesn’t have to be either/or and it’s certainly possible for the two to be mixed in different areas and change over time, or even day to day depending on the circumstances. The image of a graphic equaliser is often used to show visually the many different levels of sensory input. A person with no sensory sensitivities may have most of the levels set to the middle but for someone with SPD they will be set higher or lower depending.

BackforGood is right, you should speak to the nursery (if you haven’t already) to set up some SEN targets.

Just to give a different experience, we were given a diagnosis at the first appointment. We had 6 months between first attending a SALT drop in clinic and diagnosis and that was only because it straddled the summer holiday and after the drop in I had to chase the SALT to speak to the nursery as it wasn’t followed up initially. It really does depend on the LA, and possibly the hospital.

I guess seeing it from his perspective he may just be trying to protect DD. I can imagine if you find pretend play very disconcerting/upsetting, at that age (when theory of mind isn't fully developed - this takes until 4 or 5 years old: www.child-encyclopedia.com/social-cognition/according-experts/development-theory-mind-early-childhood) then they may imagine that it will be disconcerting/upsetting for DD too. So you may just have to wait that one out - but you could start talking to him about:
a) Everybody's brain works differently - things he likes or dislikes will be different to things DD likes or dislikes; and
b) Everybody being in charge of their own body/decisions (so just as you won't force him to do something he finds scary, or stop him from doing something fun unless there is a very good reason, he similarly can't force or stop DD or you from doing something you find scary/fun).

My OH was a bit sceptical about the second one as DD does sometimes say "you can't make me, I'm in charge of my body!" when we want her to do something she doesn't want to do. But honestly I think the days when you can physically make a child do something are so numbered anyway it's good to start practicing the art of persuasion and logic early in any case (with obvious exceptions for when they are trying to run into a road or something!) And I like the fact that she will stand up for herself in this way generally as I think it will help her with bullies and more generally with anybody abusive she meets when we're not there to protect her.

Thanks everyone. I haven’t heard the words Support Plan but he has been seen by the local inclusion team twice who have said the nursery are doing all they can. I know they use now/next visual timetables and an egg timer for transitions. I believe they try to encourage and scaffold peer interactions. They are trying to teach him ways to control his emotions and calm down. I do think they are trying hard. I just filled in a sensory checklist and they’ve done one too to compare. There will be a transition meeting with the school, hopefully attended by his teacher, the school SENCO, the nursery SENCO, his key worker, the local inclusion specialist teacher and me to try and work out how to support him into school. Hopefully it’ll all help.

Had a horrible pickup today where his key worker (looking a bit shell shocked) was detailing how much he’d struggled today with their sports day practice. The thing is I just keep being told the same thing, about how much he struggled etc etc. And it’s demoralising and upsetting to hear though I know they are just keeping me in the loop. They just go on and on repeating what I know and it’s so hard to hear. I got a bit tetchy which isn’t great but my own mental health is not great with all this going on. Think I annoyed his key worker. She’s nice and only trying to help but I don’t see the point in telling me repeatedly what I already know.

Lightripper thanks for that insight. I never considered that could be the reason. He is very protective of dd so it would make sense. He can be so lovely. Not my finest moment but today he found me crying in the kitchen, he’s never seen me cry before so I feel bad about it, but he asked me what was up and when I said I was sad he asked if a cuddle would help and climbed onto my knee. Crying again just thinking about it!

That is lovely! What a gorgeous boy. And good empathy skills for such a young kid. I hope the cuddle helped!

I’ve noticed that tendency to just focus on difficulties from preschool too. I do wonder if it has something to do with the whole process to get support, which heavily focuses on where a child struggles. I think it is easy to get caught up in that way of thinking unfortunately.

They might not be aware as well how potentially tiring a sports day can be if you are ND. The change in routine, the large number of children in the same space, plus lots of noise/cheering while following instructions at the same time. I’d say the fact that your DS stayed and took part means that he did brilliantly.

I don’t know if you have seen this before Autistic Energy Gauge? It is based on Christine Miserandino’s Spoon Theory (it is only an example so the details would vary person to person). I found it really helpful. It is very noticeable with my DS that when he has used too many stars his sensory seeking/avoiding seems to get worse. He just doesn’t have enough spare energy in the tank. It has been a bit of trial and error to work out where DS’s limits are, but it has really helped us.

My daughter was diagnosed in preschool, she’s not as able and a bit more obvious on social issues... but the same principal- pretty happy at home and struggled in settings. I found it hard to reconcile the non-verbal screaming nursery child with the pleasant little thing she was at home. She had her ways, but fit our family. Geeky interests, but alternative. I got a little frustrated if I’m honest at times with assessments as she got older, some of it seemed to border on personality types and pathologising differences. For example a worker picked up I’ve never watched TV as a strange sensory thing, I find it a bit irritating in some way. I don’t however run out of rooms screaming at them, tolerate them fine in the background and can discuss shows my friends like.

I met another family like ours on the post diagnosis course. Neither or us liked the concept of the over-sharing with a group of strangers and didn’t relate to bits. Some parents were pretty unsympathetic to their kids, whereas we were quite understanding and accepting of what were basically mini versions of us with some additional traits that made it hard for them.

I fallout a bit with a friend over the early bit of primary, she was always on I did ‘nothing’ to help dd whereas she was always getting resources, indoor gyms, sensory tents etc. Neither of us were right or wrong but she seemed to take it personally. I actually did do things, just not as overtly- it was in how we talked and adjusted life. The kids haven’t grown up really any differently, they are both loved and secure.

My dd is autistic, but we are very happy. She fits my family, she has friends and has done WAY more than was ever predicted or hoped for. The main thing for me- her mental health is pretty secure. This isn’t for everyone, but we feel into home Ed, in a positive way. It’s not for everyone but it’s where we found our tribe. Dd has gone from a three year old who clicked her tongue and spun at nursery l, screaming if touched, to doing ballet shows and being pretty popular (though she only does one, maybe two, friends at once they fight for her attention at times.)

Total ramble- but I guess what I’m saying is it may different but it sounds like your son has loads going for him, accepting difference and supporting him doesn’t have to be negative. Especially if he fits your family as well as it sounds, you are a safe space and there’s loads more out there like him

Following this thread, as my DS 3.6 seems similar (but also very different!) to a lot of the comments here.

Thought I would give an update on how we’re doing - might be interesting for those in similar position, and I will probably start to have lots of questions as we progress down the diagnosis route.

Ds started school in September and it’s gone better than I expected. So far he is happy to go in, and seems happy when I pick him up. He seems his normal self at home. I was worrying he would hate it and I’d have to drag him there every morning!

He is struggling at school though. They are very supportive, and aware of his issues following the transition meeting we had before summer. They have a speech and language unit and are very up on their SEN provision so I think we got lucky there. He’s much the same at school as nursery reported - struggles with transitions, gets stressed and upset easily, can’t take turns or share, is impulsive and not good at following instructions or respecting boundaries, doesn’t like structured activities etc. He sometimes runs out of the classroom. When he’s upset the class teacher or TA take him out of the class (they said this happens about 3 times a day). They go on a walk around the school, or he spends some time in the inclusion unit with the SENCO doing things like making lavender play dough or Lego or looking at books.

We had a meeting today at the school with the specialist teacher to review his transition to school. She suggested more things the school can try, eg more visual timetables. They are also planning to do Legotherapy and a social skills group.

They feel, as nursery did, that he would benefit from some further support so they are putting together evidence to apply for more funding to get someone else in the classroom probably for a few hours a day to help when he gets upset and needs to leave the room. The specialist teacher will come back and do another observation to add to the evidence.

All in all I feel the school are being very good and it is a relief to know how much they are trying to support him. They seem to ‘get’ him as much as it’s possible given he’s only been there a month.

On the diagnosis side ... we finally had our paediatric appointment last week. They basically took a history and our and school’s concerns. They gave questionnaires for us and school to complete to see if he meets the criteria for an ADOS assessment. Apparently the waiting list is 1-2 years!! And they won’t assess for ADHD until he is 6 so we won’t be getting any answers soon.

At the moment I don’t mind too much as school are so on the case despite him not having a diagnosis. The only thing is talking with other parents. I don’t feel right telling anyone he’s on the spectrum without a diagnosis but it’s getting more and more obvious that he’s different. I worry about things like birthday parties. And I’ve also overheard other children at pick up time mentioning ds’s name to their parents - I think he’s getting a bit of notoriety and worry he’s going to be labelled as the naughty kid! But this is mostly just in my head at the moment. I worry about things before they happen.

Hi @TippetyTapWriter I know you probably won't see this as it was so long ago, but just wondered how your son
is doing now? Our daughter, albeit younger, sounds very similar (fine at home, not at nursery).