Parent of a Child with Albinism

I post a lot of videos of Lyra. I do this not just to entertain, but also to support my overall purpose of starting this site. I’m not sure if they really HELP other parents of children with albinism.  I hope that for NEW parents of a child with albinism, watching these videos gives them comfort.  I want encourage them and show them that everything is going to be okay.  By seeing how happy, and NORMAL, and silly, and beautiful Lyra is, maybe they will worry a little less, smile a little more and have hope for their child’s future.

Plus…I’m her Mommy…and I HAVE TO show her off. 

This past spring, our family attended an event at our local Children’s Center for the Visually Impaired called Literacy Lollapalooza.  This all day workshop type event included a variety of sessions designed to promote literacy in children with visual impairments.  One of the activities that was talked about in a couple of the sessions was making your own book, specifically making a book about something in your childs life, an “experience book.”  You could write a book about a visit to grandma’s or a trip to the zoo.  You could make a book about a daily routine like making dinner or bath time.  You can draw the pictures for your book, use real photographs or even cut pictures out of ads and magazines.  Let your child help as much as possible by drawing or pasting pictures, putting pages in order, even providing the words for the story by telling you what a picture is about. (more…)

This is HILARIOUS!   It is Lyra dancing, singing, and playing a pitch pipe!   She is such a ham! 

Most parents know how hard it can be to get your child to “perform” on command, but I decided to give it a shot. Here is Lyra showing off some of the words she’s learned over the last couple of months.   She has been receiving regular speech therapy for the last month.  Lyra even mentions her speech therapists name, Scott, in the video…hmmmmm…  I swear it was just a coincidence. 

Okay so I found some time to make this video.

This is my attempt at zooming in on Lyra’s eyes so that you can see the degree/severity of her nystagmus. I apologize for my crappy camcorder skills. Between me not holding the camera steady and Lyra’s wiggling, it’s hard to know what shaking is actually her nystagmus. Every once in a while I was able to catch her holding still with her eyes wide open. Look for those moments and then you should see her nystagmus.

The first part of the video was filmed in the early afternoon and the second half was right before her bedtime. Sometimes her nystagmus is more noticeable when she is tired. See if you can tell a difference. I couldn’t.

Nevermind my singing…LOL… I promise I really do have a degree in music education.

This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

I have added quite a few more kids since I first wrote about this, so I am just reposting it and adding it to the video section.

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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 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. (more…)

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:

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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 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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Lyra got her first haircut on Saturday. She did GREAT! I think it was harder on me. She’s had a mop on her head for quite some time, but I just loved it so much I wouldn’t take her for a haircut. It couldn’t wait any longer, so a friend of mine cut her hair while I watched and video taped.

Lyra show off her musical talents!

We’ve had some surprising new developments on the stairs this week. Notice how she looks down AND feels the edge with her foot. She’s a very quick learner. We’re so proud of her.

Lyra has learned how to safely go down the stairs. We had to teach her to do this through a lot of repetition. Some friends of ours had taught their two daughters to go down stairs like this, so we had to give it a try.

Please excuse the TERRIBLE audio on this video. You may want to just turn the sound off.