Just accepted we have a problem- scared and worried about what next

[Nineveh]

Hi, I'm new here but not sure where to go for some help and guidance.,

my DS, 7, is struggling. He holds it together at school but has major meltdowns at home most days. He throws things, lashes out, threatens to jump off his bunk bed and gets really distraught. Triggers can be bedtime, getting dressed, leaving the house, or something his 5yr old brother says. He loves swimming but we never get to a lesson without a meltdown first and twice last week he bolted down the road when confronted with something outside our usual plans.. Usually directed at me or my husband but increasingly at our 5 year old too - our 2 year old thankfully doesn't get that reaction.

School have been great and identified he is really anxious, particularly about friendships but he is really well liked and has a good group of friends. We have seen the GP on school's advice and are now on a 8wk waiting list for an appointment with the community paediatrician.

I have been in denial I think but the school and GPs reaction made me realise this is quite serious. I'm in tears all the time because I don't know what this means. What happens next or how to help him.

Any advice on coping strategies or anything we should or shouldn't do while waiting for the appointment would be so appreciated.

Thanks for reading such a long post

Sounds like our almost 6 year old. At the moment, something which seems to be helping us is distraction and giggles!! Doesn't always work, but we used this when she was tiny so kind of going back to that strategy a little. Occasionally, cuddles but sometimes the last thing she wants!

Also, not talking too much in that moment as seems to make things worse. Not rushing when possible or fussing.

Incentives and not rewards don't often work for us or will occasionally, for short periods of time before novelty wears off.

We have had problems with anxiety, transitions etc. Recent one was getting ready in morning.

Hugs, it can be so challenging, exhausting and hard to always keep your patience can't it?!

This sounds very much like our 7 year old, who was diagnosed with HFA (high-functioning autism) in December. We did think he may have PDA (Pathological demand avoidance) which is a sub-type of autism and is characterised by lots of anxiety about demands and being in control of situations. We've found that trying to present things as being our son's choice helped - so saying 'would you like to read or play quietly for 10 minutes before lights out' They need to both be choices that you're happy with, but giving him some control may ease his anxiety. It depends on our son's mood how he might react to things, if he's very anxious, I may need to stop all demands and have recently set up a den with lights in his bedroom for him to go and relax - I can't suggest this to him when he's very anxious as he may take that as a demand and resist, even if it's something he really wants to do.

I'd suggest picking your battles as well. There's only so much we and our son can cope with at the moment, so I've decided not to tackle his poor diet until my head's in a better place. If your son is finding swimming lessons very difficult maybe give that a miss until his anxiety levels are lower? It does sound that he's autistic and you may need to get in the habit of letting him know plans for the day or if you're having visitors etc. If our son won't get dressed, I find the best tactic is to act totally unconcerned and walk out of his room saying it's totally up to him but he may feel like a wally if he's still in his pants when it's time to go to school. A lot of it is about control, if you seem to make things his problem/choice instead of a demand he may feel more able to do things.

I would also suggest googling and doing as much research as possible to equip yourself with some strategies - what works for us may not work for you. Sorry to chuck loads at you - going out with the girls in a minute. Happy for specific questions if that would help - we're a bit further ahead than you and recognise the feelings! But honestly, you will get through this. Your son will still be the same, even with a diagnosis x

The one bit of advice I'd give you is work with your child, not against them. If you know that your child doesn't react how a 'normal' child does to stress, how can you avoid it? Even if temporary, what can you take out of his life that will avoid a meltdown? eg, if he likes swimming but hates swimming lessons, can you stop doing them and just go swimming for a bit? For the things that you can't avoid, what can you do to avoid surprises? Can you follow the same routine each and every day? Can you have a visual timetable about what going to happen when (PECS are really handy - look on ebay)?

As for the assessment, it's stressful process and it may be long, very long. Bear it mind that you will most likely have an initial assessment and then they will decide to assess from there. That next stage could be a year from your appointment in 8 weeks. Start keeping a list of everything your DS does that is out of the ordinary. It will be very useful when you see the paed.

If the school is onside and supportive, that will be very helpful as they will ask for their perspective.

And just remember that whatever happens, he is still exactly the same boy as he was yesterday and will be tomorrow. Assessment/diagnosis doesn't change him; it just means that you can name the issue and get him any extra support he may need to navigate the world.

This board is great if you want a hand hold or a rant or advice or anything really. It's kept me (largely) sane anyway :)

user1467633132 - your little one sounds so much like our DD! She is going through the assessment process at the moment.
Great info and tips there.

Thanks everyone for your replies. We have been trying to adapt to do whatever works best but some of the things that cause a meltdown are things which he loves when he gets there and says how much he loves afterwards, so we don't want him to miss out on things he enjoys.
I guess it's working out how to lessen the anticipation beforehand.
My husband has such faith that we will have an appointment and get some help. I'm terrified that we won't and that if we don't know what it is, nor will anyone else.

It feels like a long road ahead so a big thank you for your support - I will be doing lots of googling and reading but it's hard to know where to start as I don't want to jump to our own conclusions about the cause.

That sounds like it's not the activity itself that causes the meltdown, it's the getting there.

If you don't have PECs (they're little cards with pictures on them), I really recommend them. We have ones with a 'now, then, next' board and a morning, afternoon, evening board. If he knows what's coming (and you may have to talk it through with him a couple of times - DS's processing is awful), then it may help reduce the anxiety.

We also have a permanent one in the kitchen which shows all the steps (and the order) before school.

I personally would take a step back from the things that are causing him anxiety to anticipate, even if he enjoys them when he gets there. Or reschedule the lesson so that it doesn't follow on from a busy day or another demand. Is the lesson after school by any chance?

I would also google "sensory diet". The Out of Sync Child is a good one to read and the Out of Sync Child has fun. If you see the professionals and you find there a generic list of strategies given to you, and advice to join a parenting class, take a deep breath, accept that they do this "gate keeping" bollox, and ask for a referral to an OT from your GP or failing that, try and find a private OT. An OT is not just for children with obvious disabilities, it can mean you get help with planning activities, environmental stressors, calming activities, destressing activities. It sounds the swimming is perfect for him on an OT level, it is just the social and "planning" side, the executive function side that makes it a source of anxiety for him.

So, in short, there will be lots of activities that are benefit him, like the swimming as you quite rightly say, but it is the way you organise them for him that will make the difference.

I can give you an example. Son wants to go camping on lawn aged 8 with his 4 cousins. Has a meltdown over the sleeping bag; he wants a sleeping bag belonging to other child, which is a bigger better one. Parents identify that in fact he cannot cope with a group camping situation unless they prepare him better (maybe when older) and make sure that some of the obvious stressors (other children with different sleeping bag!) are removed. In this situation, we decided to put him to bed in main house, and take him out of the situation although he claimed he wanted to go camping. At 9 we tried again, with Dad present, in his own tent. Worked much better. At 10 he was able to camp with the other cousins and cope with the challenge of sleeping bag, different setting, other children, self management, getting out of loo in night for a pee etc. I am just using this an example of how these skills develop and resilience develops but in the meantime you get an almighty mess if you try and force the issue or do things that other children can manage fine on the basis that it will make him resilient.

Son diagnosed at 8/9 so feel your pain. He is doing well now, but I think a lot of the input has been from us, reading books, seeing an OT later on (too late really) and tailoring his life to suit him, which included a period of home ed at 11 - 13.

we also saw a family therapist at one stage, a waste of time on many levels, but she did say one incredibly useful thing.

When your child has a tantrum or meltdown, how do you discipline them and say no to whatever they are screaming about? The golden question. She said, you have it the wrong way round. Start from BEFORE the tantrum. What triggered them? Did you prepare them? Did you talk through the activity? Did you factor in a loophole for change of plans (ie if it rains we will not be able to go, or if the bus is delayed we will have to wait for ten minutes and we will look at a book/eat a biscuit/count yellow cars - sorry I am being facetious)

At the time I thought she was fobbing us off, but this is the only way to stop tantrums...THINK AHEAD, how can you make child's enviroment less stressful, how can you give child skills to deal with challenges. Supernanny will not help you here.

My son has just gone off on a 12 mile walk with his Confirmation Group, and is preparing to go off to a football match by himself afterwards, standing for two hours. He has organised his clothes, he has found his shoes (always source of stress) he has managed to find a belt to stop his loose jeans falling down (!) He has accepted that he cannot get out of the walk, and go straight to the football Match, which was a source of complaint (!) He has thought through the snacks he needs to purchase, and asked my advice on them.

This child had none of these planning skills at 8, he would have been in a complete state about every aspect of this trip unless supervised by very attentive adult. But NOW he manages. He has independence and he has resilience.

My son is exactly the same I think he doesn't like the 'pressure' of us telling him to do something or go somewhere. He usually refuses but when he gets to the place has so much fun and talks about it for days after! As he has high functioning autism I thought I had to constantly prepare and talk to him in advance etc about going places. This wasn't the case for him, I now say it once and we go and it's so much easier! It was stressing him out by constantly preparing him...

We talk it through once and that is it. We try to distract him and talk about other things rather than the thing he is worrying about...otherwise what we get is fixating on fears and worries in advance. We try to prepare in a very very low key way, just a reminder really, and don't tend to give him the impression that he can choose not to do something, or he would opt out of too many things. But we keep demands low.

Well, we didn't go to swimming today - he kept changing his mind though and the deliberating seemed almost as stressful as going.
Had a good day in all until I was saying goodnight and he realised he was hungry - cue Armageddon because he didn't want to have to brush his teeth again if he ate something.
I can cope with the crying, shouting, throwing meltdowns but it's when he is outrageously rude and hurtful to us I find it really hard. I know he doesn't mean it and we stay calm and reassure him but twenty minutes of 'you are the worst parent, cruel to me, don't care, I'm not part of the family' etc still feels rough. Then comes the remorse and tears - he says he doesn't know what happens and he feels completely out of control.
At least he's asleep at last I guess!
Thanks for the tips, I will look at PECS and see if that might help.

I have to admit toothbrushing was not something I worried about much with ds. He hated it so much I just stopped attempting it. Getting him into the shower was difficult enough at one stage. He ended up with perfect teeth though, not a filling (ate a lot of cheese and carrots). And now brushes his teeth himself. Fluoride is not meant to be that good for you, I've heard anecdotally from some people on Mumsnet, so I'm glad in a way I didn't push it.

We used to have a little plate of food at bedtime, sandwiches, digestive biscuit, cut up apple banana, yoghurt that sort of thing as we often had the last minute I'm hungry insisting on going down to the kitchen, getting out of bed, shenanagins, and then all three children would start saying they were hungry, and try and come down for a chat, so in the end we just pre empted it with a second snack before bed (two kids brushed their teeth at least) Might that help? I think it is all about picking your battles..as they get older they develop new habits and demands and the old systems don't always suit any more. Also they get so wound up before bedtime, there seems to be a lot of chatting and talking through required to get them off to sleep (mine were all practically the same age so it felt full on when their habits changed, but also more "developmental" and to be accepted)

Oh you poor thing! I have been told what a hateful mother I am so many times that I've lost count. I've even had messages left on my pillow describing how horrible I am.

BUT DS has got much much better in that respect of late. Partly because he's older (nearly 10) but partly because I'm handling him better.

It's vile though :(

Thanks JigglyTuff, it helps to know others have been getting the same treatment and it gets better with time.

I think toothbrushing can feel like an assault for some children - it is really a horrific experience for them, especially when done by someone else. I'm sure your son only reacted so badly because it made him so anxious, not because he really hated you. He doesn't really have any other weapons in his arsenal, if you think about it.

Yes, I can see that. We just had no idea he would react like that as tooth rushing isn't always a problem. It happens so fast that one minute all is fine and the next it's total chaos with things flying and screaming, and of course by that point we can't get through to him. This is all quite recent for us, it's been steadily building since about October and just seems to get worse each week (although maybe that's because I've started writing down what happens to try to identify triggers and when it's written down you can't pretend it isn't happening!)