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SN children

Have got date through for DS's ADOS test. Feeling anxious about it

15 replies

pinkchampagne · 03/08/2009 17:14

We have been going through the assessment process for over 2 years now & not yet got anywhere with DS (nearly 10 now)I know in my heart of hearts that DS is probably AS since he was around 3.5. He is very different to other children his age to the point that even people who know little about AS suspect he has it. He has social issues, obsessions, isn't independent like other children his age, comes out with off the wall statements constantly, can show me up in social situations, has had tics in the past & problems with loud noises, high anxiety levels, will hand flap, can still have tantrums etc. I struggle to know how to deal with him at times & need help but my stomach is twisting at the thought that in just a matter of weeks I could have to have it all confirmed to me.

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PeachyTheRiverParrettHarlot · 03/08/2009 17:21

PC

deep breaths now

All an ADOS test can do is clarify what you already know, it can't change your son or your relationship with him. Keep repeating that to yopurself.

A dx can be scary though and you should prepare for some emotional stuff if you get one. Don't schedule anything more than a drink or so after the event, and make sure you plan something nice and undemanding in the few days after. And be gentle on yourself.

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pinkchampagne · 03/08/2009 19:26

Thanks peachy, I know that but it is hard having to face up to it isn't it? Crying now which is silly. The letter was the first thing I came into after my holiday & I have been feeling all silly & down since.

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beverleyjayne · 03/08/2009 19:53

hi pinkchampagne

i know exactly what you are feeling ,my dd is 10 and has just done her ados test at the beginning of the summer. we have know for some time that everything wasnt right with her, but just put it down to quirks lol!! how wrong i was, and since january our dd has been extremely school phobic and not wanting to mix with anyone. she is also extremely anxious all the time and has just classic aspergers symptoms, and in hindsight always has . since 22.12.08 when the pead told us that he thought dd has either aspergers or ocd, our life has not been the same. i know to some that might sound very over the top, but i am constantly filled with dread as to whats ahead for dd. we have spent the last 6-7 months just waiting on appts with different people and our multi disciplinary when they will decide if dd has aspergers is set for 13th october! but before then we have the task of getting her back to school which will be horrendous for her and us all. i know that i have very down periods and people i talk to say that we are still very early into this process and still raw, so be prepared to cry lots, it does help.

take care and just take one day at a time

bev

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PeachyTheRiverParrettHarlot · 03/08/2009 19:58

Beverly I know it slunds tweee, but it does pss to some extent (at least IMNO) but slowly- takes over a year IME

why is it that a dx always comes at the wrong time (I note yours was Christmas Bev)- we ahd one in December last year also (though ds3 is more severe and in an SNU so we knew), DS1's was on my birthday a few years before and the letter confirming ds3's dx didn't get sent out until my birthday this year. Buggery.

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beverleyjayne · 03/08/2009 20:14

hi peachy,
tell me about it, xmas this year was a nightmare, the pead told me to go home and read up all i could on as and ocd , that was it just before santa!! and since then we have just ambled along thro each appt still not knowing as no one will commit themselves till the 13 october!! i have went from internet shopping , to just reading constantly on SN forums looking for someone that has gone thro what we are going thro and coming out the other side . i am hoping that when we get a dx that things will maybe start to make more sense and that dd will get the help and support that she so badly needs at school etc!

but it is really helpful to have friends on here that understand how this just turns your family life totally pearshaped.

bev

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pinkchampagne · 03/08/2009 20:21

It's tough isn't it? I never imagined the whole process would take so long. You would think I would be more prepared for the dx now but I am not, even though I know it will be positive. Just having it all confirmed will be upsetting. I know it is a positive step really but I just don't feel ready to face up to it. Am I making any sense?

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pinkchampagne · 03/08/2009 20:24

I live on my own with the boys & haven't been having a good day today. It helps to talk on here to people who understand.

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beverleyjayne · 03/08/2009 20:27

pinkchampagne

you could honestly be me!! you just sound like me except that you are able to put it down in words better than me. my only advice is to talk lots to whoever will listen, come on here and cry when you feel you need to.
and give yourself time to get used to the idea, i am still struggling .
bev

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PeachyTheRiverParrettHarlot · 03/08/2009 20:46

It took 4 yeras on and off ( a mix of denial and moving) to get ds1 diagnosed. After his DX I ended up in a great dark pit and didnt hal myself out for a year, in that year I missed all the signs that ds3 has autism and it wasn't until the school pulled me in that I realised. It hasn't taken me so long to claw my way out this time, but equally i'm not wholly there yet- I have dark days when I slip back in, and days when I convince myself it will all go away and try to chat about things like his job when he grows up.

After ds3's dx I remember being sat in the kitchen on the floor, leaning against the fridge, sobbing on and off for days. it's totally normal. I did ask my GP ffor anti-D's and he said no, it would be a concern if I wasn't reacting this way! But he did offer counselling (I couldnt take it up due to childcare) and that's worth asking for if it could help.

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5inthebed · 03/08/2009 21:14

Definitely agree with Peachy that you need to give yourself a good year to "adjust" to the DX and to actually see a way forward.

When DS2 had his ADOS, he was DX about 30 mins/1hour after and it was a hard time. In my head I envisaged him sitting in a corner rocking all by himself, when really, having a DX didn't change who is was. Having a DX actually helped us understand him a lot more, why was he having a tantrum about not wearing socks, why did he lick everything around him.

I hope the ADOS goes well for you, it's not as bad as what you think it will be. We just sat there while the professionals tried to stop DS2 trying to escape out of every exit

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pinkchampagne · 03/08/2009 21:49

My DS doesn't understand why he keeps having hospital appointments when there is nothing the matter with him, bless him. Have pead appt on Thursday & he doesn't want to go. He has asked if he can stay at home!

I wonder if I will ever get used to it all. Have been struggling to come to terms with DS's difficulties for years & it doesn't seem to be getting any easier.

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pinkchampagne · 03/08/2009 21:55

Can I ask, do any of your children come out with totally off the wall comments frequently or is this something unique to my DS? He will suddenly say something like "I wish it was April fools day", or one time I commented on DS2 running ahead & he said "that's not DS2 that's me!" Can't give examples of others as they are so random and off the wall that I don't tend to remember them!

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5inthebed · 03/08/2009 21:58

DS2 isn't the best of talkers, but lately he has been coming up to me, and out of the blue saying "I understand". Not entirely sure what he understands though

I think though that it is a bit of imaginite play on your ds's behlf when he says "that's not DS2 that's me!". SOrt of cheeky like. That is a good thing.

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pinkchampagne · 03/08/2009 22:03

I guess, but they are often totally unconnected to anything when he comes out with them. Also, you can ask him a normal everyday question & get a totally bizarre answer! Wondered if it was an AS thing or just something unique to my DS!

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pinkchampagne · 06/08/2009 14:50

Just got back from a pead appt & he said that I will get an answer one way or another on the day of the test. Test is 25th of this month & I am feeling so anxious about it. Took boys for a pub lunch after & DS1 had a total meltdown in the pub garden because there were a lot of wasps around. Everyone was looking at him.