I cannot tell you how incredibly grateful I am for the wonderful help and support I have already received. I am so fortunate to live in a large city where services and others with similar situations are not that far away. I also have fabulous family support. For anyone who needs support (or more support), keep looking and don't be too afraid or proud to ask. The Internet has given us the most brilliant forum to share insight, experiences, information and also make friends. You found this site so I am sure you will find others but try my Links page for what I think are the best.
Early Intervention Services - Can-Do-4-Kids - Townsend House
From the earliest of diagnoses we were referred to CanDo4Kids - Townsend House who provide services within South Australia to families of children with a vision and/or hearing impairment (and additional disabilities if applicable) that cannot be corrected with contact lenses or glasses. All of their services are provided free of charge thanks to limited government funding and so many generous people and businesses who give precious donations.
CanDo4Kids's Early Intervention Service make regular visits to our home to provide information, support, vision assessments, developmental monitoring and help educate us in strategies for promoting the use of the child's vision. They also accompany us to our Ophthalmological appointments to give us support and have given us regular opportunities to meet other parents and children with vision issues as well as those with the same condition. Through CanDo4Kids we have also been informed of other services available to us both now and in the future. Wow they are fantastic!
Family Doctor
I have a lovely family doctor (General Practitioner) who is most willing to do whatever he can to be assistance to Alana and ourselves. Don't expect your local doctor to have ever actually treated someone with albinism directly before, don't forget there aren't that many of them, or know all about condition. You may find yourself giving the doctor a few lessons on the different types of albinism and specifics of the condition. That doesn't mean that they can't go away and research things then get back to you or help explain some aspects to you in plain language out of those expensive looking medical books they have. They can also refer you to Ophthalmologists, Dermatologists, Paediatricians and other specialists that have more dealings with the issues that they don't. Just because one doctor hasn't got the answers you need it doesn't mean another one doesn't either.
Carers Associations
Here we have a Carers Association that gives support to those who provide care and support to relatives or friends who are frail, have a disability or chronic illness. www.carers-sa.asn.au is their address and they have events, forums, information, training and more.
Friends and Family
Sometimes friends and family can give you that understanding ear to just get those feelings and thoughts off your chest. On the days when you don't feel so bubbly and bouncy a good friend will just let you have that 'venting' session you need and then cheer you up. Or maybe give you that little break by looking after the kids for bit. No, they won't really understand what its really like to be in your position but by you talking to them they can get some understanding. Any adversity will test out your true friends from those who are 'just acquaintances' but that's not such a bad thing.
Albinism Online Groups / Communities
A fantastic way to share information, experiences and advice with other people with albinism, parents of children with albinism and others with an interest in albinism from all over the world. Despite geographical and cultural differences dealing with albinism issues is very similar experience all over the world.
The only group I have had involvement with myself is this one, it has been an excellent, friendly, helpful, supportive and informative resource which I have found invaluable since joining:
Yahoo
Groups - Albinism International
Worldwide membership of over 300 people with interests in albinism. Great atmosphere
and friendly, helpful support and information.
http://groups.yahoo.com/groups/Albinism_International