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We have our diagnosis! So why don't I feel better?

(8 Posts)
TwistyBraStrap Tue 23-Oct-12 21:55:38

After a long 2 and a half year road, DS was diagnosed with ASD today. We knew it was coming, we've been pushing it for a long time, but I just feel so empty.

We're currently arguing with the LEA about his school (we've just moved to the area, DS is 5 and they think he should be in mainstream, we know he won't cope) so the dx helps. I've written a letter so we should have him in a special school soon. I've joined the national autistic society. I've looked at all the links they gave me. But I don't know what to do!

How do I get my head round this? I'm relieved in a way because it wasn't my bad parenting, he had ASD all along. Yet I'm still sat here wondering what I could have done differently. If I should have been able to cope better. All the times I shouted at him and he couldn't help it.

I feel like the dx should have changed my way of thinking - I believed that when we got it doors would be opened and we'd get lots of help. All I'm really feeling is that this is the start of a longer, harder road.

If anyone can understand my babble, well done. Does it get any easier?

MrsShrek3 Tue 23-Oct-12 21:59:14

no you couldn't have changed anything.
By the time we get the dx we know what we're dealing with. yet the dx still makes you sit back and wonder at it all, no matter how old the dc, how long you have suspected/known/resigned yourself. Weird, innit. You're not alone smile
yes, it gets easier in some ways. you get to know what to expect and more importantly what you want for him.

MrsShrek3 Tue 23-Oct-12 22:01:51

PS fwiw the dx doesn't bestow knowledge on you...it just makes you think you oughta know wink but don't grin but hey!!
I'd worked as an asd specialist - so had dh - for well over fifteen years before we had ds1's dx. so even worse, we thought we really should know what to do. But we didn't grin just sayin'.

EllenJaneisstillnotmyname Tue 23-Oct-12 22:10:17

I think you have to get through the grief of having your last secret hope dashed that everything is going to be all right. sad But it will get better and you will eventually stop grieving for the child you thought you should have had. My DS was DXed 9 years ago and I still wish for a 'normal' life sometimes, but I can no l

EllenJaneisstillnotmyname Tue 23-Oct-12 22:11:26

Oops. No longer imagine him any other way.

TwistyBraStrap Tue 23-Oct-12 22:20:57

Yes, I did have a teeny secret hope that with a bit of help here and there he'd be "cured". I never told anyone that though.

He's a happy little boy and I'm so proud of him. I just want to make everything easier for him - let me do all the battles now so he never has to. It's only just dawned on me that he may have to fight for other things later in his life sad

MrsShrek3 Tue 23-Oct-12 22:25:39

I think that's a huge scary fence that we don't have to jump yet. fwiw my ds1 has asd and has made the most awesomely successful transition to high school this september, and loving every minute of it. Only now are we looking at learning support for him - and that for his literacy rather than anything social iyswim. The only thing I've learned is that it's not wise to look toooooo far ahead. It's scary, and unnecessary but we can't stop doing it a bit

EllenJaneisstillnotmyname Wed 24-Oct-12 12:55:17

Yes, I agree with MrsShrek. Never look too far ahead, the next big milestone is far enough. Also, you can get so tied up worrying about the long term that you miss the good things and the small steps of progress that he'll be making at the moment. smile

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