R was dx,d today

[JenRose]

R has been dx,d with Autistic Spectrum Disorder by her developmental Paed.

 

he said that she is on the spectrum but they are not sure where yet as she is only 3.7 and will need more monitoring as she gets older.

 

i got really upset even though i KNOW she has ASD.

 

but she is now being referred to the place that mike was under booooo hissss as they only take children up to nursery age.

 

but im sure they wont mess us about especially when we kicked off over mike,s treatment.

 

i feel very weird and i know this is what happens when your child is dx,d but its still upsetting

[oxgirl]

Take good care of yourself, JenRose. <'> <'> <'> You deserve some TLC. <'>

 

~ Mel ~

[Clare63]

Jenrose - <'> <'> <'>

Still comes as a shock, take care Hun.

Clare x x x

[loobylou2]

<'> <'> <'> take care of yourself.

[DaisyProudfoot]

<'> >< <'> JenRose - it hits you like a brick babe but it'll all be ok, your little one is still the same person she's always been and the help is there for her now she's been dx'd. Take it easy, the anger will subside and with acceptance comes a strength you never know you had.

[rach04]

I know what you mean. I was sure J had add as it turned out it was asd i bawled and bawled in front of the dr mixture of relief and sadness that he had got to 10 without anyone dx it.

<'> >< to you and R.

[Cariad]

I know what you mean, everything comes pouring out. I did this when my DS was diagnosed, I was pleased but very upset.

[stressedmumto2]

Take care of yourself, it's definatly going to be a time for mixed emotions, I felt this too, glad that we had a name for the behaviours and difficulties but also very sad at the same time,

 

Take care <'> <'>

[Guest Lya of the Nox]

be very kind to you and yours

<'>

[Bagpuss]

Take care and give yourself time <'>

[kellyanne]

i bawled and bawled in front of the dr

 

 

i cried to i managed to keep it together through out the whole assessment, but when they told me that J had AS/HFA i just cried and couldn't stop.

 

Jenrose take care of yourself <'> <'>

Edited November 20, 2007 by kellyanne

[Karen A]

<'> <'> Jen Rose it is still a shock even when you expect it.Karen.

[forbsay]

Take care and sending you lots of hugs. <'> <'> <'>

[witsend]

Jenrose - <'> you've got a lot on your plate at the moment <'> . Take care.

Luv Witsend.

[elun1]

<'> <'> <'>

Elun xxx

[krystaltps]

Take some time for yourself <'> <'> <'>

It's such a jumble of mixed emotions, isn't it?

[bid]

Take things easy <'>

 

Bid <'>

[shamu]

Oh Jenrose <'> I know how hard the day of diagnosis can be - I've been on both sides, giving the diagnosis and receiving it I was totally prepared to hear that James was autistic but I STILL found it hard to hear. And I am still finding it hard to come to terms with but we're getting there.

Give yourself time to take it in and digest the news

Thinking of you <'>

Shamu

[pearl]

Big <'> for you Jenrose.

[shortcake]

human nature babe, I sat and took Ryans diagnosis reallty well as i knew as you did what was wrong i then went home and cryed for days sort of like all the unsureness and maybe im a bad mum was taken away, hopefuly things will now get as you have a diagnosis x x

Edited November 21, 2007 by shortcake

[elun1]

<'> How are you today Jenrose? It's such a rollercoaster of emotions

Elun xxxx

[smiley]

JenRose <'>

 

Thinking of you <'>

 

I always get upset during meetings, appointments, and things like that - something about it being in black and white - even though i know it.

 

<'>

[annie]

<'> JenRose <'>

[JenRose]

i felt very depressed this morning.

but then this afternoon the "special needs" health visitor phoned me, i told her about the dx and she sounded surprised, did they do the ADOS. she asked

and when i said no she said "Ah" well you are being transferred to X hospital, they have specialists who do the ADOS and they will probably do that.

 

so now im confused, to me it sounded like she was saying she didnt believe the dx cos no ados has been performed, i wasnt aware that to get a dx you HAD to have one, she asked me what tests they had done and i said a multi asessment a year ago where they said they thought she was ASD, they,ve seen her in clinic a few times, they,ve taken on board the ICAN and ed psych,s report and the private psych and what we have told them and she said hmmm.

 

cos this hospital is not in the borough where the lea and she works its as if she is saying it doesnt stand, but its an NHS hospital so surely it should?

 

feeling very confused now.

[Bagpuss]

Try not to worry JenRose. I've had this with both my girls. Certain professionals I've come across over the years have queried their dx's, because the girls didn't fit "their" idea of what a child on the spectrum should be like Both girls were dx'd using different means, but DH and I know the dx's are correct, and that's all that matters

[Karen A]

Hi proffesionals don't always agree.However I have to say that if the Paediatrician works for the NHS it should not make any difference whether they work in the same borough as the LEA.

A paediatrician is able to diagnose because he/she is a Dr -whereas a Health Visitor is not.

We were in the situation where a Specialist SALT did an ADOS and would probably have said AS however the Consultant Psychiatrist was not certain enough to Dx clear AS.So the ADOS is not the only thing taken into account.

To be honest if a multi disciplinary assessment,EP,Psychiatrist and paediatrician have all said ASD then it is not the Health Visitor's job to give a second opinion.[i used to be a District Nurse and trained alongside Health Visitors so know a bit about the role].Karen.

[JenRose]

thanks for the advice, im feeling better today.

yesterday i spent most of the day in bed crying

 

i feel more positive and stronger today and im at relate later with dave so that should be fun.

 

this HV is doing a post graduate course in ASD and seems to think she,s the expert, but at the end of the day she,s an HV and she shouldnt be saying these

things to me, she,s never agreed with me and Dave when we said 2 years ago we thought rosie was ASD.

 

at the end of the day various paediatricians have seen rosie (at the last count it was over 20) for various things and i know they dont make these dx,s for fun and she has been seen by the private psych that dx,d mike and he raised his suspicions nearly a year ago and sent a copy of his report to the paed who when he read it said yes he agrees with us, im just worried now that the hosp we,ve been referred to will try and make us go through it all again cos they dx using the ADOS and a camhs psychiatrist usually dx,s (the one who messed us about with mike) and i cant go through all that again.

 

its so sad that we cant stay under the hosp thats dx,d her, its 2 mins away i can see it from my house and this hosp we have to now go to is 30 mins drive away,but the paed was very apologetic and said its all down to politics and the LEA want her under their hospital borough.

 

now rosie will have to get used to a whole new set of staff when she,s really at ease with the old ones, probably cos she,s spent most her life at that hospital in and out and i feel upset cos ive built up a really good rapport with all the paeds and other medical staff that are there and cos im an aspie i dont like change either!

 

but i will continue to fight for her, just like i did with mike, he,s thriving wonderfully now he,s even eating spicy food at school -i nearly fainted when he told me that!!!!!!!

[smiley]

Hi Jen,

 

Pleased to hear you're feeling a bit more positive today. <'>

 

You do have a lot going on at the moment - so make sure you take care of yourself too, ok? <'>