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DD1 can't recognise herself!

6 replies

kreamkrackers · 29/02/2008 17:27

Haven't had the internet for a while due to house move and some annoying tag being left on the line preventing me going online!

Anyways i'm back online now and was wondering if anyone could possibly help me out.

DD1 has DiGeorge syndrome which affects her medically and has also caused her to have learning disabilities. She now attends full time SN school. She is going to be 4 in May.

I have suspected for a while she could be autistic although it's hard to say with her having learning diffuculties anyways through the DiGeorge syndrome, her language is starting to come on but it's at about an 18months to 2year olds development stage and there's a few things that strike me as being a bit different which are:

she can't pick a toy up and play with it she has to be shown how to play with it

she has a copy cat personality everything she does is mimiked she lacks an imagination

she has an absolute obsession and it really is an obsession with teletubbies. she has a laa laa doll that plays the same tune over and over again and has a revolving picture on it's tummy which she can play with non stop for until i finally take it off her. when she plays with this toy she has her hands in the air moving her fingers, this happens everytime

she does the hand in the air thing with moving her fingers and goes into her own world at other points about 30 times a day, we thought it could be seizures at one point and we're still waiting for results from an eeg but she snaps out of it when called for so i'm doubtful to it being seizures

she is very repetitive

she hates and goes into screaming panics from certain textures such as fluff, wet hair touching her arms and bubbles in the bath

she plays with herself and we have tried to get this addressed as to why she does this as she often does it in bed and when she's in the buggy but nobody can come up with the reason for this

she often looks distant and although she does smile and shows some expressions she does lack a lot of expressions

sometimes when i talk to her she hasn't got a clue what i'm on about and comes out with something completely different although she does lack language skills i still feel she hasn't got a clue what i'm telling her

if she pushes her younger sister over she doesn't understand whats she's done wrong and will often just look blankly at me when i tell her off

she hates large crowds of kids, she will scream and go into panics in situations with a lot of kids and noise. last time we went to a place where there were a lot of kids and she did this she picked up a girls dora bag and focused in on that and did the hands up in the air thing again and switched into her own world

she hates things being out of order for example she usually has breakfast then gets dressed as she's messy but if i ever switch it around she would then have to skip her breakfast and another example is she will spend hours just sat with a box of toys emptying it then putting it all away again

we are going to have a team around the child meeting soon and i will raise all my concerns fully this time.

the thing that's now puzzling me is that she can recognise her sister, her dad and me in photographs which is lovely to hear her say but everytime she sees herself in a photograph or mirror she calls herself dolly. is she beginning to get an imagination or could this be something else i should worry about? i do tell her it's her but she won't ever say her name it's always dolly and she has learnt to say her name.

i do feel like i worry about her a lot, i'm not sure whether i worry too much over nothing or what. but like now she's continuely opening and closing the door as i'm typing this which i'm going to have to stop in a minute as it's driving me mad i don't know whether she's doing it to be naughty or whether she just can't help but do it.

TIA

OP posts:
sphil · 29/02/2008 20:07

DS2 (5, ASD) is the same. We have been advised to do as much mirror work with him as possible for the reason that if he doesn't see himself much, he won't know what he looks like! He always calls himself mummy, nanny or DS1's name.

staryeyed · 29/02/2008 20:39

I dont think My Ds recognises himself either. He refuses to look at himself in the mirror so Ive got no idea how he will ever know.

kreamkrackers · 01/03/2008 13:48

I'm really concerned now as to why nobody is suggesting she could be autistic. Everything I've got for her has been a battle and through doing my own research. It doesn't help that the school don't comment much about her in the home school book link just what she's managed to eat/drink, what's gone in her gastrostomy and if she's opened her bowels and even that was all because I pushed for it to be done.

The educational psychologist gets on my nerves. She's meant to be looking into dd1's behaviour as she plays with herself but it's been going on for well over a year now and we've had no help except people tell us to ignore it but it's bloody hard when it's in public.

We're also meant to see an OT but again she hardly sees her and we're having problems with her sitting, she has poor balance she can't sit in a high chair with the size she is now, she won't sit on a booster seat, she's too small sitting just on the chair and cushions and such don't help as she looses balance and is constantly having to be put back on the seat properly. She has a special chair at school but she's not allowed one for the house. It's bloody stupid.

She also has problems feeding herself and chewing. We're meant to see a SALT worker which she got assigned for sept 2005 and apparently we're nearly at the top of the waiting list now.

She has special boots to wear to try to stop her walking on the insides of her feet but her physio said around the house she should be okay to not wear them as she stands on DD2's feet and hands a lot. She started walking in October but she is now developing blisters on the insides of her feet. Again I'm waiting for advice from the usless physio as for what to do. I know it's to do with weak ankles surely there's something that can be done just to support her ankles.

I'm feeling tired and fed up of looking into and chasing everything up. I don't see why nothing has been in place for her since we found out as a baby she had DiGeorge syndrome when we almost lost her. It's hard enough dealing with the medical side of things the educational side should all be put in place and sorted so she gets everything she needs but she doesn't.

sorry for big rant i'm just fed up.

OP posts:
TheodoresMummy · 01/03/2008 20:39

kreamkrackers - this is prob of no help whatsoever, but we are going to get a chair for DS (4) from IKEA because he won't use a booster, but can't see his dinner if on a normal chair.

It's called INGOLF and comes in two sizes.

It's a bar stool I think, but might do your DD ?

TotalChaos · 01/03/2008 20:44

regarding the weak ankles - has nobody suggested splints? my friend's DD has had them for talipes plus other orthopaedic problem, they seem helpful and unobtrusive.

kreamkrackers · 01/03/2008 23:18

i'll look into that chair. thanks.

nobody has suggested splints. her physio just told me if i put her in shoes to make sure i always use her special boots for the ankle support but around the house she will be alright to walk without support but the blisters on the insides of her feet are really concerning me and i believe the problems is getting worse. it looks so painful to see her walk like that but she doesn't appear to be in pain and i thought maybe i've got it wrong with her physio thinking she's alright.

mind you i always try to believe in the professionals after all it's what they're trained in but most of the time my own judgment seems to be far better than the bollocks they come out with.

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