albinism...

[katkoala]

hi all, DS has albinism, is 11 weeks old. just wondering if there are any mumsnetters out there who have any advice/experience. Finding things really frustrating as we wont get an idea of his vision capabilities for years, from my understanding. Want to be able to do the best to support and develop my son...any support/guidance would be much appreciated...

hi kat, I don't have a child with albinism but I am an optometrist and have had some clients with albinism down through the years.
I can understand that it's frustrating because you don't know yet how good or bad the vision will be. Most of my clients have good jobs, can read books, work on a computer. I think around half have vision good enough for driving but those that do would meet the requirements to drive a car, not a bus or truck.
I am in Ireland so don't know what the system is like in the UK with regard to special support. Here children with low vision sometimes attend special classes before they attend school. You might find that if there is an optometrist in your area who is a behavioural optometrist they might be able to work with your son to maximise the use of the vision he does have, I know some who will prescribe lenses to help calm the nystagmus. There is nothing that improves the acuity as such but some children benefit from vision training.
Does your ds seem to have vision now? Does he track objects or look at your face?

hi kat, congratulations on your new ds I don't have a child with albinism but dd3 does have a VI amongst other things. We had a really good idea of what she could see before she was a year old between a combination of personal experience and testing at our local eye unit and at GOSH. Do you have any support from a QTVI (qualified teacher of the visually impaired) or from portage? Both of these would be really beneficial to your ds, your consulant should be able to refer you if they haven't already. There's a few of us around here with kids with a VI so let us know if we can help at all

Hi Kat. Congratulations on the birth of your son! I have no experience, but just wanted to say congrats to you.

Hi Kat

Congratulations on the arrival of your baby son

I have two dc with albinism, it mainly affects their vision. They do have some pigment and have gone on to have yellow hair now but their skin is very pale. My ds also has severe autism so it is very difficult to test his vision but my dd is easier to help! They both have all the symptoms chipmonkey described and it is the visual acuity which is the problem.

I could type pages and pages of details about my two as they are 13 and 11 now but perhaps it might be more helpful for me to answer any questions you may have? Or if you would like a little history of their journey through the system I am happy to type this too.

Just to let you know, on the positive side, my dd has gone on to do really well at school. All reading material is modified for her and she gets extra time and rest breaks in tests. She is a little superstar and I am very proud of her Of course ds is fabulous too!

Sorry I have no advice but just wanted to congratulate you on the birth of your son .

thank you all for taking the time to comment
At the moment ds isn't focussing on me, however I've read his vision can improve dramatically after 6 months. For his next eye appt I've to see if he focuses on a small, bright toy which doesn't make any noises and provide feedback. He's really sensitive to light, he even closes his eyes outside on a cloudy day. I've got a snooze shade for his pram but can't wait for him to have tinted glasses so he can take in more of his surroundings.

we're also being referred to a dermatologist and geneticist. He has a lot of gorgeous white hair

I've been told we'll have input from VI team prior to school and perhaps nursery.

Have lots running through my head right now, mainly not going back to work full time as I really want to be around to help his development prior to school. I'm hoping we can look into claiming DLA to help with the shortfall in wages.
The Albinism Fellowship has been a great resource, as I feel I've had to look into everything myself, at ds 6 week check the gp had no notification of his albinism.
Feeling frustrated but happy there are you guys who I can turn to with my questions