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SN children

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Original poster

Ados . . This weekend!! :O

46 replies

sweetteamum · 06/02/2013 09:06

We are 3 days away from DD having the ADOS at camhs.

I'm so nervous and questioning if she'll even get a diagnosis. I spoke to the practitioner who we've been seeing at camhs, who isn't going to be there and she was explaining the procedure to me. But at the end of the conversation she said ''and if you don't get a dx, they'll still be able to advise the statementing people'' I am now convinced she knows something I don't. Although, she does believe DD is on the spectrum.

All our hopes are on DD getting a dx, to go to a specific school.

We are actually due to see the Community Paed this morning, as we've not seen her for 6 months, so it's just a check-up (I think)

Oh I wish I didn't get so anxious before these things!!

OP posts:

FightingForSurvival · 06/02/2013 09:14

Hi I have had several peeps say to me the statement process is more about need than diagnosis. She is probably saying don't make assumption either way. My child has got dx, I have known unofficially since last week but going for the formal consultation today. I feel sick!

Original poster

sweetteamum · 06/02/2013 09:35

Sending you lots of luck and positive vibes for today. Thanks for the reply. I think the dx is important to us as its a sign post to support. We've been told without it she won't access things and can't get her into the school that's perfect for her.

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bishybashyboshy · 06/02/2013 10:01

Hey sweettamum its the not knowing that makes your tummy turn , my son has been through his assessments and we are awaiting the meeting to discuss the findings...unlike FightingForSurvival I do not have the balls to contact CAMHS before the meeting part of me is scared part of me doesn't want to know but then there's that little part of me which is longing for answers, and after sitting back and getting a grip I am happy at the moment ambling along as I am. I have noticed that my sons positives seem to be the main points raised during our previous meetings which does give you the idea that they know something that you don't e.g no difficulties. They have given me logical explanations for some of the quirks I have mentioned (which in all honesty would of been my way of thinking before all of this!) and when other things have been mentioned we have been answered with yes yes my son (who I imagine is NT) is so similar, and I must admit the amount of times I have sat back and thought oh no! There's nothing in it all!! I have put my son through all of this for nothing!! and then shame starts to take over. Then I sit back and think well no because if they didn't see anything to begin with we would not of gotten to where we are now...surely they would not have wasted time and resources if there was nothing to work with????. To top it all off last night while having a conversation with my son and for a reason which I can't actually see he calmly said "maybe that's whats wrong with me mum!" I was just gobsmacked by the response he had made, on further jovial questioning he said "you think there is something wrong with me don't you mum?" even though I reassured him that it wasn't true his comments just made me feel even worse about the feeling that CAMHS knew something that I don't aka I have wasted their time!

FightingForSurvival · 06/02/2013 10:16

BishBashBoshy. Make that call! I followed Starlight's advice and did it. I am still upset. I am still dreading today. But at least I know the diagnosis is coming. I'm still anxious in case they thrown anything else at me, it's like a rollercoaster of surprises. ADHD has been tentatively suggested as well as ASD so I wondering if we will have to go through a whole other referral process on top of what we have just done. Don't know if I have the energy for that right now, there's only so much holding it together I can do! Make that call! Go on, I dare you :-)

bishybashyboshy · 06/02/2013 10:56

oooo Fighting you have just dared me!!! Oh no!!! now that puts a whole new spin on things . My heart has just jumped in my mouth again and I am holding my mobile as I type with one finger!

FightingForSurvival · 06/02/2013 16:22

Well its over and done with now. Diagnosis was ASD, development delay and dyspraxia. Wasn't expecting the dyspraxia bit but it makes sense. Comm paed has discharged us, I was expecting that which she seemed relieved about. Just need to let it sink in for next few days I think even though I knew already. Think hub is a bit upset, he hasn't been obsessively reading up on it for six months like me so maybe feels more like the beginning of the journey for him whereas it just formalises it for me. I think it is going to help to have the diagnosis.

Handywoman · 06/02/2013 17:07

sweettea fingers crossed for this weekend. Good luck.

Ineedmorepatience · 06/02/2013 18:18

Good luck sweet hope it goes well.

I will never forget the feeling of "Is she, isnt she" that I had while Dd3 was being assessed and am glad we are passed that.

Be kind to yourselves and maybe have a bit of a plan for if she doesnt get a dx. If she does you wont need it but if she doesnt you will know what your next step is.

Original poster

sweetteamum · 06/02/2013 19:20

Thank you all so much for the replies. It's reassuring to know so many are understanding these awful feeling I have currently. At least they'll be over in a few days.

I hadn't thought of getting a plan together just in case we don't get the dx. Maybe I should do that in the next day or so.

I'm pleased things are clearer for you fighting. I'm feeling very much the same. Dh has some understanding of all this but not as much as me. He's not spent months researching into the early hours like I have.

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FightingForSurvival · 06/02/2013 19:22

Good luck, I really hope you get the outcome you want :-)

crappypatty · 06/02/2013 22:50

Good luck for ADOS. Do you have some support or recommendations from professionals for that school?

Original poster

sweetteamum · 08/02/2013 12:23

Thanks again :)

I don't have recommendations or support as such but allprofessionals involved know where i'd like her to go. I hope they'll give some indication on the day as waiting for 3 weeks for the letter is a long time, especially as we're close the end of the statement process!!

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crappypatty · 08/02/2013 20:27

I only ask as we have had private EP report, chatting about Possible HS I mentioned the school you would like and she said no way will LEA fund. Obviously your situation is different than ours as dd is already not in school. I really hope your dd gets the education she needs. It shouldn't be like this.

There are only 10 places for the whole borough inc SS and ASD unit, 4 for ASD unit. I can't bear to think about him not getting one of the four places.

Have you contacted the school? I think they come and assess to check suitability.

Original poster

sweetteamum · 08/02/2013 21:20

I have been to view the school and discussed with them, and they have said to name it when the proposed statement is due. He told me it's not easy to get into and to prepare myself for a 'struggle'

DH has been speaking to someone who used to work within the authority and he doesn't seem to think they fees are extra-ordinary. He said the ones he hears about are usually double what this one charges.

I really hope your son gets the place he needs too. It just doesn't seem fair that our children need the specialist services offered yet there is very limited availability.

I honestly don't know what DD is going to do if she doesn't get into the right school. The others in the area are apparently, not suitable. She's too cognitively able, she can't cope with other people taking her to school, so she won't need additional transport and an escort. The other specialist school in area are also likely to 'distress' her as lots of the children are in wheelchairs and look different (these are just a few of the things we've been told) by other parents etc.

Of course all this is dependant on a diagnosis

OP posts:

Original poster

sweetteamum · 09/02/2013 09:18

Today's the day and I feel so anxious. I've got all sorts going through my head and I'm chopping and changing what I'm thinking about

OP posts:

Handywoman · 09/02/2013 09:57

Very very best of luck... Thinking of you today. X

paranoid2 · 09/02/2013 10:02

Good luck. We had the ados exactly a year ago. It wasn't conclusive at the time although we came away knowing we were more likely to get a diagnosis than not get one. They had to do some more observations and then we got a diagnosis. The waiting was the worst. People say that the diagnosis is like a grieving process but all I felt was relief that we had the answers, the grief for me was the years of worry beforehand. I hope you get the answers you want and can move forward

isthatallyouvegot · 09/02/2013 12:19

Good luck x

moosemama · 09/02/2013 12:24

Good luck sweetteamum x

crappypatty · 09/02/2013 14:54

Hope all is well :)

Original poster

sweetteamum · 09/02/2013 14:55

We're back!! . . None the wiser :(

They had dd in there for just over an hour and I went into another room answering the same questions that I'd already answered. I feel a little let down that we didn't get feedback at all.

They initially prebooked us in for the middle of march but I asked for feedback earlier as we will be needing to name a school. Can't believe they are only giving me feedback in two weeks then I have to wait to get it through in writing - has anyone else had this?

Don't know if its best to keep our appointment for ados privately now or not?!

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isthatallyouvegot · 09/02/2013 15:01

Hello sweatteamum sorry you didn't have any feedback, we didn't get any at all until 3 months later when we were asked to come in for the development history appointment and then the only information we got was that which was similar to what ever we had mentioned during the meeting the psych kind of refered back to her notes if she had noticed similar or something which we hadn't noticed, so we will only be getting the full picture when we go for the final meeting to confirm or rule out autism . Its horrid isn't it? thinking that you may get a little bit of information but instead you are left wondering still.

crappypatty · 09/02/2013 15:38

Talk about suspense, at least if you had been in room for ADOS you would have had an idea. It wil be a long two weeks, but at least you may have some answers then.

FightingForSurvival · 09/02/2013 15:50

Hi, I had to wait about 6 weeks as the multi disciplinary team couldn't meet before then. Our appointment with the paed. was after the statement deadline but they got the info to the statement people in time. In fact, they also told me the outcome unofficially over the phone before then too and then went through the report properly at the outcome meeting. You could push them to do that if you need the info for the statement.

Ineedmorepatience · 09/02/2013 16:24

We had to wait for feedback from the DISCO too, I suppose they have to collate all the information.

We were given verbal feedback first too and then a letter came a couple of weeks later with the written diagnosis.

Sorry you are still in limbo sweet but at least you are taking small steps.

When is your private appointment?

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