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dd1 - long sorry

7 replies

Ohgreatnowwhat · 09/10/2010 09:10

Hi I have name changed for this as don't want to give too much away as to myself. I have been using this site for a few years and reading this board but never feeling brave enough to post.

DD1 is 8 and has been struggling at school for a while she is now in year 4. We first noticed her struggle when she moved from reception year into year one. She spent months being really unsettled and not sleeping at night she became so pale and weak we contacted doctors they did usual blood tests e.g. anaemia, diabetes but they were inconclusive. She had two teachers one for her class and another for literacy and numeracy. They both echoed what we were thinking that she was falling further behind with school. We went back to gp and he phoned class teacher who then said dd1 was fine and we were just over protective and she had no behaviour issues etc. dd1 tries very hard to please and on the whole is not naughty but is more annoying with the silly noises she makes etc. Year 2 was same as year one so no problems for her.

Last year she moved to junior school and the pattern repeated not sleeping loosing friends pale skin again a whole round of inconclusive blood tests. We went back to gp again this time with list of our observations he said on their own they were not great worries but as a whole picture were quite alarming. We were referred to cahms who said she did not fit their remit so we should see a paed.

Paed appointment came and she made us feel stupid and over protective school senco was giving pretty much same opinion. We heard nothing for four weeks but I saw senco again and asked he used the memory test he had mentioned to see if it was a memory problem. I received a letter a few days later saying the memory test indicated a very definite difficulty with memory particularly with the central executive and the relief to know somebody finally believed us was immense. Two days later the paed phoned and said she had been relooking at our dd's notes and felt she needed to do some referrals but it was probably aspergers she has.

I have looked a little into aspergers and it does all fit:

15 hour sleeps as a baby
never cried as baby
never asked for food
never took food from the spoon unless you wiped it onto top of her mouth
makes friends but can't maintain relationship
doesn't cope with change
no organization
does not settle to sleep
not able to dress independently etc etc etc

but now I am scared Sad

I have gone from feeling we are stupid and like i was banging my head on a brick wall to scared how fast things are happening

OP posts:
IndigoBell · 09/10/2010 09:21

Ummm.... The list of thing you cited aren't the normal diagnostic criteria for Aspergers. Nor is there a correlation (as far as I know) between memory issues and Aspergers.

It's great that they're going to do further tests on her.

Does sound like she has some kind of special needs - although not necessarily Aspergers.

Aspergers is nothing to worry about. She will be exactly the same gorgeous girl she is now whether or not the paed gives you a diagnosis. It's just that with a dx it will be easier for you and school to help her.

StarlightMcKenzie · 09/10/2010 09:22

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Triggles · 09/10/2010 09:36

I've been going through my own guilt as we brought up DS2's issues with GPs repeatedly over the last 18 months or so, but were constantly being told it's just normal development with some personal quirks. And could just smack myself that I let them talk me around or fob me off for that long. I still feel guilty, but I know that I can't really dwell on it, as I need to focus on the present (and the future) and that's going to take all my energies.

I agree that it's important to remember that regardless of the diagnosis, she will still be your same little girl that she has been. Well done for persisting and following through - it's tough to keep pushing when everyone is telling you there's nothing wrong, but you know there is.

Ohgreatnowwhat · 09/10/2010 11:33

there are various other things going on indigobell that all link to aspergers

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mariagoretti · 09/10/2010 13:58

Diagnosis is scary and despite pushing for one, most folk secretly hope all the problems will magically vanish before anyone else notices them. But unlabelled problems really are far harder to deal with than well signposted ones. The paed's job is to decide if dd has asd, ADHD, asperger's, dyspraxia, dyslexia, sensory processing issues, processing problems or whatever else best matches her symptoms.

You'll have a shock and a grief reaction but at least you'll have more idea how to help her. And the school will have less grounds to fob you off. And mumsnet SN board is great!

HelensMelons · 09/10/2010 14:06

Echo what the others have said, good for you for sticking to your instincts. Dx is scary, this is a good board with plenty of support and help. Make sure you look after yourself and seek support from friends and family x

Ohgreatnowwhat · 09/10/2010 16:18

thanks mariagoretti you have summed it up better than I did

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