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Feeling trapped. Please help.

(25 Posts)
teaandbics Fri 13-May-16 18:00:07

Hello All,

This is my first post so I hope I'm in the right place. I'm really sorry for the length of this. Our problem is how to cope with some of our son's rigidity and repetitive behaviours, which are seriously limiting what we are able to do.

Our little boy turns 3 this month. We've felt for a while that something wasn't quite right and recently suspected that he may have autism or some from of attention deficit. He's an extremely sociable, funny and gregarious little lad, and for the most part is an equitable little chap, but he has always had massive difficulty with transitions and any activity coming to an end. His big issue has always been that he has very quickly got into fixed routines in terms of journeys (i.e., if we went to a park and walked a certain route to get there, all hell would break loose if we tried to vary that and he'd have a meltdown which would involve shrieking, kicking, punching, scratching, even head butting, basically completely lashing out 😞. For this reason, we had to stop him watching any tv, as the same would happen when we turned it off). Although extremely testing and upsetting, up till now this has been (mostly!) manageable, although of course it's made day to day journeys and play dates etc extremely difficult.

We are in the process of starting speech therapy and the therapist has an autism specialism so hopefully she may be able to say a little more about things. We have also seen our GP and the process of getting a referral is underway.

Our big issue at the moment is the fact that these repetitive behaviours have suddenly increased in intensity to the point where I am feeling pretty much trapped in terms of what I can do and where I can go day to day. (I am a SAHM). He has always been mad for car and train journeys and would often get very upset if we didn't go a certain route (normally in the direction of a local main road with lots of traffic; his favourite thing). He would though calm down after a while. Things have escalated, and I'm now finding that I can't get to the places we need to get to without a huge meltdown about us not going in the direction/on the route that he wants to go on. If we walk, he expects to walk to the train station and if we drive he wants to go on the local dual carriageway. If we don't go either way, he gets completely hysterical, sobbing, shrieking and kicking the door if we're in the car (and he can get out of his car seat so I have to stop the car) and flailing around punching, kicking and hanging out of the pushchair so I have to battle to strap him back in.

We recently started nursery and after two successful settling sessions I have been unable to take him back, whether by car or foot, as he expects to go in the direction of his usual route. He has become totally hysterical, and the one time I made it to the nursery door they (very quickly) suggested that I leave it as he was in the midst of a meltdown.

We really don't know what to do. As I said, I'm a SAHM at the moment, so to some extent I can go with the flow and am happy to have the odd train and car journey that isn't strictly necessary. However, I'm worried that if I try and placate him by taking a short car or train ride before nursery, just to be able to get him there, that this will then be expected every time. Apart from being unrealistic, I just don't have time to do this before nursery in the mornings, especially as I am expecting a baby in October, so things will get even harder then. I really don't know what to do any more. I am afraid to try any activity regularly, as he seems incapable of dealing with it ending (even when you give plenty of warnings etc) and once you do something even a couple of times that's it; he expects to do it in that exact way every time.

Please help. I know that a diagnosis is needed but I need to find a way to manage my days in the meantime. It seems crazy that I can't get him to the nursery, but trying to force him to go in when he's in the middle of an almighty meltdown which may take up to an hour to subside (and during which he is lashing out) doesn't seem sensible or at all fair on the staff (or on him). Is there a way to break/lesson compulsive behaviours so that you can at least go about your day? Does anyone have experience of this and what did you do?

Sorry again for the crazy length of this post. I guess it's partly getting it all off my chest as I'm struggling. Thanks in advance for any suggestions.

knittingwithnettles Fri 13-May-16 19:15:48

My immediate reaction to this is that you have to do some kind of positive reinforcement for the new journeys. So he really really likes the train station and the cars on the dual carriage way, and he feels safe because he knows what the score is both in terms of the journey's goal (pleasurable goal for him) and because it is very familiar.

So at the moment the journey is neither familiar nor arrival a pleasurable goal. In fact it may be the opposite for him, he may be very anxious about the nursery or dislike some aspect of it (being away from you for example) even if he likes most of it once he gets in. Or it may be just the unfamiliar transition. So how can you turn this new experience into something he looks forward to? You could talk about it in advance and some of the activities he does there (cars and trains to play with?) you could go in with him a few more times so he doesn;t associate the journey initially with you parting from him (he has probably guessed that you are going to leave quite quickly) Some nurseries allow the parent to attend for a quite a while during the settling in - I don't know whether that is the case with yours. Maybe for your child it is essential you do more of this rather than drop and run, even if the staff think otherwise.

Talking through the journey and the things you do when you arrive at nursery is known as a "social story", a technique which acclimatises children who are anxious or not sure about how to deal with social situations. I think you really need to talk up the nursery, what you are going to do when he comes back from nursery, how the day will go, so he is sure of the routine. Possibly some further positive reinforcement, special clothes to wear to nursery, a toy he takes there, a snack he eats on the way there, which you don't do on other occasions.

My son with autism loved nursery, but he was completely acclimatised because we went there every day to drop off his brother and pick him up. He also was obsessed by train stations and liked all journeys to follow a familiar pattern.

Stay calm, lots of children find starting a nursery very stressful, things will have changed by the time the new baby comes. Have you thought about possibly getting him used to idea of a buggy with a view to having a double buggy when the baby comes? 3/4, if you have reluctant traveller is not necessarily too old for a buggy, even if he is good walker most of the time. It might make him feel more secure when walking in the "wrong direction"

knittingwithnettles Fri 13-May-16 19:26:25

The other thing is that if he cannot express his feelings in words, he may be getting very frustrated and that comes out in meltdowns. It sounds like the speech therapist might be a big help in giving him ways to express his feelings perhaps through visuals or simple words so he can tell you how he feels about things and feel understood, and negotiate on where or what you do in the day, without him feeling like he has no control.. There's a great book called How To Talk So kids will Listen, which is not specifically for children with SNs but it highlights the way that sometimes you need to acknowledge what they do want to do, before agreeing to do something quite different!

teaandbics Fri 13-May-16 20:39:53

Knitting - thank you so much for your reply! There are so many helpful ideas for us to think about, especially the idea of creating a 'social story' around his journey to nursery. He also loves having special clothes, so that's a great thing that we could incorporate into the journey. Snacks may also help (he has recently found his appetite!).

The nursery does have a fairly flexible settling in policy and it was the settle sessions that we were doing. I had only managed to do two sessions, where I stayed for the whole time. He actually loved the nursery and didn't give me a second look once we were in there. He loves running around with other kids. Our problem has always been the getting him to new places bit! I will buy the book as I agree that his speech problems are likely exacerbating matters and I do think that frustration is partly the cause of the meltdowns. You have made me feel like it may actually be possible to get my boy to nursery without having to do a round trip around London! Thank you again. I am very grateful for your time. This is all new and pretty overwhelming for us so it is great to get some positive and really practical advice.

teaandbics Fri 13-May-16 20:45:40

Just to add that I had been humming and harring (sp?) about getting a double buggy, wondering if he may be too big (that is, too old). I was veering towards getting one though, just to make life easier as the worst meltdowns are more manageable with the aid of a buggy. And with two kiddies, I'm not sure how I'd manage it so am thinking I definitely will get one, so thank you!

knittingwithnettles Fri 13-May-16 20:58:09

out of interest, just now I googled "help with transitions" on Google, and one of the sites was 18 Tips for Transitions by a blogger named Snagglebox. He/She makes a point that young children often aren't very good at listening, but much better dealing with visual cues or memories; even time is quite abstract for them so you have to physically show them what a minute is with something like an egg timer.

teaandbics Fri 13-May-16 21:33:41

I'll have a look at that, thank you! He does respond well when we try to tie things in to objects when trying to explain things they he is struggling with, so I think that approach would really help. Thanks again, you're a star!

teaandbics Fri 13-May-16 22:24:58

I had a look- it has some great ideas that I think will help! Thanks

AgnesDiPesto Sat 14-May-16 22:10:30

My son has very rigid and repetitive behaviours. Its a big part of why we won an ABA programme at tribunal because not only do they interfere with normal life but with learning. I don't know if getting any advice from an ABA / behaviour consultant is a possibility but if so I would def recommend it. Its reassuring to have professionals who have seen it before and tried and tested ways to teach children to be more flexible.

If you are doing it alone then what I would suggest is working on it when you don't have to be anywhere. If there are 2 adults to hand all the better.

Ignore the bad behaviour and reward the good as much as possible.

We would have a box of favourite things to use as rewards and at the start of aba programme would get my son to literally just do one thing an adult said - like clap his hands - and then he would get the toy etc to play with for a few seconds, then take it off him and ask him to do something else. That way you can work on him following your instructions in a safe place at home. Even interrupting my son and asking to do something simple used to cause a meltdown initially and the first few days of waiting his tantrums out were tough.

Once he's doing what you ask without a fuss that you can increase the time / number of instructions etc. Once he gets that doing x means he gets reward then you start to take back some control. If he loses it then just wait him out - it may take a really long time the first few times with all the behaviour you describe, but it does reduce quickly once he knows you won't back down. (this is the hardest bit and why its great to have people who are less emotionally involved than you). Often people think its cruel to let them get upset but I promise you that my son is so much happier not 'losing' it over small things and being able to go out and about and join in normal life & we are far less stressed. If you don't see results within 2-3 days of practising it then def try and get some prof input from a behaviour team.

The rewards need to be really motivating - the absolute favourite things. My son didn't seem to have any at 3 so we got loads of silly pocket money toys like light up spinning tops etc until we found something he liked. Try standing back and watching what he goes for at home - those are the things to hold back as rewards. Nursery needs a box too

Once its going well you start to widen out time between rewards. But every time you tackle something new go back to a few seconds then reward and build up again. You have to be really systematic and don't tackle it if you haven't time to see it through

We practised getting in the car, or walking a different route. You have to label when he is doing it well. So all day praise him if he's walking or driving somewhere and staying really calm and reward him, or just around the house if he's being good. Ignore when he isn't doing it well. Don't get upset or shout just stop and wait it out.

We did a walking programme (routes was a huge issue for us) and started it by actually giving him tiny pieces of chocolate or smarties. We would explain he had to do nice walking / keep calm & then he would get chocolate / a sweet and then every few steps give a reward, then again stretch out the amount of walking before getting a reward. every time we gave a reward we would make it clear it was for the nice walking (or staying calm in car etc) - whatever it is you are working on. If he didn't walk nicely I pulled him back a few steps and did it again. He learnt really quickly what earnt rewards and what didn't. We found this changed behaviour quickly and we could fade out the sweets for other rewards and the time between rewards. so you could literally practise getting in the car or walking to the front gate and back over and over (repetition is really important so they get lots of chances to be successful). If it doesn't go well leave it. There is no quick fix. Just stay calm - he didn't walk well so he doesn't get the reward, no big deal - go and do something else - then try again a few hours later or the next day until it does work. Keep practising every day until the ritual isn't an issue anymore.

once you tackle something you have to be consistent - even if that means sitting on the pavement and waiting it out for 25 mins & everyone else in his life has to follow through too. So with walking my son wouldn't get to go home if he kicked off. We would wait him out and then walk a tiny bit further then reward him for having done that so always try and finish on a positive with you in control.

Like at nursery sending him home is giving the message if i scream and hit I will get to avoid nursery and go home again.

Think ABC
A=antecedent - what happens before to start off the meltdown
B = behaviour (positive or negative)
C = consequence (what happens if he behaves that way)
sometime C, not A - is what is driving the behaviour - if he gets to escape the thing he doesn't like by hitting out - he's more likely to hit out. If you drive the route he wants when he behaves badly he will kick off.

If you change the consequence - so he gets to nursery and is just put in a safe place, with no toys etc & wait it out he will learn that the negative behaviour doesn't get him what he wants. Even if he just calmed down and played for 5 mins at nursery and then you took him home that would send a signal that he is getting rewarded for the good behaviour not the negative behaviour. Try and always end on a high & with a reward. Sometimes even half calming down is all you can hope for.

other things we have done with rituals is distract him into other less disruptive ways of enjoying that obsession e.g. video routes and watch them on his iPad in the car, introduced him to google earth so he can see roads without having to leave the house plus priming him for doing something by drawing maps of the route we will go so he knows in advance, you could use a photo schedule for the route to nursery (somehow a picture telling them what to do is less inflammatory than a person) and a picture of a reward at the end.

Work generally on activities when its 'my choice' 'your choice' and reward him for tolerating someone else's choice to help him learn to be more flexible. Again do this when you have lots of time. So try something at home and then when its working there, go for a drive & he chooses one road you choose the next direction. You need to get control at home before you tackle places like the car where it can be unsafe.

I also find giving some choice can often deflect a meltdown. So if he doesn't want to go to nursery when you are getting in the car offer him a choice between 2 snacks or 2 toys to take with him- sometimes by giving him back some control / choice can distract from the meltdown

It does get easier. You get better at stopping the rituals early and dealing with them quickly when they start to be problematic. They get to learn you are in charge and won't back down. Sometimes for safety reasons you just have to give in, and start all over again the next day.

I would def get the buggy or anything that makes life easier. You can't fix it all and you can't do it quickly. You need to just tackle one thing at a time. You need to keep yourself safe too.

knittingwithnettles Sun 15-May-16 15:50:43

Perhaps my child presented differently from Agnes's son, but although I agree wholeheartedly with positive reinforcement, I do think sometimes you have to accept that your child, for whatever reason, really does not LIKE some situations.

Trying to force them to do something they hate, day after day doesn't really achieve much except to make them anxious. The anxiety may be suspended during the activity you have trained them to accept, but the anxiety or anger or whatever it is may still come out in another situation, if you don't accept that sometimes children, for whatever reason don't like certain activities (for example large noisy rooms, waiting for a long time somewhere, sitting still, keeping quiet, going to sleep because they are scared, being parted from their parents) All the positive reinforcement in the world doesn't stop the anxiety building and coming out eventually, if you don't adjust in someway to the child's needs as well.

I just wanted to say that, because at the beginning of the your child's life you might get the message that conditioning them to accept certain things is the goal, and you being in control is the most important thing. I know there is a lot of debate about this, but if your child was repeatedly upset at going to nursery (which luckily he seems to like) I would hope that you would listen to him on some level, and change nurseries or remove him, rather than insisting that he "learn" to like nursery. I removed my son from his "Outstanding" school because try as I might to condition him that school was a good thing, it didnt suit him (this was at secondary level, so a long way off for you) because that school was wrong for him. I think all ABA methods should come with a bit of proviso on those lines.

In a nutshell, I don't think the method that Agnes has described is what we used on our son as a toddler nor was it as simple as Antecedent, Behaviour, Consequence.

PolterGoose Sun 15-May-16 16:03:03

Message withdrawn at poster's request.

knittingwithnettles Sun 15-May-16 16:38:00

I hasten to say, I have made my son do numerous things he didn't initially want to do, but if he repeatedly didn't want to do something I would listen to him, rather than think i need to reassert control, then and possibly try a different way of solving the problem.

Tamarandave Sun 15-May-16 16:52:21

Nobody on here even an expert child psychologist can give a proper diagnosis via a forum posting.
I can give advice however.
Avoid TV, DVDs
Dress him in natural fibres, ie cotton, wool, linen and keep him cool.
Give him food and drink that is not sugary, that is free from additives and as healthy and nourishing as possible. Lots of natural fruits, grains, veg and fish, egg, poultry. Avoid junk food and ready meals as much as possible.
Avoid eating close to bedtime. Try cutting out particular foods/drinks known to cause issues eg fizzy pop
Some children, particularly bright ones, like and thrive with a good strong routine. If he needs this, go with it.
Avoid anger at home, but be firm and in charge. You control things, not him
See how he is with other kids...not just adults. If he is ok and can socialise well with other kids, DS may not be autistic and certainly not severely autistic.
Seek advice from child psychologist and other specialists not just the speech therapist.

Go onto Dr Weil website...absolutely first class general health advice can be found there.

knittingwithnettles Sun 15-May-16 17:20:16

lots of parents are made to feel guilty about their children's diet, and it increases tension over food and mealtimes.

Most children of three will not be drinking fizzy drinks

A bedtime snack can be very helpful to get children to sleep peacefully, although obviously you wouldn't give your children a large chocolate bar, you might give them other calorific foods, such as cheese a digestive biscuit, cereal, toast, milk.

Dvds and telly in moderation can be a part of a happy household, snuggled up on the sofa with your Mum or Dad watching a family film or age appropriate low key tv (not scary Disney) is not something to stress parents out over, especially parents whose children require over and above the normal amount of attention.

I take issue with the idea that the parent is always in control or should always be in control. The parent should be "reliable" and consistent but that is something different.

PolterGoose Sun 15-May-16 18:08:50

Message withdrawn at poster's request.

MeirAya Sun 15-May-16 18:21:05

Philosophically, I'm with knitting & Polter. But I'm not averse to a bit of dog-training for the dc when necessary- pretending they were puppies & practicing stop-go-stop-go with Smarties was truly fab!

Worked well when we had a big issue with them all running off in different directions.

(NB- probably found if most helpful with the NT one wink)

MeirAya Sun 15-May-16 18:25:48

The main difference between ABA and dog-training should be the respect we have for our dc and their needs.

A dog is cute, but basically a possession- it should (always) do what it's told cos humans are the boss.

A dc is cute, but basically a small, semi-autonomous other-person - s/he should (hopefully, sonetimes anyway) do what s/he's told now because it's how we ensure s/he gets to grow, develop and become gradually more autonomous.

teaandbics Sun 15-May-16 20:31:53

Hello All. I'm so sorry for the delay in responding and thank you all so much for taking the time to write with advice. I've been knocked off my feet with a vomiting bug so have had a pretty grim weekend!

I am going to read through all of the comments properly and come back, hopefully later tonight if I'm feeling a little better otherwise tomorrow. As I said, this is all very new and we are trying to navigate our way through so much information and feeling a little lost, so I genuinely am so grateful.

AgnesDiPesto Sun 15-May-16 20:36:19

Well I sort of expected that response and hesitated to write it expecting the backlash. Its hard to explain what is a clinically proven, ethical and complex procure in a web post. I said if you don't see a change within 2-3 days stop and get advice. I don't say force them to accept the situation day in day out- I say work at building up tolerance to change with positive rewards gently over a long time until its not a problem anymore. Practise a little each day.

In my experience my son gets over it very quickly and totally forgets it was ever a problem - its not the situation which makes him upset (the going to nursery) its the breaking the rule he has made about it (I will only go one way). The question was about rigidity and repetitive behaviours - its actually not clear whether the child hates nursery or is anxious about it or not. People are making that assumption but to me this sounded like it is the rules he is placing around the situation and the breaking of those which is causing the problem. I would guess changing nursery would make no difference whatsoever as he will just invent a rule for the new journey and get upset when that rule has to be broken. at that age my son made rules about everything.

I don't know many people whose children were as ritualistic as mine so am not sure whether other posters can really advise if they haven't experienced it, but i do know that if we had not addressed the rituals then frankly we would be housebound now and unable to go anywhere. It doesn't stop at one ritual - go left down this road - it becomes more and more rules piled on top of each other until if you deviate even a tiny bit its like the world has ended & the behaviour outbursts are extreme.

If we hadn't done anything my son would be holed up in his room watching nursery rhymes on repeat and refusing to go anywhere, eat anything, not having learnt any skills (because his entire day would be spent acting out rituals), still self harming and being aggressive whenever we tried to get him to do anything.

I don't feel the need to be in control all the time - except where the behaviour is harmful - which in my view self harming, aggression, avoiding normal life, not being available to learn any skills, endangering people in a car etc is. We are also talking about a 3 year old who cannot make good choices - I don't have a problem with taking away choice from a very young child who is making bad choices that are harming him and others. It often seems to me that the non ABA approaches which are presented as so much kinder and respectful give children choices they shouldn't have & harm not help them in the long run.

My son has learnt to tolerate 99% of situations. He is the least anxious child with autism I know. Everyone says this the teachers, other children at school. The anger and anxiety doesn't come out in another way eventually - he doesn't display anger or anxiety in day to day situations at all. That is total nonsense that it will have to come out. I am fed up of this idea all kids with autism are horrendously anxious about everything. My son isn't because he is well understood, supported and yes - because he has consistent boundaries and clear expectations, which help him understand the confusing world around him & make him happier and safer. He is much much happier now he doesn't have a meltdown if we turn left instead of right. I am much happier he is not kicking me, endangering me when driving or hitting his brothers.

This boy has had to stop doing something he loves (watching tv). His mum is pregnant and risking being hit and hurt (& the baby injured). They can't leave the house or go in the direction they need to. What kind of life will that be for any of them. we are not talking about removing self autonomy from a child who is capable of making his own choices, we are talking about a developmentally delayed 3 year old. I don't buy into the idea that just because my 3rd child had autism I should have allowed him to throw tantrums, self harm and injure other people at age 3.

I know lots of families who haven't tackled the problems when the children are small. They spend their days stuck at home posting photos of trashed rooms and bruises on social media where their now much larger kids have beaten the crap out of them. They are the parents who have to call the police for help while they lock themselves away in rooms to keep themselves safe. My son would have been like that but thanks to ABA he isn't. he's in mainstream, he's never subject to restraint, he's well liked and not feared by the other children. Everyone comments on how he's always happy, laughing and gentle. I don't regret for a minute teaching him what behaviour was and was not acceptable when he was very young. I have no problem at all with the parent being in control when a child is 3. My other 2 kids were very advanced at 3 but still got very limited choices because they were not mature enough to make sensible ones.

It will be really really obvious whether this child really hates nursery or just had made a rule about getting to nursery because no chocolate in the world would persuade you to stop getting upset about a situation you really hate. The fact my son would totally forget to get upset after practising the situation with a few small rewards proves that the situation was never that fearful or horrendous in the first place. Its the rigidity that is causing the problem. Once the rule was broken he could move on. If we had never challenged him to tolerate something new he would never have discovered that he likes going on a bike, padding in the sea, walking on the sand etc - all of which he refused to do & got upset about and we had to work on desensitising him to - yes by using rewards. His life is fuller and he is better developed because we didn't decide that meltdowns had to be avoided at any costs & we should just give up on that activity

I don't know a parent who hasn't used rewards to bring up their kids whether its getting an ice cream if they are good while you go round the shops, or earning marbles in a jar at school etc. yet its only ever called dog training when its a child with autism using ABA. The other kids stopped having tantrums because they became socially aware that having a tantrum in the street / school made people stare at you or other kids laugh at you. My son had zero social awareness so he need tangible rewards to make a better choice.

My son gets lots of autonomy and choice and respect appropriate to his developmental age - but he doesn't get to lash out and make everyone's life a misery. He's a happier person as a result - not the angry or anxious person described.

PolterGoose Sun 15-May-16 21:14:25

Message withdrawn at poster's request.

knittingwithnettles Sun 15-May-16 22:00:41

Agnes, I agree so much that breaking through the "rules" mindset, is incredibly important, and building in flexibility is invaluable for long term happiness. I just felt uneasy, that a new parent might misinterpret your phrase about him learning to accept that if he lashed out or kicked off he wouldn't ever get to go home from nursery. Children do get upset for all sorts of reasons that to us seem irrational, it doesn't seem like a very good rule of thumb to automatically disregard every meltdown as non-negotiable. But I understand that you meant this in the context of "transition" which is what the OP was asking about, so I apologise if this was of a trigger for me, personally.

teaandbics Tue 17-May-16 07:44:29

Sorry for the delay in coming back to you all. I've been knocked off my feet with this bug 😞. I'm really grateful for all of the messages. They've given us loads to think about.

Agnes- Thank you so much for writing such a detailed message. I have been reading lots about ABA, but it's very new to me so I found your post really helpful. We are keen to explore all options, so finding out more about the various approaches is exactly what we need (and we will also look into ABA behaviour consultants).

Truth be told, I have always been a bit nervous of rewards. Not in an ideological way (as you say, we all use some kind of reward with our kids, often without even knowing it), but because I have envisaged my son getting fixed about the reward itself and that opening up a whole other can of (rigid routine) worms. I also worried that he may not be motivated to do things other than when we offered a treat! I realise, though, from what I've read and from reading your posts that the approach is a lot more nuanced than that. I'm going to find out more and keep reading up as despite being hugely encouraged by the progress you have made in dealing with these rituals (your son sounds very similar to mine, who is also very ritualistic!), I'm not sure I have the confidence to try an ABA style approach myself yet. (I'm worried that I'll inadvertently approach it in the wrong way and do exactly the things I've noted above!). I will have a good think about the steps you have outlined and I also need to give thought to what would be really motivating treats for my son. Ultimately, we have to work out what is the best thing for our boy, so we are not wedded to one approach or another and we are trying to find out what that may be.

You made a great point about praising him for good walking or behaviour in the car while it's happening. Often, I'm so tense during a journey about an ensuing meltdown that I forget to praise him for the parts where it is going ok. Practising little journeys and getting into the car also makes so much sense rather than waiting till I'm actually on route somewhere and needing it to work out.
It is so encouraging that you were able to make headway with the fixed rituals. It really has been debilitating having to face such huge battles about journeys.

I know there was some concern (which I'm grateful for) that I would interpret your advice as suggesting that I had to make my son go into nursery even if he hated it. I didn't read it that way and I would never force him to do something that was making him miserable like that. As you picked up, he actually loved the nursery on the two days that I managed to get him inside. Journeys are the problem, and would equally problematic with another nursery.

Some of your alternatives for dealing with the journey obsession sound great (Google Earth etc). Unfortunately, as we've been tv and screen free for a long while now (as they were also a cause of huge meltdowns when they were turned off), I don't think they would work for my son, at least not quite yet.
I am definitely going to get the buggy-I'll need to keep both my son and the baby safe and to make life easier for all of us so it makes sense, at least until things (hopefully!) improve.

Knitting- I completely agree that it would be futile (and cruel) to force my son to do something that he hated, and we would never be happy to use any approach that required us to do that. (Not that you've said this, but it's not about control for us. We have a very headstrong little boy and we love that about him. We don't expect him to do what we want or say all the time, save for non negotiable safety issues (and even if we did it would never happen with his personality!). We just need to make all of our lives a bit more manageable.

I'm not so wedded to the idea of nursery that I would put him through the ringer over it. It was to give him some more time with little friends, as he loves playing with other kids. It's been the two of us at home together for the last 3 years and this is the first time he's been to nursery so we are really keen to go easy with him (so much so that we made clear to the nursery that we didn't intend to leave him on the settle sessions till we were 100% sure that he'd be ok and they were fine with this). As it was, he loved it when he was there. For us, the issue is not just how to get him to nursery (which ultimately we could leave if it was just not working), but how to manage any journey as they have all been a battle. Of course, some trips just have to be done (to see the doctor etc) which is why I've been so desperate find a way through it. ABA is something that I don't know a great deal about but I'm investigating everything in the hope that I'll be as informed as possible re the referral. Like everyone has said, flexibility in our approach is key.

My DH has been holding the fort while I've been unwell and has been practising the 'social story' on journeys. He tells me that it really does seem to be helping, which is fantastic. While we thought we had been doing this already, your post made us realise that we have to break it down much, much more than we have been, and really amp up the picture of what was to come. Thank you!

Tamara - thanks very much for your suggestions, especially the Dr Weil website (some great stuff in there). We will definitely make sure that we don't limit ourselves to seeking help from just the speech therapist as we need to get to the bottom of whatever else is going on. (You mentioned that we should look at his interaction with other kids. He is very sociable and has some friends that he sees regularly. Apart from being a good bit behind them in speech and a much busier, rowdier baby - he's not one for sitting down/still and never has been, apart from when he's reading which he loves)- it's hard to see too much difference (for us at least). He's very gentle with them, has never hit any of his friends and basically just wants to have a laugh and play with them). That said, I've had a fair few play dates desperately trying to encourage him to go to the place where we're supposed to be meeting or playing (soft play, friend's house, park etc) and because of his rigidity it has been a horrible battle to get him in there (even when he can see his friends).

MeirAya - I guess I used a kind of 'dog training' route for teaching my son to hold hands. When he first started walking outside on the pavement, literally every time he stopped holiday hands or tried to wriggle away it was straight back in the pram even if we'd only walked a few steps. (I was motivated by fear! He's always been fast and is very stubborn so I knew he'd be a bolter!). So I agree that 'dog training' can have its place.

Poulter - Can I ask how you used backward chaining? Sounds like it was a hit for you. I very much agree that no one approach is set in stone and these are all tools.

Thanks again to everyone. Your time and suggestions have been hugely appreciated 💐

whydidhesaythat Tue 17-May-16 19:37:28

Good luck

Pictures helped me enormously. Very verbal people like me tend to over rely on words, even once we have learned to simplfy them

We were lucky in that he understood real photos so we didn't need pictograms. I still have some of the photos up ( though I shudder a bit when I look at them, it was a difficult time)

I lived on this board-, was SN royalty!

teaandbics Tue 17-May-16 22:00:16

Thank you!

Great advice, thanks. We're just realising how important pictures will be and how much of a visual learner he is.

I think this board will be a new home for me too! It's an amazing resource x

whydidhesaythat Wed 18-May-16 07:54:25

Yeah, a sequence of photos before you leave the house. ...

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