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Dd's behaviour is really really hard to live with and I am not sure what to do next

(39 Posts)
Used2bthin Sat 01-Mar-14 20:12:32

Sorry for the melodramatic title but it has been that sort of a day. Dd is 7 , has asd and a genetic condition. Also possibly precocious puberty at the moment. She is really violent , just pinches, pushes, bites and hits routinely. This is me, dh and her baby sister when she can get near, today she walked past her sister and then just grabbed and pulled her hair really hard, completely out of the blue.

She also kicked my dad which was awful as he was really annoyed , he'd taken her out and had a lovely time looking at trains (her obsession) for hours so I think it was a shock she kept going for him.

God its hard, dh and I just keep the girls separate when its really dangerous but tomorrow I will be on my own for a bit with them. We have all sorts of support and she isn't as violent at school, I feel I can't handle my own child's behaviour and I am not sure things will get better , she is getting more able if anything, she managed to lock me and dd2 out of the house the other day with a key I didn't even know existed , I had to climb through the window.

Sorry for the rant I just feel at a loss.

Used2bthin Sat 01-Mar-14 20:13:06

I meant to put this is sn chat, definitely one of those days.

PolterGoose Sat 01-Mar-14 20:32:58

Message withdrawn at poster's request.

Used2bthin Sat 01-Mar-14 20:52:41

Thanks poltergoose, yes you are right it must be anxiety and it really is as if she can't stop herself , she went to hit my mum earlier and stopped herself so she does sometimes try not to.

Problem is it seems she can't just sit watching tv etc as she's always racing around the house. She occasionally goes off to her room to play with her train set which calms her down.

Sensory wise she does calm down watching her lava lamp thingy sometimes and I did used to do massage etc as part of sensory diet but she attacks me these days if I get too close. Also today she did what the OT describes as heavy work for ages then was calm enough to come in and sit down building duplo for a bit but then randomly attacked dd2 again. Its exhausting and feels like even when we try to do things properly it doesn't work, I think it does help but may be my frame of mind today it just feels impossible with dd2 needing so much attention and climbing over me constantly whenever I try and get time with dd1.

I think we do need to be careful about doing too much with her, especially at the moment, we have relatives popping in a lot which is lovely but sometimes even that is too much. Problem is that to keep her calm it seems we need to separate the children but then dd1 gets upset as she wants her sister with her, neither of them want to miss out etc. I wonder if I need to go with extreme structure and do some sort of plan for weekends which doesn't change for a while, or would that mean she would get stick in it too much?

Used2bthin Sat 01-Mar-14 20:55:45

Will start keeping a diary of behaviour too thanks.

Hope you are well?

PolterGoose Sat 01-Mar-14 21:03:36

Message withdrawn at poster's request.

Used2bthin Sat 01-Mar-14 21:07:22

Sorry me again, just wanted to ask if you don't mind, about the sensory stuff you mentioned? Do you mean sensory diet like massage etc or gym ball type exercises etc?

Dd used to lash out at school a lot but since being in special school its hardly ever and they do a lot of OT stuff there. Am wondering about brainwave therapy centre as her motor skills are still pretty low for her age and also I think it could help to have a look holistically as this has never really happened with her, I wonder if they could help with a realistic therapy programme. We've moved so have more space but ATM dd runs around the house , rocking etc and its hard to know how to get her to stay in one place (safely ) to do any therapy stuff but it needs to happen I think.

Used2bthin Sat 01-Mar-14 21:07:41

X post sorry will read yours now

Used2bthin Sat 01-Mar-14 21:13:24

Thanks polter that's answered my questions, I feel a bit lost with it all and am finding it hard to decide what to do/get to help so that helps focus me.

That's good you are feeling things are going ok at home but sorry to hear about school stuff.

She has a trampoline (she won't go on it ATM, basically of she gets the impression I want her to do something she goes off it!!) and a gym ball but I struggle to get her on it without dd2 so it isn't happening every day. She likes spinning and rocking so will look at bilibo and ikea chair if she isn't too big for them.

I think I have become a bit stuck I. A negative frame of mind because the genetic condition side of things have been going badly and it all feels too much to deal with sometimes but actually she needs to calm down even more because of it.

Redoubtable Sat 01-Mar-14 21:19:27

Poltergoose has given great advice (as usual)

It is relentless dealing with one child who is aggressive; trying to manage their anxiety/sensory needs, trying to protect other DC and worrying about the reactions of friends/family.

If your DD has just started on her sensory diet, the effect of the calming activities could be quite short.
With practice and regular work, the effects should become longer lasting.

Ideally the OT would be working to help her to learn for herself what input she needs to calm herself, and to help DD figure out when she is starting to feel overwhelmed so that she can look for appropriate sensory input instead of hitting.

I've become a fan of mindfulness in helping children with ASD/sensory processing ... like this one

PolterGoose Sat 01-Mar-14 21:20:20

Message withdrawn at poster's request.

PolterGoose Sat 01-Mar-14 21:24:09

Message withdrawn at poster's request.

Used2bthin Sat 01-Mar-14 21:40:21

Hi redoubtable, thanks and I will try and have a chat with the OT at school as I haven't yet met her but she does work with her (fairly recent switch to special school so change of some professionals)

I wish the sensory diet was new, I feel awful but we've had it since she was four I have just let it all slip since having dd2 and dd1 is so flighty ATM that I don't know where to start but it did help, I remember getting her to school one day and realising she hadn't dropped to the floor once on the way! So it must have worked. Another time I forgot to do her massage before leaving the house and we had a dreadful walk to school, running off, pinching me etc. she now gets the bus and is less anxious before school but the behaviour is when she gets in and has to share attention with dd2, just talked to dh about triggers and the worse times are actually when she has had full attention then sees us interacting with dd2 after, its like she can't handle the switch in attention(as she may see it) and feel insecure.

The mindfulness doe look great I think her understanding isn't up to it yet but maybe one day.

Poltergoose that all makes a lot of sense thank you. Dd was digging and carrying blocks of wood around the garden today, it did help but I suppose I need to not be disheartened because she then went for dh but the context was, a nice long time helping him in the garden then we swapped so she could make pizza with me and he was in another room building towers with dd2, dd1 made pizza with me (whilst pinching me occasionally of course!) then went in and saw him with dd2 and went for him, hitting him in the head. So I have now identified that a- the heavy work did calm her down enough that she could at least sit for a few mins to do an activity and b - she had had a lovely time with dh then felt jealous/ anxious seeing him with dd2 so hit him.

So I do feel less lost as it seems clearer now, thank you because that has really refocused me.

Redoubtable Sat 01-Mar-14 21:41:01

Cross posted with OP and polter.

Poor motor planning and co-ordination is common in children on the ASD spectrum.

To my mind, it's a bit of a chicken and egg situation....they cant register sensation well so they move to increase the information coming in, but the sensation coming in is dealt with inefficiently so they learn to move inefficiently etc etc so they try to move more to get better feedback but it's inefficient and on and on (this applies to sensory seekers; sensory avoiders have a similar avoidance thing)

Core strength work in combination with heavy work is helpful, as is the deep breathing in mindfulness.

Used2bthin Sat 01-Mar-14 21:43:26

Oh my goodness that alert programme does look right up dd's street, she often talks about her battery running out when she is tired so I think she would get the engine analogy.

Used2bthin Sun 02-Mar-14 08:11:44

The sun is shining and so far so good this morning despite being up between 2 -4 with dd2 then up at 6 with dd1 . Quiet moment while they wach tv , one of the rare moments when life feels like it should be!

Anyway won't stay on here as its asking for trouble (dd's will notice I am occupied and chaos will once again begin!) but just popped in to ask if anyone knows whether the ikea spinning egg chair has been discontinued? It looks really good for dd and I was thinking I will order it, I am sure I saw it last night for sale on the website for £40 but now can't find it, may just be my sleep deprived brain.

Also ordering a dog gate today so I can keep them separate occasionally as we have a small space for playroom just off the living room but the fact its open plan means neither child can have space from each other. An OT visited the other day and suggested it as dd1 is more likely to play alone if she can see me and then if I need to be calming her down without dd2 getting kicked in the process, I have a way of separating them but still seeing both.

PolterGoose Sun 02-Mar-14 08:29:09

Message withdrawn at poster's request.

Used2bthin Sun 02-Mar-14 12:33:02

Thanks polter. All went ok till I got too sure of it all and tried to hang a curtain in dd2s room while looking after them in there. Turned around and dd1 had climbed onto the window sill, said get down dd1 so she did, by jumping into dd2s empty cot. It broke. Managed to get another via a friend at dd1 s school (totally outed myself now if anyone knows me!) but argh why did I not think through telling her to get down!

Dh home now so have escaped upstairs for a bit. Feel like our house is going to need to be adapted with furniture strong and screwed down etc at this rate!

Dd1 is the size of a 10-11 year old, she won't grow to be that big due to her condition but currently very big so its good to know your 11 year old can squeeze into that chair.

Also looking into garden swing or something that is strong enough to hold her weight and boisterous play but more in a window shopping way as we can't actually afford it yet.

Used2bthin Sun 02-Mar-14 12:33:54

When I am stressed I shop, seems to be my coping mechanism!

nf1morethanjustlumpsandbumps Sun 02-Mar-14 15:35:44

Is there a support group that can help give advice with her behaviour if its connected to her genetic condition? I know from our experience with our online support group we've been given tips specific to NF some very bizarre but really work.

DS is very tall for his age too and we are possibly going to deal with precocious puberty our doc reckons. He is almost at my shoulders now and as strong as a bull so not quite to easy to settle when he takes off.

Its been one of those weekends at our end too. Getting work done at home and DS is not impressed with the influx of plumbers, electricians and builders.

Used2bthin Sun 02-Mar-14 18:52:55

Thanks nf1 for your reply and sorry you've had a bad weekend too. Dd's dad called this morning and its been hell ever since. She's seeing him tomorrow but I think it was the fact he apwas with his other children when he called (her half sister wanted to talk to her so it was a nice call, I think she just always feels mixed up after)

Anyway she has thrown a chair, drawn on the wall, scratched the tabled deliberately, hit and pinched and kicked me and dh every time she walks past.

Will be back I. A min, had a mini break from it while she was on the toilet and dh has dd2 downstairs!

Used2bthin Sun 02-Mar-14 18:59:47

There is an online support group and they meet every couple of years too but its a fairly rare condition so I only know of one other child there with autism as well as the condition.

The two really set each other off, the condition often makes her feel agitated especially at the moment and she has to deal with horrible medical stuff but the autism means she can't usually communicate how she feels or control the emotions.

I had asked to postpone a test for precocious puberty as she has seizures when she has cannula a in so I wanted to wait if we could as they are testky every few months for it anyway. I was told that was ok but to phone if things didnt improve with her mood so I will phone tomorrow, if anything just to get treatment started ASAP because I hope it may help a bit if it stops some of the puberty stuff. It may just aggravate things but I need to let them know I think as this isn't manageable.

Used2bthin Wed 05-Mar-14 09:38:09

Things have gone from bad to worse here as dd's steroid dose was upped yesterday at bedtime dose which then causes insomnia. We had to up it following the results of blood profiles and because of the potential puberty stuff there is no chance of lowering it for a while. We have melatonin so she got off to sleep fine but has been up since five am and I am worried this will get worse as it often does after a dose increase.

This combined with the behaviour stuff and anxiety, and her being massively emotional is exhausting enough but dd2 wakes 7-8 times a night still too and even sharing waking a with dh and going to bed at half eight it is really affecting me. I have a new job and I love it, it is my time to focus on something else but I am scared I won't cope with it with all this going on.

I had a funny turn/faint yesterday which I think was low blood pressure or something but I can't help but feel that my sleep deprivation and stress levels can't allow me to stay healthy long term , how do you all do it? At the moment I just drink coffee constantly and that can't be good for me either, I am on my fifth if the day already just so I can get a bit if work down before seeing the dr about my funny turn yesterday.

PolterGoose Wed 05-Mar-14 10:05:24

Message withdrawn at poster's request.

Used2bthin Wed 05-Mar-14 11:03:04

Thank you, and it is good to hear that you are past that stage so it may one day end here too, at least for the youngest one anyway!

The thought of no caffiene sends me into a cold sweat! Its terrible but I take herbal sleeping pills at night to counteract the coffee. The two of those and my anti depressants keep me sane. Also I find swimming or walking really help but feeling too shattered today for those. And feeling fat but can't stop eating to stay awake!

Yes thankfully (!) dh has cleaning obsession so he sees to that and I sort the washing out. He is about to begin cbt soon though so I bet we will have a messier house as its his way of feeling in control, to clean.

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