I feel sick after visit from HV regarding DS's DX

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As you mostly all know DS was dx AS a couple of weeks ago (privately). HV came round today who I have spoken to many times on the phone but never met in person (she is a new HV working with my previous one). Anyway she is nice - I am not saying otherwise. But I feel so upset now. She doesnt think DS is AS. She thinks he is a genius. Fuck it sounds so stupid. And anyway they arent mutually exclusive. But he is in a great mood today so none of the negative stuff I have been posting about. She was here an hour and a half and just said he was a delightful child (yes, I know!) but clearly a very high IQ and years ahead of himself with regards to comprehension, speech etc. Now I am not complaining about this - I am upset - no - devastated that everything we have been through has been reduced to high IQ in an hour. What about the repetition, the melt downs, the everything? Really the everything? Is it all down to being very bright? I just feel... robbed of my security that what I am doing is the right thing.

She said perhaps he will need something "better" than his preschool he is about to start, or something different and none of this makes sense to me.

She is chasing again the referral to get the DX on the NHS but she said when we go to see the peadiatrician if he looks at DS and sees a normal delightful little boy it will go no further. How can this be? How can one appointment negate everything I have been through?

Is this normal? Have you all been through it with your children? Am I doing the right thing?

My HV saw my son at 4 and said - what a lovely engaging child, his behaviour is due to him being very bright and bored, he will be fine at school, try and get him to start early.

WHAT A LOAD OF OLD CRAP

DS has AS and demand avoidance dx'd at 7 after 4 or 5 meetings with the professionally qualified to dx paed over the course of about 18 months. The paed took all our answers, the opinions of the Ed Psych and did a few things with him over that period of time before making the dx. Not from one brief meeting - she is more professional than that!!! At all meetings DS was incredibly well behaved and still we got the dx!!

He is now 9. School has been a nightmare as he can't cope and we have been fobbed off at every turn because he is so bright. He is 'gifted' at practically all academic subjects (whatever that means in real life rather than school speak) and is classed as being in the top 1% for maths for his peer group. Lots of people who aren't qualified to dx AS will tell you that as he is bright he can't have AS - THIS IS COMPLETELY UNTRUE. Our paed says that his intelligence masks his difficulties and his presenting eloquence deludes people into thinking he is emotionally able to cope.

Sounds like this may be something you may want to think about with regtard to your DS. Also I don't believe a paed would make a snap decision in one meeting about your child given you have concerns about him and would want to observe him over a period of time.

From here it looks like you are doing the right thing in pursuing this.

My ds2 didn't behave in the best of ways when we got his dx. When they done the ADOS, he tried, on several occasions to climb out the window (we were on the 2nd floor)

Yep, J behaved bizarrely during the ADOS too. Always does at the hospital.

debs, I agree with you totally and I would be very wary of who I spoke to over the phone - How can you be certain they are qualified either? Anyone could have pulled this questionnaire, that I mentioned, from the internet etc.

HV training, I believe is now less than half of the time it takes to train a GP nevermind a specialist of this sort. They no longer have to train as nurses first and can go straight to HV degree at uni and out on the job much sooner than they used to. (So I'm hear anyway).

So, sorry HIDL but neither can be counted on solidly at this stage. And I really do know that being in no-mans-land is a very scary place to be.

But HIDL seems to have a very strong instinct backed by some clear facts which many of us seem to have mirrored back to her but so did this phone doctor.

Many of us have been through the NHS assessments which are notoriously lengthy, (I would hope so anyway) but rarely are they unreliable.

Would suggest that any private assessment should be done through recommendations too. At least then you know what to expect and how reliable the dx is.

Sorry for abruptness - exhausting week here in Tallulah Towers.

(((hugs)))) to HIDL - Take time to just feed the ducks, looks like a nice day tomorrow.

Hi everyone! Well had a rest in bed for a while after DH got home and just now ate a nice dinner.

Thanks again to everyone offering their support. Firstly I will explain, I have done on previous posts and have generally got lazy i.e. I dont re-explain it. Regarding the phone diagnoses. The Specialist was highly recommended to me by the NAS. I contacted her (on one of the very bad days on which I was posting a little while back) and we spoke for about an hour and a half. To get formally (face to face etc) DX through her would cost £900 which we can not afford. She was very good and everything we went over she did without charging us at all, she was simply trying to help me get some perspective on what was going on. She said "he is definitely on the spectrum" then later "It will most likely be AS due to his language skills" then "I am confident when he sees an NHS doctor they will say exactly the same thing". She then later sent me an email with a link to an AS support group in my region. I contacted that organisation - they are coming to our house in a week - he said it sounded like AS.

The DX is not "on his records" but I have been assured it is the case. She also said he would probably have a very high IQ if tested.

So that is where we stand with regards to official DX! The NHS has lost our referral and also sent us to the wrong doctor (we turned up, she said "you were supposed to see someone else" it now appears they have lost the referral again so we are potentially as of tomorrow being re-referred for the 4th time.

Regards the HV today - what could she possibly have meant by "something better" than his preschool? In a totally feral mother kind of way I imagined him being taken and sent to genius boarding school or something. I know obviously that wouldnt happen but still I am baffled by the comment.

myredcardigan bless you I would shower you with cakes if you came over! Not presumptuous at all! Flippin heck that applies to all of you come and eat cake.

I am indeed very stressed out. Its because I see him in the bigger picture, and also in the day to day minutia. And I feel ultimately I am the first and last person responsible for his well being. It isnt that DH isnt 100% involved. He is. But he is not here 24/7 as I am and just has a little bit more distance. I am sure you have all been there before you look at your child and suddenly you realise you are holding the most precious thing on earth in your hand. Then that precious thing suffers and is vulnerable and yet brilliant and funny and now I am just trying to get us collectively out of this quagmire.

Rant over! Am drinking wine now!

[DS shocked HV by playing with one of our pets who she was frightened of & he just said "It's Callisto, the degu!" How is that for a genius two year old! hehe - for any degu lovers reading this dont worry she isnt being kept alone we are adopting 3 degu friends for her this weekend]

hereI - re:the "better than pre-school" - I wonder if she was getting at sending him to the nursery of a selective private school or of a very good state school - i.e. somewhere she perceives to be more academic.

Thanks for clarifying about the DX.

sorry for the confusion re DX I did think I said it before but I most certainly dont expect everyone to keep up with my posts! I can barely keep up with myself let alone everyone else!! I just cant be bothered to type it out each time.

I love the pre-school he is going to - today being his first day - and it would take a bloody strong argument indeed to persuade me to send him anywhere else. And it isnt private or anything, its just brilliant! The staff are amazing.

Sounds ideal - a regular preschool will give him the chance to develop his social skills with a cross section of children, the academics will follow naturally as he's so bright. Hope today goes well!

ds1 is no genius but he was reading words and numbers at 2, and we've encouraged this at home while preschool support with the social interaction side of things. It's worked really well for us.

That's appalling that the NHS lost your referral, the same happened to us last year and it's all you need when you're stressed and waiting for such important appointments. I think most HV's try their best but just don't have the training or specialist skills to identify ASD in children. I would disregard most of what she's said, but it's good that she's organised the weekly visits for you.

just got back from first day at school and put him down for a much needed nap!! He had a good day, the Head is his key worker because she is SENCO trained. She said he declined finger painting and each time they shifted from one activity to another he got a little upset but she was able to reason with him so all in all very good!!! I am so proud! I am asking him loads of questions but he is so bloomin sullen all he says is "dont know" to everything! I did manage to get out of him though that he would like 2 days not just 1! and he said he had a very good time and everyone was nice and he read about Thomas. That was the full extent of the information I got about my son's first day at school!!! I am dying to know all the details!!!

Looks like NHS has lost our referral again so this will make the 4th time we have been referred for the same thing. Nice, isnt it.

glad the first day went so well, the head sounds brill, really hands on.

I would speak to PALs about the continual losing of referral issue, it's really not on. Also - unfair as it is - it's wise to chase up every referral if you've not had an acknowledgement type letter within say a week or two.

Worth ringing/ writing and saying that you can take any appointment, at short notice, as then they will ring you if someone else cancels or doesn't show.

I have chased them up but probably every two weeks. They got shirty with me "it all takes time" etc so I decided to be patient this last week. As of yesterday that patience is well and truly over how could they have lost 3 referrals?? Well one wasnt lost, one was we were directed to the wrong doctor. But thats just as bad! I will speak to PALs and start a complaints process. I am also going to see if my husband can pull any strings. (PLEASE dont think badly of me for this!!) he is a manager of a non medical part of a department at our local hospital so maybe he can help. We were trying to obviously be fair and go through the channels like everyone does but as they have been so incompetent I am not above asking his work colleagues to try to intervene. Is that bad??? Is that a no no?? I am almost scared to mention it on MN for fear I will upset someone thinking I am taking advantage but to be fair I have waited a long time.

givemesleep we have done that we have supposedly been on the cancellation list for 6 weeks but we never get called because they keep losing our information.

that's absolutely appalling hereI, what on earth are they playing at. as someone who waited 13 months for paed/ed psych assessment for DS - I don't begrudge any string pulling - if it means families don't go through what we went through.

that's crap.

thanks and (phew!) I am glad you dont think I am bad if I ask DH if he can think of someone to speak to about it.

HIDL: Just passing 5 mins on MN and wanted to say Hi .

Personally, would recommend that your DH offer to walk the dog or wash the car of any colleague that can help. Anyone here would most likely do the same in your shoes. Especially as you would probably have been seen already had they not lost you in the system. Plus it gives DH a way of feeling he's 'doing something' anyway.

Did DS find out where they keep the Thomas books? Mine figured it out early; if they wanted him to move activity then they would have to give him 5mins of Thomas - Deal or No Deal? Soooo proud....