albinism Archives - Page 3 of 6 - Parent of a Child with Albinism

Vision Update

I have been meaning to post this for several weeks. Lyra visited her pediatric ophthalmologist for a check-up last month.

They dialated her eyes this time to see if her refractive error had changed, and it did. Her prescription changed from +2.50 to +3.25 in her left eye and from +2.75 to +3.75 in her right eye. It’s not a huge jump or anything, but to change that much in only 6 months freaks me out just a little. Dr. Grin said her biggest issue is her astigmatism. She said it is fairly common for people with albinism to have a significant astigmatism.
So she is getting new glasses. We decided not to get her the transition lenses this time. With Lyra becoming more comfortable outside, I worried that the transition lenses just wouldn’t be dark enough. Instead we are getting her a pair with clear lenses and also a pair of prescription sunglasses. Hopefully we will have them in a week or so.

The health of her eyes is good, no problems there. Dr. Grin said the alignment of her eyes still looks great and her nystagmus is very minimal. I’ve said this before, but I rarely notice her nystagmus at all. I often wonder how this compares to other kids with albinism. I say her nystagmus isn’t that bad, but what does that mean really? As soon as I have some time (Ha Ha), I am going to get a close up video of her eyes and her nystagmus and post it on here so you all can see exactly how bad or not bad it is.

As far has her functional vision progress goes, I have just one thing I want to mention while I’m thinking about it. 🙂 She is doing really good with walking up and down steps inside on her own. When walking up or down steps outside, she is extremely hesitant and ALWAYS needs help. She clutches my finger tightly and I have to say “step” for EVERY step so she knows to feel for it with her foot and then go up or down. I really don’t think she has a clue where the next step is. It just tells me how much her sensitivity to those bright lighting conditions can affect her overall visual abilities.

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

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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Blog On

It looks like more and more mommies are getting the hang of this blogging business. Here is the blog of a mom, Cassandra, who has become a true friend of mine. 🙂 She has 3 beautiful daughters, 2 of which have albinism, and she is due to have her 4th baby in October.

Ramblings of Casey

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

Albinism and Photography

One of the first things any new parent of a child with albinism learns, is that taking good photos of his/her child can be an unbelievable challenge. Why? Because of the red-eye effect caused by the camera flash. I was able to find a really great explanation for what causes that red-eye effect on the blog Photocritic.

After reading that and understanding why it happens, it’s easy to see why it’s even worse if the person has reduced pigment in their eyes. It’s not like the typical red eye you see in photos of people without albinism, which can be corrected with a red eye reduction program. Because of the lack of pigment in the eyes, the flash causes a much brighter and bolder red or hot pink color, not just in the pupil, but in the entire eye.

The brightness varies for each individual depending on the amount of pigment they have in their eyes. In Lyra’s case, if you try to use red eye reduction, it just colors her entire eye black. I’ve tried using Photoshop to manually edit her eye color, but it always ended up looking fake or cartoony. I’ve tried using the flash at various angles and distances. I’ve tried filtering and deflecting the flash. In the sequence of pictures below, see the second and third pictures, taken from 10 feet and from 20 feet away. Nothing helped to reduce the red eye. One option I had would have been to continue to use the flash and then just convert all of her pictures to black and white. I wanted color pictures of my baby, so I decide to give up flash photography all together.

Low light photography, especially indoors, is NOT easy for your average non-professional photographer. The first thing you realize after snapping a few pictures is that if the camera or your child moves AT ALL, you end up with something resembling a Monet. You can see an example of this in the first picture below. In my opinion, to be able to successfully take pictures in low light you really must have a digital camera, because you will likely need to delete the 75% that turn out blurry. Having a really good digital camera is nice, but knowing how to use it is even better.

After doing my research, I learned that 2 of the main things you need to understand as far as camera settings, when dealing with low light photography, are aperture and shutter speed. I don’t know this stuff as well as I should, but basically aperture deals with the size of the opening where light enters the camera and shutter speed affects how long that opening stays open. It can all be very confusing and annoying overall. Having a really fast shutter speed is good, but not TOO fast or not enough light will get in and your pictures will turn out dark. Other times I’ll finally get the shutter speed nailed down, but then I’ll have the aperture setting too low and my pictures turn out too bright and discolored. You just have to find a happy medium.

The BEST place to take no-flash pictures is outside. Unfortunately our babies/kids are very light sensitive and usually we like them to have their eyes open when we take their picture. 😛 When Lyra was really little, she rarely EVER opened her eyes outside. Now, in the evening after the sun goes down or on a really cloudy day, she’ll keep her eyes open. The last 2 pictures in the sequence pic below were taken at dusk. She squints a lot outside, but her eyes are definitely open.

When I take her picture inside, I have to turn on every single light in the room and open the curtains, but if she moves even a little, we end up with blur. It would be helpful to have a tripod as well. Even when I don’t feel like I’m moving the camera, I know there is some subtle movement or even just vibrations in my hands. The first picture in the sequence below was taken inside just before the outside ones, so because it was dusk, I didn’t get much light coming in from the window.

Overall, I prefer the way the coloring turns out in pictures taken outside compared to no-flash ones taken inside. One of these days I will buy myself a better camera and then maybe a year later I’ll figure out how to use it. 😛 My photography skills have improved significantly since Lyra’s newborn days, but I can always do better. Here is a helpful article with a lot of information and tips for low-light photography: No-Flash Photography In Low-Light Situations

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Speech Evaluation & IFSP Update

‘Ehhhwhoa’ and ‘Buh-bah’= Hello and Goodbye

Lyra’s speech development is still delayed, and she has yet to begin receiving actual services from a speech therapist. This will begin next week. She was evaluated in October, but the evaluation was incomplete. In addition to that, staffing issues caused a delay in beginning services, so we had to get another evaluation completed by a different speech therapist. It has been frustrating to say the least. Hopefully everything will go as planned next week and Lyra can get started.
At this point, she’s just making gestures (thank goodness she learned a bit of ASL) and grunting. But she’s trying to speak- she’s using different inflections in her voice and chaining sounds together. She plays a game on the computer called ‘Giggle’ and when she wants to play it, she says “guh-guh”. ‘Hello’ in Lyra-speak is “ehhhwhoa”. Goodbye becomes “buh-bah”. She knows what ‘hot’ is, and to her it’s ‘haaht’. The word ‘yeah’ is a long drawn-out, whispery kind of “yeeaahhh”. It’s all about communicating, and Lyra is clearly displaying frustration in her ability to do that. Like any parent, I understand my child’s unique vocabulary better than anyone else, I just wish that Lyra could be understood by everyone else too.
You can view her Speech and Language Evaluation and IFSP by clicking the links below.

Lyra’s Speech Evaluation

Lyra’s Updated IFSP

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Lyra’s Updated “Business” Card

We have recently updated the “business” cards we had made a while back. We changed the pictures, replacing them with more recent ones. I also changed the wording on the back slightly. In case you haven’t seen the previous post about how/why we made these cards, you can view that post here: Here’s My Card

We designed and ordered them through Vista Print. They’re always having special deals and you can also get other types of personalized products; magnets, address labels, calendars, pens, etc. Below is a picture of the front and back of Lyra’s card.

Click on thumbnail to view full size.