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

blur

5 pics


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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.
Lyra’s updated “business” card

KC Bowls for NOAH

Heather, Lyra, and Dominick bowling for NOAH’s Bowl-a-Thon
Bowling 2008 1

Okay, so not EVERYONE in Kansas City participated in the 2008 NOAH Bowl-a-Thon yesterday, but the ones who did, had a really great time! I’m terrible when it comes to event organizing, but I’m a pro at procrastinating. This year our bowl-a-thon team had a total of 8 team members, including our 5 family members. 😀 That’s 2 more than we had on last years team…so I’ve made progress. Unfortunately, one of our team members, 5 year old Mark, came down with a cold and stomach flu on Saturday, so he and his mom Debbie were not able to make it. 🙁 We were sad they had to miss it, but hopefully we’ll be able to get together another time. Heather and I talked about planning a local NOAH picnic or something this summer.

Even though the actual bowling is over, we still have a couple of more days to continue fundraising. Yay!!! So this is your last chance to help us out. 😀 I should have posted this weeks ago. Live and learn I guess. If you’d like to help out, please click on the link below to donate and help Lyra in NOAH’s 2008 Bowl-a-Thon. You’ll have the option of donating anonymously if you prefer not to leave your name.
Click Here to Donate/Sponsor Lyra

Once you get to the website, click on the link that says “sponsor me.” You can see more bowling pictures in the Photos section of this site.

Thanks.

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Siblings of a Child with Albinism

Lately I’ve been thinking about why I created the category on this site called Dominick and Rebekah. At the same time, I’ve been thinking about or feeling like lately I’ve been spending an enormous amount of my time focused on Lyra’s needs and neglecting the needs of Dominick and Rebekah. Have they noticed? I’m sure they have. A couple of friends and family members even questioned me about the time I’ve been spending on Lyra compared to my other two. How has it affected them? I have no clue, at least right at this moment. Apparently I’ve been too busy to notice, and that’s a problem.

So this is the type of post that would fall under the category Dominick and Rebekah. How does having a child with albinism affect the lives of his/her siblings both in positive ways and in negative ways?

Earlier this week, an interesting post popped up in my blog reader from a blog I recently subscribed to, Parenting Special Needs on About.com. The post was entitled: What Siblings Would Like Parents to Know. I think it was exactly what I needed to read and exactly when I needed to read it. A couple of things I read in it really jumped out at me.
The first, was that siblings of a child with special needs will be in the life of that child longer than anyone else. Dominick and Rebekah will have a relationship with their sister long after I’m gone. What kind of relationship do I want that to be? Of course I want it to be a positive relationship. I want them all to be close, and to love and care for each other. The last thing I want to do is cause Dominick or Rebekah to feel resentment. What if I’ve already started to do that?

The other point in the article that jumped out at me was this: “One child’s special needs should not overshadow another’s achievements and milestones.” This made me think back to a couple of weeks ago. Dominick turned 6 on January 31st and we had a birthday party for him the following weekend. However, because I didn’t bother to send out the invitations until a week before the party, only 1 of his friends showed up at the party. He didn’t seem to mind, and he had a blast with his one friend, but I’m sure at some point he thought about it and was a little sad. It was MY fault, but who would Dominick blame…me…or Lyra?

I know this is just one experience/situation and ONE experience doesn’t make or break a relationship. I may be reading more into it, but at the very least, it’s been a wake-up call. I need to pay better attention to how I’m spending time with my children and how equally. I need to remind myself that I as I raise my children, I am laying the foundation for their evolving relationship as siblings and ask myself if I want that relationship to be positive or negative.

Here are a couple of resources I found related to the subject of siblings of children with special needs:

The Sibling Support Project

Children with Disabilities: Understanding Sibling Issues


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A Tisket, a Tasket, a Baby in a Basket

These are the kinds of things that Daddies teach their babies… You can never have too many videos of Lyra. : ) This is her showing off her new trick; and then later, just plain showing off. Here are the lyrics to the song she is attempting to sing. It is our special version of ‘Row, Row, Row Your Boat’ that we learned from Lyra’s teacher, Miss Kim.

Row row row your boat
Gently to the shore
If you see a lion
Don’t forget to roar…ROARRR!

Row row row your boat
Gently down the stream
If you see an alligator
Don’t forget to scream…AHHHH!


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