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posted by [personal profile] leoniedelt at 11:51am on 18/09/2007 under , ,
So. Its official. Its hfa and we've been right all along.

The relief is entirely palpable.
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Mood:: Relieved
There are 31 comments on this entry. (Reply.)
 
posted by [identity profile] nine-girl.livejournal.com at 11:08am on 18/09/2007
I don't even know what to say, love ... I'm so glad there's someone official on your side, but I'm desperately sorry for the reality ...

{{{{{{{{{{{{{{{{{{Hugs}}}}}}}}}}}}}}}}}}}}}}

♥ ♥ ♥
 
posted by [identity profile] leoniedelt.livejournal.com at 11:28am on 18/09/2007
Oh, thank you sweetheart.

We've known it for the last 2 years, it was just getting someone to listen and believe us.

There are a number of medical professionals that owe us an apology for dismissing our concerns and telling us we were just neurotic overprotective first-time parents. We probably are those things, but we were right, too.

*hugs* and love. And thanks for your continued support. Don't know where i'd be without you.
 
posted by [identity profile] nine-girl.livejournal.com at 01:32pm on 18/09/2007
I'm afraid I haven't been much support lately, but it's not because I don't care. Promise.
 
posted by [identity profile] leoniedelt.livejournal.com at 01:33pm on 18/09/2007
Just knowing you're out there and that I can get you if i need you is enough for me :)

*hugs tight*
 
posted by [identity profile] nine-girl.livejournal.com at 01:36pm on 18/09/2007
That you can, love, that you can. :)

*hugs back as tightly*
 
posted by [identity profile] aquirkofmatter.livejournal.com at 02:51pm on 18/09/2007
**hugs**

The number of supposed professionals who have been telling you you're wrong is slightly worrying, but at least you can get answers and help now. And it makes Pumpkin even more special :) xx
 
posted by [identity profile] leoniedelt.livejournal.com at 03:41pm on 18/09/2007
Yeah, not too impressed with the local HV and the GPs and the nursery and the playgroup and everyone we've seen and been around telling me i'm neurotic and plain wrong, but hey. They get to eat crow now!

More importantly, my daughter is diagnosed so she can get the appropriate help, and grow up [as close as she can get to] normal like the rest of us. Thank goodness.
 
posted by [identity profile] leoniedelt.livejournal.com at 03:42pm on 18/09/2007
Hit post too soon. doh.

*hugs* to you too, sweetheart. Thanks so much for your support, concern and kindness.

 
posted by [identity profile] schmusimausi73.livejournal.com at 03:41pm on 18/09/2007
(((HUGS)))
ext_10830: Jewellrey (Default)
posted by [identity profile] glitterfairy25.livejournal.com at 04:28pm on 18/09/2007
I can sense that relief! I'm so happy that something's finally happened - something official to agree with you, and I really hope that it'll help your little girl as she needs it.

*hugs*

*hugs again*

:)
 
posted by [identity profile] leoniedelt.livejournal.com at 04:30pm on 18/09/2007
Thanks, Happy.

We're get her sorted!

*hugs* to you too :D
 
posted by [identity profile] happydalek.livejournal.com at 11:42pm on 18/09/2007
{{{{hugs you too}}}}

Yay for answers! Especially ones that actually confirm what you've seen and experienced! Hfa sounds like an interesting road to walk down. At least now you'll have some professional support.
 
posted by [identity profile] leoniedelt.livejournal.com at 06:10am on 19/09/2007
Well for the most part it means she doesnt get jokes, tries to do what you say literally, and what we find funny, she doesnt. Which we knew already!

I bent down to give her a cuddle at her request the other day and said, jokingly, 'it'll cost ya!' she started rooting round in her pockets for money. Poor thing!

But it does run deeper than that and as time goes on, we'll see more of the social and imaginative sides of it rearing their heads.

One thing is for sure - in talking to both our sets of parents, it comes from both of us. Bits of me added to bits of better half, have created pumpkin, literally, and the oddities of him added to the oddities of me = HFA. Interesting! He's probably HFA himself, as he takes me so literally sometimes, and he's going to pursue a diagnosis. I'd probably have been PDDNOS as a kid according to my mom's stories, with distinct hyperlexia.

But thanks, yes, it is an interesting study into humankind, into social rules and things, and it will be very interesting to see what they can do to help her. There's bucketloads of help out there, thank god, and as she's under 16, its free to us.

Thanks, happy. *hugs*
 
posted by [identity profile] happydalek.livejournal.com at 11:52am on 19/09/2007
I bent down to give her a cuddle at her request the other day and said, jokingly, 'it'll cost ya!' she started rooting round in her pockets for money. Poor thing!

Awww! At least she doesn't seem to have the touch issues that some autism spectrum kids have. I can't imagine what it'd be like to have a kid that I could never hug or hold without making them uncomfortable. Human nature is a confusing beast, indeed. Does she have any imaginative play skills right now? And, incidentally, do the medical people over there ever use the term "Asperger's Syndrome" for hfa?
 
posted by [identity profile] leoniedelt.livejournal.com at 12:48pm on 19/09/2007
She's never been very cuddly, but once in a while she likes a 2 second hug job, if she's feeling low or nervous. I'm grateful for whatever cuddles i get!

Asperger's is like HFA, but without the speech issues. They do differentiate, but pumpkin met the HFA criteria better than the Asperger's because of her speech issues. She's a very pedantic speaker who takes you very literally. Aspies are a little more socially crippled, actually.
 
posted by [identity profile] happydalek.livejournal.com at 01:58pm on 19/09/2007
Ah. Thanks for clearing that up. I'd always assumed Asperger's was fairly synonymous for hfa. Forgive my curiosity. Child development has always interested me, especially in those of us who are "differently brained." Good luck with Pumpkin and keep us all posted!
 
posted by [identity profile] leoniedelt.livejournal.com at 03:37pm on 19/09/2007
Thanks! and I will :D
 
posted by [identity profile] gorkonslady.livejournal.com at 12:28pm on 19/09/2007
Finally you´ll get the right help for her. I´m happy for you, too.

*****hugs*******
 
posted by [identity profile] leoniedelt.livejournal.com at 12:48pm on 19/09/2007
Thanks, babe :D
 
posted by [identity profile] mooncove.livejournal.com at 05:24am on 20/09/2007
I'm so glad you've finally been vindicated! I can understand how you feel, having been through being told serious illnesses are all in my head ... as well as having grown up with ADHD. I know what you mean about already knowing something is wrong, so getting a medical professional to acknowledge it and give it a name is not a disappointment; it's a huge relief. If I'd been diagnosed as a child (heck, if ADHD had actually had a name and all the educational support they have for it now), I might have grown up a much more confident, well-adjusted, and happy person, instead of being labelled a behavior problem by all my teachers and made fun of by all the other kids for being "weird" and "hyper" or a "spazz." I'm really glad that Pumpkin is going to get the support she needs--and sorry you had to go through so much agony to finally be taken seriously--but it shows what a great mom you are that you didn't give up! *hugs*
 
posted by [identity profile] leoniedelt.livejournal.com at 05:57am on 20/09/2007
Aww, thank you. No, we'd never give up on her. And bless the GP who took me seriously - I need to write her a thank you letter, yes.

Its a huge relief to know *I*'m not crazy or munchausen's by proxy or anything else I've been accused of. Really a big relief. And though it does spread a bleak shadow on Pumpkin's long term future, the short term is blessed with a lot of help.

We're looking at changing schools right now, and a school has taken us seriously and can offer help in her nursery year as well as reception (kindergarten) year, so its all good from here on out! Its further away and means train travel daily, but there may be DLA in the pipeline for pumpkin, if i can get it for her. It'll be £70ish a week extra financial help so we can afford to take her hither and yon for extra things, appointments, a better mainstream school, etc. So, fingers crossed.

And its good for any others we might have, to have pumpkin a Dx this early means that any siblings, we'll be paying close attention to now that we know what to look for, and the NHS will take us a little more seriously as well since there's a family history.

Thanks for your support, Susan, especially with everything you have on your plate at the mo. *hugs*
 
posted by [identity profile] mooncove.livejournal.com at 06:51am on 20/09/2007
I know you would never give up, but I'm sure the system would be very daunting to a lot of parents, especially to be accused of Munchausen's by proxy! So I give you a lot of credit for persisting and not letting them beat you down. I'm sure it'll be a tough road, but it's good to know that she's high functioning and now will get the best education possible to make the most of her abilities. I hope the DLA comes through!
 
posted by [identity profile] mooncove.livejournal.com at 06:56am on 20/09/2007
PS: I stopped by my friend's house for a visit today--the one who broke the bad news to me--because she'd hurt her back (actually, she had surgery a couple months ago and had a bad relapse yesterday), and guess what her husband had playing on the stereo: the new David Bowie box set! (I got to hear all the great "glam" Bowie ... or "glambo" as I first thought I heard her say!) Of course, I thought of you right away. (In fact, she was also telling me about another friend of ours who's on Topamax--small world ... Of course, we always end up talking about medical stuff; she works in a hospital lab!)
 
posted by [identity profile] leoniedelt.livejournal.com at 07:59am on 20/09/2007
Bowie! :D Yum.

Topamax - works well, but hard to take.
 
posted by [identity profile] mooncove.livejournal.com at 08:10am on 20/09/2007
Yeah, her friend's having all kinds of side effects but getting used to them. (And she's lost a lot of weight too.)
 
posted by [identity profile] leoniedelt.livejournal.com at 08:25am on 20/09/2007
I had a helluva time. And lost about 10lbs (which i've re-gained) quickly, too, in 3.5 weeks. Insanity.
 
posted by [identity profile] leoniedelt.livejournal.com at 07:59am on 20/09/2007
Thanks, Susan. Your confidence in me is very reassuring. Yeah the system is daunting, but easier here than in the states.

I had other moms on another forum accuse me of Munchausen's. It was very hurtful :( But i've been born out as right. Not that i'll go tell them, they're the ones who reported me to s o c i a l s e r v i c e s...

Me too - reminds me, now its past 9am I can get onto the benefit's office and order my forms...
 
posted by [identity profile] mooncove.livejournal.com at 08:12am on 20/09/2007
"I had other moms on another forum accuse me of Munchausen's. It was very hurtful :( But i've been born out as right. Not that i'll go tell them, they're the ones who reported me to s o c i a l s e r v i c e s..."

That's just the worst! I wish you could tell them ... or maybe someone else you know could let it slip to them! >:-P
 
posted by [identity profile] leoniedelt.livejournal.com at 08:26am on 20/09/2007
They're so vindictive they'll probably report me again for spite. Cunts.
 
posted by [identity profile] mooncove.livejournal.com at 08:31am on 20/09/2007
In that case, I know you're angry right now, but it's probably best to try to forget them if you can. There's always karma ... I hope they get their comeuppance someday (in spades)!
 
posted by [identity profile] leoniedelt.livejournal.com at 08:38am on 20/09/2007
Yeah, i know. Hence i havent logged in and told them all to fuck off once and for all. They'd dispute it anyways, call me a liar, try and make me prove it, etc, and its just not worth it.

Instant karma's gonna get em. Yes.

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