O & M Patrol


On Saturday March 31st, my husband Troy and I participated in a training session through the Children’s Center for the Visually Impaired called O&M(orientation and mobility) Patrol. The goals were to get an idea of what its like to live with low vision and to gain a better understanding of various ways to improve orientation and mobility for our daughter. There were a total of 48 parents and grandparents of children with visual impairments. First, we listened to/watched a presentation covering the basics of orientation and mobility. Orientation is knowing where you are in space and where you want to go and mobility is being able to carry out a plan to get there. We learned a lot of great techniques, activities, and tools to help at all the various ages and stages of our child’s development. We even got to look at and play with a few “mobility tools” like a white cane and this electronic sensor thingy that vibrated in your hand when you walked too close to an obstacle. Honestly, before this training, the idea of Lyra ever using a white cane to get around gave me a huge lump in my stomach. It’s not such a scary thought anymore.
After our classroom instruction it was on to the field training. We were all grouped into pairs and then assigned a coach. Troy and I were together. Each group was given a pair of simulator goggles that simulated as closely as possible, the vision of their child. Our goggles simulated 20/400 vision. They also gave us money…$3.25…wooohoooo! I wore the goggles first. All 48+ of us had the same assignment. We had to walk out of the building to the bus stop on the corner, take the city bus to Crown Center Plaza (DON’T FORGET TO ASK FOR A TRANSFER), walk around the shopping center and buy something for less than $2.00. Then we switched, and Troy basically did the same thing and then took the bus back.
At first, wearing the goggles was a little nauseating. Even just walking was weird feeling. One difference that I noticed right away was my depth perception. Its hard to sit down on a bench when you aren’t exactly sure how far away it is or knowing where to put your foot to step onto an escalator. I couldn’t read street signs from the bus and when we went into a coffee shop to buy something I couldn’t read the menu. Thank goodness I had my “sighted guide” Troy there to help me order my coffee. I also frequently found myself putting my face really close to things. I doubt someone would want to buy any of the bagels after watching me with my nose an inch away from them trying to see what kind they were. That kind of made me sad…worrying about what onlookers might think of my child. Overall, my vision wasn’t THAT bad, which was comforting. I would have liked to take the goggles home to wear longer and see what it would be like to do all the stuff I normally do with low vision.
This program was a wonderful learning experience. We each received our own little award certificate in recognition of completing the O&M training. We were also sent home with a huge packet of information and resources for orientation and mobility. And even though it only lasted a short time, I was very grateful that I had the opportunity to take a look at the world through my daughter’s eyes…kind of.

Here are some articles/links for more information:

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My daughter Rebekah is 11 years old. I have a unique and special relationship with her that different than my relationship with Dominick and Lyra. Part of this is because I was very young when I had her and in many ways we grew up together. Consequently, I am quite protective of her and cautious in my decision making with her. Another reason we have this close relationship is because we are so very much alike, in our behaviors, attitudes, and even looks. Sometimes its as if I’ve made a little clone of myself. This is frightening because I look back on mistakes I’ve made and don’t want her to repeat them.
Like me, she is a worrier. One thing she got from her dad is her intelligence. Rebekah is gifted. She thinks in ways I will never understand. These to traits combined really affect her relationship with her sister Lyra. She wants to know everything she can about albinism and how it will affect Lyra. She wants to learn braille and about the anatomy of eye. If we can’t answer her questions, she’ll look it up. She worries about the future and about all of the what ifs that I’ve fought so hard not to worry about. She’s is protective of Lyra and wants to be able to answer other people’s questions. I know she loves her baby sister very much and I think the two of them will have a great relationship despite the 10+ year age gap.

Sun and Skin Protection

Product Recommendations, Tips, and Resources

Less is more when it comes to the number of ingredients in skin care products.

– Ingredients like zinc oxide, titanium dioxide or Parsol 1789 offer the best sun protection.
– Recommended brands include Vanicream SPF 60, Neutrogena SPF 55 or 70, Neutrogena Sensitive Skin SPF 30, and Total Block. (Although Total Block needs to update their website with an accurate and more current description/definition of albinism)

For dry skin care (recommended by dermatologist)

-Dove for Sensitive Skin
-Oil of Olay


-Aquaphor ointment
-Vaseline ointment
-Eucerin cream
-Cetaphil creamDetergent

-Tide Free
-Cheer Free
-All Free and ClearDiaper rash

-Triple PasteTips from Dermatologist
-Sunscreen should be worn on sunny and cloudy days and all year around.
-Reapply during prolonged sun exposure or after swimming or heavy sweating.
-Avoid sun exposure during 10AM and 4PM.
-Wear a broad brimmed hat.
-Wear sunglasses.
-Wear sun protective clothing. (See list below)
-Protect skin from sun coming through windows at home and in your car. (See list below)
-Sit in the shade whenever possible.

Sun Protective Clothing Resources
UV Sungear- http://www.uvsungear.com/dar106.html
Solar Eclipse- http://www.solareclipse.com/
Sun Togs- http://www.sun-togs.com/page.home

Home/Auto window tinting and shades
North Solar Screen- http://northsolarscreen.com/index.html

Llumar Window Film and Window Tint- http://www.llumar.com/

Industrial Shadeports- http://www.shadeports.com/



Other Great Resources
Protect-a-Bub- http://www.protect-a-bubusa.com/index.shtml
One Step Ahead- http://onestepahead.com/home.jsp
They have a variety of products for babies and children, including many for sun protection.

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Vision Skills


Today Lyra and Miss Kim, her “teacher of the visually impaired” worked on putting on and taking off stars on her star stacker toy. She is pretty good with the taking off, but not so coordinated when it comes to putting them back on.

We also read some books, encouraging tactile exploration. She did some good looking at the pictures, but she seems to be much more interested in turning the pages and eating the book. Kim suggests we try to get her to explore the various textures of touch & feel books. We need to get some more touch & feel books or just make our own.

One of our favorite activities with Miss Kim is playing with our box of stuff. Its just a small orange box that we filled with various toys/objects. We work on taking out and putting in, identifying or finding objects by name(“Where’s the duck?”), uses of some of the objects(hairbrush, telephone), and anything else we think of. We keep the same things in the box all the time.Here is what we have in it: ball, book, duck, egg shaker, baby, two green blocks, sunglasses, hairbrush, telephone, shoe, and a binky.I think that’s all. I think she is saying “duck” when she pulls that out, but its definitely debatable.

Today Lyra was able to follow a ball across the room

and retrieve it twice. Yay!!!!!

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First Visit To a Dermatologist

On March 27th, Lyra had her first visit with a pediatric dermatologist. The doctor provided a lot of great advice and suggestions and showed a lot of expertise in the areas of skin care and sun protection for a person with albinism.
However, I was extremely disappointed by her lack of general knowledge regarding albinism. She asked me how I knew Lyra inherited albinism from me and my husband.
Does she not know albinism is a genetic condition and the ONLY way Lyra could get oculocutaneous albinism is by inheriting it from me and my husband because it is an autosomal recessive gene. The only type of albinism that isn’t autosomal recessive is a form of ocular albinism that is X linked. You can’t “get” albinism any other way…its not leprosy.

Also, she asked me if Lyra had any hearing problems, because “sometimes people with albinism have hearing loss.” WRONG!!!!!! This is SOOOO incorrect. I wasn’t sure at the time she said this, but I’ve done my research. The only condition even related to albinism, that does include hearing problems, is called Waardenburg syndrome. In the definition, it is referred to as “partial albinism” and it is an AUTOSOMAL DOMINANT condition. There no forms of oculocutaneous albinism in which hearing is affected.
If this dermatologist did happen to treat a person who had albinism AND hearing loss, then the hearing loss was caused by some other condition…not the albinism.
Parents of a child with albinism have enough things to worry about without someone telling them their child may have hearing loss.

Lastly, she referred to Lyra as having pink eyes. Now I know sometimes when the bright lights are shining directly into them, they my APPEAR pink, but Lyra has BLUE EYES! This is a huge pet peeve of mine. There is no such thing as pink iris color.
She is a doctor and should know this.

She did refer me to NOAH, which I am already a member of, but I think she needs to visit their website and do a little homework.

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