I feel like a failure

[SholerAndChocolate]

I posted here a few months ago and got some great advice about by 2 year old with regard to possible ASD or Sensory Processing Disorder. for the last couple of months I've been working with my health visitor who came out and assessed her, I've written letters explaining my main concerns and what shes like at home and today found out that the pead my health visitor has been talking to wants to see her in person, and my health visitor is making a formal referral. I'm told its really difficult to get a referral at this age and I should be happy and relieved they are taking it seriously at her age and its all happening so quickly.

I want to feel happy and relieved, I really do, but I just feel like a failure. I feel like I've let her down, done something wrong and made her like this.

I'm struggling trying to explain to other people why shes being assessed when all they say is 'well yes my child refused to put on clothes too' or 'oh x is like that, just will not sleep' and 'oh I've been there, just put your hands over their ears and its all ok again' when its so much more than that. She wont wear clothes because she says they hurt her, she literally cant cope in noisy situations, its not just a case of not liking it and as for the sleep, the less said about that the better. I just want to cry and scream. She is so difficult and no one else ever sees it.

People seem to think its all in my head and I'm making it up. I should be relieved the HV and pead have seen it too, they believe me and know its difficult, yet I just feel like a failure today. it feels like a big blow to the stomach and I don't know why, I should be feeling happy, this is what we've been working towards, why aren't I happier?

That's so true polter! I'm feeling much more positive today, it's a good thing and whatever her additional needs are we can work with them

The blow to the stomach feeling will come & go. and a bit of mumsnet usually helps me. It's the sinking dread of admitting to yourself that you didn't just make it all up or imagine things. Worth it though, cos identifying the various difficulties helps in tackling them.

Along with the other stuff, do a long list of extra-small progress 'next steps' you want to see, then plan how you can help her reach them. In a month, tick off the ones you've got to. Doesn't take long before you have a nice list of recent achievements to set against the rather doom&gloom 'issues' lists.

Sorry, I can't find the research, but there is quite a bit that shows prognosis is hugely affected by how fast parents can both accept the difficulties and then work with the children to help them.

That puts an awful lot of pressure on you, but in many ways it is liberating, because you don't have to rely on anyone or anything else.

I find there's a massive cognitive dissonance involved in having a child with SN who can sometimes present as 'normal'.

A lot of the time, people say 'well, he seems absolutely fine to me!' or 'Oh yes, my (NT) child does X, Y and Z too!'. So you find yourself listing all the stuff your child can't do, or finds difficult, or that you make constant adjustments to manage.

So instead of celebrating your child's achievements, you're saying 'oh look! See! This is what he's completely crap at! See how he's behind his peers and how weird this behaviour is.' And that's just all wrong as a parent because that should be about celebrating our children's success and achievement.

And then when you get professionals saying 'oh yes, I can absolutely see there are huge neurological issues here', it's crushing and depressing and very fucking sad.

It's terribly hard. And I send you many, many (((hugs))) and

And sometimes you find yourself wishing they didn't look quite so "normal" so that people didn't jump to conclusions quite so easily.
It's fucks with your brain

Polter - :)

I think it's mostly people trying to be kind but at other times, it's fairly apparent that they think I'm making it up (trying to make a huge drama out of something that isn't there) :(

sholer I totally get your frustration at other people just not getting it, too. oddfodd's posts are spot on! Sending . You're not a failure.

First time I saw Pead and she agreed w my concerns I was so relieved I wasn't nuts. It felt like no one else could understand what I meant or wondered why I was doing dd down. Then I got scared about what it meant that Pead could see concerns too.
Spotting it early and getting a referral is an achievement btw not a failure as a parent

Totally understand ,I thought I would be great when my Ds finally got a diagnosis of aspergers 2 weeks ago I'd be so relieved. Instead I fell to pieces.
I suppose, like you I've been justifying the assessment to eveyone because on the surface Ds is an average 9 year old. He's a good imitator. So when we got the diagnosis ....it was like a confirmation of all we thought was 'wrong ' with him. I know that sounds harsh but the reports do focus on the difficulties and can be upsetting. But I do kniw therecis so much 'right' with ds.....so we have to build on the strengths and try to improve on the issues. I haven't quite figured out how to that yet but I'm hoping!
I've decided that all these comments are so upsetting but we must try to ignore them and keep our heads held high and do the best ww can for our lo's! I
Sounds easy but it's so tough!