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what a very odd feeling

(12 Posts)
thriftychic Wed 07-Nov-12 22:58:07

been given a diagnosis today for ds2 13 years old , Aspergers . have spent the last 2 years going on to camhs MH workers about ds2 meltdowns , lying, stealing , selfish behaviour mixed with threats of suicide.
he had an ados test 18 months ago and the results / letter said he scored low on it.

about a month ago we finally got an appointment with the psych who i wanted him to see all along but got fobbed off ( at camhs still) and after 1 appointment with ds2 , 1 appointment with myself and dp and 1 appointment with school he is sure its aspergers at the root.
he also said the previous ados had been borderline , makes me wonder why we were told he had scored low ??

i have always had a terrible mistrust of doctors and my fear is that he is wrong . i know i am probably being daft and dp has accepted it wholeheartedly and doesnt want to hear my doubts

i have prayed for answers for 2 years , i need to have faith !
i feel all odd

Handywoman Wed 07-Nov-12 23:42:24

I guess it is a double-edged sword ending up with a dx even though you've been seeking an answer all this time. Even when you have been sure of the problems. And especially when you have had to encounter rubbishness/fobbing off along the way (as is sadly so typical).

I guess you gotta be kind to yourself, and let it sink for a while? It is probably a shock just arriving at the 'end' of a line? Give yourself time to adjust.

Hugs and hooray for all your efforts.
x x x x x x x x x x x x x x x x x x x

Triggles Thu 08-Nov-12 07:30:09

At this point, I wouldn't worry about the previous "low" test. The thing is... you got him in to the psych you wanted to see, he's confident enough (based on testing and discussion) to give you a diagnosis... now you need to allow yourself a bit of time to come to terms with it.

Regardless of how long it takes to get the diagnosis, even when it's expected, it's still a shock. I think we all go through a brief denial/"maybe they're wrong" stage, followed by a bit of grief (as it ultimately means the issues we have been dealing with are not going to just go away overnight and will most likely affect major life decisions in future), and then a bit of bewilderment as the system basically says "here's your diagnosis" and then leaves you to it. hmm

Give it a bit of time to settle in.

Triggles Thu 08-Nov-12 07:30:55

wooo...loads of "a bit of" in there.. a bit of an apology for that grin

thriftychic Thu 08-Nov-12 09:51:33

grin at the 'a bit ofs'

i wanted an answer really badly its been torture not knowing ever since a teacher who had known ds2 for about 2 months ( transition to high school ) suggested he might have aspergers .

He was the only one , the primary school never had concerns and the next high school i moved him to didnt really think that either.

his main issue has been meltdowns and a total refusal to be told no which really just looks like bad parenting or spoilt child , although it started with suicidal talk and desperation at not being able to cope with going to the high school.

How did i not see it till age 11 ? i feel like he wasnt any different to any other child until about age 8. seemed to occur after a head injury and ive always wondered if it was that !

do the psychs get it wrong ? has anyone been diagnosed aspergers and it isnt that ?

it explains why he repeatedly does things despite any consequences and why he would tell his form group that his mum was dead shock , stuff like that...

thriftychic Thu 08-Nov-12 10:02:40

i did wonder whther he had scored low on the ADOS and they are now saying it was borderline because a different doctor has now disgnosed ds2 , you know so it doesnt look like a crock of sh*t test or something
am i making sense ?

Triggles Thu 08-Nov-12 11:01:18

it's probably a simple matter of interpretation by two different doctors.

I see what you mean, but perhaps the first doctor saw it was close, but low, and chose to say "low" whereas the other doctor felt it was low, but close enough to say "borderline"... could be a simple choice of words as well.

You'll drive yourself crazy if you overthink it.

If you feel the head injury had an impact (oh, sorry, didn't mean to make a joke on that, but grin), then just mention it in that context to the doctor.

coff33pot Thu 08-Nov-12 11:40:15

for a while you will replay 2 yrs worth of meetings, agreements and disagreements.

he is still your ds and once you have time to let the finality sink in the next question will be what strategies are you going to try to help with confidence and behaviour etc.

look at it this way. With or without DX your lovely boy needed support of some kind and you did good in noticing and aiming to get it x

give yourself a bit of breathing space to get used to it as you are at the end of a 2 yr battle and it now moves on to your sons future battles and how to best help him x

thriftychic Thu 08-Nov-12 12:01:49

thankyou for the wise words , i have just phoned school to ask that they dont say anything to ds2 yet as i am not telling him until i have got my own head around it and learnt what i need to . we have neen invited to go on a half day workshop and given a pack of information.

Lougle Thu 08-Nov-12 12:08:33

You will be in shock for a while.

I spent from the time my DD1 was 8 months old until she was 2 years 9 months old, so 2 years, but most of her life, saying 'there's something not quite right here'. I spent that 2 years being told I was neurotic.

At 2.9 she was flagged as having SN by preschool and given 1:1.
At 2.10 she was at hospital, having fallen over for no reason, and diagnosed with global developmental delays.
At 3.0 she was diagnosed with Epilepsy.
At 3.4 she was diagnosed with a brain malformation.
At 4.0 she was Statemented
At 4.9 she started Special School.

Now, she's 6.11 and I still have days where I wonder if I've made it all up grin

thriftychic Thu 08-Nov-12 13:06:24

my ds2 also has epilepsy lougle.

i suspect my eldest ds1 also has aspergers ( the doctor agreed) , in fact he ticks the boxes much more than ds2 but it doesnt affect him negatively , hes 17 now and whilst he is unusual , he is happy and achieves alot due to his super high intelligence . he has always been happy to do his own thing and only recently bothered to have any friends.

i wonder if i didnt notice ds2 sooner because its all ive ever known !

Handywoman Thu 08-Nov-12 16:43:21

I have had my suspicions since about 15 months that something was 'not right' with my dd2, she was a terrible sleeper, and just didn't seem to be bothered about what you were saying, or doing to try and get her attention. She never pointed. Or wanted to 'bake cakes' Or anything, except when her sister was doing it in which case she would copy visually and join in. But yet seemed smiley and sociable at the same time and would laugh readily at visual jokes. Needed to be physically extremely close to me. Her imagintive play was limited to very tiny snippets of play sequences e.g. 'going to bed' (it still is). Has never played with dolls except to join in with her sister. She has been sensitive to sudden loud noises that do not bother other children, she would cover her ears.

Aged 3;0 to 3;6 zero language development, poor eye contact
Aged 4;1 diagnosis of severe language delay followed by intensive weekly private SaLT
Aged 4;11 referral for ASD assessment, much improved language and fab reception teacher, starting to read, happy days, locum Registrar said no problems, making better eye contact but still needing reminders
Aged 5 discharged from SaLT with massive catchup in language
Aged 6 wasted year 'drifting' in class, minimal progress. Massive tantrums ongoing, referred back to Comm Paed at my insistence for problems with ?ADHD as needing prompting +++ to focus and 'do any work' at school
Aged 7 seen by Comm Paed Consultant, referred again for ASD assessment
Aged 7 SaLT re-assessment. Language skills above average apart from non literal and conversational skills on 1st centile for age. Struggling with friendships and reading comprehension
Still waiting for ASD assessment, with that knotted feeling in my tummy. I don't even know why I posted all that. Except maybe to illustrate the depressing, dragging-on-ness of it all.
:-(( sadface

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