Tag: albinism

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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Hair Color Changes

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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Update on Vision and Motor Skills

Lyra wears her glasses now all the time, rarely taking them off except for at night. This is wonderful, however now they are nearly too small for her. They are beginning to leave marks on her nose where they are too tight, and they barely reach over her ears. This STINKS! I can’t believe we are already going to have to spend another $200+ for a new pair of glasses. Eventually, thank goodness, she won’t be growing so fast and her glasses won’t need to be replaced as often.

At close distances, those less than 6 feet or so, she seems to be doing great. I don’t notice her putting books right up to her nose anymore. She does stand/sit fairly close to the TV, but then again, so do many fully sighted toddlers. 🙂 I’m anxious to see how she’ll do this spring when she can play outside. How far away can she see a tree, or a car driving by, or a cow, or a flower, or all the other outside things that she hasn’t learned about? 🙁

Her next appointment with her pediatric ophthalmologist is in March. (YES! I finally learned how to spell that word correctly) Anyway, we’ll probably try to wait until then to get her new glasses, in case her prescription changes. Everything else looks good. I rarely see the nystagmus anymore and we have not seen her strabismus coming back.

It is much easier to tell you how Lyra is doing with her vision, fine motor, and gross motor skills by showing you. Here are 3 different videos demonstrating Lyra’s various abilities and quirks. You’ll see in the first video, based on the appearance of the floor, that there’s definitely a reason why the nursery workers at church have nicknamed her the Platinum Tornado. 😀
Notice in the second video how inconsistent her O&M skills can be. She uses her vision and weaves through a room full of toys perfectly one time and then a minute later walk through the exact same path and fall all over the place. It’s hard not to laugh. She is too cute!


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Rotting Her Teeth & Rotting Her Brain

Lyra had her first candy sucker this week. It was quite an interesting and entertaining event. She first got a “taste” of the sucker earlier that day during a visit to the doctor. We had to put it away shortly after the taste, when the doctor came in the room. Later that evening Lyra was digging around in her diaper bag when she FOUND it! You would have thought she stole someones wallet the way she ran off with it . She was sooo excited! She knew EXACTLY what she has found. It was too cute though, we couldn’t take it away…at least not at first. 😛

First we had to get it all on camera. 😀 I apologize for Lyra’s “camouflage” in the video. With her white shirt and white hair against my white(dirty white) wall, occasionally it seems the camera can’t find her… lol. You also get to see a little bit of Lyra’s personality coming out in this video. Near the end, you get to her attempt at saying “Doodlebop.”

Which brings me to the “rotting her brain” part. YES, we’ve started letting her watch TV…but only a little, 30 minutes-1 hr, 3-4 days/week. At first she showed a little interest in watching the Wiggles…until she caught a glimpse of the DOODLEBOPS!!! I can’t stand them, which is probably why she loves them. Actually it’s more likely because of the lively music and dancing and the bright colored characters. And YES, when she watches TV, she stands with her face about 12 inches from the screen…..but it’s not going to “make her go blind” or “ruin her eyesight”. That’s a myth. In Lyra’s case, watching TV may even be good for her vision. She is actively using/learning how to use her vision. If it were uncomfortable or not enjoyable, she wouldn’t attend to it for 30+ minutes. I’m sure jury is still out on this teaching tool, but I’m willing to go with it for now. She’s nowhere near couch-potato.

Also near the end of the video you get to see Lyra use her sign for “help.” Lyra has 5-7 sign-language signs which she uses on a regular basis. Most of them are Lyra adapted signs, definitely not ASL compliant. 😛 Lyra’s language development is a little behind and we are in the process of getting her speech therapy started. This is all worthy of another blog post at another time. 😀


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Vision Update

Cheeeeeese!!!

Lyra had another appointment with her pediatric ophthalmologist a few weeks ago. Her vision continues to improve, however the best estimate we can get as far as accuity is still 20/200. She is too young to obtain visual acuities with standard measures. Dr. Grin is not seeing any recurrence of the strabismus and her nystagmus is less apparent. Lyra hasn’t developed any noticable head tilt that is sometimes associated with nystagmus. Her prescription for her glasses remains the same at +2.75 and +2.5. They didn’t dilate her eyes this time. They will do that at her next appointment in about 4 months. Lyra continues to do better at leaving her glasses on. As long as no one draws attention to them, she really just forgets about them and leaves them alone. Although, at the rate she’s growing, she’ll need a new pair before too long. Uhhhhggg…

A couple of months ago when Lyra had her functional vision update, her vision was assessed using the Teller grating acuity cards. These were used to get a “crude estimate” of near vision acuity. I had heard of these cards before, but I had never seen them and Lyra had never been evaluated using them. The results of this test put Lyra’s near vision acuity somewhere between 20/89 and 20/180. She was able to point to the stripes on the 20/180 card, but not the stripes on the 20/89 card.

It’s hard to know how well she can see at a distance. I know that if she is more than 5-6 feet away from me in a room with other adults, its difficult for her to recognize me unless she hears my voice. This is hard for me to deal with at times…especially when I’m picking her up from the nursery at church. I’ll be standing there next to a couple of other moms and I’ll see Lyra there squinting trying to see if maybe one of those tall mom like figures standing in the doorway might be her mommy. 🙁
I should focus on the positive. Lyra is doing AMAZINGLY well functionally. If not for the glasses, your average person on the street would not know she had a visual impairment. 🙂


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Orientation and Mobility Assessment

 

stairs41.jpg

Lyra had her first Orientation and Mobility assessment on October 16th. She was 17 months old. I had been and still am doing a lot of research on Orientation and Mobility, and the benefits of the services to infants, toddlers, and preschoolers. Orientation and mobility(O&M) is 3 things: knowing where you are, knowing where you want to go, and knowing how to get there.

Do kids with albinism need these services? Maybe…maybe not. It depends on a lot of things. It can’t be determined based on visual acuity alone. It depends on how they are using the vision they have, how they are moving in their environment, and if they are doing this safely and independently. It’s important to know that many children with low vision will figure out how to move around safely and independently in familiar places like home or daycare, without difficulty. However, behavior in unfamiliar environments can be surprisingly unpredictable. Regardless of your child’s visual acuity, it is very important that your child receive a thorough assessment by a certified orientation and mobility specialist. If a child is moving around in his/her environment, whether that’s rolling, scooting, crawling, pulling up, or walking, he or she could potentially benefit from O&M services. Continue reading “Orientation and Mobility Assessment”

Find Early Intervention Services

Lyra has been receiving Early Intervention(EI) services since she was about 5 months old. The level of services and method of services vary from child to child and state to state. These services are provided under the federal law IDEA (Individuals with Disabilities Education ACT). I have come across parents that have never heard of EI services or others that are receiving inadequate services. Children with albinism are AUTOMATICALLY eligible for services based on medical diagnosis. All children should have the option to receive these services. Unfortunately, even with the federal law, some kids don’t get the opportunity. Sometimes its hard for parents to find out who handles the services for a particular state. Here is a website with lots of information about Early Intervention and contact names and numbers for EVERY STATE.

National Early Childhood Technical Assistance Center


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