Hi sjenner77
I totally, totally understand how you feel.
DS (4) was dx on Thursday.
I knew he was ' different' from the time he was about 2 wks old and have 'known' he has AS since he was about 18 mths/2yrs.
I have been begging for help with him for the last two and a half years. Now, when he seems the most settled he has been (amazing nursery) - though still far far more challenging to support than my other two NT DC - he has had appointments left, right and centre with every professional I can think of!
I was expecting to have to fight (again) for an ADOS when we saw a new paed on thurs, but she said the evidence was so clear that an ADOS is unnecessary. I had to ask her twice to confirm the dx as I was stunned that finally someone has understood how hard he finds things and the amount of work that goes into just getting out of the front door every day.
I have fought, written letters, been laughed at by doctors and playworkers, been told i'm neurotic, been told i don't know how to parent, and cried and shaken with frustration all in the quest to get him diagnosed and his difficulties recognised so someone will see that he (and we) needs help.
So how did I feel when he was dxd?
Definitely relief... that now people will/ should understand that he struggles hugely, even if he does seem 'normal' at times; that he should get help; that I'm not imagining it; that I'm not a crap parent and that now, there is a label I can use to explain to his siblings/grandparents/friends/strangers in the street who really don't matter why he is behaving the way he does.
But also, totally unexpectedly, as I thought I was absolutely emotionally ok with the whole idea, an overwhelming sick feeling that started in my stomach and clogged up the whole of my body, up to my throat, so I felt unable to speak or swallow or breathe. It was definitely a shock to have that reaction.
Luckily for me, DH and I were away for the weekend (the first time in 7 yrs - so lucky timing, I think!) without the children, which gave us both a chance to think things over with the luxury of being away from the immediate situation. The breathing space definitely did us good.
Since we got back, I've noticed I've dealt with the inevitable meltdowns with a lot more patience and understanding. I thought that was what I was doing before, but to actually have had a professional say the reason DS is like this is because he has AS (not because he is naughty, had rubbish parents, etc, etc) I think has given me permission to believe that the way I have been dealing with his behaviour is good, not mollycoddling.
Reaction from friends and family so far has been very mixed. People I thought would be dismissive have been very supportive and shown that they understand DS better than I realised, and people who should know better have said its utter rubbish and there's 'nothing wrong with you DS, is there?' to him (he's 4 and we hadn't had time to talk to him properly!!!!?! Grr!!) No there's nothing wrong with him - his brain works differently and we have to learn to take account of that, you cretin! That's the situation, but thank you for giving him something else to be anxious about...
I had been planning on posting to say thanks to everyone on MNSN who have given support and advice during the last few years. I've been quietly lurking during the last few months but have felt such support and a feeling of being in the same situation that other people have gone through that I don't know what would have happened to my sanity if I hadn't stumbled across here. But as your thread kind of says everything I've been feeling for the last half a week, I'll say it here instead.
Keep popping in here -people know what they're talking about, and someone has always been there before and experienced whatever it s that you're going through.
As for getting the diagnosis just before the holidays - for me I think that's a blessing. I will enjoy him while he isn't so anxious he self-harms til bleeds and bleeds and I will make the most of saying 'no, it's not a school day' and seeing his face light up with relief. And I will indulge his odd obsessions and feel lucky to have the time to really enjoy him before the stress and anxiety of having to spend hours with lots of other children at school kick in again. Yes, he's struggling with the change of routine -I spent this morning walking very gently over very fragile egg shells (and clearing up a lot of mess when they got broken!!). I know it's not the same for everyone, and things are likely to change as he gets older, but right now, I'll make the most of him while he's relatively relaxed.
I hope you get all the help you're looking for and life starts to improve.