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. πŸ™‚ 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? πŸ™

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. πŸ˜€
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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Albinism Awareness

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. πŸ™‚


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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. πŸ˜›

First we had to get it all on camera. πŸ˜€ 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. πŸ˜› 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. πŸ˜€


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