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“When we went to the eye Dr. I was told he has OA then he pretty much walked out of the room. We just left with a lot of questions and don’t remember much from that visit"
Geee.... Why would a parent feel like they were left in the dark?
This is unfortunately no as uncommon as it should be. Many of these Doctors have not seen Albinism in person since school. Even fewer have seen Ocular Albinism. (there are only about 200,000 cases of OA in the United States.)
The advice I give to any parent of a child with any vision issue is below. It's not a white-washed, fluffy view. It is the ugly and lovely reality of parenting. Feel free to comment... I always do. :)
While Albinism is not as rare as many believe, there are many Ophthalmologists who have not worked with us regularly. Worldwide, the average occurance of albinism is 1/20,000.
I still have Doctors sometimes say something like, "WOW! I remember seeing retinas like these in school!" Let me tell you first to avoid any Dr. who is like that. They are not qualified to work for you.
I have OA. (Ocular Albinism) I will be 43 this year. Red Hair, Blue Eyes, Pale skin. I do not drive, but I ride a bike. I read "normal text". I use a computer. (I do modify the contrast settings and use filters for glare.) I don't play ball sports, but I wrestled, did Gymnastics, and ran track. I was even the School Mascott in high school.
My best friend, from school, is a Judo player and has been in Two Olympic Games as a player with Albinism. He took Gold in 2000 and Bronze in 2004. He owns his own Dojo and trains Olympic athletes. He Coached the 2012 Paralympics Judo team. - UPDATE: He is working with the 2016 US team.
The best advice I can give is to love your child and let him be a kid first. Don't ever let the doctors, counselors, or teachers tell you what he can or cannot do. Let you child discover the limits to his/her ability. (You will be amazed just how far those limits turn out to be from your initial expectations.)
Love him, enjoy him, and keep the insurance premiums up to date. (Grin)
Contact the local services for the Blind and visually impaired. They will know who in your area is best qualified to handle your child's visual needs. Let him have as much exposure to the “real world” as he can handle.
He will fall. He will get hurt. He will deal with teasing. He will learn to handle himself. ... If you let him.
I am a parent. I know we all want to believe we can shield our kids from the pain this world can bring. We want to hear the sweet and rosy side. I believe that does no good.
You deserve the truth.
The truth is that there will be challenges. The truth is that he will sometimes have his feelings hurt, be frustrated, and mourn the vision and pigment he never had.
He will also grow to accept himself for who he is. (If you accept him for who he is.) He will learn that he has more to offer than even he can imagine. He will grow to be a strong, confident young man who takes challenges in stride because he has learned how to deal with challenges every day.
All these can happen if you love, respect, and support him as a person first. I am a man first. I have albinism but that does not define me.So Here's the "elevator speech.…
Keep the sunscreen handy and plant a few Aloe plants for when you forget, or his stubborn pride means he won’t put the sunscreen on.
Hats are cool and unique ones can become a way to identify and define one's character. (I wear a Fedora a lot)
Sunglasses are ALWAYS cool.
Have a sense of humor. Don't be afraid or ashamed of the condition. We are advocates for our kids when they are young. They must learn to be advocates for themselves as they age. Being able to discuss the condition openly, honestly, and with humor makes the advocacy that much easier.
I am excited for you and your new adventure. Hang on. It’s going to be a wild ride. But it’ll be a blast if you let it!
Goes without saying that all parents should take that message to heart. Nobody's perfect. I'd forgotten about the color blue!
ReplyDeleteMy god..what fun parenting can be ! I did not realise and sulked and was furiously protective ..i should let my littel darling go out there and explore on her own ! I am sure she would get back home with better results and learnings ...thanks ..thank you so much :-)
ReplyDeleteAs the mother of a toddler with OA, I really appreciate your insights and advice. Every time a doctor tells me something my son can't do, that little boy just goes ahead and proves him wrong. I am inspired by my son every day. Thanks so much for your willingness to share about your experiences!
ReplyDeleteThank you for sharing this, My grandaughter was diagnosed with OA at 6 months, then at 9 months diagnosed with Hermansky Pudlak Syndrome, A type of Albinism that is extremely Rare, One in a Million, It is charachterized with a bleeding disorder and Some types have Pulmonary Fibrosis, Crohn's type digestive problems, I am urging you to check into this rare disorder if you have OA and experience easy bruising, Undiagnosed, or unexplained digestive and Lung problems, We are trying to get the word out to the albinism community, and others so that we may increase awareness and help us with research into this rare form of albinism. For further information on HPS and CHS (another rare form) go to HPSNETWORK.ORG..... They are our lifeline ..... Thanks for letting me share also and Hope to see you all around, Have a wonderful day and keep sportin the Shades......Love em..... Mari Moody
ReplyDeleteThank you all for your comments.
ReplyDeleteMari, I am personally clear of the HPS issue but am fully aware of the condition. My parayers are with your family and you grandaughter.