Parent of a Child with Albinism

“Of all the joys my life brings, a child’s smile makes my heart sing.”
Author: unknown

I finally purchased some of the shampoo I had heard about to deal with Lyra’s “dingy“ hair. It’s called Shimmer Lights, and you can buy it from a beauty supply store, Sally Beauty Supply in my case. On the back of the bottle, it says the product “Brightens white and gray hair, Shampoos away yellow, and Tones down brassiness.”

It really did work quite well on Lyra’s hair. Her hair looks a lot brighter and whiter and clean and shiny. It’s pollution free, at least for now.

One thing you definitely need to do the first time you use it, is dilute it a little. As you can see in the picture below, this shampoo comes out of the bottle in very DARK purple color. If you’re not careful, your child could end up with purple hair. I had to rinse Lyra’s hair multiple times to get all the purple out. For now, I am just going to use it on her hair once a week. We’ll see if that works to maintain things.

I just want to take a moment to say Thank You, to everyone who has ever left comments for me, either on my Guestbook or after individual posts. I can’t tell you how very very much I appreciate the those comments. Your comments have all been incredibly encouraging. It really motivates me to know that this site I created is serving the purpose for which it was intended…to help other parents.
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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

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. (more…)

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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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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Lyra’s hair has started looking rather dingy. I can think of no other word to describe it. YES, I do wash my child’s hair. I just don’t think the baby shampoo is going to cut it anymore. Her hair just has this slight yellowish/grayish tint to it lately. I know it’s not her hair gaining pigment, because its hair all over her head, not just hair closest to the roots. In fact the dingiest looking part of her hair is the hair in the middle and on the ends. It’s kinda gross.
I’m going to have to research this a little more, but I vaguely remember reading something on the NOAH forum about hair absorbing pollution. Yucky! I hate to use some hardcore clarifying shampoo on her hair, because even though she’s got white polluted hair…she still has soft baby fine hair and I don’t want to damage it or dry it out. Hopefully I can find a shampoo that is both powerful yet gentle. Then we’ll just have to go make ourselves a shampoo commercial.

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Although I haven’t been that vocal about it on this site, albinism awareness is something that is extremely important to me. One topic in particular that I have very strong opinions about is how albinism is portrayed on TV shows and in movies. I will educate everyone I know or ever meet in the hopes of making life a little easier for Lyra and other children with albinism.
Some people argue that the treatment of albinism in movies and on tv is no different than any other condition or disability. That’s not true. There are some movies out there that inaccurately portray other conditions/disabilities, but for every inaccurate portrayal, you can find a movie with an ACCURATE portrayal of that same condition/disability. That’s not the case with albinism. With the exception of the movie The Albino Code, written and directed by NOAH member Dennis Hurley, there are no movies out there that present an accurate portrayal of a person with albinism. This has been the largest contributing factor to society’s overall lack of understanding of albinism and false perception of “albinos.” The characters with albinism people have seen in movies have ALL been negative; evil, scary, freakish, mentally challenged…the list goes on. Can you IMAGINE if someone tried to make a movie about an evil character with autism…or a freaky mutant with Down Syndrome? That would NEVER happen, because it’s WRONG. Why is it okay with albinism?
It’s NOT okay!!!

Please view my slide show:

Make an on-line slideshow at www.OneTrueMedia.com

Thank you to all of the parents for sending me pictures of your beautiful children. I couldn’t have made this slide show without your help.

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Lyra show off her musical talents!

I was at my dentist’s office making a payment with Lyra a while back, and there was an older woman finishing up about the same time as us. She had been staring and making baby talk/saying Hi to Lyra for a few minutes. As we were walking out, me pushing Lyra in her stroller, the lady followed outside. Once outside I bent over to fix Lyra’s sun hat. The lady bent over to talk to Lyra and in her best baby-talk voice, said “What are you?” EXCUSE ME… At first I thought I MUST have misunderstood her, but then she said it again, “What are you?”…and AGAIN 2 or 3 more times! ARE YOU KIDDING ME!!! SHE’S A BABY, YOU IDIOT! WHAT THE HECK KIND OF QUESTION IS THAT!?!

Anyway, I was SO STUNNED after hearing these words come out of this woman’s mouth, that I just stood there…speechless…and then walked away. I was really kicking myself later that day for not saying anything. I should have at least given her one of Lyra’s cards.

There’s always something new.

Feel free to add more “Dumb things people say” in the comment section if you like.

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Sometimes the only way for me to deal with things or to get through a situation is to add a little humor. And thats OK… You need too be able to laugh it off once in a while. It’s kind of therapeutic for me and sometimes keeps me from bursting into tears. For example, when Lyra got her outfit made out of UV protective material for her birthday, I said “Look, she got a HAZMAT suit” or when I say she is like a pinball when she walks around bumping into things. However I would have very likely become defensive if someone else would have made those comments first. Of course she is still a baby and I will be careful not to say things like this when she is old enough to understand. You can see a pic of the outfit below.
Other times, laughing it off means I need to make a sarcastic comment in response to someones question thus preventing me from blowing up or smacking them. Generally the questions and comments are sincere, but occasionally there are the questions that are just plain stupid. For example, on Sunday afternoon we were at a restaurant and I had Lyra in the bathroom washing her hands. A young adult came up to us, with eyes WIDE OPEN, and asked, “Is that her REAL hair color?” I replied with something I read on the NOAH forum and said… “No, we hold her up by her ankles and dunk her in bleach once a week.” Then I walked out of the bathroom. Seriously, why would her hair NOT be her natural hair color.
Other times I just get bored with answering the same old question the same old way. I posted a question on the NOAH forum looking for some variety in how to respond to “Where did she get all that white hair?” Here are some of the suggestions I got from various NOAH members:

• It is all in the genes!
• From God.
• I drank alot of milk when I was pregnant.
• The supermarket–aisle #6, Loreal color #35, $10.00 and you too can have the same color!
• It was “special order.”
• From Santa Clause.
• From the mailman.

Some of those aren’t really untrue, just a little more interesting. Others are obviously just a bunch of baloney. I’m not condoning lying. Sometimes I just gotta make it through the day.

Here is a link to a section on another parents website called “Dumb Things People Say.” It really cheered me up when I first read it when Lyra was only a couple of months old.
Dumb Things People Say

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