Visually impaired children

[L00pyl0u]

my son is 4 1/2 months old. He is visually impaired he only sees light and colour.
I won't some advice on benefits as I can no longer work as he has M.A.D.D. A genetic fatty acid disorder.
How did ur child develop? Slower?
How are other kids with them now?

Please message me as I dont come on here often.

From lauren

re:benefits google the cerebra guide for filling in benefits form and also look at the RNIB page for advice specific to visual impairment and benefits. Look at applying for DLA, Carers Allowance and depending on your partner's income entitlement to extra tax credits for having a disabled child.

some links you might find useful, look UK, national blind childrens society and victa

children with a VI often do develop slower because they cannot pick things up in the way another child might, so portage would be very useful to you, if you don't get portage already, ask to be referred or you may be able to refer yourself depending on how your area works. You should also (if you haven't already) ask for a referral to the local sensory impairment service who should get a QTVI (Qualified Teacher of the Visually Impaired) to work with you, they come under education often but work with children from birth.

TC has good advice re benefits, the charities listed above may also be able to help with form filling and putting you in touch with other local families.

Thankyou he has physio and occupational therapist he also spends l
Time at great Ormond street. How do u all no so much? I'm totally oblivious to all of it total learning curve

I've been posting and reading on here for 4 years, you pick up a lot of useful knowledge on forums like this, often find out more than the professionals tell you about things like benefits/education etc!

also - you might want to look at applying for money for specific item(s) from the family fund www.familyfund.org.uk/

Thankyou again

My son is 12 now and totally blind via retinopathy of prematurity. He is also mentally impaired. Is your child looplou?

My son can see light and colour but not sure wot else is affected but at the mo he seems like a normal baby. He has brain damage to the back of his head As he stopped breathing at 36 hours old

My little girl has MADD and we get DLA and Carers Allowance. It took a long time to get the help and benefits we get now as the professionals didn't fully understand/appreciate the complexities of the condition at first. Are you supported by a community team of nurses? If not, you may need to be referred by your consultant locally depending upon how your child is affected. You might also be entitled to respite care depending upon the regime you have - we have alot of medicines to give and also tube feed. I have sent you a message on facebook, as after going through 17 months of having a child with MADD I have learnt alot and may be able to offer you a little bit of guidance and vice versa. We spend lots of time at Great Ormond Street too.