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Have realised I have slowly 'lost' my dd since she started school.

(10 Posts)
Hangingbellyofbabylon Mon 06-Dec-10 21:33:06

dd is 4 and has cerebral palsy - started in Foundation class in ms school at the end of September and went full-time after October half-term. She has 1-1 support for 32.5 hours a week to cover lunches and break times too. The school are great and have done absolutely everything they can to make it work including proper rest times and times for extra snacks to keep her energy up. She loves school and enjoys her friends but it is just not working.

She has slowly gone from being pretty well dry day and night to loads of wet pants and beds. Her appetite has gone, she has become moody and her obsessive behaviour has crept back in. It is so painful seeing a little girl who can normally walk unaided indoors, fall over constantly and by the end of the day she is literally unable to do more than crawl a few steps. sad

I've seen the community paediatrician today and she has said to go to half-days immediately which we will do but dd is devastated. She has told me that she is sick of having cerebral palsy, sick of having appointments all the time and being tired. 'I just want to go to school and play with my friends mummy'.

It's not fecking fair angry I've battled for the statement and won, I've managed to get her most of the therapies she needs. But there is one battle I will never ever win, the only battle I want to win and as her mum need to win. I can never ever stop her from being disabled and it is not fecking fair. sad

purplepidjbauble Mon 06-Dec-10 21:37:47

<IV drip full of wine>

Hangingbellyofbabylon Mon 06-Dec-10 21:39:22

thank you - not a wine drinker but will take a large intravenous G + T smile.

Just having one of those 'if only things were different' days.

intothewest Mon 06-Dec-10 21:41:21

really sorry to read your post-It reminds me a little of my ds-he comes home really tired and retreats quite a lot into tv and his insular games and obsessions-he's older than your dd-I think they just use so much of themselves at school there is nothing in reserve- My ds can't communicate as well as your dd,but I'm sure he would feel the same,especially when he's trying to keep up with physically able friends-good luck to you and dd and you're right;it's 'not fecking fair!!'

anonandlikeit Mon 06-Dec-10 21:43:18

DS2 was like this after he started f/time. I woulfd pick him up at 3 & he would be asleep by the time we got home and then would be too tired & grumpy to eat his tea.

We did reduce his hours for a while and then increased them very gradually into yr1.

Even now(he's in yr 3) if he is very tired & we have had a run of very bad nights we have a lazy morning and go into school later. Or he has a mid week rest day. But for teh most part he amnages OK now - It does get better as they get older, honest!

Rather than going back to half days cna you amybe collect her at 2 and maybe take her ina little later ona couple of mornings, maybe she wouldn't notice it quite so much.

Hangingbellyofbabylon Mon 06-Dec-10 21:58:21

I am going to suggest that Anon - I think starting later would help some days although she still has to be up and out to get dd1 to school. we'll get there I'm sure, just having a shit day and have only realised how much it has changed her in only a few weeks.

Agnesdipesto Mon 06-Dec-10 22:35:28

I know its not on the same scale but I just want to reassure you that the first term of reception is awful for all children. Both my non SEN children were wrecks by Xmas. Its the longest term, they are overtired, the whole Xmas thing going on, cold and dark. If you stood around the playground you would hear all the parents asking each other whether its just their child who has turned into a stroppy toddler again and has to be put to bed at 6.30 in full scale meltdowns. I remember it being hell both times, and I know some non SEN children who regressed with being dry as well. I seriously thought of pulling both of them out of fulltime as they were not coping. Of course for your DD its all more tiring etc but the next 2 terms are usually considerably shorter and with more bank holiday long weekends etc to break it up. This is likely to be as bad as it gets.

I know what you mean too about always being disabled. I came across this when researching stuff for DS3 and the last line made my cry as I reckon 16 years on I will still feel the same as this Mum.

Triggles Mon 06-Dec-10 22:44:35

I look forward to weekends and holidays. DS2 is so exhausted afterschool and is just "off" until bedtime. Some days I really resent having to send him to school.

cory Mon 06-Dec-10 23:46:26

It's crap, isn't it? sad

The year before last, dd managed the highest attendance she has ever had since infants. But it came at the cost of everything else: she literally came home from school and went to bed, she stayed in bed all weekend.

Actually, just typing that made me remember how awful it was- so I would very much second anon's suggestion of shorter days. Do whatever helps her to preserve her strength.

Trop Tue 07-Dec-10 00:04:15

Its not fair. Poor little soul. And poor you. sad

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