apparantly at Lucys sleep clinic, her paediatrician said she had never come across a child so stubborn with downs syndrome, and that she was incredibly rigid in her behaviour.... but just to carry on seeing the physcologist.
Her melotonin has been doubled.
Also, i know I've asked before, but is the lining up of the toys normal, because its driving me potty. I was in the kitchen 2 minutes and came back to a line of fairies across the lounge. Her laminated signs have to lined up as do her dolls, i will get a photo of it next time. she also piles her books they have to be stacked cannot sit on a bookcase, and im not allowed to move them. ;D
At least the screaming appears to have died down a little. x
I'm glad to hear the screaming has died down. Sorry don't really have any experience about the sleep thing , what does the psychologist say about her rigid behaviuor ? Does the melotonin help ? is it one of those things that builds up in their system or is it like if one night she didn't have it she'd be wide awake ? Sorry just being nosey. I'm afraid Rachel is complete opposite she just drops things as she goes , pulls all books out , pushes things into heaps but never neat lines , so I'm not much help , sorry
Glad the screaming has calmed down a bit, has Lucy seen the psychologist already? i remember you saying you were waiting for an appt, if the appt has come through i hope the psychologist is some help.
with the lining up of toys etc, i've heard that is a developmental stage which kids go through, something to do with maths. it could be that or maybe it just helps her feel secure having her toys and books a certain way. Sam used to line up all his teddy bears when he was alot younger, i haven't noticed Harry doing that though but then he is more happier throwing things lol!
i hope the melatonin is starting to help and you're getting some sleep? xxxx
Hi Karen, i saw the lining u pics on FB , amazing so precise , great fine motor co-ordination ! But like nothing I've ever seen Rachel do . it is always amazing to see how vast the spectrum is for autism, sounds like Lucy has an interesting place on it with her good eye contact & imaginative play . Hope the psychologist continues to be helpful. xSusan
Sorry susan, I completley missed your previous message..
the phsycologist keeps saying she is not in a rush to slap another lable on her, but with her sensory /rigid behaviour/organising/dislike of change etc its looking more and more likely that there is something else.
The melatonin gets her off to sleep, makes her really sleepy and dopey. If i missed a night it wouldn't be a major problem except that she finds it difficult to relax to go to sleep,
The rigid behaviour we are working on, with directional pictures so that she knows what is happening in her day, eg a trip to the shop i would show her a picture of her pushchair and the picture of the shop, and when we are done i have a picture of home. one example, I cannot get her to drink out of anything except a baby bottle, and if anyone has any advice please share, my cupboards are full of different beakers but she refuses to drink from them. Is it helping, not really, Im spending more and more time indoors as I just cannot handle her behaviour when we are out eg screaming. When we are indoors she is ok has her moments but I can handle her better indoors.
On a positive note though, she is incredibly clever, knows most of her colours, can link 2-3 signs together, calls me mum now, which I love. Its just the social stuff she struggles with and changes to her routine.
WIll let you know when/if they make any firm diagnosis. xx
Karen This is the first time i have been on UpForDowns in ages and ages! Had forgotten how good, supportive and informative it is!
Please let me know how Lucy gets on. I saw the photos on FB of her liining everything up - what amazing fine motor skills and she is so smart to colour coordinate everything too! You must be very stressed and worried about her behaviour when you go out - i spend quite a lot of time at home but Rosie handles being out better than Lucy i think.