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Cerebral Palsy bad behaviour

(5 Posts)
Albaba Tue 05-Apr-16 13:09:46

Ok I am just looking for some advice really. My dd is 4 and has cp. Ok this in itself is enough to deal with but now I think well I don't think really my dh has been saying it for ages that we should get her assessed but I have been burying my head in the sand about it not wanting her to be labelled with another sticker.

She goes to mainstream nursery. She started there when she was 1 before we knew that there was anything wrong with her along with her twin sister who is nt. She has a one to one assistant for the preschool funded hours. A few weeks ago the nursery said to me that they thought her behaviour had changed in the last few weeks and that she was regressing on her skills. For example she can be really frustrating she knows to go to the toilet or potty but there are days when she will be completely dry all day and then other days were they have asked her if she wants to go to the toilet and set her on, she does nothing then pees herself minutes later and I am getting maybe several wet accidents a day. They said too her behaviour has changed. She doesn't mix or interact with other children at all and never has despite knowing some of them for 3 years. Plays but herself or sometimes her sister. They say too that she doesn't concentrate or listen and last week had to be put on time out for bad behaviour. Also they say she has been saying silly random things and not making sense. They gave us a long list of concerns. My dh took her to the Dr us thinking autism, learning difficulties but Dr didn't seem particularly concerned as it wasn't happening all the time. They wanted to rule out anything physical first. Was tested for a urine infection which cam back normal.

Anyway her twin is bright and engaging takes everything in, remembers and asks questions. Sometimes my other dd just doesn't seem to understand and seems a bit lost. I find this in nursery too she can cope with her 1 to 1 but without her she just gets lost in the sea of other children. her 1 to 1 says she relies on her very much to tell her what to do and do next instead of using her own intuition.

Anyway we are just back from holiday. Holiday itself was good but getting there and back was a bit of a nightmare. We went on a plane and took entertainment for them both. My dd started whinging didn't want to sit in her seat and was just generally badly behaved. On the way back she had a complete meltdown and screamed the place down. Nothing would calm her down, reasoning her with her, buying her crisps and drinks, threats nothing. We were the two red faced parents on the plane with the out of control child. I am sure the rest of the plane hated us.

It seems to be when you take her out of her comfort zone and in to unfamiliar surroundings she freaks out. Also when we were away on holiday in a hotel in a busy restaurant she seemed to glaze over and go in to a trance like she had completely zoned out. We ended up going to quieter areas.

I am just worried because the girls are due for primary school in September my dd with a classroom assistant. We want them to be together but worry if her bad behaviour continues she will not be accepted in to mainstream and they will have to be separated. I am thinking sensory problems, maybe autistic spectrum. My dh is taking my dd to the Dr this week and asking for her to be referred on to a specialist. I know from her twin what a lovely nt 4 year old is and should be and her behaviour is more than naughtiness or poor parenting.

Has anyone experienced similar or have any useful advice I would be really grateful. Albaba X

Summerdaydreams1 Wed 06-Apr-16 08:13:49

Hi albaba waves from the regular cp thread.

Has the nursery made contact with the early years team on behalf of dd regarding their concerns. In our area there is a contact point for early years Sen, and then via that person, educational psychologists, OT etc can be assigned to assist the child and family in the nursery setting.
Alternatively, I think you are doing the right thing in going to your gp. Ask for a referral to the community paediatrician and don't let them fob you off. flowers

Ineedmorepatience Wed 06-Apr-16 11:32:43

Ok I think that you need to know what her developmental stage is in order to help you stop comparing her to an NT child!

I would either request a referral to a developmental paediatrician or pay for a full cognitive assessment!

Until you know what she can understand I dont think it is fair to think of her behaviour in terms of a 4 yr old!

Good luck flowers

Ineedmorepatience Wed 06-Apr-16 11:34:42

I agree about the nursery too but am guessing that if 1:1 is being funded then that route is already being followed!

BishopBrennansArse Wed 06-Apr-16 11:56:37

Not wanting to label her further, saying this with all kindness - it doesn't make her 'become' that label, she will still be herself, but it's a descriptor for any professionals working with her.

It's really better to go for assessment than not.

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