My baby is blind I'm devastated

[mommyfive]

I don't know who to go to or what todo my 4 month old little girl is blind and they recon even at this early age because of the things she's doing possibly blind and autistic she's extremely responsive to sound and touch I begged the hv to check her eyes even at 4 weeks I knew something was terribly wrong to look at her you wouldn't really even know most of the time she looks as if she's acting just looking around she has now started shaking her head horribly especially if upset. She's actually almost 5 months this Saturday. She sways her head and her eyes occasionally look upwards as if there rolling into the back of her head and let me tell you I'm not just saying this where ever I go people always comment at how pretty she is she is so beautiful long dark lashes big green eyes coming through like mine and her dads she Dances when she here's music and she feels with her hands and from 3 weeks old been able to find her own dummy and put it in her own mouth you think I'm taking rubbish I would have if someone told me that before I had her but even my HV witnessed it and jumped off my sofa in shock her motor skills are of anyone of full control it's freaky I'm a mother of 5 so know this stuff I believe she's good at these things because all her other senses have been heightened because she's blind . I need help with toys and what todo can any help me advise is needed

I can totally understand that you are devasted. I think that most parents would have some level of grief over this.

Have they said if your DD has any vision at all? And have they said why she's blind?

Have they given you any of these leaflets from the RNIB?

Has the HV referred her to Portage and hace they told you to apply for DLA?

No she hasn't and they are doing scans next week to get a better idea of it all but believe there is no vision from the results of the tests she's just had and I'm so devastated right now I can't even remember what it's all called. As for DLA can I baby that young get that ? X

According to the RNIB you can claim once they've had problems for 3 months and they are likely to continue for another 6 months.

There's a helpline at the end of the link where you can speak to the RNIB about DLA.

I'd also put in a claim for Carer's Allowance if you're not due back to work after Mat Leave.

Once you know what the condition is that's causing her blindness, ask if they know of any support groups, these might help online as there may not be many DC with the condition in your area.

Also ask of there are any support groups locally for blind DC and their parents.

I'm so sorry you're going through this and it's a lot to take in. If you're unsure of what the Doctor says at any point please do ask them to explain and if you think you'll forget, write it down or ask them to write it down for you

No advice but just wanted to send you so much love xxx