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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To just want to give up?

5 replies

Hogi · 22/06/2023 10:36

Hi all,

So back in March my two year old son was diagnosed with a rare genetic disorder and we're waiting for a ASD assessment. Since then it's been heavy. He's been having seizures, spent a week in hospital and has needed an EEG and MRI. He also has normal appointments such as physiotherapy and speech and language, appointments with Senco at nursery, a specialist inclusion teacher - all the works and it's brilliant he's getting the help he needs however it's been emotional and draining but you do what you have to do.

When he was diagnosed my DD was five months old and honestly if we knew prior I probably wouldn't have had another baby as DS is very hands on but she has started to show developmental delay she's almost eight months and he head still isn't stable, she does a lot of the nodding dog, she doesn't have full control of it. It doesn't seem like she has any strength to sit up either so I booked a doctors appointment thinking I'm worrying over nothing but wanted to be safe and the doctors said he's actually quite concerned about her and is doing an urgent referral to a specialist .. which I honestly expected him to say I was worrying over nothing and it's fine.

I have noticed that although she smiles at me and her dad she won't smile at other people, her social skills seem behind too and it's just a lot.

I don't know how I'm going to do it all again, I just need a handhold I think and maybe I'm jumping ahead of myself but I'm just so upset.

OP posts:
sunnydayhereandnow · 22/06/2023 10:37

Sending a handhold. That sounds hard.

RandomMess · 22/06/2023 10:38
Flowers

That's so difficult and upsetting.

Please be kind to yourself.

Have you any support on real life that won't minimise your feelings and just be there for you?

Hogi · 22/06/2023 10:44

Thank you both x

I don't really have anyone to speak to. My DH and family are sort of going through the same thing and I don't wanna make it worse and make it all about myself.

My friends don't really understand and don't know what to say which I understand.

I'm under the CMHT but it's very slow and I'm unallocated at the moment which is why I'm ranting here, just wanted to get it out somewhere.

OP posts:
SouthCountryGirl · 22/06/2023 10:50

Is there a charity for your DSs condition? You might find parents going through similar who can give you support.

Hogi · 22/06/2023 11:16

SouthCountryGirl · 22/06/2023 10:50

Is there a charity for your DSs condition? You might find parents going through similar who can give you support.

Yes we've joined unique and other Facebook pages with people whose children have the same condition. I really am trying to do my best with it.

OP posts:
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