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Alone in the snow (in March?!)

sunshine_in_the_rain

Hi all,

 

This is my first time in any sort of forum but I am slowly (and I emphaisie the 'slowly') coming to accept that my daughter is not going to ever be like other children and my experiences as a parent will never be what I planned.  So, it seemed to make sense to join a community where the abnormal is the normal and I can carry on pretending that it's not really happening to me.

 

You probably think my daughter is about 4/5 years, but in fact she is 13.5yrs.  Having not been in school since early this academic year (we are waiting for an ASD placement) the reality of what my life is going to be like has hit me like a sledgehammer. 

 

My emotional response seems completely out of all propotion!  Why does it seem okay that i can tell people my daughter has ASD, but if someone in authority says it to me I feel like it's a personal attack?  Not to mention if I see it written down on letters / doctors referrals / school papers I have the desire to burst out into tears.  Surely the fact that her condition is being recognised is positive as I have fought for ten years to have that recognition and yet, somehow, I can't seem to get 'there'.  I feel like I am grieving.

 

Has anyone else experienced this?

  • Hi - I think every parent on here will have experienced something similar. It does take time to adjust to - you can't rush these things.  There are lots of posts on here about reactions to a diagnosis so have a look if you haven't already.  You'll find you're certainly far from alone, even if you actively fought for a diagnosis, getting it can often be a different matter, seeing it written in black + white can be quite stark. Please don't be too hard on yourself - there's nothing you could have done.  It's got a genetic component, as you'll know.  Your daughter's the same person she always was.  Now you can help her even more.  Sometimes all we can see is the autism, at least initially.  That's how I felt when my son was 1st diagnosed.  Everything he did suddenly had a capital "A" for autism attached to it.  Understanding how autism affects your child as an individual is a good thing.  You've done something that a loving concerned parent would do by getting a diagnosis.  Sometimes autistic children manage to cope in primary mainstream but have significant difficulty in secondary.  Is this what happened with your daughter?  If so, the ASD unit should be of benefit to her educationally + emotionally.   The logical brain + the emotional brain are 2 very different things - at least they are where I'm concerned!  You'll get there in your own time.....don't try to learn everything at once - bit size chunks, as they say.  Loads of support + info on here from people who understand.  

  • Yes, I can relate and emphasise totally with you.

    My son is 13yrs old and in the process of being daignosed, we did not see this one coming. We have 3 children, two grown up and to us all 3 are individuals. So the youngest we never really had any concerns or his primary school. He is our boy, whatever quirky little ways he has always had.

    Since entering secondary school, it has been a total nightmare for him and we are stood watching this.

    I think for you, like me have known about them being different. But as mum's we love our children no matter what, they are ours. Then to be officially told they have something wrong with them that is likely to affect the rest of their lives, is devastating and can feel like you’re losing control of what is happening with your daughter.

    Along with fighting the system to get the recognisance your daughter needs, in order to get the right support, to help her through her life. This is all major emotional turmoil you are going through. Along with feeling like your grieving, for what you believe is the past to an unknown new beginning, who knows what this holds. That’s one scary place that all the parents have been on, who come on this site.

    Don't be too hard on yourself, you sound like you’re doing a great job of fighting and supporting your daughter. I know it's hard because we have to be so together for our children, they need us, no one else will fight for them like us.

    We have been knocked sideways, I feel exactly the same as you. I am such a mess at the mo dealing with people (school) who think they know it all about this condition when clearly they don't. This is hindering and causing emotional problems for my son, which in turn I take on board causing me stress and anxiety on a daily basis.

    Take care.x