October 2007 - Posts

• The Mac Miracle

  Troy (Lyra's daddy) has been bugging me (Lyra's mommy) about buying a Macintosh computer FOREVER.   It had become quite comical.  I would be working on video/photo editing stuff on our PC and I couldn't do something I wanted to do with them...Troy would jump in with, "You could do that if you had a Mac"...or I'd be complaining about all the spyware on our PC and Troy would quickly reply, "You know what doesn't get spyware...a Mac!"  He was ALL ABOUT THE MAC. I had read the posts on the NOAH forum and read the recent article in Albinism Insight about the benefits of Macintosh computers to people with low vision.  But me, being the mom and the more practical one, thought Macs were overpriced and that we had much more important things we could spend money on. Finally...after months of consideration...I gave in.  This week, Troy got his Mac.  The very first thing he did after getting it all set up, was plop Lyra down on his lap, in front of the monitor, and took her to the Senswitcher website to play. Before I go any further...let me just remind you all what the title of my last blog post was... "Getting Her Point Across"  It was all about Lyra's inability to POINT at things, pictures, people, etc.   I know it might sound silly, but this was a BIG DEAL to me...it seemed like such a simple task, but no matter how hard I tried, she just wouldn't point.   I think she just CHOSE not to...just to irritate her mother. AND THEN!!!   WOULDN'T YOU KNOW IT!!!   Daddy puts her in front of the Almighty...Incomparable MAC... Up pops a picture of a kite on the Senswitcher game, and WHAT does Lyra do? ? ? ? ? ?  She POINTS to the picture!!!   My jaw dropped and my eyes popped out of my head! Then what does daddy say... "Seeeeee............Macs ARE better!" Lyra had made his case for him.  P.S.  I DID actually happen to have the camera in my hand.  I wanted to take a picture of Lyra in front of the Mac to go along with a post on Lyra's website about technology for children with low vision.   I didn't expect the pointing surprise. Posted Oct 25 2007, 10:03 PM by MomInKS with 2 comment(s)

• Visually Impaired Users: Second-class Citizens in a Connected World?

  No doubt many of us that frequent the NOAH forums are aware of a lawsuit currently winding its way through the US court system. It is case involving the Target corporation, one of the largest retailers in the United States. The lawsuit isn't related to the physical bricks-and-mortar locations, it's about the accessibility of Target's website, http://www.target.com. Without getting into too much legalese, the gist of the lawsuit is that Target's website is not accessible to blind and visually-impaired users. Now, while I don't have first-hand experience in trying to use Target's website with assistive technology, I am a professional web developer, so I am familiar with accessible guidelines and accessibility laws. What makes this court case potentially so ground-breaking, is that the case has now been granted class-action status. Now it's no longer one person suing Target- it's thousands of blind and visually impaired users suing Target. Those users are being represented by the National Federation of the Blind. You can read more about the lawsuit over at News.com. Other web developers have written some great articles about this lawsuit, and I don't want to rehash what they have said. If you want their perspectives, read Jeremy Keith's article at Adactio.com, Joe Clark's article at fawny.org, and Roger Johannsson's article at 456bereastreet.com, and Christian Montoya's article at his web site. I've left a few comments there, if you care to read them... Jeremy Keith's article was the inspiration for this post. He wrote about the comments being posted on two very popular web sites frequented by web "professionals" (I use the term lightly, because some of the comments aren't very professional). I'm not going to give them any link love by posting direct links here, but Jeremy has direct links from his site. I would encourage all of us to visit those sites and kindly let the commenters know that they are wrong ;) As someone who makes a living doing web development, I'm ashamed to be associated with developers who don't care about accessibility. To me, it's a fundamental rule of web development. Sites should be based on accessibility, but too often it is an afterthought. I'm not talking about just adding a few "alt" attributes either- I'm talking full-on structure, content, colors, etc. So many developers don't get it. It's either ignorance at best, or arrogance at worst. Either way, it's wrong, and developers that don't get it shouldn't call themselves "professionals". P.S. This could apply to other professionals as well (doctors, pediatricians, teachers, social workers, etc...) Being a professional means being better- educated, skilled, or whatever...  Posted Oct 15 2007, 12:45 PM by DadInKS with no comments Filed under: education, accessibility

• Strabismus/esotropia surgery

  Hello everyone!  Sorry its been awhile since my last (first) post!  September was CRAZY!  I don't know where it went!  I think the main reason it seemed to fly by was that at the end of August, our PO said the big S word - "Surgery".  Our little Rachel needed to have surgery for the esotropia.  The atropine drops in her strong eye (for 8 weeks) had worked to turn her weak eye back "on", but the muscles were still tight.  So then it was time to cut.  Yuck!  My stomach lurched when he said that.  I had two voices in my head:  the stable, health-care worker voice was saying "this is an easy, quick, outpatient procedure.  No big deal."  Then the paranoid, panicky mom voice answered "Yea, but this is my 15-month baby girl!!!!!  What about the anesthesia???  What if she has trouble waking up???  What if, what if, what if"  It was non-stop.  So most of the month was spent in anticipation of the 25th.  I could go in to lots of detail, but lets just say that everything went really well, I am extremely happy to report.  She had a little bit of a problem in the first stage recovery because she still had gunk in her lungs from a cold a month prior, but nothing major.  The happy news is that her eyes are straight!!  Now when she looks at me, both of her big, beautiful, blue eyes are looking right at me!!!  That was a great feeling!  We are now 2 weeks out, and there is just the tiniest bit of redness left in the inside corner of one eye.  She didn't rub her eyes at all after the first day, and it seems like she's seeing better.  Unfortunately we had to keep the glasses...I was kind of hoping to get rid of them but the "surgery just corrected what the glasses didn't" according to my PO.  Sammy, her twin, doesn't have to wear glasses (yet) and he still messes with her's anytime he can get them away from her.  I have noticed that she is peering over the top of them more often since the surgery, but I think that's primarily because the lenses are so scratched up they look like road maps!!  The PO is going to check her prescription at our next appointment in a month, so we'll just keep dealing with these. This surgery did get me to thinking though... I wondered what the nystagmus surgery procedures were like, and if they would be beneficial for Rachel and Sam down the line?  So, if anyone reads this and has gone through the nystagmus surgeries, I would really like to hear how it went for you.  From what I've found on the internet (that good ol' trusty source), the surgery is mainly for kiddos who have a pretty significant head tilt to find their "quiet" point.  It returns the null point with eyes in midline and might decrease the amplitude of the nystagmus but not the frequency...or something like that.  Anyways, if you have any comments on this surgery, please let me know.  I have seen threads about this on the discussion board before, so I'll go back and read those more closely. My other question was related to the esotropia surgery.  Has anyone gone through this surgery - then had to do it again later?  Our PO said it was about 80% effective the first time, so I'm just curious if anyone has experienced that. One my last posting, I think I talked about how Sammy seems to have some depth perception difficulties.  He had been getting down to crawl over the cracks in sidewalks or changes in floor texture rather then stepping over them for about 2-3 weeks in August.  But he's not doing that anymore, so now I don't know if its depth perception or just unsure about how to maneuver in his environment.  Does anyone else have problems figuring out if the behaviors you observe in your kiddos with OCA are related to their reported vision problems, or just part of being a kid?  I have trouble with that all the time.  If the kids didn't have nystagmus, you'd have a hard time convincing me that they have vision problems right now.  One a daily note, I'm happy to report that we have officially entered toddlerhood...and all I can say is that I hope we survive the next 2-3 years!!     We have started to witness temper tantrums, fights over toys, hitting, biting, and "divide-and-conquer" techniques.  The kids are in to everything, love to climb on furniture, and have to taste everything they find.  But we're also getting the running hugs, toddler-ese conversations, twin-to-twin hugs, blowing kisses, and new words every week, so we're still having lots of fun.  Anyways, that's all for tonight.  I'm looking forward to hearing what other people have experienced with nystagmus or esotropia surgeries.   Posted Oct 10 2007, 09:27 PM by twinmamma with no comments Filed under: Parent of kids with albinism, albinism, children