How did it feel when you got your child's dx?

[pinkchampagne]

Trying to prepare myself. DS has his ADOS test in a couple of weeks & have been told that we will have a definite answer at the end of it. I know that DS is probably AS & much as I have known this deep down for years & need the help for him, I am dreading hearing the words & having it all confirmed.
How did you cope when you got a definite dx for your child? How do I prepare myself?

Anyone?

Hi

My dd has a dx of AS. I think that I expected to feel relief at her dx, as it would open doors top get her the help she needed etc. And there was an element of relief that we finally had the 'answer' if you like.

However, I have to say that I still felt shocked and shaken, even though I was expecting it.
There was an element of my fears being confirmed and of sadness, for some reason. I think that it is only natural do go through a range of emotions - grief, sadness, relief, guilt, anticipation. Then I reached a stage of acceptance and the dx, to me, just became a name for all of the 'quirks' dd always had.

I don't think there's a lot you can do to prepare yourself, as the emotions don't really hit you until you get the dx.
The best advice I can give you is to see it as a positive thing -it will allow you to access the help your ds needs. And be kind to yourself; give yourself time to absorb it all.

Also, try to keep in mind that first and foremost, he is still your little boy and a label attached to a dx doesn't take that away. He may have some additional needs and 'eccentricities' but that's what makes him unique. And life will never be dull!
Good luck x

We have had a verbal dx of asd for DS back in april, the paed said "have you heard of asd?" she went on explaining the spectrum and said 'your DS has mild asd'.
She also gave us the NAS website adress for looking up some info.
Honestly i felt only slight worry, just because the word "autism" was preceding "spectrum disorder". I really didn't have a clue.
It hit me later that day, when i went onto the nas site and really understood she had said ds had mild autism.
I couldn't believe it! But the more i read the more i knew she was right, and i felt devastated, for the first 2 months i breathed asd and dreamed asd, night and day my mind was trying to figure it out and i was like a mad woman on a hunt for information about it, and how i could help my ds.
It's better now , but i still have bad days with crying (that helps) and despair, especially when i get a report that says 'obsessive and ritualistic behaviours' to describe my ds.

My stress levels are slowly rising again because we have th 2nd paed. appointment next wednesday to talk about getting ds assessed for a formal dx, which i 'm dreading!

I think time is the best "cure" for our sorrow, and trying to remember that our dc is still the same child to prior the dx.
Good luck.

That's the thing, I know it is a positive thing really & will help DS. I know DS isn't like other children his age & everyone else can see it too so it's not like I can deny there is a problem or hope it will just go away, but still I dread having to face up to the dx. I feel sick just thinking about it & have already started having dreams about it all. I dreamt I was in the hospital & being shown a video of autistic children & I was going round after to visit my nan (who died 2 years back) so my head is obviously feeling pretty disturbed right now.

Yes it is hard to get our head round it isn't it! I too have dreams in relation to ds'asd, it's also the first thing that comes to me when i wake up and the last on my mind before sleep.

I can sympathise totally with your feelings.
Sending you virtual hugs

I agree with mysonben, there is a phase of being totally obsessed with autism. I exhausted myself by reading everything I could get my hands on. I think that it's a natural phase.

There is a book I wished I had known about at the time of dx here's a link. It was a real comfort to me -it's written by a mum whose child has AS.
She has so much experience and wisdom -it's a reassuring read.

Thinking of you pinkchampagne. We've had a diagnosis recently too (AS) and I really was surprised at myself at how badly I took it.

It was on the cards and as you say, it will help. But it still shocked me and upset me. And I'm struggling with people's responses too.

I'm drinking more and eating more to cope! Thanks for link sibling. That looks interesting.

Thank you for sharing your experiences. I feel I am not coping as well as I should & that I have had plenty of time to get my head round it & accept DS is very different from other children his age I have a friend with a very independent, sensible NT child just two weeks older than DS who I have known since they were 2, and if I have heard the phrase "It is hard to believe there is just 2 weeks between them isn't it?" I have heard it a million times. She knows I am getting DS assessed & one day I may just snap!
Thank you also for the link to that book - it looks really interesting. I have just read all the reviews & tears have come to my eyes again. I didn't realise that smells are heightened for AS children. My DS will often make a fuss & put his top over his face as we walk into the swimming pool etc.

I also feel I can't talk about it to many people in RL atm. I know that I will just shut myself away when I get the dx & not want to discuss it with anyone.

The months before the dx had been such a dark night of the soul with me obsessively thinking about ASD, that I was very relieved when we got it in writing and it was time to move on.
Having said that, it's a sort of bereavement, so you absolutely must do what you feel like doing, or not doing, for the first few months, or until you're ready to move on.
There are a lot of people and organizations out there for support. You know when they say, it gets better? Well, it often does.

Your friend sounds very insensitive PC

Thank you. I am getting upset already because I know this test is going to confirm it all - I have been told I will get a definite answer, and my DS screams ASD. I know what they will tell me but don't feel ready to face up to it. I know it is for the best though & I know it will help DS, I just don't want to hear it.

pc - i could have written your posts pre dx i was a walking tap, i cried constantly. i have to say it took me about a year after dx to finally feel comfortable with the dx and accept that dd was still the same little girl. i did a lot of crying and had some dark days i won't lie but it did mean that we were able to receive more help and felt more official than the autistic traits dx we had for the years pre asd dx.
i didn't want it to be asd, i wanted it to be anything but. however the not knowing was worse looking back. we took years to get a dx for dd and it used to niggle me because we kept being told that dd wasn't on the spectrum when i knew she so obviously was!
your ds won't change but things around him will and hopefully things will start to look up. take care x

Thanks, BH. I feel the same, I don't want it to be asd, but I know it will be, I know it will. I was tearful in front of the boys the other night (evening after I got the letter about the appointment) & DS was saying "what's up mummy? Why are you crying?" This just made me worse! I hugged him & told him I was ok.
I keep thinking about the moment I have to hear the words I dread. I know it is better not to be in the dark anymore after all these years & it will help DS though. I have to keep reminding myself this.