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Behaviour and Cerebral Palsy - sorry, rambling a bit.

(19 Posts)
Hangingbellyofbabylon Mon 08-Sep-08 21:46:30

dd is 2.5 and has spastic diplegia. She can crawl and has starting cruising. she does not appear to have learning difficulties and has really good speech for her age.

We have always felt her emotional maturity is not where it should be. She has had kind of 'tantrums' for want of a better word since she was tiny. She will go on and on crying, we tried crying it out at bedtime once or twice and she cried on and on for over an hour. She would never have given in, she has capacity to keep going for hours and can't stop herself. She also produces loads of clear mucus and drools it every where until she is sick. She can cry on car journies for ages and there is nothing we can really do to stop it. It's like when she starts she just cannot bring herself back. The tears start over random stuff like not wanting to take off a dirty t-shirt or having the 'wrong' socks or wrong dinner. We live with this all of the time and it is hard but we have never known any difference.

dd started at playgroup last week and did an hours settling in this afternoon. After 50 mins I had a frantic phone call and they basically said that dd had lost it and was doing the full drooling routine. They were really shocked and said they had never seen anything like it hmm. They actually dealt with her really well and managed to finally distract her with singing songs so I have no actual worries about them looking after her. But was shocked that they felt her behaviour was so unusual and they told me it must be part of her CP.

It makes me realise that life with dd is bloody hard, not just with her physical difficulties. I'm hoping that they will see how hard things are and maybe pull their finger out and get me some help - I'm trying to start the statementing process but they keep fobbing me off as dd is 'not known to the ed psych' for some reason. So do you think it is worth me asking the nursery if they think it worth asking for ed psych to observe? Does anyone else have experience with this kind of behaviour in a child with CP?

2shoes Mon 08-Sep-08 21:59:14

OH YES
i sat nodding as I read your post.
dd is 13 and has cp.
to me it is like she lacks the off switch that nt kids have. you know when they finally realise they will not get their way.
it can start over me saying you have to wear a cardigan.!!
she has got better as she has got older, but it still happens. I think you just learn to "manage" it. at the end of the day a lot of the issues are not worth it.
we get it sometimes at bedtime. I say sleep time and she will cry for what seems like hours. until finally she falls asleep.
a lot of it is frustration. as she can't just say "mum I am hot I don't need a cardigan today"
my freind who has a dd with cp has the same problem. and her dd has tantrums as well.
so in a way
yes I do think it is part of the cp.
As I say it will get better as your dc gets older.
the dribbling(hate the word drool) is probally connected. as because of the cp most dc's have problems controlling it.
does your dd drible at other times?

Hangingbellyofbabylon Mon 08-Sep-08 22:12:29

Thanks 2shoes - the 'off switch' description makes so much sense. I know we're blessed that my dd can tell me what's pissing her off but it still doesn't make me able to make it better for her! She really is so unique and I think it's really typical that the docs focus on physical problems and completly let you free-fall on behaviour. Tbh I haven't seem much drooling apart from when she's upset and goes into drool over-drive, it like pints of the stuff and her whole top will get soaked. Good to know that things might get a bit easier but I have a feeling that a lot of this is going to be part of dd forever.

2shoes Mon 08-Sep-08 22:14:49

dd dribbled loads when she was diddy. she has now learn't to contol it. but if she is upset or ill she dribbles more.

please don't forget one thing.
the terrible 2's

Hangingbellyofbabylon Mon 08-Sep-08 22:48:53

I know, I guess dd1 didn't really do the terrible 2's at all so it was always going to be a shock with dd2 wink

2shoes Mon 08-Sep-08 23:05:38

I am off to bed now. but if you ever need someone to talk to. just call for me

Nat1H Tue 09-Sep-08 11:36:35

Can she be distracted when she gets into this state? My DS does the same, but we can distract him - usually with songs or play.
It's a nightmare in the car though because you can't do it there! grin
You can apply for a statement yourself. Could you ring the Ed Psych as well and ask them to take a look? I can't remember how we got referred to EP, but I have a friend who asked for an assessment for her child and got one!
Good luck - maybe buy some earplugs wink

sarah293 Tue 09-Sep-08 16:08:01

Message withdrawn

anonandlikeit Tue 09-Sep-08 16:32:31

Hi my ds2 is 5 & has spastic diplegia.

He is walking now but sounds very similar both physically & emotionally to your dd.
Sometimes i think the more subtle results of any brain damage can be overlooked, it took a very good community paed to insist that ds2 was observed by the clinical psych team for his anxieties & oddities to be regarded as anything more than toddler behaviour.
Because he has always been very good at following instructions they assumed that he didn't have learning difficulties but unfortunately he does.
His development has always been a bit of a jumbled up mix.
He now has a dx of Mild CP, ASD & learning difficulties. I am not suggesting for one minute that the same would be for your dd BUT sometimes you do have to insist that the profs put the text books to one side & look at your child.
Perhaps request a multi disciplinary assessment at the CDC, that would involve a psych as well as OT who could help with any sensory things like the wrong t shirt etc.

Or of course she just may be a very strong willed little girl

Happy to chat anytime

Hangingbellyofbabylon Tue 09-Sep-08 16:54:07

thanks Riven and Anon - I think requesting another assessment would be useful as she really was little when they first looked at her. We had 40 mins of screaming this morning as she has new pyjamas on last night and just could not 'get' why she couldn't wear them all day today. I think NT kids may have the same crazy ideas about wearing PJ's all day but I think it's her reaction and the lack of 'off switch' (as 2shoes so aptly put it) that makes her different from other children.

Good luck with school tomorrow Riven.

anonandlikeit Tue 09-Sep-08 17:05:56

Oh yes my ds sees clothes as purely functional, so he will wear them if he is cold if he is hot, why the hell should he & pj's do the job just the same as his school uniform. He also does not like change!

ds2 can & does cry for hours also, tbh i just switch off from it now. In the end ds2 can't remember why he is crying but it goes on & on & on.
Although the CP effects his legs mainly but once he starts crying he does get very dribbly as the tone in his mouth etc is not good.

2shoes Tue 09-Sep-08 17:07:41

have to say I am feeling rather relieved to read that you have all had the same thing
I always thought it was just dd and her mate.

2shoes Tue 09-Sep-08 17:10:31

x posted and missed your post anon

"ds2 can & does cry for hours also, tbh i just switch off from it now. In the end ds2 can't remember why he is crying but it goes on & on & on."

dd does that as well and I know she has forgotton why she is crying.

anonandlikeit Tue 09-Sep-08 18:31:37

lol 2Shoes, my neighbours must think i am so cruel, as he has taken to sitting under the trampoline & sobbing. I don' hear him after a while but i'm sure they do.
DH cannot switch off to him either, he finds it so annoying.

Hangingbellyofbabylon Tue 09-Sep-08 20:11:21

Blimey I have just come down stairs after over an hour of crying because at the moment dd is obsessing over holding my hand whilst falling asleep, except it's not just hand holding, it's kind of scrabbling and it drives me mad. I finally lost patience and DH went up there, it sounds as if the crying is starting to slow down. Do you know what set her off tonight? I dared to change her socks, the strange purple witch socks that she wore to bed last night and all day today so were really dirty from crawling all over the place. It's starting to make me realise that this fixation with certain clothes is a bit unusual. It's such a relief to hear that dd is not unusual amongst children with CP; I really do think that it's criminal that they send you away with an idea that your child has a physical disibility and no word is mentioned of how to handle CP behaviour. dd has her 'meeting around the child' following the CAF next week so I'm going to make sure when I have all the people in the room at once that they actually listen to me.

PheasantPlucker Tue 09-Sep-08 20:37:07

From chats I have had at hospital lately (mainly concerning my dd1) I don't think this is uncommon.

I hope your dd gets on well at the new playgroup. x

sarah293 Wed 10-Sep-08 07:35:25

Message withdrawn

Romy7 Wed 10-Sep-08 11:04:37

we always worked on the theory that developmental delay meant we were going to experience toddler tantrums for a later and extended period. with more disabled children there can be later issues with frustration too, which can result in similar tantrummy behaviour. but i'd say at 2.5 she's being a developmentally delayed 2yo and quite quite normal. dd2 has had the most monster loss of control sessions, but they are getting less frequent as she gets older and less sensitive to light/ noise/ changing socks/ touch whatever. she used to freak out totally if nursery put a story tape on for example (didn't know where the noise was coming from and went into meltdown) nursery will get used to it and learn which triggers to avoid. changes to routine usually being the most significant! even keel with dd2 works best every time wink
hanging - don't forget there are perfectly NT toddlers who refuse point blank to take off their pjs or insist on wearing their spiderman outfit all day and night, and will throw the most almighty hour long tantrum if they are forced otherwise! grin
she's just 2 and quite wee. if i'm not sure what is 'normal' behaviour or not i dig out 'toddler taming' by chris green. it usually reassures me that the dangdest behaviour is well within the normal parrameters after all!

2shoes Wed 10-Sep-08 11:45:24

dd will only wear vest tops at the moment(even though it is not summer) and we had tears cos mum dared to put a cardigan on her.

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