ds1 (3.5) refusing to come home from pre-school or anywhere

[MrsKoala]

I would really appreciate some advice. ds1, who has suspected ASD, has been going to pre-school for a year now. He absolutely loves it and loves the other children (he loves all other children and wants to be friends and play with every one he sees and doesn't understand if they don't) but since christmas he has been refusing to come home. I have to physically drag him home kicking and screaming, which is hard because he is big and i am also pushing ds2 in the buggy. He bites and scratches me. I am covered in bruises.

He goes 5 half days a week. Mon and thurs afternoons and tues, weds, fri mornings and stays for lunch tues & weds. These are the only sessions available.

This week it has got so bad that on Tuesday (the worst day as his best friend stays on) he smashed up the house when we got home, slamming and kicking the doors, pulled all the pictures of the mantle piece, tried to climb out of the window, bit ds2, was choking and gagging and banging his head on the walls he was so hysterical. I had to lay on the floor holding him tight to stop him hurting himself or us.

Today i tried to bribe him with a trip to lidl on the way home to get a cookie, which hasn't worked before but seemed to today. But when we got in there he didn't just want his cookie he wanted to get a trolley and do a full shop (he loves food shopping) i said no, that we had to get home becasue grandad was watching the baby but he ran away and i spent about half hour chasing him around the supermarket. I had to hide like a prat and jump out as he ran past, i caught him by his hood and then had to drag him home kicking and screaming. When we got in he laid on the floor screaming for half an hour.

This happens now when we have to leave anywhere, bounce, soft play, shops, parks etc.

The paed and the people who have met him say he is so focussed on what he wants that nothing else even exists to him.

But i cannot go on like this. As much as he loves pre-school and as much as he has developed and thrived there i am tempted to stop taking him. I know it sounds terrible but i could just let him watch paw patrol all day and not get beaten up.

I don't know how much longer i can do it.

[Gobbolinothewitchscat]

That sounds really hard

Can you get a pram (I have a bugaboo donkey and a baby jogger GT mini. My DS' predicted height is 6 foot 8 and i can comfortably put him in both. So that should work if your DS is tall)? I undetstand you might have to stuff him in but hopefully someone at nursery will help. That should hopefully help with getting home.

Then, when you get in, can you have a child-friendly room with nothing breakable that he can go into to calm down? Maybe a TV high up attached to the wall so he can chill out to paw patrol. Lots of lovely cushions and maybe a little den? You could have a stair gate on the door. So he's safe in there and you and your other DS are too.

I do t have any practical experience of SEN so maybe this is not the thing to be doing but hopefully it might help a bit

[MrsKoala]

Thanks. Yes i have an UppaBaby vista and he sits in the rumble seat easily - if he's willing. But for a start i find it hard to get him in when he is kicking and screaming (even catching him first is a feat). It faces inwards to DS2 so he sometimes gets kicked and hit too with all the flailing. And he can open the clasps and jumps out of it while it is moving, and last time ran across Lidl carpark with me in hot pursuit. It is on a hill so i don't like leaving the buggy stopped on the pavement but i have to to retrieve ds1.

Also DS2 starts having an almighty strop too as he is left in the buggy for ages while we wrestle and chase round the church yard/streets.

I have spoken to nursery about it and they are sympathetic but they tend to shove him out and shut the door on us while he is screaming and leave me to run around the playground chasing him.

I think in Sept (when they have more availability) i will change to 3 full days rather than 5 half. But i need to cope till then.

The whole thing is a nightmare because the lunch time pick up/drop offs are right in the middle of ds2s nap time and he is also being a pain. He wont go down earlier or any later as then he either 'goes past it' and grizzles all afternoon or naps too late and wont go to bed. He wont sleep in the buggy and any slight noise wakes him. He wants to sleep 11ish - 1ish ideally. Today i tried to put him down at 10.30 but he wasn't having any of it. Then i tried keep him going till after i had picked ds1 up (11.45 but then by the time we have arsed about we get home about 12.30 so he wouldn't nap till 12.45 at the earliest and only if he's not too excited by DS1s shenanigans). But he was so grizzly he laid down at 11.15 and went to sleep on me. I had to call my dad over to watch him as if i had tried to take him out asleep in the buggy the moment he moves or the temperature changes or a car goes past he is wide awake. He needs to sleep in total silence in his cot.

I am starting to think ah bollocks to it and staying home all day.

[Cakescakescakes]

I had similar with ds1 and ds2 was also a young baby. What was a life saver for us were visual schedules. Ds1 can't cope with transitions and seeing the day mapped out in pictures helped enormously. Then as each activity was completed it is removed from the Velcro strip so he could see what was left. I actually couldn't believe the difference. Worth a try?

[Cakescakescakes]

And I know it's easy to make a visual schedule yourself but I didn't have the mental energy to cope at the time so I ordered some visuals from an eBay seller who sells PECS pics etc. Was about £5 for Velcro laminated strip and a whole selection of about 30 visual cards that I chose myself which came laminated and with Velcro attached.

[MrsKoala]

Thanks, nothing he likes works. As in there is nothing he likes enough to stop an activity he is currently enjoying. He cannot comprehend liking something else when he is enjoying something different. If that makes sense. So for example i offer to take him to see his GPs whom he adores and begs to see daily, but he says he doesn't like nana and grandad, i say we will make chocolate cakes but he doesn't like chocolate cake. i say we can watch paw patrol etc.

Today i just deferred the pain, so i managed to lure him to Lidl for a cookie, but then he was having too much fun in Lidl and he wanted to 'buy lots of food'. He doesn't want to go into a supermarket unless we are doing a full shop and then he insists we buy loads of stuff no one eats and has melt downs because he wants 20 tins of spam or something ridiculous.

I don't think it's the routine (oddly enough he hates routine and what he likes one day he hates the next) of the timetable, and i don't think it's a school thing. I think it's him being unable to stop doing something or accept something is over or come to an end. Also he hasn't responded at all to visuals. He just tears them up and chucks them. They mean nothing to him. I think it's that the things he likes give him a feeling and pictures don't. If i show him a picture of school he looks blank and says it isn't school. I think because when he goes to school he feels excitement and happiness, but when he looks at the picture it's just a picture. Not sure if that makes sense.

The thing he loves most is eating his lunch there. He loves his packed lunch box and he loves eating with the others.

I hate the fact that every single happy time he has ends in a really traumatic emotional meltdown. Everything is bittersweet. Taking him swimming or to the beach or to soft play always ends in everyone upset. And inevitably we just stop doing it. I hate that he is unintentionally ruining it for himself, but also ruining fun things for ds2 because now he never gets taken swimming or stuff either.

[shazzarooney99]

I dont know if its me, but some of these things dont sound like hes on the spectrum to be honest, the not liking leaving places can be fairly typical when a child is a certain age, but you have to give them warning and then count down.

The fact that he wants you to do a full shop whilst you are there? it does sound a lot like he is getting his own way a lot and please dont take that offensivley.

[shazzarooney99]

Healso hates routine? it could be possible your looking at something else and not asd. x x

[PhilPhilConnors]

Da has ASD but doesn't like strict routines, what he does is has ideas in his head and they become his expected routine, and I don't have a clue, until I disrupt "his" routine. He has his own routines planned out, I need to find ways to dig them out of him!
This can happen when we go to the shop if I haven't gone through exactly what we're going for and he has an opportunity to say what his plan is so we can negotiate a mutual plan.

Visual schedule and making sure I know what his expected plans are really help in situations like this.

Shazza, with all due respect, many people think my ds gets his way a lot and that we pander to him. Without the strategies that we use, we can't cope. With reduced demands (which looks like pandering) we can manage things and have some semblance of family life.
It's a pity that we have had to build up our own strategies to deal with other peoples' opinions.

[IguanaTail]

Could you organise with the nursery that 15 minutes before he is collected he starts doing an activity that he can continue at home? Like drawing rather than painting or something? Then you can say how you're going to continue with the picture at home and bring it in tomorrow? Might that ease the transition?

[shazzarooney99]

PhilPhilConnors, iknow exactly what your saying luv, i guess one size doesnt fit allxx

[MrsKoala]

Why do you think he gets his own way? I never said i do a full shop when i don't need one just because he wants to - like today i chase him round the shop and drag him home kicking and screaming. Sometimes we do go to the supermarket to do a full shop as i need a full shop and he does really enjoy that but wants things i don't - which i don't ever buy - and then he has another melt down.

We have seen 3 separate paeds who all think he strongly presents as having ASD as does his SENCO and the Early Years lady. I know he doesn't immediately appear to have the traits but they seem to manifest themselves more in the SPD areas, Echolalia, not recognising social cues and boundaries, being extremely self led and self motivated, repetitive obsessions, extremely restricted diet.

I have mentioned the routine thing to the paed and they say that not all who present with ASD tick the same boxes but they think he will start to respond more when he understands what routine is. At the moment he is so in the present that he doesn't really understand one day from the next. He doesn't notice we eat at the same time, sleep at the same time etc, everything that happens appears to be a complete surprise, which of course is not as fun as whatever else he is doing. All i'm saying is he doesn't appear to get comfort in routine like others do, because he doesn't appear to recognise it.

I must admit our routine is chaotic and not the same everyday so perhaps that's why. But he doesn't seem to notice when pre-school is on holiday and we do other stuff.

[MrsKoala]

YES PHIL! That's it!! So he has a routine in his head that if we go to the shop we go down every aisle and touch certain foods - he will also rearrange the shelves if things are not even or something is knocked over as we go and repeatedly pick up the same things, whether we need them or not. Also certain packaging he is attracted to - like some on the non free range eggs which i refuse to buy! He will take things out of my trolley he doesn't like. None of the things he wants are sweets or toys but odd teabags, things which he likes the smell of etc

[shazzarooney99]

Sorry i was out of order, i dont expect you to justify anything. xxxx

[Littlefish]

He sounds very like a little boy I taught who had PDA (pathelogical demand avoidance). The ASD advisor who came to our setting explained that visual timetables, now and next boards etc. can increase anxiety as they become part of the system of demands which the child is fighting against.

What worked one day would rarely work the next and we had to keep changing our approach. Strangely, this little boy responded much better if we didn't give him notice of any transitions, but just asked him to do something at the last minute, after leaving him at his choice of activity for as long as possible. It went against everything I thought I knew about children with ASD but it seemed to work for him.

[MrsKoala]

Iguana, that's a good idea. He hates drawing/painting tho, but he does like me writing things he tells me to write with squeezy glitter pens (usually a long list of the names of Thomas trains - sometimes all of our names etc). Perhaps they could give him a list of words for me to copy out, or something.

On Weds he was given a book on emergency vehicles which we brought home to show the Early Years lady who was visiting that avo, he seemed happy at first when they ushered him out the door. but then he saw all the bikes and things in the yard and the other children and frisbeed it.

[Littlefish]

Just re-read one of your messages. If photos don't mean anything to him, does he need objects of reference to help him move from one thing to another? Eg. When it's time to go home, you give him his teddy from home. When it's time to go to nursery, you give him his lunch box. Would that work?

[MrsKoala]

Yes Little, exactly that, we have found doing spontaneous things or visitors just turning up much better than long preparation. If we say we are doing something later he doesn't understand why we aren't doing it NOW. We actually surprise him with bedtime every night and he still never notices! When we used to do the whole wind down routine he would get worse and keep saying anxiously 'im not going to bed' and getting hyper and overwhelmed. He also started hating books and bathing (which wasn't good) so now we have baths at random points during the day (altho the baby DOES liek routine and at 3pm every day - how does he know?! - goes to the bottom of the stairs and pulls on the gate and shouts BATH! BATH! ) and books too. I put his jamas on randomly as well. Then at bed time i pick him up and carry him up the stairs and he says 'we're not going to bed are we' and i say noooo and carry him into his bed room and say something like i just fancied a snuggle and he lays down and is asleep in minutes. If i mentioned the bed word we'd have hysterics.

It's okay Shazza. I know he doesn't fit what people expect, so even people i know whose dc have autism say 'but he can't have it he speaks really well and is a great communicator' but it's really subtle and once you know you can see it.

[MrsKoala]

ohh i hadn't thought of that Little. He doesn't have teddies or anything like that, in fact he doesn't have any favourite toys. What he is is a neophiliac. He loves new things even if they are not toys or childrens things. He will play with a new thing like it's the best thing on earth then the next day not even notice it. I was thinking i could bring a small new thing from poundland every day and say he could open it at home. (as if my house isn't full enough with poundland crap!).

Is that a terrible idea? will i just make him spoiled?

[Littlefish]

I don't think it sounds like a terrible idea, but it might get expensive!

Have you seen this website about Pathological Demand Avoidance?

[MrsKoala]

The other thing about him is he is a sheep. He just copies everyone around him to a very extreme level, walking same footsteps, echoing their speech, tripping when they trip (if we go out and someone exclaims something or squeals he does the same - they often glare at us like he is being cheeky and he beams back at them not understanding they are cross). So on Weds we get to one road away, because his friend lives there, and then i only have to drag him a little bit. On thursday we get to the corner shop because another boy turns off there etc. So i was thinking i might try to arrange some playdates and beg mums to come back with me for an hour if i bribe them with coffee and cake. I know that's not a sustainable plan but it might help in the short term. Or will he want that all the time?

Oh and on Sunday he is going to his first ever birthday party, i suspect it wont end well. :(