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DD has her test for Asperger's tomorrow........

(52 Posts)
siblingrivalry Sun 10-Aug-08 17:14:27

.....and I'm scared I might start crying or totally 'lose it' with the doctor.

The last few days have been complete hell. DD1 has had numerous tantrums and crying fits, has been totally demanding and generally awful to be around. sad

I feel totally crap whinging like this, when I know that lots of MNers have dc with much more severe needs -I really don't want to come across as tactless.
Just don't know where else to turn. Nobody I know in RL has a clue how emotionally and mentally draining she is at the moment.Most importantly, though, I am worried sick about her and how she must be feeling.

Her tantrums are starting to become more frequent in public, too - four in the last 3 days; usually over telling her it's time to go home/she has to share her DS game;etc.

I have a feeling we won't get a dx tomorrow -the doctor said last time that her social skills were 'too good'. Of course, I'm not wishing a dx onto her, but I'm terrified of coming away with the doctor claiming it's anxiery-related. Where does that leave DD;my instincts tell me it runs far deeper than that.

That's why I'm scared of my reaction. I already feel at the end of my tether and it won't help dd if lose control. I've never been confrontational or very assertive, but I feel like an elastic band that's about to snap.

Sorry for the rant and thanks for letting me get it off my chest.xx smile

sarah293 Sun 10-Aug-08 17:42:26

Message withdrawn

Tclanger Sun 10-Aug-08 18:01:33

Message withdrawn at poster's request.

bullet123 Sun 10-Aug-08 18:26:53

There's the ADOS, though, that might be the test.
If you disagree with your dd's social skills being too good, then see if you can provide any examples to show otherwise. Eg does your dd:
Have difficulty inititating talking
Stand too close to people
Refuse to make eye contact
Divert conversations to her favourite topic frequently
Dominate conversations with her favourite topic
Provide too much or too little detail about something
Refuses or seems unable to acknowledge others point of view (though this might be typical of her age)
Starts talking about things without placing them in context.

magso Sun 10-Aug-08 18:37:22

Good luck holding it together. I find writing things down can be helpful as my brain deserts me under stress and it can be helpful to concentrate on concrete words!!

misscutandstick Sun 10-Aug-08 18:53:39

i have no advice, but i wanted to wish you good luck {{{HUGS}}}

bullet123 Sun 10-Aug-08 18:55:27

Should say that not all of my examples are to be expected.

bubblagirl Sun 10-Aug-08 19:03:09

i wanted to say good luck my ds was diagnosed with HFA about 3 mths ago and i did cry but with relief mainly so we had an answer to fianlly be able to help him

and now things are much better as we understand him better it is still very rollercoaster with emotions so i wish you luck and if you need to talk you know where we are it has been such a huge help for me on here and cant thank all those who have helped me enough xx

twocutedarlings Sun 10-Aug-08 19:10:41

siblingrivalry ((((hugs)))) im sure you will be just fine smile let us know how you get on.

bullet i have to say you have pretty much summed up my DDs social skills grin.

bonkerz Sun 10-Aug-08 19:11:10

You know your DD better than anyone.
As you know i have been fighting now for 2 years to get my DS diagnosed and i am still waiting for the final DX. 2 years ago a GP told me DS was normal, i pushed and got him referred to a peadiatrician who said he thought it might be ADHD, referred onto CAMHS who said it was anxiety issues, I complained to CAHMS who then said DS had ODD, I have pushed and pushed and had to fight for the ADOS test and am so pleased i did because although we dont have a DX yet the doc has referred DS for OT, SALT and Psych help! None of this would have happened if i had not have pushed. Dont be fobbed off. The ADOS test is not even run in my county BUT they have managed to borrow the kit from another county and have called in someone who is trained to carry out the test so it can be done!

siblingrivalry Sun 10-Aug-08 19:43:29

Wow, thanks everyone; just logged on again and I am overwhelmed with all of the support!

Riven, I think it is the ADOS test bullet mentioned that dd is having, although I doubt it will be definitivehmm.
My dd is 7 and you are totally right in saying they morph into a NT - her behaviour at the last CAMHS meeting was better than it had been in months! Eveb her eye contact was half-decent.

Bullet -apart from standing too close to people, you have also summed up my DD! I tried to explain these things last time at CAMHS, but the doc always had a 'reason' ready. I have been starting to doubt myself. Her lack of empathy is becomong more evident too, even towards me (apart from her ds, I was the only person she really had empathy for)sad

To everyone else, I am so grateful for your good wishes and encouragement. I will write down my questions and be a PITA if I have to be! Without MN, I don't think I would have realised how important it is to keep pushing forward. {hugs}
I hope all of your dc are well.

Both dds in bed now - only 2 tantrums at bathtime grin. DD1 didn't want her nails cut and DD2 age 3 didn't want her hair washed. Am sending dh to shop now for chocolate supplies.wink
I feel much better now.

mm22bys Sun 10-Aug-08 19:56:15

Good luck SR - let us know how you get on.

siblingrivalry Sun 10-Aug-08 20:53:48

Thanks,mm2, will do. Nerves are starting to set in now.

Seuss Sun 10-Aug-08 21:05:54

Good luck!

bonkerz Mon 11-Aug-08 09:11:50

goodluck!

bonkerz Mon 11-Aug-08 16:13:14

how did it go?

bubblagirl Mon 11-Aug-08 16:31:33

hope your ok and all went ok? x

siblingrivalry Mon 11-Aug-08 20:17:01

Hi, thanks bonkerz and bubblagirl, for your kind enquiriessmile

Today was the first part of the ADOS 'test' - the interview/questionnaire type thing. The doc also observed and spoke to dd.We still have to do the two-way mirror observations.

Rather than AS, the doc thinks dd has characteristics of ASD. She wants to do the next part of it, then discuss the best course of action. It will probably be a case of dd being seen by OT;paediatrician etc.

In her opinion, though, we are dealing with ASD.
I think I was shocked, even though I was half-expecting it. I have spent 7.5 years rationalising her behaviour so much that I started to think I was making it up.

DH was unexpectedly fab at the appointment and had really valuable input, which is very rare (we think he has AS traits, so doesn't often contribute in these situations.)

DD was sent to another room at the end so we could talk to the doctor in private. When we all went in to see her, she had 'sorted' the toys into groups and was hand-flapping.hmm
Cue doc sribbling furiously in notepad!

Thanks again for all of your help and advice, everyone. I am finding MN to be a lifeline.

mm22bys Tue 12-Aug-08 10:01:27

Hope she can get the help she needs without too much of a struggle.

I hate the two way mirror thing. DS2 had it when he was assessed, except they didn't tell us we were being observed that way till the end of the second day.. Charming.

All the best,

bubblagirl Tue 12-Aug-08 13:59:44

i hope with the outcome you can learn and understand her behaviour more i found with ds nothing changed per say in his behaviour but i felt now i could relax and understand him rathger than why cant or aren't you like other children your age and stressing about it

i still have them days but now as im aware of his way of thinking my days are calmer as i now know how to work around certain situations in a way he will understand

i also hope proffessionals will help you alot more too and be supportive i have found im having to fight for alot of help but on here is great and supportive a godsend for me

xx

amber32002 Tue 12-Aug-08 14:12:50

As Tony Attwood would say, "Congratulations, it's an ASD!".

Personally, I'd say for "Congratulations, you have a specialist!" And thank goodness for chocolate and mumsnet so you can have a rant/cry/sob/feel numb/all of those.

siblingrivalry Tue 12-Aug-08 18:03:36

Bubblagirl IKWYM. I feel as though I have been trying to fit dd (a square peg) into a round hole.Oh the guilt!
I feel a bit wierd today tbh. I keep thinking that somewhere along the line, someone will disagree with dds dx and we will be back where we started.

I took her out on her own today (to an open air museum) and it was lovely. smile She was totally calm and I was beginning to think I was imagining the ASD. Then she started stressing and noticing the 'damage' to various artifacts. The fact that they were over 100 years old did nothing to appease her!
When we left she asked if she could run around and she hand flapped and talked /hummed to herself for 20 minutes. At least it gave the people in the carpark something to look atgrin.

I would love to know if anyone else felt this way at the beginning of the dx process.

In a wierd way, I am worried that dd will behave really 'normally' during the two-way mirror test and they will say they were wrong about ASD. It's not that I want her to have it, but a dx opens doors for her IYKWIM. That's just not how it should be.

Marne Tue 12-Aug-08 21:15:36

Just thought i would say hi, dd1 is in the final stages of being assesed for AS, she shows some traits but not all of them, she is good at socialising but has poor eye contact, likes routine etc..
Dd2 is being assesed for ASD ,she's only 2.5 but already shows alot of ASD traits and is non-verbal.
I have spend alot of time crying after dd1's apointments, each time we see someone it feels like a kick in the face as Dd2 is showing more and more signs of ASD such as hand flapping, holding her ears and no comunication skills.

Dd 1 has improoved over the past years and starts school in september, i just prey that dd2 will do the same.

Fingers crossed for you and your dd

siblingrivalry Tue 12-Aug-08 21:52:10

Hi Marne,

How old is your dd1?

I can't imagine how hard it is for you to go through the assessment process with both dds at the same time. I also have another dd age 3.10. She is very 'challenging' in a different way to dd1.hmm

My dd1 also covered her ears and hand flapped at 2.5 (still does) but she has improved a lot over the years.

It would be nice to hear how you get on; I'm finding that my RL friends don't know what to say.

Take care smile

Mamax4 Tue 12-Aug-08 22:54:06

Siblingrivalry, I could have written your post- it took me years to get the dx for my ds bc I kept rationalizing it and kept being told that I was imagining things. I took him in when he was 5 and was told I was imagining things. I took him in when he was 8 and was told that all of his problems- a bouquet of ASD issues- were "unrelated". He was 9 by the time he was given the ADOS, because I went in with a list of behaviours that could not have been explained in any other way. I'd say that it is better to have a dx than not- if anything you may be entitled to services that your dd obviously needs. I'd also say that you may want to get out a camcorder and videotape her behaviours, such as her running around the carpark and flapping hands. If you are refused the dx, you'd have some evidence of their being wrong.. something to go on later. And start looking into ABA (Applied Behavioral Analysis) which is a great method of helping kids on the spectrum. I just had a 2-week intensive ABA training with my now 10yo ds and things are amazingly better.

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