Ocular Albinsim Findings

I wanted to do a little post on Hagen's Albinism, I have been learning a lot of things about it and I find it all so interesting.  From the first time I looked in Hagen's eyes I knew something wasn't right with them.  I kept telling myself that he would grow out of it and that it was no big deal.  When it became apparent that he wasn't growing out of it, I decided to deny that there was a problem at all.

After his diagnosis was confirmed and we were told that there was nothing we could do about it, I did the smallest amount of research possible just so I could answer people's questions.  In my opinion, ignorance was bliss! Except it wasn't, the unknown was killing me and my sister in law was studying so much about it that I started feeling guilty.  I didn't want everyone else to know more about my son's condition that I did, so the study began. 

Truthfully there isn't a ton of information about Ocular Albinism.  It is very rare in fact Hagen is the only known case of it in the state of Idaho (so I am told).  However once the study began, my mind became more at ease and I realized that my new motto was going to be "Knowledge is Power".  And i do feel "powerful" over Hagen's future. 

Here are some of the most interesting things I have learned.

1. Albinism is Albinism.  There are just so many different levels of severity.  So Hagen is in fact an Albino (which I have also learned is a very derogative term, the proper terminology is "person with albinsim" His genetic makeup that causes his problem is the same as someone with red eyes and white hair.

2. People with Albinism have little to no depth perception.  I have noticed this in Hagen only slightly. When he steps from the carpet to the tile, he is very cautious.  He never attempts to walk down a step, always crawls. I honestly don't think this is much of a problem for him though, he really seems pretty aware.  (I have been told that he may just know his home really well and if he were other places it may show up more)

3.  A lot of people with albinism are actually able to drive and play ball sports, both of which we were initially told he would never be able to do.

4. (One of the more complex and difficult to explain) Ocular Albinism is really a brain problem more than an eye problem.  The person is lacking color pigment in the back of the eye (retina) not the colored part of the eye (iris) necessarily. I have had numerous people say to me, "He can't have albinism his eyes are blue and his hair is light brown" This goes back to 1. and the levels of severity.  Anyway for a normal person their vision is transported from the right eye to the left side of the brain and visa versa. Hagen's visual pathway is misrouted which means images from his right eye go to the right side of his brain and left to left, which creates a blurry image.  It is really way more complex than that but that is how I dumb it down for myself.  The brain changes and grows at such an alarming rate from birth to five years old that it is possible for his visual pathways to change.  Basically he can see great today but that may not be the case tomorrow.  Make sense? Not really! This is why he is seen by doctors so regularly, we just won't know until he is about five or six what his vision for life will actually be. 

5.  When we were told that there is nothing that we could do for Hagen, I felt a little hopeless. Almost like, "why study and learn if there is nothing I can do anyway?" Well I have learned that I can actually do a lot.  We are right on top of making sure he hits every developmental milestone there is.  We have had therapists and social workers evaluate his progress and they are just waiting to help if early intervention is needed.  I plan to start working on letters and numbers with him as soon as he can talk (and focus for more than 1 second:) because learning to read is the number one stumbling block most of these kids face.  I want him to be mainstream school more than I want chocolate at midnight. I understand that his future depends on me!

6. To most people's eye Hagen doesn't miss a beat.  He does so well and is right on track for his age.  He has more energy that I could ever dream of having and he is lovable and sweet.  As his mother though, I see plenty of things that keep me worried and aware.  When Hagen looks at a book (which is rare he is way too busy) he holds it right to his nose and tilts his head from sided to side to study it.  He NEVER acknowledges that the T.V. is on.  This may just be his busyness as well but it almost seems like he is looking around to see where the voices are coming from.  One time I held him right up to the T.V. and he just got a huge grin on his face and stared at it, but as soon as I put him down he looked up that way and then walked off.  I personally don't think he can really see it.