AiBU to feel sad about my son's autism?

[Whatisitallabout]

He's going to be diagnosed soon, he's nearly 3 and is moderately/ severely affected.

I love my son more than anything. I'm just devastated life is going to be hard for him , and is already. I am aware there are lots of positives and it could be so much worse , but that doesn't mean I'm not hurting for him.

Thing is when I try to talk about the hard parts I'm met with "it could be worse" or "he will be ok" which are well meaning and lovely, but not always helpful when I'm trying to discuss my genuine fears for the future. It also makes me feel unreasonable for even breaching the subject!

YANBU my DS was dx 6 months ago at 10 year old and my DD is in the process of being assessed.

It is a mourning for the future that you thought you were going to have.

The reality that life is going to be more difficult for your family is quite a difficult pill to swallow. Your role as mother will be different from that of NT mothers, you will have to be your child's voice and advocate, you will have to negotiate schooling and support. That wasn't part of the plan.

But my children are wonderful and funny and kind despite their difficulties, they are no different from who they were prior to dx and my daughter will be the same if she is dx as she is now without one.

6 months down the line I am trying to focus on the positives. My friends and the friends of DS1 don't get it and I don't think that they particularly want to try which is sad. If my son makes a social error they don't see it as an aspect of a disability because he is high functioning and looks normal. They don't realise that it is not easy to parent these differences without causing my child to be anxious. That is probably the hardest part.

But there are loads of people out there who do get it and will be supportive.

My 5 yo ds is autistic. I remember his pre school teacher taking me to one side and very gently asking me to consider taking him for an assessment as she had concerns. I think I sobbed for about 2 days straight after her telling me that. I knew he was autistic, I had since he was 1 but I kept just brushing his behaviour off as quirks and covering up for him. I still struggle with it now. He is good, kind, hilarious and thoughtful. I don’t want his life to be hard. I don’t want people to notice that he’s different and think less of him because of it. I don’t want anyone to be cruel to him.

You do get used to it. There are still days I just want to cry and scream that it’s not fucking fair.

My nearly 4 year old is part way through the assessment process too. It is hard as you worry for their future. I have two older NT children and feel sad that he will struggle in a way they do not.

On a positive note I have worked with children with autism into their teens and there is so much more support now with early intervention. There is also a greater understanding from professionals and people generally. I have seen real developmental progress in my niece, now 6 due to the early intervention she recieved after being assessed at 2.5.

I appreciate that there is such a vast difference in children on the autism spectrum that some children with autism, like others with complex needs will not benefit from this. It is so very sad, you grieve for the child you imagined you would have. In ds's case despite all this I am grateful everyday that he is here, there was a strong chance that both he and I wouldn't make it after a traumatic premature delivery. There are many moments that he makes me laugh and smile.

It doesn't feel fair, I know. And people can be completely shit, unhelpful and patronising. Time does help you to accept the losses. It also helps you to appreciate the small wins even more.

Keep up with that support group - it can be a lifeline. Cultivate these friendships if you can and above all GET SOME TIME TO YOURSELF -often! Definitely stops you going mad imo.

The moment it clicked for me was when DD was in playschool. I'd gone in for a morning and suddenly realised how different she was to the other children. It was the first time I couldn't ignore what I'd suspected for a long time. I walked out of her playschool, sobbing.

She's nearly 7 and since then has come on in leaps and bounds but I've never quite come to terms with her being on the spectrum and I'm not sure I ever will. Because whenever I think about it too much, I start wanting to scream about it being unfair.

This blog was sent to me when my child was diagnosed with heart disease. I know it's a bit different, and obviously he isn't a baby, but he's your baby so you may be able to relate.

www.scribblesandcrumbs.com/2015/06/24/to-the-momma-whose-child-was-just-diagnosed/

my son was diagnosed in 2006 age 4 and he was not speaking at the time. he didn't speak till he was 7. Now he is in mainstream secondary. doing brill!

Thanks Whatisitallabout.
We got her OT report today, she has vestibular under responsiveness and poor balance. Yet she can ride a scooter like a pro and build amazing tall towers out of bricks.

My parents think her impending dx is all in my head and friends either dissapear or we get avoided given dds social problems.
I feel ever so isolated and sad that we can't do things. Like her surestart dance class has simply too many people attending now so she can't manage to get through the door without panicking.

My only 'hope' is that they keep telling me she has lots of emerging skills and seems to be intelligent. She certainly knows how to play me.

It's hard when the child in your life doesn't "fit the mould" (autism or other variations)

There isn't any easy answer. I think it's great that you are being honest with yourself.

Every day has bonuses and downfalls. That sounds like a crappy meme but it is really true

Thanks everyone. He scored high on his ados. Just awaiting the rest of the assessment now...

whats hugs x

Whatisitallabout

I have sent you a PM - hopefully the information will be helpful to you xxx

Thank you mother will read now

It's tragic and I'm not sure you ever get over it, some people seem to cope better with it than others - I prefer a realistic approach whereas my dh is more positive. My DD is globally developmentally delayed, has hyper mobility and suspected autism (although she doesn't fit in the easily diagnosed box). We are undergoing genetic testing and no one can really answer what the future holds for her.