Month: March 2008

New Sun-Protective Clothing

I was browsing through the catalog I received yesterday and found that One Step Ahead has some new sun-protection items.

I am definitely going to get the outfit in the first picture below. We bought last year’s version, which was actually a one piece, but still similar. I’m pretty sure it is made out of the same material. It is VERY light weight and breathable. It doesn’t get hot and sweaty and sticky like t-shirts do during the hot summer months in our extreme Kansas humidity. One Step Ahead describes the clothing as “cool and comfortable, breathable, quick-drying, and antimicrobial. It is UPF 50+ protection.

UPF stands for Ultraviolet Protection Factor and is used to measure the protection factor of clothing like SPF is used to measure the protection factor of sunscreen and make-up.

The outfit in the second picture is really more of a wetsuit. It has the same UPF protection and is also salt, and chlorine resistant. They have a lot of other sun-protection clothing items in their Sun Smarties collection which I LOVE.

I also found a really neat outdoor sunshade/tent. That is the 3rd picture below.

You can find all of these online at One Step Ahead. Just do a search for “Sun Smarties” to find the clothing and “shade” to find the tent.
If you go to the One Step Ahead online store through I-Give, then 4% of your purchases is donated to NOAH and it doesn’t cost you anymore. You can get to the I-Give website from the link below.

NOAH I-Give

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Bubbles Bubbles…Pop!

Lyra has been exceeding all of my expectations with her vision. She has seen things or done things I thought would never happen. Like all kids with albinism, Lyra has multiple eye problems that contribute to her overall low vision. One of those is nystagmus which is an involuntary rhythmic shaking of the eyes. Lyra’s nystagmus is very mild most of the time, but it gets worse when she is concentrating hard or tired or not feeling well.

Tracking or following moving objects can be very challenging for someone with nystagmus. Seeing something that is clear or “see through” when you have low vision is also a challenge. Playing with and popping bubbles in the air is an activity that requires BOTH! It is something I could have never imagined Lyra being able to do. It was one of the many things I’ve thought about in the past….things I’ve worried about…worried that Lyra would never get to see and experience. They’re the little things we take for granted.

Well Lyra CAN pop bubbles…and chase them and point to them and stomp on them and even try to eat them! 😀 She was even able to follow and point to bubbles I’d blown when we were playing outside…in less than optimal lighting conditions.

I am thrilled that Lyra is doing so well, but I’m still always on guard. I’m not going to hold her back, but at the same time I don’t want to expect too much because I don’t want to be disappointed. I get so excited when I see her able to really see things that I wouldn’t expect. I’m definitely more hopeful for the future. With that hope and my prayers, someday, maybe she’ll get to see that shooting star after all. 🙂

Early Session with TVI and OT

This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

Resources

Albinism Information

NOAH -The National Organization for Albinism and Hypopigmentation- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.

Albinism International -An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.

Albinism Fellowship UK –An organization that aims to provide information, advice, and support for people with albinism and their families.

SARA Foundation -Supporting Albinism Research and Awareness- A site created to help parents who have children who are diagnosed with albinism.

Positive Exposure – Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.

The Hermansky-Pudlak Syndrome Network Inc. –The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

American Nystagmus Network –A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.

Hadley School for the Blind –Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.

The Low Vision Gateway -A comprehensive list of low vision resources from around the world.

Vision of Children -Information about current medical research, outreach, and education.

NAPVI -National Association for Parents of the Visually Impaired- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

Alana’s Albinism Site

Amber’s page

Emerson Porter

William’s Site

Joseph Andrew

Skate Angel

Life in Noodletown

Ramblings of Casey

Websites/Blogs of adults with albinism

Heather Kirkwood’s Blog

Bianca Knowlton’s Site

Nicole’s Site

Annette’s Blog

Commercial Websites

Solar Eclipse -Sun protective clothing

UV Sungear –Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.

Baby Ride -Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.

Sun Togs -Sun protective clothing for all ages and cool kids sunglasses.

North Solar Screen -Various types of window tinting and window shades.

Llumar Window Film and Window Tint – Professional glass film/tinting for home or auto.

Industrial Shadeports – Custom build shade structures

Protect-a-Bub – Sun protective clothing and accessories.

One Step Ahead -They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

SENSwitcher -Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.

Seedlings -A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.

Library Reproduction Service – Large print books for children and adults and Large Print reproductions of educational materials for special needs students.

Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.

Articles

Socialization and the Child with Low Vision

The Role and Function of the Teacher of Students with Visual Impairments

Coming Soon… more blurbs, more personal websites/blogs, commercial websites.


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Shop-Toys, Books, & Sun Protection

After working on this little project for over a month now, I am finally ready to present this to all of you:

Because of the unique needs of children with albinism, it can a very challenging task finding helpful products. I thought it would be nice if parents could find toys and books that are good for low-vision and also sun protection products all in one place. I created an Amazon store and then searched through the hundreds of thousands of products on Amazon.com to find the ones I thought were the best. My selections were based on my research, personal experience, and personal opinion. By no means is this the only place on the web where you can find these items, however it would take you long time to try to find all of these on your own. I will continue to add products over time, including increasing the number of toys for older children. In case you’re wondering, I earn 4% on all purchases made through my store. So this means I earn a whopping $4 for every $100.00 spent, so I don’t expect to get rich through this project. Any money we do earn will be used toward our trip to the upcoming NOAH conference in July.
Thanks for shopping!
Please email me if you have any questions or if you have any suggestions for products to add.

Click on the link below to visit my store:

Toys/Books/Products for Children with Albinism

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