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After *everything* we finally and I mean finally have a dx. Feel sad but relieved and could do with some help input...

28 replies

MrsGerrard · 11/07/2006 18:13

Well things have been officially diagnosed today.

After "everything" we have been through the cp rang me tonight and has officially diagnosed dd with Aspergers. She is 100% that this is the case (good enough for me!)

The Aspergers is a primary need, followed by Adhd, language disorder and then developmental co-ordination difficulties.

I have been really upset but am so, so relieved. No more is she or isn't she.

Apparently girls are much harder to diagnose and dd with all her complexities has been even harder.

She said that after gathering all her reports together and seeing all the info it was very plain to see.

At least now we can move on and at the end of the day if the senior high school isn't right because of this dx then so be it.

Anyone else with a child with AS or asd who has any advice I would really appreciate it.

Thanks and thanks everyone for all your support, the rollercoaster of dx is finally over!
Blossomhill xxxxxx

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saggarmakersbottomknocker · 11/07/2006 18:16

No advice BH - just glad for you that this part is over and you can get on with getting her as much help as possible. x

nutcracker · 11/07/2006 18:16

Have a hug BH ((((((((((((()))))))))))), I knwo how hard it has been for you to wait for this information and am sure it's been ever harder having what you thought confirmed.

Your dd is so lucky to have a mum prepared to fight for her like you have

You know where I am if you want me, just nudge.

FioFio · 11/07/2006 18:57

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coppertop · 11/07/2006 19:07

You must feel so relieved, MrsG. I'm glad you've finally been given some answers. xxx

MumRum · 11/07/2006 19:57

I'm so glad you've got your answers.. the whole dx process is so mentaly draining isn't it...

we had a letter from the OT saying that DD no longer presents as a child with dyspraxia...
The very next day we had a letter from CAMHS saying that she has lots of ASD simularaties but have put it down as part of her dyspraxia... which according to the OT she hasn't got.... (sigh)
They told as at the meeting that they needed to see her at school to see which is more dominant... the AS or Dyspraxia

Piffle · 11/07/2006 20:20

It is such a relief to get a proper dx, then you can start targetting and being specific about the help your child needs
I hope you get everything sorted for your daughter.

SlightlyFamiliarPeachyClair · 11/07/2006 20:42

Mrs gerrard

must be a week for it, as we got ours last monday after 3 years too.

the only things I would say are prepare yourself for a downer too- I was elated at first but have been really down at moments this week too; also call the NAS and ask them to put yu in contact with your locals section, we have a lady coming to see us to do a home visit and we are going on a special course for newly DX'd famillies soon- HELP!- all on their website.

MrsGerrard · 11/07/2006 21:44

I am relieved but have had a good cry tonight too.

Went to my Aspergers/Adhd support group and everyone was so supportive which was great. Cried loads but also felt empowered.

Thanks so much for your support and kind words. Good idea about the NAS local groups peachy, they did mention it when I rang yesterday. Right now I feel split relieved but also mourning in a way (if that makes sense). It shouldn't take 5 years to get to this

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coppertop · 12/07/2006 10:42

How are you today, MrsG?

MrsGerrard · 12/07/2006 10:46

Hi Coppertop

Thanks so much for asking and thinking of me

Well I feel really weird today. Was awake all night and today feel a bit empty. I can't believe after 5 years we finally have a dx.

Dh is taking it really bad and feels like I do. He put it that it feels like a kick in the stomach and I think it describes exactly how we both feel.

Just wish I knew what to do and where to go for help etc.

xxx

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coppertop · 12/07/2006 10:53

It sounds awful.

Have you been offered any practical help or just pretty much been handed the paper and left to get on with it?

I bet between us all we might be able to find some ideas for the therapy/behaviours side of things. And of course you have us all here for support too. xxx

MrsGerrard · 12/07/2006 10:55

Aww thanks Coppertop. It feels pretty awful but obv. with that comes a huge sense of relief. I was right all along and mum always knows best!

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coppertop · 12/07/2006 11:06

I can remember you saying you suspected AS back when you first joined MN. Why don't these people listen?

MrsGerrard · 12/07/2006 11:16

I know ct, that's been the hardest thing/

All of the family are so upset. My mum and mil have been in tears on the phone today.

In a way we all feel differently about dd and I don't know why?

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SlightlyFamiliarPeachyClair · 12/07/2006 11:56

We have found that we are treatingS am differently too, sio it isn't just you sweetheart.

I don't know why they can't listen. We knew there was AS / HFA with Sam, but no-one believed us to the extent that we stopped believing ourselves, then just as we reconciled ourselves to being basically abd parents we were right after all.

emmalou78 · 12/07/2006 12:48

The first few weeks after getting a dx are horrible, becuase even when you know in your heart exactly whats wrong, till its confirmed you can still cling to that thread of hope... Not that our children are beyond hope, but its different hopes and aspirations, and your not alone in feeling your treating your child differently it takes time...

I hope your days feel brighter very soon

MrsGerrard · 12/07/2006 20:32

Peachy it hurts like hell doesn't it?

Emmalou - I think after this initial period things will get better

Unfortunately poor dd is poorly with a high temperature.

It's so weird, don't get me wrong family have always been supportive but things have been so much harder than they are now (especially when dd was younger). Since having an official dx my mil went to speak to her boss and has taken a few weeks off and my mum has asked her own boss if she can drop to 4 days to help me out.

Don't get me wrong I am so grateful but just think how on earth has a dx changed anything. Dd is still the same but it seems people are now sitting up and listening and realising just how tough things have been!

I had the proper dx today and it was:-

symptoms as part of a neurodevelomental cluster of problems: A high functioning asd (Aspergers) ADHD, speech and language disorder and some minor co-ordination problems.

The report is very thorough which is good but it's so hard to read it all

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Christie · 12/07/2006 21:44

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MrsGerrard · 12/07/2006 21:53

Thanks Christie Think the whole of the sn board have been on the "journey of dx" with me!

Sorry to hear you are having your own problems with dd2. I have never heard of HSC so will need to have a look at your post, is it on sn?

Hope you manage to get the help and support from the school that you need for dd2. xxx

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Christie · 12/07/2006 21:59

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puff · 12/07/2006 22:04

You are a brilliant Mum bh

SlightlyFamiliarPeachyClair · 12/07/2006 22:05

read that HSC book recently after convincing myself Sam was anything but ASD. It just convinced me more.

BH I am glad you have familya round you. I got quite high level suympathy off Mum- 'quite ahrd isn't it?' for her, that's a lot. She is taking the older ones for a week each in the hols to help though. FIl telephoned and he asks the right questions and says he loves Sam, but hasn't seen him since Christmas (90 minute drive). Mil dind't even respond to our e-mail (BIL replied with 'will tell mum'). . last time she saw him tho she referred to him as a freak so i doubt her life expectancy if we saw her anyway!

Taking my brood away for a surprise weekend Friday, only a week until our main hol but we needed something to grab hold of now. And at least Sam gets his statement now. PLus the Paed has written to DLa conforming Sam is entitled to DLA; I think it should be middle but her letter says lower, however lower will cover the violin lessons he's been begging for so that' enough I guess. At least he gets something from that.

MrsGerrard · 14/07/2006 17:07

Thanks Christie

Bless you Puff, I do try xxx

Peachy - grrrr at your mil have a great weekend

Well I have gone from being relieved, sad and then just disbelief that we finally, once and for all have a dx. Sometimes I will just catch myself crying and then others I feel like a weight has been completely lifted. Emotions all over the place.

Have been doing lots of research and luckily have a few friends whose children have AS so it's been nice talking to them.

Funny how now school are bringing the autism outreach team as they knew all along it was what she had.

So in lots of ways it isn't just a label. It gets people thinking (especially family) and hopefully helps people understand dd more!

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Socci · 14/07/2006 17:09

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dinosaur · 14/07/2006 17:12

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