Finally after all this time DS has his ADOS test tomorrow....im nervous

[bonkerz]

im really worried about how he will do. If he does really well then im obviously a paranoid mum who has been making everything up. If he does badly i will finally have a label for DS which although its what i want its going to be heartbreaking too.
DS has the test at 2pm tomorrow and i have to go for the ADI-R next tuesday then doctor will write the report and DX within 10 days.

[bonkerz]

thanks givemesleep, i think im going to have to make a point of repeating myself over the dont say it thing, its so hard cos he really doesnt understand that what he says could be taken as being rude and upset people. To him its an observation, nothing more. should i mention it to the playscheme leaders do you think? They are all specificalkly trained in ASD so would hope they understand he is not being racist but i would be mortified if they get the wrong idea.

[daisy5678]

I would mention it as a pre-emptive thing, in case he does say something. You could make it vague and say, oh, he keeps talking about others' appearances and doesn't realise that you shouldn't comment on others' looks in case it upsets them.
J has NO CLUE that talking about someone's spots/ skin colour/ fatness is rude. It's v v v embarrassing!

[bonkerz]

well wish me lick am off for the mammoth ADI-R interview now! Will report back later in the hope of some feedback from ADOS test last week!

[bullet123]

Good luck!

[magso]

Hope today goes well Bonkerz!

[bonkerz]

Hi all, thanks for the well wishes!
3 hours of talking, 2 cups of coffee and half a pack of chocolate biscuits and ive got to go back next friday for the rest of the forms! We didnt finish!!
I did however get some feedback on the ADOS test and where the Dr is at right now with a DX.
She feels that DS is intriguing, she says she has definately seen lots of traits and already is concerned about DSs language skills. She wants to refer DS for SALT, OT and Psychology assessments. She says that with regards the ADOS test she WAS concerned after thursday last week that she would not be able to score the module based on DSs performance BUt she had watched the video again and again and treid to figure out if the way DS behaved was Oppositional or due to lack of concentration (ADHD) or if indeed he just did not have the skills to answer. She concluded that module 2 would be inappropriate but would like to see DS one more time and try to assess him with some of module 2s toys to get module 3 completed a little clearer. She said it will be more relaxed and more to confirm her suspicions than to assess him again.
This Dr assured me today that she did not feel the way DS presents was down to me or my parenting, she also said she has been knocked sideways by DS as she was prepared for a child who was NOT AUTISTIC (her exact words)due to what the CAHMS DR had said and yet she had found a child who was very complex and clearly had autistic tendancies and severe needs. She said she was not clear on DX yet as wanted to score the tests first but suspects my suspicions are well founded!!!!
Whilst all this is amazing im currently jumping from being happy we have finally got somewhere and feeling really sad and close to tears by all of this. God knows how im going to feel when this DX is in writing!

[nikos]

It's so bizarre isn't it? A diagnosis lets us know what we're dealing with so there is satisfaction, but at the same time there is no going back now. All the fears are confirmed as well.
It sounds like you've got a really good paed so that's a real blessing. Well done you for pushing for this and getting this far.
Perhaps a glass of wine would be a good idea now.

[bonkerz]

mmm me thinks a glass of malibu is required!

[Buckets]

Oh she sounds nice and thorough at least, but what a pain having it all stretched out so close to the 'finishing line!' What you're feeling sounds totally normal, there is such a gamut of emotions to visit but once you get a DX you'll be able to put some to bed and make some room in your head. Sorry about the mixed metaphors LOL.

[daisy5678]

Oooohh Bonkerz, the 'confirming her suspicions' bit sounds really positive.
So glad you've had your parenting validated too. Not that anyone here suspected any different, but it's always good to be told that you've not caused your child's problems and to be made part of the solution instead, WITH the professionals.

When will final dx be?

You have a drink (or three) cos you deserve it!

[Aefondkiss]

bonkerz, sounds like you have had some tough stuff to deal with lately, it feels like a roller coaster ride for me, I hope your ds gets the help he needs, I like the sound of the doctor, she sounds very thorough, I hope the large glass helped a wee bit!

Is your dsd okay?

[bonkerz]

Big glass of malibu went down a treat thanks!
Aefondkiss: DSD is ok thankyou for asking, she has been amazing about it all really and was very patient today with DS, im very lucky as she has been with DS for 6 years and she is only 7 on thursday so knows him well and loves him despite his temper, she is also very forgiving of him.
At 7.30 i had a call from the doctor to ask if i could research my family background a little more before we next meet. i have a nephew with ADHD and one who i think has a DX of Aspergers but couldnt be sure if it was HFA or Aspergers, She has said she would like me to find out as it could be relevent to DS.......So do i assume she is looking at HFA? Would genetics play a big part when distinguishing between mild ASD or Spectrum disorders and HFA? I dont know what to think now TBH

[daisy5678]

They do think it runs in families. I don't think it's relevant to differentiating between different types of ASD though.

[bonkerz]

mmmmmm maybe she just wants to see if it defo runs in family then! I dont know TBH!!!

[Buckets]

Oh yes, any engineers in the ancestry (both sides)?

[bonkerz]

LMAO buckets! Problem is there appears to be lots of undiagnosed ASD in our family!

DS kicked off at play scheme today! Thankfully they are all trained and dealt with it well and DS seemed happy enough when i picked him up! They really did not seem phased by him at all which is refreshing! I mentioned the comments he had made about his key worker and they said he hadnt said anything to them but would keep an eye out for inappropriate behaviour!

[bonkerz]

Well today has confirmed things agian regarding DS. I had a meeting with Parent PArtnership to try and get this paperwork sorted for the appeal in September!
The LEA are basically saying that because DS doesnt have ASD DX then he cannot attend a school for ASD children. They are also saying he belings in MS. OBVIOUSLY i now have ALOT of replies from MS schools all saying DS would not fit in and would not cope in MS school and im gathering evidence to prove my theory that actually DS needs to mix with children like himself.
I spoke to the play scheme leader today about this theory and basically they are sying that DS fits in perfect with the other children on this play scheme ( all ASD from mild to severe) and that they would agree that DS is ASD and that despite having one to one support at the scheme by fully trained volunteers who work with children with ASD every day DS has failed to cope fully and has had melt downs etc and in no way would the leaders of the scheme say DS could cope in MS! They have said they will quite happily write a letter detailing all the incidents and level of support DS has had the last 6 days too which will be brilliant in our case!

[bonkerz]

so have our last appointment with Dr tomorrow morning. She is going to do last part of ADOS test with him and im going to see if i can get some positive feedback with regards DX. Im gonna push tomorrow i think!
As for the holidays this end THANK GOD for respite. I swear i lost it with DS this week and swore at him which is something i have not done for a very long time. I felt awful but know it was because i have been pushed to my limit this week with DSs behaviour, Infact DH praised me for not physically acttacking DS! I suppose its the better option when you look at it like that but still im ashamed to say i did swear at him. Anyway he went to childminder today and despite me having 4 other children at home i found today less stressful. Ds will be off to childminder again for few hours after Doctors.

[siblingrivalry]

Best of luck tomorrow bonkerz, let us know how it goes. Just be a PITA if you have to!

Don't feel bad about swearing-I think we've all been there. I know I have, over the last few days.There's no denying how truly stressful it can be at times - I went into the kitchen and screamed yesterday. The kids thought it was hilarious and are telling everyone in sight

Crossing my fingers that you will be posting with good news tomorrow.

[twocutedarlings]

Good Luck bonkerz!!

Hope you sleep well tonight and have the wine on the go!! sure wish i could LOL

Dont beat yourself up!! tis not all that bad, im sure he has heard worse .

I will be thinking of and have everything crossed for you.

[bonkerz]

well, i didnt get a chance to push Doc BUt she did say these things to me.....

she was going to get her collegue doctor to CC the DX just incase anyone questions it (she is not from county!)

#She feels the result she has come to is positive and will help DS get a school suitable for him

She wants a meeting on Thursday to go through the results and wants to help me find a suitable way to explain the DX to DS.

How do oyu interpret those ??????

[siblingrivalry]

I would say that he will have an AS or ASD dx;mostly because she wants to discuss how to tell your ds about it. There would have to be something to explain to him IYSWIM.
How do you feel?

Just found out we have to wait 6 weeks for the second part of our ADOS. I know that isn't long compared to some areas, but dd will be back at school by then and I really don't know how she will cope
Sorry for the moaning.

[BriocheDoree]

Bonkerz, so pleased you are finally getting somewhere! Hopefully the diagnosis, whatever it is, will be the start of getting the help and schooling you need...