Parent of a Child 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…)

‘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

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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.

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

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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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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