Happy National Albinism Awareness Day!

Today is National Albinism Awareness Day. Do you know what Albinism is? Follow this link if you’d like to learn more All Things Albinism .

Most people don’t know what Albinism is and can sometimes stare or whisper at first glance. Lots of times people are startled when they see someone with albinism because they have never seen someone with white hair before.

As a new mom of boys with albinism I often mistook the general curiosity of most people for cruelty. I would go home angry and hurt after an outing because of all of the whispering  and staring. Thanks to NOAH (The National Organization for Albinism and Hypopigmentation)  I learned due to the rarity of Albinism (1 in approximately 20,000 in the US) most people just don’t know much about it. They suggested I educate people about what Albinism is and what it is not.

So….. I changed the way I thought about the stares, the whispering, and even (gasp) the occasional pointing! Now when people look or whisper in our direction I remind myself that they are most likely wondering not judging. When this happens  I generally find a way to tell the person or people about albinism. I say something like- I see you noticing my son’s hair. Isn’t is awesome!?! We call it his rockstar hair. And then I give them a quick lesson on albinism. By doing this I avoid feeling angry or hurt and end up having lots of  pleasant conversations. That’s not even the best part. The BEST part is what it does for the boys. They see me educating people, in a matter of fact way, about their albinism. It gives them an example of what to do and how to explain things when they are in a similar situation and it normalizes it for them.

If you ever have any questions about Albinism please just go on ahead and ask. I love spreading knowledge about this magical condition my children have been blessed with.

 

#albinism #educate #lifelonglearner #bekind #benice #rockstarhair #albinismisbeautiful #stephenandjoseph #magicmatters #findyourmagic #differentnotless #magicalbeauty

Published by tarsha benevento

I am an educator who thrives on helping others. I spent close to 15 years teaching and then as an administrator in the New York City Public School System. During that time I completed my first Masters Degree in Teaching Reading and and additional degree in administration. I currently tutor students in all subjects and grades. In addition, after completing the Parent Advocacy Class with The Federation of Children with Special Needs several years ago, I am a parent advocate. I plan to dedicate my time to helping other families of children with special needs.

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