If you have a child diagnosed with Albinism welcome to our story!
Here are some tips & links that I found helpful when we first found out our daughter was diagnosed with Albinism:
The closed Facebook group Ocular Albinism can be a great resource and if you reach out they will shower you with tips and kindness. Coolibar is a clothing brand that offers UV clothing you can find the link here. There is also a detergent to wash your clothes with to make them UV protected you can find that link here
A beautiful read about a simple encounter we will all face sometime: http://bloom-parentingkidswithdisabilities.blogspot.ca/2014/10/sadie-at-salon.html
An article I wrote about dealing with comments: http://themighty.com/2015/10/many-people-comment-on-my-child-with-albinism-but-this-one-stood-out/
Some good tips from a mother who has walked in your shoes: http://www.parents.com/blogs/special-needs/2015/04/06/support/the-5-things-i-wish-i-knew-about-raising-a-daughter-with-albinism/
Articles online:
A beautiful read about a simple encounter we will all face sometime: http://bloom-parentingkidswithdisabilities.blogspot.ca/2014/10/sadie-at-salon.html
An article I wrote about dealing with comments: http://themighty.com/2015/10/many-people-comment-on-my-child-with-albinism-but-this-one-stood-out/
Some good tips from a mother who has walked in your shoes: http://www.parents.com/blogs/special-needs/2015/04/06/support/the-5-things-i-wish-i-knew-about-raising-a-daughter-with-albinism/
If you are in Canada you qualify for the child disability tax credit & you apply online here:http://www.cra-arc.gc.ca/E/pbg/tf/t2201/README.html
Get connected with CNIB (Your eye doctor needs to contact them to get involved) http://www.cnib.ca/en/services/vision-support/range/Pages/default.aspx#title9
PUF Funding for pre school support: https://education.alberta.ca/parents/ecs/
Make sure to ask around for funding for UV Clothing
Books when you need a friend, to laugh, or to cry:
http://www.amazon.ca/The-Edge-Normal-Kindle-Single-ebook/dp/B00ZVD4STK
http://www.amazon.ca/Beyond-The-Pale-Emily-Urquhart/dp/1443423564
NOAH: National Organization for Albinism and Hypopigmentation:
http://www.albinism.org/site/c.flKYIdOUIhJ4H/b.9194783/k.C775/Welcome.htm
You can join the NOAH community and they will send you resources for a fee, right now it is 30 dollars. There is also an annual conference you can attend to meet people going through the same things you are.
Information on HPS: http://www.hpsnetwork.org/en
http://www.amazon.ca/The-Edge-Normal-Kindle-Single-ebook/dp/B00ZVD4STK
http://www.amazon.ca/Beyond-The-Pale-Emily-Urquhart/dp/1443423564
NOAH: National Organization for Albinism and Hypopigmentation:
http://www.albinism.org/site/c.flKYIdOUIhJ4H/b.9194783/k.C775/Welcome.htm
You can join the NOAH community and they will send you resources for a fee, right now it is 30 dollars. There is also an annual conference you can attend to meet people going through the same things you are.
Information on HPS: http://www.hpsnetwork.org/en
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