Losing marbles

[MangoMonster]

Feel like I'm losing my mind waiting for genetic testing results for 2 year old ds. We have a VB programme starting in October and have now been referred to a community paed, as other paed thought I was silly to think ds has asd. He's been dx'd privately an got the formal letter yesterday, really made me feel low, although of course there was nothing new in it.

Really worried that the genetic testing will find something and if it doesn't i feel like I should ask for retts and other tests because of other issues I've noticed.

My sister is here with her dd who is a few months younger and her 6 yr old dd. Ds doesn't want to interact with them as he doesn't understand about playing on a ride on toy or with building blocks. They are confused and hurt, and so he is, he's having constant melt downs which is not usual.

I just wish i knew how it would all pan out. I'm constantly stressed and it's probably difficult for those around me to deal with. I can't talk to anyone apart from dp and bless him, he has enough on his plate.

Been trying to take ds out to playgroups but other mums seem confused by him and tend to take their kids away to do something else, just as they are playing with my ds in a meaningful way, chase or peekaboo. Ds keeps taking toys away from other kids which makes me happy as it's amazing that he is showing interest in new objects but obviously other mums don't see it that way, which is understandable.

Just feel lost. Don't want to tell the whole world he has asd, but get comments about him casting toys and acting "weird" in their eyes. His latest thing is trying to lick faces which is really disturbing to other kids, but he doesn't understand.

Sorry for the long moan. Had to get it out, as it's been swimming around my head and making me stressed and unwell.

I just have no idea what the future holds for ds or us as a family.

I think this kind of interim period is the hardest in some respects at least psychologically. I went to pieces when my ds was diagnosed and can quite honestly say it was the most traumatic thing I have ever experienced. However, when you start your VB programme you should start to feel better as you will have a plan for helping your ds and will start to see him make progress. This is what happened with dd2 (also ASD) who still has plenty of difficulties but has definitely made loads of progress. It has also given me a way to teach her things and helped me feel more in control of what is happened to me and to our family. I do still protect myself from the NT world to a degree and only do stuff I can cope with. It gets easier, promise

Thanks cansu. I think I feel very inept at helping ds when hes's out of his comfort zone. Really hoping VB will help me with this. It's all happened so quickly and we were just getting to grips with his visual problems. I'm just scared about what's round the corner, didn't think anything else could go wrong... But since he's been born it's pretty much one thing after the other, like a slow drip feed of pain, hurt and confusion. I guess if I had found everything out at once I might have had a breakdown, so probably for the best. Dp would like another child... Not sure I could do it all again and fgive my best to ds, dp and my elderly parents.

I know how you feel. I posted recently about how frustrated I was that I was never given a definitive diagnosis for my boys conditions, despite test, after test, after test.....

Prepare yourself for the fact that the genetic testing and referral MAY (and I do mean MAY) not provide you with an answer about your DC's behaviour.

Before genetic testing, I was convinced my sons had Anglemans Syndrome, or Rhetts Syndrome, or Prader-Willi Syndrome.

It's very hard to deal with the fact that the behaviour of your child can upset others and, because they are not NT, you can't even explain to them why they shouldn't do what they do (e.g licking faces).

It's not "a long moan". It's totally understandable. You have not idea what the future holds, nor do I with my sons. Just take it day by day but it is hard and you are not alone

So agree with cansu - our dx period lasted 18 months and I look back and don't know how I got through it, I really don't. It was the most intensely stressful period of my life - nothing compares to it.

It is very difficult to see DCs in close proximity to another DC, especially as he is your only child. It really does make the differences stand out. But they are his cousins and they will be his big advocates as they grow up together.

Be kind to yourself, stay strong and know you're not alone.