How Do I Help My Son?

[SquarePegInARoundHole]

Hello.
This is my first time posting in this section and I have name changed as I am uncomfortable discussing my child online but I have no one else I can talk to.
My DS is now 4 and a half. He started nursery aged 3 and was fine at first. They were then concerned that he was not speaking the local language (we are not in the UK) and he was having extended temper tantrums. Also that he was not taking up the play opportunities offered.
The nursery has a core time from 8.30-12.30 which he has to attend - they will not allow a later start or afternoons only. The morning is as follows: free play 7.30-8.30 then handwashing and communal breakfast then circle time then free play or a directed activity (they can choose to do or not now, it's a reggio concept) a trip to the playground then handwashing then lunch then teeth brushing.

He was observed by a therapist earlier on in the year. She said he was neurotypical and just needed compromise/not to be engaged in power struggles.

They then asked for him to be observed again because he has meltdowns when he does not get his own way or something happens that does not correspond to what he had in his head. They are also still concerned about his language ability in the second language.

The paediatrician said he was lively but she did not want to stick labels on him yet.

The problem is: he now kicks off every morning about going to nursery. He says he hates it, he hates the staff, he always gets told off, he wants to be at home. Every morning is world war 3 and when he gets there he refuses to eat breakfast, will not join the circle time, screams his head off and locks himself in the toilet. He has also been physical with the nursery nurses when they try to take him out the bathroom so I have the impression they often leave him in the bathroom, cloakroom or gym or wherever he hides until he comes of his own accord. Not the safest or most hygienic practice but he won't come out willingly.

The meeting/feedback from the latest observation is still to come in the next fortnight.
In the meantime my DH was called from work to fetch him when he refused point blank to go to the playground and the nursery is understandably concerned about his increasingly poor behaviour because they cannot afford to do 1-1 with him all the time in terms of staff ratios.

Feedback I have had is along the lines of they think he lacks boundaries and is spoilt with the implication that I should do a parenting class as opposed to him being on the spectrum because he is "intelligent" I told them that you can be intelligent and still have specific needs but it was clear they had never had experience with children with aspergers as they did not seem to know what it was. They just wrote down 'mum thinks he has aspergers' which isn't what I said (I don't know, truth be told).

Here's what I'm asking. Would you:

1. Look for a new nursery with an emphasis on emotional and behavioural disorders (I could do this but it will take a while and require a referral from paed plus hoop jumping)
2. Do the parenting course and try to adjust things at home (amount of sleep, diet, screen time, monitor "triggers")
3. Try a new nursery in September as a fresh start and take him out until then.
4. Have him at home until he has to attend school here at six.
5. Persist with the nursery he is currently in but core time only, so only 4 hours a day.

Others have talked about him " growing out of it" but he seems to be getting worse not better. He is very verbal in English, quite stubborn and wants control of everything. I feel like I have failed him/am failing him. If he does not go to nursery then he will not learn the local language he needs for September 2019. He will also not have the socialisation he needs to develop friendships. But the current situation is not working either.

I work part-time so would have to quit my job if I take him out. But clearly he is unhappy.
That said, I took him in for a short morning last week and he had a good morning, then the following day he kicked off because I was picking him up early and he wanted to stay longer, so the next day he stayed longer with the result that he threw water at another child (he c!aimed had upset him first), was aggressive with the nursery nurse and weed on purpose in the gym allegedly.

Did you all know at an early age your children had specific needs?
Did they ever attend nursery and did you have to remove them?
How long did it take to get a diagnosis and what did this bring?
How do you cope if there's just one or two of you with no family/friends to pitch in?
How do you discipline without escalating the situation?
What boundaries do you have that are non negotiable and are you always consistent?

Any help or advice would be gratefully received. Thank you in advance

Bump. Anyone?

Hello! This board tends to be a bit slow, I'm sure you will get useful answers but it may take a day (don't worry, your topic will stay near the top!)

My DD is 3.5, is heading to an ASC diagnosis and I still would have had no idea, even though it seems obvious to the two nannies we've had (not necessarily obvious that it's ASC, but obvious that there is "something different"). We are also grappling with what kind of supports to put in place, I think it's really hard at this age. I don't know whether your son needs a specialist institution but it does sound like you at least need somewhere that will really listen to you as a parent and work with you. DD's pre-school is small and doesn't have much experience with ASC (one previous child has it), but they have an SLT who comes in once a week already (so DD has an hour with her), and also found a local nanny with some experience with SEN to come in and do 1:1 with my DD once a week for an hour - just to observe and help encourage her to socialise a bit more. We have had to pay for both these things (it's a private pre-school) but we've found them incredibly helpful, and the main thing is that we feel the school is listening and trying to help.

I'm not saying DD's pre-school have done everything perfectly, but listening and engaging are basics, and you need somewhere that will do that and not just blame you.

I would try not to worry too much about the language: sounds like your DS is very smart and in the experience of my friends kids that age are super-fast to pick up language, and he still has quite a lot of time. But in your situation I would want to find somewhere he can be happy and be supported to go a bit outside his comfort zone with socialisation (my DD's pre-school call this "scaffolding" - they do things to try to boost her confidence, show her the benefits of working together with another person - maybe just another adult at first if cooperating with children is too hard). It's about building up in little manageable steps what might come naturally to other children, so ours don't fall too far behind. My DD's pre-school (and ALL the primary school's I've visited) also have visual schedules in the class room, to explain what happens in what order in a visual way.

But my DD's pre-school does this with no ASC specialism (they do it for all the children, DD just needs a bit more help), so I think it's pretty rubbish if your son's nursery can't be constructive and come up with ideas to support him and make him feel more comfortable so he doesn't end up exploding.

As you say, once you get to the unravelling stage there's nothing you can really do except keep everything super-calm until they can work through it and get themselves together a bit - not adding fuel to the fire. It's all about trying not to end up there (whether that be through clear guidance on what's happening "now and next", distraction, removing over-stimulation ... whatever you think will work for your child in that situation).

Oh bless you for replying light I just picked him up and he is cheery but this morning he was stressed. I rang them to see if he had calmed down and they said yes but he was now sitting in the cloakroom not participating. They turned down my offer to pick him up even earlier. The meeting with the therapist observer will take place next Tuesday morning.
I am not sure what I expect to come from the meeting. I think the therapist will probably offer a parenting course and suggest a smaller setting. My confidence is rock bottom right now.
I am not that worried about his language - in his mother tongue he is absolutely fine but bilingual children (my partner is also English though so bilingual by having to live here rather than via a parent) it always takes longer.
His behaviour though can be explosive.
Example - we went to English group on Friday and he had made a picture for his teacher there. I had forgotten to pack it. Afternoon ruined by that one screw up. He was inconsolable and it escalated without me being able to solve it. It's that kind of overreaction/exemplified reaction/end of the world extreme reaction that makes me think there's something wrong. Of course, others see a four year old screeching, screaming, twisting, punching, flailing and look at me like I have two heads.
But he isn't always like that. The problem is I cannot predict him at the moment - certain things, like limiting time spent in town, hauling him onto my shoulders if his feet are tired, not multi layering clothing or getting itchy materials, not putting things he does not like on the same plate: I can do all those things but I cannot "fix" everything or predict every variable. I am also not sure I am adequately preparing him for the real world if I try because the culture here is very much "you will fit in" (hence my user name).

One issue is food. They have a policy of you must try a spoonful of main or no dessert (his keyworker has said she follows that policy but my DD who went to the same nursery said she always made them eat the lot or she withheld dessert).
He normally has a warm meal but certain things he won't eat. I am able to cancel the meal that day and provide a packed lunch. Fine.
Three problems there though: 1. He knows he has food in his rucksack and will try and eat it at times he's not meant to. They won't hide it/put it out of view 2. The nursery is really warm so the packed lunch sits there for four hours. They won't store in fridge. 3. He is now increasingly difficult to predict with the menu (he loves pasta but has refused it twice recently). They won't store an "emergency" meal for him to use in case he won't eat.
On top of which the communal breakfast is one size fits all. Different things each day but not routinely the same except Thursday is Muesli day. He doesn't like muesli. They won't let me bring cornflakes. Bottom line: he eats cereal at home then goes in but by and large does not want their breakfast and cannot stand to sit for half an hour whilst they eat.

There is no flexibility so it's already gone to pot before I leave the building. If he had a table with an activity or could use the sofa or tent to sit in and chill while the others eat then at least it's more hygienic than him locking himself in the toilet. They cannot force him to eat but at the same time at school he would be expected to sit in morning circle, then at a desk for 45 minute slots so is it unreasonable for him to sit down quietly and watch the others eat? I think he finds just sitting there without an activity impossible - I need to ask next week.

I have two other children. The eldest is NT, the middle daughter has no diagnosis but having just started school is prone to losing it at home, a build up. That could be coincidence. It again could be my parenting or it could be her ability to "mask" then release like a pressure valve.

All three, to my shame, have far far too much screen time. It's the only way I get anything done but I know the price of it is too high and I need to find more structure than that.
I don't have a punch bag yet, I was thinking of getting one at Xmas - when DS is noticeably angry I have put my open palms out for him to "punch" until he's vented. I daresay that will be judged too.
I'm just feeling a bit lost and lonely right now. He will probably end up in alone kind of ergotherapy - that's a huge thing here, many kids have it at some point. But I also feel the nursery have him labelled as naughty, find it obviously easier when he's not there and he has picked up on that.

some kind of therapy not alone, Freudian slip typo

I work in a childcare setting by the way and am a qualified teacher (used to work in mainstream with an integrated ASD centre on site) so would have a chance to advocate for him if we were in the UK but not where we are now - there is little to no SEN or second language (what used to be called section 11 in the UK before the govt screwed the kids over) provision here. I can access a language course in the primary once a week for him from September but within the classroom there are no TAs or school SENCOs.

Sadly he cannot come to my childcare. A shame because ours is not a usual nursery, we only have small numbers so we can be more flexible with eating times, naps and not going out if they don't want to go. In theory he would go to his sister's school though Sept 2019 (six and a quarter) where he would be expected to sit still and concentrate from 8 til 9.30 then a small break then 9.45 to 11.15. He could be picked up then (although DD stays until 3.30, there are two types of class - morning and full day). At this stage I am struggling to see him sitting for three hours which scares me as there is no way I could home school: it is illegal.

Sorry for the long posts

The nursery sounds awful and very inflexible. The making them try one spoonful is not a good approach to food and is likely to increase anxiety around fussy eaters.

He’s only very young still, I would pull him out of nursery completely and work on things at home. Hopefully he will be less stressed and anxious as he doesn’t have to go to nursery and his behaviour will improve. You could do lots of play based things with him too to help him cope.

So the picture thing, do playing with figures and one forgets something and is cross/disappointed and play out different ways in which they deal with it.

When you realised he forgot the picture, what was your reaction? Did you say along the lines of don’t worry, it’s no problem we can get it next time. Or did you share his upset at forgetting it? Often if you can acknowledge that it is really, really upsetting and you are upset too and cross at yourself for forgetting it and you understand he is really cross and upset it can help.

You sound very perceptive and clued up on his needs and what needs to be done to manage this but it sounds like your hands are completely tied with the nursery.

Evening little. Re the picture I told him how sorry I was and I was sad too and did he want to do a new one (I always have paper and crayons with me) or did he want to do fingerpainting/popping holes out a sewing card/a puzzle (had these things available as I was leading crafts with another group). No to everything, the picture was the only thing that mattered.
I wish I was more clued up - don't get me wrong, I did some ASD training and have also worked in special schools but it was aeons ago and as the saying goes, if you've met a child with autism you've only met that child with autism. We used to have the following:
A time out system with card and chill out room
Boards with order of the day on
A sensory area
Training re communicating so that instructions were clear (not making comments that could be taken literally, not expecting all to understand jokes especially avoiding anything remotely resembling sarcasm, being aware the group pronoun 'you' might be perceived personally by some so target pronouns accordingly etc). I have taught teens with ASD, ADHD, EBD but that was pre having my own children: so I was younger, had more patience, energy then and - here's the clincher - it wasn't 24-7 like it is now with mine (I know that sounds awful and it's exhaustion talking but no respite and no family here means it is relentless like being a bomb disposal operative/land mine defuser). Add to that, despite the teaching background, that I'm not even sure what he has: I filled in criteria and it came out as possible not definite and I'm not sure whether I am looking for symptoms to fit his behaviour as the only other explanation would be that it is down to poor parenting.
I have only ever really made road crossing/safety near water and platforms/please and thank you and teeth brushing non-negotiable.
Even then I bought strawberry rather than mint toothpaste.
Even then he has little regard for personal safety when it comes to running off (can be impulsive and happy to run off and hide in any conflict situation or for fun).
What are the typical strategies used these days and would this current nursery adopt any of them? Not sure to be honest (we are in Germany where high importance is placed on Order and Independence).

I’m no expert but the things that stood out with the nursery
*them not allowing a later start time-some children with SN do better to be allowed to start a bit later/do different hours, so being flexible in this area would help some DC.
*their concerns about his language ability-are they taking into account the fact he is bi-lingual?
*the teethbrushing-this could be extremely distressing to a child with sensory needs to have done in nursery. Evidence shows that if teeth are done twice a day, the times when it is done are less important.
*them trying to take him out the bathroom-he’s obvious anxious/stressed/unhappy to be going there in the first place. The fact he’s getting physical when they try to remove him probably means he is extremely distressed. I would want to know more about this, how is it getting to the point where he’s getting physical with them? I could understand if he was about to hurt himself/another child and they had no choice but to get into physical contact with him but it shouldn’t get to that point from getting him out of the bathroom.
*the fact they said he can’t have ASD because he’s intelligent would be enough alone for me to take him out
*the forcing them to have a spoonful of food or no dessert, again would be enough for me to remove him for this issue alone

He’s telling you he’s not wanting to go, all his behaviour while he’s there (refusing breakfast, hiding in the toilet, not wanting to engage,etc) is telling you he’s desperately unhappy.
I would honestly take him out. If he is NT then I’m sure he will mature far better at home and be ready for school no problem when he’s 6.
If it does turn out he has SN then the time you can spend working with him and losing the anxiety around nursery will help him massively for when he’s got to go to school.

just needed compromise/not to be engaged in power struggles.
This seems a bit strange too as I think it’s in the nature of 3/4 year olds to engage in power struggles and not want/be able to compromise.

In terms of strategies used, it depends what his particular issues are, so whether he’s struggling socially, struggling with language/communication, struggling to follow instructions, struggling with sensory processing issues.
Some children do fantastic with a visual timetable, so putting photographs up of the order of the day and moving an arrow to show which is next.
Others respond well so social stories.
Others need a ‘sensory diet’ to keep them regulated.

You honestly sound like you’re doing fantastic with him and your strategies with the drawing is exactly what I would have done in that situation. Sometimes though there is just no way to fix the problem and they have to go through the upset. Acknowledging it is important though so they lean to deal with those feelings and sort of ‘face’ them and know that they can cope with feeling angry/disappointed/upset (that goes for all kids not just those with SN).

Is there anyway you cpuld go back to the UK if it does turn out he has something like autism? I'm sure that's easier said than done but it sounds awful for him if he has to go through a system with no understanding or support.

And the therapist you mention - what are her qualifications? Does she understand autism?

I just wanted to second this - it's exactly what I thought reading your messages!

"You honestly sound like you’re doing fantastic with him and your strategies with the drawing is exactly what I would have done in that situation. Sometimes though there is just no way to fix the problem and they have to go through the upset. Acknowledging it is important though so they lean to deal with those feelings and sort of ‘face’ them and know that they can cope with feeling angry/disappointed/upset (that goes for all kids not just those with SN)."

Thank you for your messages. To be honest, I am not sure what the therapist's qualifications are, except she will have some , they are a stickler for the right certificates over here. She seems nice enough but I will find out on Tuesday (she met DH last time, not me). I have absolutely considered coming home, would love to, might have to but there are 3 other people to consider - the soonest realistic return would be four years away which is an eternity

Did you all know at an early age your children had specific needs? Yes from the age of 2.5. By the age of 3 we suspected autism.

Did they ever attend nursery and did you have to remove them? Yes it was a lovely nursery well used to children with SEN. No we didn't remove him.He stayed there for an extra term and started infant school later.

How long did it take to get a diagnosis and what did this bring? Nearly 5 years.Diagnosed with ASD when he was nearly 8. After going round the houses twice and meeting some ignorant so called professionals along the way.

How do you cope if there's just one or two of you with no family/friends to pitch in?
It's so long ago now it's hard to remember (my son is 22 now) -all I remember is it was bloody hard work! And we did have my mum to help out.

How do you discipline without escalating the situation?
Try and preempt as much as possible. I found telling him what was going to happen beforehand prevented a lot of meltdowns. We also had a visual timetable.
Using a timer was good for when we wanted him to get ready for bed/put his shoes on etc-"When the beeper goes, it is time to do..."

What boundaries do you have that are non negotiable and are you always consistent?
Those that involved safety. eg always insisted on holding hands near roads.

Your son's nursery sounds awful and totally inflexible. The staff sound like the teacher who told me my son was "naughty" "awkward" and "lazy" on several occasions. My son never forgot her and for years frequently asked why she was so mean and horrible, so it obviously affected him deeply. He only stopped after having counselling and CBT some 15 years later, when he was grown up.

You already have what sounds like one very unhappy little boy. It's not going to get any better. If he is on the autistic spectrum (and from what you describe there are quite a few similarities to my son) being made to fit in will be hugely stressful.I would take him out and see if you can find somewhere better.

My DS is much older (8) and still being assessed but so much of what you say makes sense. I've just been crafting what to tell his karate teachers about him, in the hope that they will let him carry on. For us it's explaining the vicious spiral of not understanding - worry - panic - less able to process information - more worry - more panic. It's been escalating for a few weeks here, even though it's only an hour a week. We don't start with a fresh slate each week, we start with last week's stress still present, and now we've almost lost the battle as soon as we walk through the door. With other teachers he's understood them better to start with, we've had no vicious spiral of panic and he's had brilliant reports all through. But it's such a delicate house of cards.

The combination of second language and particular rigidity at your son's nursery sounds like the perfect storm, and it sounds like he is so stressed out at the idea of going at all that you are going to have a very hard time persuading him to feel happy and safe there.

I'd do the parenting course. Shows you've done it and are open to their ideas if nothing else.
Could one of you speak in German to him at home so it's not such a jump at nursery?
I keep coming back to the second language thing. If he has ASC which means communication difficulties anyway, having to literally speak a foreign language on top must be awfully stressful. Also as you know some children with autism don't pick up things by example very much, and do better when taught explicitly. Total submergence is more learning by example, maybe it just doesn't work him. Especially if he's stressed for other reasons anyway. It's like if you are very anxious about food anyway, then someone gives you a menu that's all written in japanese. You won't learn much japanese.

My gut reaction (based on no expertise whatsoever) would be to take him out and work on his German then try somewhere else, smaller, but sooner than Sept. Whether that's possible is another question.

Btw what's ergotherapy?

Something to play or fiddle with would seem to be a reasonable adjustment for any 3 year old expected to sit still for 30mins. When he's at school he will have things to do when sat down.

Screen time does make a big difference here. We ban it for particular times of the day so it's non-negotiable, and we can be lax at other times. Screen time limits won't fix the current situation though.