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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to be this upset about developmental delay diagnosis

53 replies

LadyDowagerHatt · 16/05/2015 02:28

DD is 2 next month and not walking yet, doesn't really have any words and drools constantly. She is a happy, lovely little thing who smiles a lot, gives kisses, and is making progress, just slowly.

We were referred to the paediatrician, originally for the lack of walking but as we have been waiting so long for the appointment the lack of speech began to become more of an issue.

She has been referred for all manner of blood tests, MRI scan, physio, eye tests as well as the hearing test and SALT referral I already had in place. The paed said she is about 8 months behind and she may catch up but she may always be behind and may fall further behind her peers.

He has not told us anything we didn't know but the news seems to have hit me hard. I think it is the acknowledgement that she does have some issues and all I can do is think the worse that she won't catch up and life will always be a huge struggle for her. In my head I have re-written her future in one day. The paed told us not to think about where she might be in 2 years etc but just to concentrate on her now, which I'll admit I am finding difficult to do. I love her to bits and will obviously support her and push for her to develop to the best of her potential but I feel so upset at the moment. My husband doesn't really understand my reaction and came out of the appointment really positive, thinking at least he didn't identify anything particular straight away - he kept saying at least she isn't been sent for a hip operation of anything which to me would have been preferable as it is something immediately fixable. He keeps focussing on the part around her possibly catching up whereas I am thinking worst case for her development and doubting that is even possible now. I wish I could shake this feeling as I feel like I am letting her down and I am writing her off developmentally - I've already looked up schools with special needs facilities near us.

I think it is the not knowing that is so difficult and I am just filling in the blanks and constantly googling. I know I should be thankful that I still have the same beautiful happy little girl I have always had but I can't stop crying.

Thanks for reading if you got this far!

OP posts:
LadyDowagerHatt · 18/10/2021 06:14

Hi @ttrrii to be honest all my worse fears were realised… she is now 8, non verbal, in nappies and will need lifelong care. There will always be a sense of grief for the daughter I thought I had but she is a happy, funny little thing and we love her to bits. When I read this post it brings back all the confusion, concern and feelings of fear and disbelief I had at the time - lots of love and support to anyone going through the same.

OP posts:
RedHelenB · 18/10/2021 07:14

Sorry to read this, of course you love your daughter but knowing that they will never be independent is a huge shock.Im glad that she is still as happy and funny. Wishing your family all the best and thank you for the update.

x2boys · 18/10/2021 07:54

@LadyDowagerHatt

Hi *@ttrrii* to be honest all my worse fears were realised… she is now 8, non verbal, in nappies and will need lifelong care. There will always be a sense of grief for the daughter I thought I had but she is a happy, funny little thing and we love her to bits. When I read this post it brings back all the confusion, concern and feelings of fear and disbelief I had at the time - lots of love and support to anyone going through the same.
Hi i posted on your first page my son is now eleven! He's still non verbal but finally out of nappies yay, he's always been at a special school, life isn't easy, but he makes me laugh every day.
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