Feeling shell shocked after 1st paediatric appt

[singlevillagemum]

i have posted a few times on the board but always feeling a bit of a fake as everything was 'suspected' or possible. I'd read threads about paediatric appts and thought I was ready and prepared.

Now I'm sitting here in shock because all of a sudden it's so real. First shock was that she told DS (6) that he has aspergers to his face but that he would need to do an ados test soon for his 'papers'.

Salt referral, camhs referral, specialist teacher referral, family something advisor, all just reeled off so calmly.

DS was an angel throughout but I have been bombarded with questions about 'what is aspergers?' since leaving.

Just feeling a bit fragile and overwhelmed now.

, On your first visit the paed diagnosed your child in front of him.

What other assessments have been done??

I am not surprised you feel shocked, I feel for you he/she shouldn't have done that.

I would complain if I were you.

Be kind to yourself

That is outrageous! How disgraceful. Definitely complain I would also use this complaint to push for the ADOS test to be brought forward ASAP as you can state that now your poor DS is in a state of confusion and very anxious about being told he has AS. There are usually very long waiting lists for this test so you do not want to be left for months or years in limbo. I am so on your behalf!

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We were told at first appointment that they were pretty sure DS had AS but that was NOT in front of him.
That should have been up to you to tell him when you felt ready.
Also sending [hugs] as remember feeling awful to have what we suspected confirmed.
Go easy on yourself.
There is a great book on amazon here which will answer a lot of your DS questions simply if you can wait until you can get hold of a copy.

Why the outrage??

Surely this is a competent Paed who has the courage of her own professional competence to much such a dx - instead of hiding behind tests and panels?

If she's any good she'll know the ADOS test is actually a load of

Surely this is what we all want - a quick and decisive dx?

I think it's wonderful - a dx and follow-on referrals, all from one session.

This is how it should be.

Thanks for the replies. After dropping him off to his boy's club I've retreated to costa for hot chocolate and chocolate cake and am feeling a little calmer.

I think it's just the whirlwind nature of this in comparison with what I've read here from other posters. It was only about oct I posted tentatively asking if DS was 'a bit odd'. It was advice and support I received from MN that made me ask the gp for help.

I am relieved in some ways, and feel bad about feeling unsettled because I have read so much about people's struggles. I just thought DS wouldn't be in earshot for the information. I guess amazon will be getting an order from me tonight.

Blimey wet August! Yes totally agree a decisive DX is great but would rather the competent paed told me and not my 6 year old child. I haven't told my DD what her DX is yet she is too young to understand.

Well if she's too young to understand it would be in one ear and out the next.

I really don't get all this 'we'll break it to the DS/DD very gently when we feel the time is right etc'

I'm another who thinks that pead deserves a medal for just getting on with it and not faffing about. Too many children are left to suffer for years of "wait and see", till they are so far behind and their self-esteem is permanently in the toilet.

I do think you should have been told out of earshot of your child though, if only to protect your child from any negative reaction you may have had.

In terms of what you say to your child, then something along the lines of:-

His friend X is really good at climbing, his friend Y needs help to see (wears specs), his friend Y is great at maths or writing. Then everyone has things they are good at and things they need a bit more help with, cos we are different and that's what makes us special. People use long words sometimes to descrbe what sort of difference they are talking about. You child thinks in a special way and the word used for that is Aspbergers. That's the word teachers etc will use when they are talking about how your child learns and how to help him to well at school.

If it helps any DS's Grandma is a primary school teacher with AS. Proof in my eyes that an Asbergers diagnosis doesn't always = an adult life with all the nasty negative connotations we all read about in the media and elsewhere. She says herself - she learnt social skills differently as she had to be taught explicitly what others learn by instinct but she did learn! She's been widowed once and remarried happily a second time.

I am more and more by the SN board. Really I am. If a poster needs to go back for several paed appointments, the paed is out of order for dilly dallying around. If a poster gets a dx on the first appointment, the paed is out of order for not giving the poster time to digest the information.

If a teacher raises concerns, they are out of order for daring to suggest a poster's child isn't good enough. If they don't raise concerns, they are incompetent.

So the doctor told the child about their condition. At 6 a child who is high functioning is old enough to understand that they have a reason for the things they find difficult.

Well said Lougle.

I think it's really positive that you have been given a DX so quickly. If it's obvious, it's obvious and no need to be left in limbo. It does take a while to get your head around it, but with the support of this board and your RL network, hopefully you'll come to see it that way. It's still a nasty shock to have any lingering hope that it's just parenting extinguished.

I don't think the paed should have told your DS. Some children take these things very well, my DS was unconcerned, but I know some DC can get very anxious about these things. I think it's better that you are honest with your DC, but you should have been given the option to break the news in your own way and your own time.

Give yourself time to be upset, it's a grieving process, IMO. (((hugs)))

Just as a matter of interest....

If a child had leukemia / cancer / hole in the heart...

Whose role would it be to break the news - doctor or parent?

Parent, everytime, unless they ask the doctor to do it for them.

to be fair to the OP, there is so much of a postcode lottery and a multi-disciplinary mystique around ASD diagnosis, that she didn't really know what to expect out of today's appointment, and a diagnosis, even if expected, can hit hard.

As we never received a proper DX, I can't really comment on the DX disclosure point, but that aside it sounds, touch wood - assuming that the diagnosis makes it onto written correspondence - like the paed has done a good job in promptly arranging support and looking out for your child's interest. I would not be in a rush to complain.

Ellen

Wouldn't the doctor be concerned that a parent (not being a shit hot specialist like what he was) might not convey the right message to the child?

To a six year old child? You tell them what they need to know. The bloody doctors don't even like to mention a possibly devastating DX to the parents, let alone to a small child. Doctors aren't exactly famous for having a good bedside manner. By all means ask their advice, but who should tell your child? It's your responsibility.

Thanks. Interested in your view. I think that I'd rather have the doctor tell them. I know that, had DS been dx's at 6 and told by the doctor, he'd have interrogated the poor sod until he was dragged out of the surgery

I think that as you are likely to be upset yourself you need time to get yourself together before telling child. If diagnosis is given at same time to both parent and child this doesn't give parent time to get themselves calm. Whilst it might have been obvious and everyday occurrence to paed it is pretty dire news to take in your stride.

It might be better to have someone tell them more dispassionately if that would suit your DC's character, but I still think you should get the choice...

Perhaps what's needed is for the NHS to keep 2 separate lists of Paeds, one list for the sort of Paed that will tell you "Your cats dead" and the second list for the sort of Paed that prefers "Your cat was having such a wonderful time chasing leaves on the roof of your house that it tripped and fell......"

Based on my experience of paeds they could do with a list of the ones who can relate to parents and children in a sympathetic way, but I must admit your idea has made me smile after a particularly shitty few days!

Wouldn't that be a vet?

I had this with my dad last year.

Brain surgeon: Sorry, we got rid of your brain tumour but we just found you have end stage liver cancer and could well not make the weekend.

Liver Consultant: Hiya. Let's see how you're doing after the weekend and then run some tests. Perhaps you could be treated as an out patient.

Wtf?

Sorry OP. it was inappropriate to write that on your thread. It is the anniversary of my DF's passing so on my mind more than usual.

But I think my point is that I would be very grateful for that paed's speediness and although I probably would prefer to manage the info transfer to my Ds myself, direct, decisive and facts without confusion are so much easier and healthier to deal with in the long run.

Also, it is probably that the paed doesn't think it is especially devastating news, and that you are already 'there' with it.

However, I remember clearly getting the working Dx for a child only I was convinced had an issue and shocked was an understatement.