How long did it take for your pain to go away re your dc'sn? (long...)

[mysonben]

I know this is a silly question to ask as i know deep down a lilttle bit of my heart will always cry.
It has been over 2 years since that first awful niggling feeling that maybe something wasn't quite right with DS.
It has taken all this time to finally hear the name of DS'problems. "ASD" as we were told by paed. back on the 15th of april.
So it's been 6 months and it still hurts.
The first two/three months were awful, i thought i was going bonkers, kept crying, didn't sleep well, i was obsessed with trying to find info , anything that would tell me for sure that DS did or preferably didn't have asd. I couldn't stand it and i was frantic looking for? answers? ...i'm not sure what i was looking for exactly. All i know is i dreamed, lived and breathed asd.
Then as weeks went by the more i was accepting it, the easier it became, less tears, more understanding, less panic.

But each and every time we get a report and i read "ritualistic and obsessive behaviours" or "autistic features" to describe my DS i fall apart again.
The big crunch was the GARS.2 test on wednesday, and when we heard "he scores 124 , that's a 95 % likelyhood it's asd."
My heart broke again. Why? It's not like it 's new by now , but it still hurts when i sit and start to think about DS , his present and future difficluties, it all get too much and i just start to cry again.
Am i just an over sensitive weakling? or do you feel the same too sometimes?

And ds1 who is 16 y, and nt, really cried today (i heard him weeping in his room and thought his girlfriend had broke with him!).
When he did agree to speak to me, he told me he was upset because his little bro has asd.
And it's hard and unfair!
DS1 is worried that Ben will be like C when he is older and it makes him sad (C has HFA and is in ds1's class), and people will think he is just so weird. Because that's how DS1 thought of C before he knew he had HFA.
... (ds1 does like C btw, but he can't accept that his brother will be facing similar difficulties when he gets older)
It's complicated! I tried my best to cheer him up , and explain that HFA isn't the end of the world, and that DS2 will not be exactly like C as he is his own unique self just as anyone else.

Sorry for such a long post, had to get it out...

mysonben I don't know the answer.

Ohh MSB you poor thing. We spend so long trying to get people to see what we see but when they do, it can be very hurtful to see the reality.

You are completely right to say that DS is his own unique self and children will get their outlook from us initially so you also do right to stay positive about it.

I have no easy answers. I just know that, for me, throwing everything into getting the best services for my son will make me focus on doing something constructive. Just planning and investigation, researching and arguing the toss about support and provision, although stressful, makes me feel a bit more like I'm in control.

You are not alone though.... you have us!

I have 5 children,2 of which have disabilities,1 is quad CP the other ASD and Dyspraxia.
You're definately not an over sensitive weakling,'cos if you are then that definately makes me one too lol
My daughter will be 12 in December and my son will be 8 very in November so i've had 12 years and 8 years to accept my childrens disabilities. Ofcourse i've accepted them but it doesn't mean i don't still get days when i feel totally heart broken about some of the things that come with loving and caring for them.
Someone said to me a little while ago when i was upset that 'it's been almost 12 years now' surely you're used to stuff like this (was upset over an assesment).
As time has gone on though things have got more difficult,i've seen my daughter go from a 'normal' pushchair into a wheelchair. The tantrums that my son has drew less of peoples attention when we were out and he was only 3 than they do at 7 !
My other children have become aware of their siblings conditions too.
I just replied really because i don't think you're alone (not that it makes it much easier). Take care, Jo xx

Thank you.
I'm so glad i can come here on this board and and be able to share good and happy news about DS, and sad sorry posts when it all feels too much.

I'm doing good most days and i like you say Debs, it helps to focus on trying to push for things to happen, things we can do to help our dc.

Just had a bad day , with ds1 criyng like this.
I hadn't realised he was so upset all this time, he seemed your happy go lucky teen and had never shown before how bad he felt.

Yes, it is hard at times.
Like this morning was chatting with a colleage whose gran dd is 7 and AS. Was talking about Bibic,...
There were 2 other colleagues sitting at table next to us, and i heard one say" I'm so lucky me with my children..." as we were leaving.
I wanted to turn around and say "i'm lucky too! My ds is lovely and i wouldn't change him for anyone else" and that's true.
DS has asd, and his asd makes him who he is, well a part of him. Without it he'd be a different child, and i don't need a different child, i'm happy with DS as long as he's happy.

Thanks for tip about Carers'support BBM.
Will be watching how ds1 copes with it all a bit more now, as i've woken up to the fact that he isn't all hard teen, and is indeed affected with ds2's problems.

Affected 'by' ds2'problems... not 'with'!

dd was dx just last month, i found this and it helped me, maybe its just me but i liked it, printed it and stuck it on the fridge with a picture of dd- makes me smile

Autism is not something that I have, it is something that I am.
Autism is in every emotion I experience, in every thought i
think....Everything!
Autism is not a cage, with me the prisoner. you cannot talk about
a person 'emerging' from autism.
If it were possible to remove autism from a person, you would get
a different person. A person who perhaps fits in better with her
surroundings. Maybe a person who abides by the rules of society more.
A person who does not stick out. That person will look identical to
the previous one, but will be a different person nonetheless.

Thanks, MOF3M, it's nicely written and it's true.

Having ASD isn't necessarity bad for the child. Many children with ASD are happy and enjoy life and are not bothered by being different (often because they either do not realise or (in the case of many Aspies) do not care). It's importnat I think not to impose NT values on them. You can maybe think "but they have such a dull life colecting matchsticks all day" but if they really love doing this then I think "fine - never underestimate the value of an all absorbing hobby" . I'm not saying that life with ASD is all roses, it is not - but then many of my NT friends are on happy pills and I think that being at the other end of teh spectrum (ie very socially dependant) can be worse.

I think i might get that printed on a t-shirt for all my doubting in-laws and out-laws

I remember you in April mysonben. You have come so far, and you have kept your DH on board as well which is just terrific.

I strongly suspect that the biggest difference between my brother (would benefit from an ASD dx) and my son(doesn't need one) is the people around them, particularly the fact that my son is blessed with an older brother who is his guide. Perhaps your older son can start to feel tuned in enough to help DS2 with your help.

The other thing I want to say is about the language of those reports. I think it is destructive language which can be traced through history to a time when difference was feared and demonised. Therefore when you inwardly rebel against it, this is not necessary a problem with you but with it and with the medical deficit-based model of ASD. Note how rarely Greenspan uses these demonising terms, and how, when he does describe problems he links them to human feelings of the child.

Funny, that poem does nothing for me - I do see DS2 as emerging from his problems - not sure what we will see when he's emerged! - yet that doesn't stop my sense him as part of a community with many children dx'd with ASD. Just goes to show how different all our kids are from each other and how different we are too!

I've been following your posts, mysonben, and I think you're doing so well getting all the assessments done and working to have everything put in place: you're just amazing, he's lucky to have a mum like you

my experience of a very different SN is that it does carry on hurting but it doesn't hurt all the time; though it does surface every time you have to do one of those ghastly assessment things: dd's school appeal was one, the DLA form was another (though I chickened out and never sent that one off); in between, it does get easier to accept

it's like flashbacks, and you feel that you're back in your darkest hour again- but the feeling does pass

my silliest moment of despair was a year or two ago, on top of a bus watching a group of teenage girls weaving their way drunkenly across the Itchen bridge and it suddenly hit me "that will never be my dd" (as if this was really the sum total of my ambitions for dd )- but at the time it really hurt

Gosh you are in early days. Give it some time. My son was dxed when he was just 3. He is 10 now and has no speech so my biggest fear came true. I think I came to terms with it about a year or 18 months ago - mainly when I realised he could have a bloody good life anyway.
I have posted this before, but this video was my sort of coming to terms with it all video.

I think it does hurt less as time goes on. After we had had a particularly bleak 6mths (school/statement stuff) ds' new headteacher told me not to lose sight of the positives; the fact that he is a lovely little boy, loves his brother and sister, good at art, good at computing. It made me check myself and realise that with all the statement stuff (strongly agree that the language of reports is destructive) I was starting to see ds as just one huge problem rather than my little boy.

SaintlydameMRST, it is a beautiful video. And your son is a handsome boy.

Ladies thank you for all your kind words. It really helps on a grey day.

Truthfully it's almost twelve years since ds's autism diagnosis and almost five since dd's and the pain never fully goes away.
It's liveable with though but every now and again it rears its head and I still cry.
It's usually small incidents that set it off when I realise that it's for life and the enormity of the situation just gets me.
I do allow my self a little wallow and then get back on task it's how I cope.

gosh 6 months is still incredibly raw, mysonben

I wasn't posting on here or working through my feelings in any constructive manner within 6 months of diagnosis. I was too busy cracking up; having awful anxiety attacks and doing stuff like trying to squeeze under a car seat so nobody could see me through the window

things are much better now

I have known since my son was 2 there was something amiss he is now 15 and it still breaks my heart at times because I think to myself of all the things he should be doing and won't, silly things like taking him for his first drink going out to the cinema or doing things that we know they do but shouldn't.my husband finally broke down this summer he had never talked properly about it, in fact we both had a good cry. were all human its only natural to be hurting.

Riven that really puts it all in perspective really.

My brother has cerebral palsy which occured after a seemingly straight forward childhood illness before I was born. My parents never got over it. I think they blamed themselves. They are both dead now but it's fair to say it ruined them

That's why talking about these things and getting worries out into the open to be dealt with is so important.

It's all about loss really isn't?

I have done the 'big grieve' however, every now and then it bites me on the bum and I honestly feel my heart break just a wee bit but I bounce back more quickly. I still feel a bit guilty about this - that I should have myself sorted by now but I expect that those moments will come and go the rest of my life regarding DS2 and I think that's ok x

Starlight - I think that is the same for those with children with physical disabilities too as things like CP can include learning disabilities which are also 'unseen' and discovered as the child develops. I also think that prognosis on these types of disabilities is far from permanent and fixed and parents can be left feeling equally bewildered.

I think with ASD is a very bewildering but different type of experience.Particularly at the high functioning end. The problems can be well known to the family and those who know the child but you have a child who 'looks normal' and is judged by those standards when their disabilities are often hidden, subtle and debilitating in other ways