im feeling so sad today and cant stop crying :(

[jenk1]

i know im being stupid.

here goes

a friends child was dx,d with ASD last week,their DC is only 4 and from start to finish the dx took 4 weeks,this is on the NHS.

so while im glad they have an understanding of their childs problems, its brought back all the CRAP we,ve been having to go through to get DD a dx.

she is 5 next month and in Nov 2006 had the assessment at the CDC which said suspected ASD,then a year later they dx,d her but this was overturned by a phonecall from the Ed Psych who disagreed,we were shoved onto CAMHS who we have been under a year and
no where near getting a dx.

they havent ruled ASD out and are monitoring her but im just so so weary of it all,the same happened with DS in that they wouldnt dx him

i just feel like getting her discharged and not bothering.

God i bet i sound really self pitying,i dont mean to i just cant understand sometimes how the system works.

heres me giving advice saying some of us take the scenic route and then i collapse in tears

Aww Jenk, you're bound to be upset! I didn;t realise you have been waiting such a long time for your dd to get dx. How long are they monitoring her for before they give dx?

im not sure,they havent given us a time,they just said that with children like DD who show some traits but not enough for a dx (PAH)they like to monitor them.

she has been dx,d privately but we want an NHS one as she may need support in school as she gets older.

Sorry it's a bad day Jenk. I am sending you a virtual glass of chablis and some pretzels to cheer you up..... x

Sympathies Jenk I have been in tears almost all day today about my ds

His school seem to think all children should conform - My ds is not too be moulded in the way they want him to (Hurrah for him I say!)

I hope tommorrow is better for us both [hopeful]

Grrr Jenk, bloody professionals! They have no idea how much they put families through by dragging things out!

did u end up getting a private dx tclanger, sorry i cant remember for definate.

i mean is it typical behaviour for a little girl to say she doesnt like another girl in her class because she has curly hair?

and to come home upset because none of the other children will do as she says, she said she was telling some off for not putting toys away properly and they wouldnt listen to her?

I think it's hard because she sounds so borderline. Your private dx was PDD-NOS, wasn't it, which is kind of the same as the NHS are saying: she doesn't meet all the criteria for actual ASD, but she has some traits - that's what they dx in the USA when criteria isn't met for ASD, but the NHS don't tend to use it here. So I don't think it sounds like the NHS are disbelieving you or your private psych - NHS says she has traits, private psych says she has traits, it's just that he'll dx PDD-NOS on that basis, as would happen in America, and NHS won't (yet).

It feels crappy when you feel like you're not believed but it does sound like there's not lots of disagreement - they're not saying she has no traits and you're imagining it, which is good.

Hope you get some kind of definite answer soon. I'm not surprised you're getting frustrated. I guess it's better that they take their time and (hopefully) get the dx right rather than mis dx-ing her though. J got a really really quick ADHD dx, but it was so quick that they missed the autism! I'd much rather they'd taken their time to work out an accurate dx ...but in your case, they really are taking the piss time-wise and I hope it gets sorted soon.

yes he did dx PDD-NOS,but NHS does dx children with it as well,as i have known of a few families that have the dx.

last year the consulant said she saw "traits" but also that DD was hyperactive and had attention difficulties-which she does,but its been a year now since she was referred to CAMHS and we are no nearer to finding out what is going on, and i do feel extremely frustrated to say the least.

the other thing i need to address is that CAMHS are going into school to help DD with her toileting difficulties so that should mean shes on SA+ but we,ve had no meeting or IEP so ive got to speak to school about that next.

CAMHS could be such a good service if there was a set of national standards! It's shocking how much it varies from area to area.

I know what you mean about IEPs. J has a full time (+ more) statement and yet hasn't had an IEP since 2007!

Jenk - completely sympathise. It took over a year for DS to get seen by the paed in joint clinic - then I hear that someone else in the same city got a cancellation appointment (which I was told didn't exist) and got their kid seen within about 3 months. And my friend who got her child referred to community paed team for failure to thrive (so ended up seeing that same team of paeds) got an appointment within two months . And we've got that "monitoring" crap too - primarily because of DS's echolalia.

the school nurse was very helpful about the monitoring - he said that they should not just be saying monitoring, but should be saying how long the monitoring is for but what happens next.

I still feel quite scarred by the lack of support with getting DS into school, that I was cast adrift with a child with severe language delay, and left to it to suss out a school, as early years wouldn't help as he hadn't seen the paed yet. I was literally worried sick for about a year about DS being in mainstream school (statements seem to be as rare as rocking horse shit round here).

thanks for all your supportive messages.

i contacted the private psych who dx,d DD with PDD-NOS yesterday and heard back from him last evening.

ive sent him some videos of DD,s behaviour at home and photographs of her out and about, he said her ASD is more apparant now than it was a year ago and that CAMHS are dragging their heels.

so, when its Easter holidays hes coming to do a sensory profile of DD at our home since CAMHS refuse to accept she has sensory difficutlies or refer her to an OT (the waiting list is 3 years at the mo ), im writing to CAMHS to ask them if they plan to see DD again and what direction their work is taking,im also asking them to call a multi-agency meeting after easter between us,school and themselves to discuss where we go from here with regards to DD toilsting difficulties, -that should have been done in the first place anyway.

i feel calmer today,i had a good cry last nite, DS found me crying upstairs and gave me a cuddle and said dont give up mum,you didnt give up over me dont give up over DD-we all know she is ASD dont we, that was so sweet of him,hes a darling

if i have to write complaint letters and force them to assess her properly then thats what ill have to do,im just astounded that we are having to do it all again,you would think they would have learned after DS that we dont go away and will fight for our children.

Oh bless your ds! That would have made me cry all over again!

Glad you are feeling a bit better today.

inclusion officer - bitter laugh. My experience of the inclusion officer at pre-school level was:-

"all mainstream schools deal with all SN these days, so I can't give you any advice about schools. Oh and since DS hasn't seen the paediatrician yet I can't help you any further". .

Possibly outside the pre-school level the inclusion officers are more helpful.......

it's going to be one of those things that varies from area to area - am pretty sure other people on here have had good ones, who worked hard with the kids and parents on the transition from nursery to full-time school.

really big hugs t you my friends son is in same situation he displays a lot of ASD traits but had assessment the other day and they said he ticks no boxes and to monitor for next 6 mths she is struggling with his violent behavior obsessive and terrible need for routine

your ds sounds such a sweetie its ok to feel down you all supported me last week when i was having my moment

lets hope you will get somewhere now xx

my friend just paid for private ot and had fantastic outcome and although expensive said it was well worth it maybe this could be an option for you big hugs keep your chin up your doing great xx

Have a look at www.treatingautism.co.uk. I think they are brilliant.

well this morning a letter arrived from CAMHS.

They are still refusing to confirm in writing if DD is being assessed for ASD or if they are going to refer her to an OT but they would be "really grateful" if we would agree to a meeting to clarify their future involvement with ourselves and DD.

but they still wont confirm in writing what is going on?????????

You know that the school or you (via GP) can refer to OT, don't you? I would go that route if you want an OT assessment. Far quicker and less stressful.

thanks for that givemesleep,unfortunately there is a nearly 3 year waiting list for OT,s in our area, so we are going to have it done privately.

curious as to why they wont say yay or nay to still assessing her tho????????