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Original poster

DS has his ADOS test tomorrow & I am dreading it

69 replies

pinkchampagne · 24/08/2009 12:29

Have been trying not to think about it too much over the last few days as I got very upset a few weeks back when I received the appointment, but now it is tomorrow & I am dreading it. I have been told I will get a definite answer & I don't feel I am mentally ready for it - not sure I will ever be though. I know it is for the best, I know it may help him & these are positive things, but I am scared of the dx.

I am on my own with the boys & my parents are away on holiday. I am scared of how I will react if they tell me he has some kind of autism, which I suspect they will. Don't know how to prepare myself.

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Original poster
pinkchampagne · 25/08/2009 18:56

Thank you all, I am feeling slightly more with it now.

Wasn't in with DS during the test but was called in half an hour after to hear the results & then heard the word "autism", was all a bit of a blur after. I kept it together while they were talking to me & when I left the hospital, but was very quiet. I eventually told DP they said he was on the spectrum. I couldn't say the word autstic - how silly is that?

I kind of kept it together until his dad (who has wound me right up today) phoned to see how we got on & I just broke down & asked if he could pick up DS2 from my friend's. He said he couldn't as he was in another town visiting his new girlfriend & then joked about how funny I sounded as not only was I crying but I have a chest infection so am losing my voice. Said I couldn't talk & would contact him later but really don't feel like it. I feel like I don't want to talk talk to anyone right now.

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lou031205 · 25/08/2009 18:59

pinkchampagne take care x

Original poster
pinkchampagne · 25/08/2009 18:59

Bless my DS. He was sat in the back of DP's car when I broke down & was most concerned that I was upset. He kept saying "what's up with mummy? Why is she crying?" DP told him it was because I didn't feel well.
DP has been such a star today.

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debs40 · 25/08/2009 19:09

It must be a shock even if you were expecting it. Let yourself have time to adjust and don't worry about ds's dad - he can wait til another day. Glad dp has been such a support. I'm sure now this waiting is over, things will get easier. thinking of you xx

Barmymummy · 25/08/2009 19:14

Oh bless you PC, your DP sounds a total star. As the others have said, give yourself some time and let it all sink in a bit. Look after yourself and post when you need some moral support. Thinking of you...

5inthebed · 25/08/2009 19:40

Give yourself a few weeks for the DX to sink in. It will seem really hard going, but it does get better. Glad your DP is there for you.

Original poster
pinkchampagne · 25/08/2009 19:51

DP has been a real star. He doesn't have his own children & at one point in the middle of my little breakdown I said "you aren't going to leave me now I have a child with AS are you?" Totally silly but I wasn't in a good place at the time! He said "of course I won't leave you, I want to be with you forever & will help in anyway I can"
He has been such a rock to me.

Does it all get easier to deal with?

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Original poster
pinkchampagne · 25/08/2009 20:10

Bless Ds. when we got back in the car after the test he said "did I do good?"

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Original poster
pinkchampagne · 25/08/2009 20:29

The lady that did the test has given me her number & said for me to ring her sometime & she will come to see us at home. All too much to take in today but I will give her a ring in a few weeks.

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5inthebed · 25/08/2009 20:40

That was lovely of your DP PC. He sounds like a good bloke. Can't believe his dad didn't try to go, or even to visit after the DX.

It does get better, really it does. Its sort of a mourning feeling. You've lost the child you thought you had, and gained another. Your DS hasn't changed, he is still the same little boy. But now you know why he behaves the way he does, why his behaviour is different to other children. It will get better because you will get help with these little things.

Give yourself a few days, and then call the lady who done the test. Did she give you any leaflets/books?

daisy5678 · 25/08/2009 20:51

5inthebed said it beautifully. He is still your boy - this dx is just a key to unlocking him more and also to the services that will help.

It takes some time and you will find your own way of dealing with it, but do look after yourself while it all feels raw.

Original poster
pinkchampagne · 25/08/2009 20:52

No she didn't but I read one in the hospital while waiting - kind of made me feel even more wobbly at the time.

just found enough coke to pour myself a large bacardi! I am like a tap tonight. I calm myself down & then I am in tears again.

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5inthebed · 25/08/2009 21:03

We were shoved this great big book after DS2 was dx, with loads of numbers, helplines, websites but half of them were either changed or closed down. Very helpful lol.

How old is your DS again?

Original poster
pinkchampagne · 25/08/2009 21:04

I keep reminding myself of the fact that nothing has changed about DS & it isn't like I wasn't expecting it, but it is the having it all confirmed that is hard isn't it?

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Original poster
pinkchampagne · 25/08/2009 21:05

Oh no, 5ITB, that was a bit useless then!
My DS is nearly 10 so it has been a long time coming. Think lots was put down to our family situation until quite recently. How old was your DS when you got a dx?

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brokenspacebar · 25/08/2009 21:16

Pinkc, I am glad your dp was there for you, your ds sounds really lovely. I am thinking of you.

5inthebed · 25/08/2009 21:17

Ds2 was 2.6 when he was dx. Very young so I am told. Last year was one hell of a year!

Does your DS go to MS school then?

Original poster
pinkchampagne · 25/08/2009 21:22

Yes he does but he struggles at school. He is school action + & has been since reception. He has to be kept on at all the time as his concentration is so poor & he struggles to socialise. He is behind with his school work & doesn't like school.

BSB - thanks.

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5inthebed · 25/08/2009 21:31

Well now that he has been DX, you might be able to get him statemented and get him some 1:1

It's obviously early days, so don't worry about it just yet. It's still the school hols after all

Original poster
pinkchampagne · 25/08/2009 21:39

Yes they did mention a statement. didn't take it all in today though, was just trying not to break down in the room.

Ex h has now phoned from a pub so I told him what happened. Still feeling cross with him.

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WetAugust · 25/08/2009 22:29

Hi PinkC

You probably quite understandly don't see it this way right now but the dx is a very real bonus.

You can tell school etc that he's not being difficult / awkward / unsociable - he does have a neurobiological condition which causes his difficulties and they need to take that into account in their dealings with him from now on.

As he's on School Action+ and still struggling it should be time to request a Statement for him. School won't necessarily do that and may even discourage you from doing so - but he is only 10 and could get many years of valuable support if he were to be issued with a Statement.

I appreciate that you have enough to take in right now but now's the time to request a Statement - before he transfers to secondary school.

Best wishes

brokenspacebar · 25/08/2009 22:30

I think you have been amazingly calm with your ex!

I hope the school will be more helpful now too. Have you applied for dla? (sorry if that is too much for you to think about, but even as something to keep in mind... )

My ds hasn't got a dx yet, but we have been very lucky with support - I really hope it will have positive benefits for you and your ds... I know when ds has his ados I will feel pretty much as you do - we have an appointment for January, I think... must go and look at his folder.

paranoid2 · 25/08/2009 22:36

sorry you didnt get the news you wanted but I imagine in a while you will feel relief that the waiting is over and you know whats been causing ds' problems and can focus on getting him the help he needs.

Your Dp sounds like a real trouper and if you dont mind me saying Ds's Dad doesnt sound very supportive at all. I wouldnt worry about him for the moment, just focus on your new family unit. If DS's dad cant cope with the diagnosis or just isnt interested thats his problem. You are the one that made the choice to face the assessment head on because you knew you had to. You had to face hearing the bare facts and he escaped. Dont worry about him or anyone else for now.

Original poster
pinkchampagne · 25/08/2009 23:21

I will look into getting him a statement etc. What is dla? Sorry, I am not very with it here!

Ex H just didn't seem to take all this very seriously. I text today & told him that I was waiting to hear & was feeling anxious & he just text back with the words "calm down!"
Then to shoot straight to his girlfriend's so he wasn't available to help out after I got the news, just made me see red.

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Original poster
pinkchampagne · 26/08/2009 07:47

Didn't sleep at all well & when I did I was dreaming about this. Had to mail my parents who are on a cruise & give them the news. I already knew this all in my heart of hearts & if they had not found anything I would be still looking at him & thinking they had missed something, so I shouldn't be shocked at all...but it really is the confirmation that is hard to deal with. I can't now look at him during a good moment & think "oh maybe there is actually nothing wrong", because I now know there is.

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