DD's behaviour is deteriorating fast - help!

[lou031205]

So pre-school have said that DD's (4.6) behaviour is "unlike even her" since returning from half-term break. Lots of running away both in and outside preschool. Outright defiance. Shouting at the teachers to "leave me alone!" Trying to escape the preschool as I am signing the register, which she hasn't done since she started the preschool 2 years ago. Blatant ignoring of rules that she knows full-well she needs to obey re: off-limits zones (kitchen etc).

Ho hum, I thought - preschool were struggling before half-term, and things are no different there.

But at home she is out of control also. Climbing higher than she's ever climbed before. I get her down, and within seconds she is doing it again. It is dangerous (she is ataxic) and also leading to DDs 2 (2.10) and 3 (14 months) copying. It has got so I am putting her in danger if I leave the lounge for even a few minutes to use the toilet. Nowhere is safe. Nothing is out of reach.

I was quite frazzled when my homestart volunteer arrived, and told her the situation. I have also been having almost daily migraines, but hopefully new medication will kick in soon. I decided to go to bed. When I got up the HS volunteer said to me that DD1 has definitely got worse. She said you used to be able to get around her, to cajole her and appeal to her better nature to do whatever it was that you needed her to do, or stop whatever was dangerous.

Now, it just seems that she really doesn't care. Nothing has an impact, nothing will reliably motivate or deter her. She is set on her own course of action/thoughts, and you just can't break in.

We will get results of her sleep-deprived EEG on the 16th, hopefully, but apart from Epilepsy has anyone got any ideas about what the cause might be, or what we can do??

SHe is climbing more, putting things in her mouth more, etc. But I have had no OT input since Dec '09. Can't ever seem to get to speak to the OT who has taken DD1's case over.

So you don't have a diagnosis then? How old is she?

I would concentrate on getting OT input I think. My sil is a paeds OT and I know they are hugely over-burdened. Do you know where the service is based. We could google for a reception number and then you could ring on Monday and just hang on till you get to speak to somebody? Or could your HV facilitate that?

Sorry - am stupid - I read her age then forgot it! Am numpty!

Hi lou

Sounds like a tough time especially as you are unwell. No real advice other than making sure she gets plenty of outside time in garden or park. it seems to help ds be more settled. And making room as child-proof as possible.

Is she worse when you are poorly? If I'm ill or down my son is always worse as I don't have the energy to set up activities and give him lots of postive feedback. But that wouldn't explain why her behaviour has worsened at nursery.

You have to get an email address for OT or write - it's such hard work but the only way you get a response it seems. I have to pay for private OT as in my area they only treat children who need equipment such as wheelchairs.

Sounds like you need OT - badly!!
Are there any things that work for calming here - rocking, bouncing, squishing...Do vibrating toys calm her at all?
Sounds a nightmare with the two little ones as well. Hope you can get some help soon.

Hi Northernlurker, thank you for reading

We do have a diagnosis, it is "widespread but subtle cortical dysplasia resulting in GDD/MLD and Epilepsy"

DD1 has a Statement of Educational Needs also.

The difficulty is that OT were visiting preschool each half-term, and that was fantastic. Then the OT left to travel the world, and wasn't replaced, but she assured me that DD1 was one of her 'core children' who needed ongoing therapy. The new OT is a) part-time and b) already has her own caseload of children. I phoned and made a fuss in April, and she said that the old OT had said DD1 was on a 'consultation as needed basis' - technically true, but the old OT knew that DD1 needed it every half-term, IYSWIM.

The new OT visited preschool once, and gave them a sensory form to fill in (I had already done one with old OT, and DD1 has definite difference in all but 2 senses). However, the SENCO left before half-term, so they haven't filled it in and there has been no further contact from OT. I have tried to phone a few times, but reception put me through to Paeds OT, and then the phone just rings and rings. I am going to have to get tough, and start making loud noises, I think.

Oh yes, and my DD always get like this (though not as bad TBH) towards the end of the nursery / school year. I think she has had to work so hard to reign it in all the time she just needs a week to go away and be on her own and stim and bounce.

I found the out of sync child book helpful. Have you read it? Briochedoree's list of actvities just reminded me about it.

Oh, x-posts. You are right, of course Mummysaurus and Brioche, she is probably picking up on my lack of energy and ability to keep on top of her. I do try to take her to the park, and she gets outdoor time each morning at preschool. But it is hard with three under 5 to do as much as she would like. She would like to be outside all day. The difficulty is that the others get fed up before she does, so I have to balance it. She has no off button. We have a postage stamp for a garden, unfortunately.

No, I have been meaning to get a copy from the library. I will add that to my to-do list.

Is the OT through the PCT then? If so they will have a PALS service you can contact and then they can do the chasing.

Hi lou, sorry you are having a tough time. She sounds so much like my dd2. Dd2 has improved in some areas but others have got worse, we have the climbing problem, she seems to go a few weeks without climbing and then a few weeks where i cant leave her alone, when the HV visited she managed to climb onto the computer desk behind the monitor and then climbed the tv stand , we had to remove the handles on our side board because she was getting everything out. The more i say 'no' to her the worse she gets. Dd2 is also putting more things in her mouth, for a while this got better but now its worse then ever,

I agree with what the others have said 'you need to get OT involved', most of it could be caused by sensory problems.

I only have ds and 1 toddler rather than two and i struggle - didn't want to make you feel bad!
Today I couldn't face park. The kids played at sand tray with water and earth/sand for ages while i sat there with a cuppa. They got filthy but i got a rest (when not bollocking ds for tipping dirt over toddlers head/flicking dirt at me/and aggravating bees).

Yes, perhaps PALS would be a good route - thank you Northernlurker.

Marne, I always chuckle at descriptions of your DD2; they do sound alike.

mummysaurus, you didn't make me feel bad. I know I am not on top form. I have been having migraines on a strict rota system - day 1 full-on migraine, day 2 residual headache, day 3 just a little fuzzy, day 4 full-on migraine, day 5 residual headache, day 6 just a little fuzzy, day 7...

I went to GP last week, and he gave me the meds I was on before I had the kids. Then I started getting severe (phone NHS direct out of hours) neck and shoulder pain with the migraines. Returned to GP and was told that the Sanomigran is the least effective preventer, so they changed me to propanolol on Tuesday, and upped it to the full dose SR today. Hopefully the migraines will lessen in a few days. I have got Sumatriptan for the migraines, but they make me so woozy.

We're having similiar behaviour from DS1 atm both at home and at preschool (he is 4.9 dx ASD). He's been crying and screaming when I leave, refusing to do his activities, shouting at the staff, complaining of noise and so on. Same at home, defiance, climbing on everything, scribbling over the walls, laughing if told off, not listening.

I ended up staying at preschool for a while on Thursday and I think some of it is that he has outgrown preschool - he still needs 1:1 etc but I think he has grown a bit bored of the same old same old. He had a taster hour session at his new big school on Thursday, his 1:1 from preschool was with him. Apparently he followed all instructions, joined in with all activities, you name it, he did it. I'm under no illusions that going to school will be a magic cure, but I do think this latest set of behaviours may partly be caused by him not getting anything out of preschool anymore IYKWIM.

Hope things calm down for you soon, hats off to you with 2 younger children to care for as well.

Thanks for the encouragement, SmellyBill.

Todays drama....

...DH goes to buy fish and chips.

DDs 1, 2, & 3 go into the porch. I am very tired, and think to myself "no real harm. Doesn't matter if they ruin my washing"

DH returns, asking why DD1 is outside

He had caught her (thankfully, as we live behind a main road) walking up our path. She had realised that if she put a box against the stairgate in the porch, she could climb out of the front door

So now, nowhere is safe. I can't even keep her in the house without being on constant guard

We are going to look at 'stable' doors. See if they are reasonable and would keep her safe.

oh dear Lou, I came on here to post about ds2's behaviour deteriorating and found others, like you, in far worse situations.

In my case I know what the cause is - I have been working too hard recently and dp hasn't kept up with any of the therapies (listening, brushing, exercises) and we have both let ds2 go on the computer far more than is good for him as opposed to doing physical stuff that wears him out. So now I am stuck trying to find a new house to move into in less than a week's time and have a ds2 who has regressed as if the last three months' improvement has been wiped out. They really push the boundaries when you are below par.

So frustrating for you regarding the school OT.

The out-of-sync book is good (and the partner book 'The out-of-sync child has fun') but I find it leaves me with a feeling that there's even more stuff I should be doing, that I'm not, or at least not regularly. Having said that, though, whatever activities you do manage to do will make a difference. One of those chewy things helped with him putting everything in his mouth, and the OT has also recommended some theraputty but I haven't bought it yet. I am lucky in that ds3 is just the right age to join in with all the 'messy play' stuff that ds2 loves and he even wants to be brushed as well sometimes. Doesn't really help with climbing though. And any of the upper body/core strength that would really help ds2 is so difficult for him that I would need to be standing over him to make sure he does it - it's not the kind of thing I can leave him to do on his own.

SmellyBill has a point about outgrowing pre-school as well.

Anyway, thinking of you.

Thanks HighFibreDiet - I am going to google theraputty