Bag of nerves!

[woolytree]

After waiting since feb our first proper appointment for DD, nearly 5, tomorrow morning! Seeing Neuro disability clinic, Paed, SALT and Psych. Have to take DS, 1 and poorly with a virus and DH normally disagrees with me on certain points....but he works a lot so doesnt see stuff. Nervous. Will they see what I see, believe me, give dx, think im nuts.....either way I think ill be in tears!

She had some real set backs at the start of summer hols, toilet, talking, routine change. But seems to have really picked up again now....but I know just because she makes progress doesnt mean she is suddenly NT...just having a paranoid attack!....and i have no idea how NT kids behave!

Im taking the red book, my diary of notes on her behaviour/anxiety and contact details for other people seen. Any other tips?

No tips (sorry) just a big GOOD LUCK!!!

Thanks LMG. :)

Good luck.. and remember.. YOU are your child's expert... you know her best , you just have to get it across:)

I used to take a type written list for big appys,
a potted history with developmental milestones etc (because they always ask) then a list of what concerns me and why, when the behaviours started, how they developed etc..

If your DD is suspected ASD I would head them under the triad of impairments.. list the behaviours that fit (plus any others of course)

I used to feel a bit of an idiot doing this but several docs told me it was VERY helpful!!
GL again:)

Thanks...good tips Kidsncatsnwine...but my printer has no ink, I may write it out though. :)

good luck. Dont worry if you cry. I am sure everyone on here has cried in the presence of a so called professional! Just think of how much you are supporting your child. Same as above-you are the best advocate for your child. Let us know how you get on and good luck again

Yes dont worry if you cry I did when I had the appointment with e/p.
She didnt mind though and said I wasnt the first parent to get upset.
It is emotional as you so want the best for your dc.
I hope your meeting goes well tommoro and ds feels better so you can just concentrate on that.

Good luck x

Thanks all. Will post tomorrow. xxxx

Well its done....said dx ASD....more detailed report to follow after further testing in September. Didnt cry. Think I want the report into how everything is.Lots of speech tests today, very behind but showing lots of problems understanding language too. Are getting SALT at school...soon we hope, at least after half term they said. Advised school need more info into issues and try using PECS, social stories etc.

Gave us standard 'Parents guide to ASD' and sent away to absorb the info. DS did not behave, both DC up at 5am so both tired. DS bumped his head on a plastic chair then screamed a lot, sent DH out of room with him.... he was talking over me! Am tired and numb and grumpy. DH is the same.

Family roast dinner then theraputic wine time! :)

Hugs.
Glad you got some answers and a dx. Give yourself a few days to digest the news, even when it is expected it can still be a shock.

My son was recently dx in june, i didn't cry straight away but later on that day i had a grizzle, and again a few days later i felt very down.

Still now you can concentrate on getting him the support and provision he deserves at school.

Glad it went well, and as Genie says, hopefully a DX will open up doors for support.

Thanks. :)

Ive felt up and down past few months and shed a fair few tears so glad to feel a bit of relief now that im not mad....but aprehension at the details that will follow in her indepth dx.

Im interseted in what DX, ASD, everyone else has? Other additional DX? In explaining ASD to other family members you realise just how complex it is, every child is different. What support/therapy works for you?

Glad it went and you have got a dx,you will be able to get all the help you need now.
My dd is 4.4 and still has no dx they always say development delay and severe speech delay.
I hope now you have dx it will be easier for you tell friends and family and they will now understand why dd behaves the way she does.
I hope you get speeech therapy soon for dd,and you and dh dont feel so grumpy tommorow.

Woolytree, well done for not crying. I really tried but didn't suceed when we got our DS Dx back in January. Hope the red wine helped. :)

x

Woolytree
My DS was diagnosed earlier this year aged 4.
All we were told was ASD -no indication of where on the spectrum as he is too young apparently.
Well done you for keeping it together. Now you can concentrate on getting your son the help he needs.
This is prob old hat to you but in case you dont know -you can claim DLA and perhaps Carers allowance?

Hi Woolytree
Was thinking about you yesterday. Sending some hugs. I hope that you get lots of support in school etc.

Thanks for the support everyone! :)

I know about DLA etc but cannot apply till I get the full report in Sept. Same for school, got basics in place and a good inclusion teacher but rest will follow on advice in report.

DH is working 15 hours today....had a row at 5am when DS wouldnt sleep! He hasnt really spoke to me, but accepts dx fine....worried were growing apart already. :(

My friend just posted on my fb status....'phew'...'told it was nothing to worry about'....referring to the assesment but unaware we got dx...a non believer. Coming over in a bit....feeling cross already but prob just being paranoid. I suppose im a bit emotional today....lack of sleep not helping! .... :(

Give yourself a few days for this to sink in. Stress re DH is in my experience also normal; DH used to say at least I had Mumsnet to support me, but he didn't!

..."phew'...'told it was nothing to worry about'....referring to the assesment"....

I used to get that comment over and over again from my sister, who never could understand why i was so stressed out about the dx process.
Simple reason really: she has never been in that position with her ds, he is NT and has not got any problems.

I find a lot of ignorance is out there, and unless a parent has been through it, they can never fully get it.

Think I probably was a bit paranoid, she had spoke to another friend who knew about dx so was aware of the situation, tried to be quite supportive. She just knows very little about ASD....and doesnt seem very interested....although started joining campaigning groups on fb...possibly just for show as I doubt she understands what the campaigns are for. There I go again all cynical!!!

I think you do have to go through it to understand....I dont have enough patience to teach others....a leaflet maybe!

.....Anyways my lovely best mate has us booked in a spa on Saturday, just what I need....followed by a wino girly night in.

Thanks again for all your posts MN ladies! xxx