Parent of a Child with Albinism

This is the first of several posts that are LONG overdue!  There is so much I have to talk about that I hardly know where to begin.  Plans for next year are looking really good, but before I start talking about her new IEP, let me just summarize this past year…

Lyra had a very successful first year of preschool.  She is progressing very well with learning both print and braille.  She has not shown a bit of resistance to the braille learning and has not developed any bad braille reading habits.  She is progressing VERY quickly with her print skills.  She can identify all uppercase letters and most lowercase letters.  She can write most of her uppercase letters and frequently asks how to spell words so she can write them down.  Usually those words she’s wanting to write are words she is using to title/describe a picture that she has drawn.

Lyra LOVES DRAWING PICTURES!  Sometimes it’s rather annoying because there are tons of nearly blank sheets of white paper, her “mess-ups”, scattered all over the floors of our house.  At the same time, I’m amazed by her love of drawing.  She is so creative and descriptive with her pictures.  Her attention to detail just blows me away.  She includes eyebrows on faces and toes on feet.  I know I’m stereotyping when I say this, but I never would have guessed, with her being visually impaired, that drawing would be one of her most favorite activities.  I would think drawing would be less interesting.  Shows what I know.  :P  Here is one of Lyra’s latest masterpieces.

My opinions of Lyra’s progress are for the most part, based on what I’ve seen with her at home.  Below are a couple of Lyra’s progress reports from this past school year.  The first paragraph was from her regular classroom teacher and the second one is from her braille instructor.

4th Quarter Update from Classroom Teacher:

Lyra has been a great addition to our classroom this year. She continues to amaze us with her intelligence, and her ability to remember things. Lyra is very outgoing in class, and interacts well with her peers. We are still working on sharing and taking turns, but I feel feel that this is an emergent skill for most young children. We have seen improvement in following directions, and I think a big reason for her struggle with this is because she is so curious about her environment, she wants to experience everything! She loves all kinds of activities, especially books and reading. She has been a joy to have in preschool 3, and we have really loved watching her learn and grow.

3rd Quarter Update from Braille Instructor:

Lyra uses a braillewriter adapted with unifix cubes on the keys. She inserts paper with help and rolls paper in independently. She produces entire lines of full cells and 2 letters (a, I) with strong pressure. She allows assistance to position her fingers to produce her first name. She has asked about upper case letters and has used the capital sign in front of her name with assistance. She: tracks across lines of braille with assistance and consistently tactually locates a 2-space break or a dissimilar braille letter in the line. She has occasionally located 1 dissimilar braille letter in a line of 4 letters with max. assistance to track. She tactually identifies 2 braille letters(a, I). She has replicated configurations of 24 letters in a manipulative braille cell and accurately states dot locations 1-6. She visually identifies several letters that have been formed in a manipulative cell.

With everything I am about to say, it is my intention to represent only the opinions of me and my family.  While I do refer to other parents, my statements do not reflect the views of all parents of children with albinism or individuals with albinism.  People who know me and my family through NOAH or AI, probably already know my opinions on this subject, so for some of you… I am preaching to the choir.  As for the rest of you, my friends and my family, I mean this in the kindest most loving way possible…

Please do NOT refer to my daughter Lyra as “Albino”.   This is a REALLY BIG DEAL!  If you LOVE us…Please RESPECT our feelings on this.

And I don’t mean, don’t use the word albino only when I am around to hear you.  I mean don’t use the word in reference to Lyra at all, even in conversations with your friends, other family members, and especially your kids.  Why?  Because you are setting an example.  When you do this, what you are teaching people is… it’s okay to use the word albino in reference to Lyra…as long as you don’t use it around her crazy overprotective mother.

Please be considerate of our family and our feelings on this issue.   Those of you who I hear hesitate when you try to say the word albinism are the ones I suspect are secretly using the word albino behind my back.  Just learn how to say the word albinism and how to use it properly and then teach others how to say it.  It’s really not that difficult.

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Don’t get all huffy like this is about political correctness or something.  This is SO much more than that.  The word albino is offensive for a number of reasons.  The word and the use of the word cannot be equally compared to anything else.  Allow me to try to explain WHY this is such a big deal.

People in general are much more familiar with the term albino, yes, but what they’re familiar with, in most cases isn’t even true albinism. What they know of “albino” isn’t even fact.  What they know about the word albino is what they’ve been conditioned to think…what they’ve seen on television or in books.  If a word is used in a derogatory way enough times, eventually people forget that the word ever meant anything else.  So in a way, it isn’t really the word itself that is negative…it is how society perceives the word and what it means.

These negative representations of albinism, using the word albino are everywhere.  Albino has been used as a negative word for hundreds of years and continues to be still today. (See Here, Here, and Here)  Yes…I KNOW there are offensive portrayals and misrepresentations out there of individuals with other disorders/disabilities like autism, down syndrome, schizophrenia and mental retardation, but it is NOT the same as albinism.  There is also no shortage of offensive inaccurate portrayals of people from other cultures and races.  This is NOT the same either.  Many disability groups and minority groups have gotten a bad rap on TV or in the movies over the years.  However, the big difference for those groups is that for every inaccurate portrayal, you will also find many many examples of accurate portrayals.  That’s not the case with albinism.  There have been no TV shows or movies in the past that have presented an accurate portrayal of a person with albinism.  If you think you can find an example of a portrayal of person with albinism who is not evil, weird, stupid, scary, magical, or inhuman, then please…send it my way.   That would be a first.  Better yet…find me 5 examples of accurate portrayals of albinism and then maybe we could put together an Anti-THIS.

You will also find that there are many examples of misrepresentations of albinism in non-fiction works/publications. Lyra’s older sister Rebekah has already come across some of these examples in her school science textbooks and in other books in her school library. If not influenced enough by the inaccurate textbooks and books, there are plenty of children’s TV shows and movies to further perpetuate the myths.  And don’t think even for a minute, that kids aren’t picking up on these less than subtle messages. Rebekah has had to deal with teasing and ridicule regarding her little sister on more than one occasion.  Last year there was an incident at school in which a certain mean girl said to Rebekah… “Does your mom beat your albino sister?”

To me/us, referring to Lyra as an albino implies that she is something other than a human being…something other than our sweet beautiful little girl.   Another reason that the issues related to the word “albino” are so unique is because unlike other disorders/disabilities, albinism crosses species and even scientific kingdoms.  There are albino squirrels, dolphins, alligators and tigers.  There are even albino beets, albino melons, albino orchids, and the most offensive of all…albino alligator shoes.  These “albino’s” are put on display in zoos, circuses, and exhibits and are Oooo’d and Ahhhh’d over because of their uniqueness.  They are unique because of WHAT they are…not WHO they are.  To most people, THAT is albino. Those, as well as the numerous Hollywood portrayals are what come to people’s minds when they hear the word albino.

THAT, is not Lyra or even something I want to be associated with her!   Lyra isn’t a sideshow or a science project!   Human beings deserve more respect than that.  Lyra is special for WHO she is, not WHAT she is.   An adult with albinism I know once made a comment on this subject that I thought was a great way of thinking.  He said, regarding labels,  ”They do not define my identity, but they are part of it.”

Don’t tell me to get over it.   Don’t tell me I’m overacting.  Don’t make excuses for other people either.  Ignorance is NOT bliss.  I understand that albinism is not the word most people are familiar with…So What!  Get familiar with it!

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Parents who prefer the term “person with albinism” also deserve respect.  Don’t assume that just because we prefer “person with albinism” that we are in some form of denial or that we are still “coming to terms” with our child’s albinism.  Don’t tell me I just need to accept the word albino or that I have to “own it” or something.  I’d much rather take the time to educate people than risk them making the association with what they think they know about an “albino.”

I respect those individuals who chose to use the word albino in reference to themselves or their own child.  However, I will politely correct anyone who uses it in reference to Lyra.  Generally, with the nice people who make comments or ask questions,  most are very accepting of and grateful for the information….even when I have to correct them.

One thing that really hurts me is that fact that I had to write this post for you all, my friends and family. You are the ones who know me and know Lyra and how special she is to all of us. Yet you brush aside my views like I’m just another overprotective mom. You have NO IDEA what it is like! You have never had a child with albinism, so don’t pretend to have even a clue about what we’ve been through.  If perfect strangers at the grocery store can respect our views regarding the word albino, I really hope that our closest friends and family would do the same.

If you haven’t already seen it, please watch the video I made called Perception Is Not Reality.

You can read the opinions of other parents of children with albinism and adults with albinism on the subject here: Is the Word Albino Derogatory?

My article, Sight Unseen was recently published by the Albinism Fellowship of Australia (AFA) in their quarterly newsletter called Beyond Blonde!   This is the second publication of my article.
A big Thank You to AFA for allowing me to share this on my blog!  Click on the picture above to view the first 12 pages of the issue. 

Lyra “wrote” and drew the pictures for her story.  She is very descriptive with her storytelling.

The information below is from Lyra’s 3rd quarter progress reports from the private preschool she attends. The first section is from her braille instructor and the other is from her regular classroom teacher.  I am quite pleased with their reports.  :D

Lyra uses a braillewriter adapted with unifix cubes on the keys. She inserts paper with help and rolls paper in independently. She produces entire lines of full cells and 2 letters (a, I) with strong pressure. She allows assistance to position her fingers to produce her first name. She has asked about upper case letters and has used the capital sign in front of her name with assistance.

She tracks across lines of braille with assistance and consistently tactually locates a 2-space break or a dissimilar braille letter in the line. She has occasionally located 1 dissimilar braille letter in a line of 4 letters with max. assistance to track. She tactually identifies 2 braille letters (a, I). Work needs to be shielded as she prefers to use her vision. She visually identifies several braille letters at 4 inches.

She has replicated configurations of 24 letters in a manipulative braille cell and accurately states dot locations 1-6. She visually identifies several letters that have been formed in a manipulative cell.

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1st quarter:
Lyra is a great addition to our classroom! She is a very energetic and curious learner. She is always eager to participate in activities, and wants to experience everything that school has to offer. We are seeing emergent social skills, and an increased desire to interact with her peers. She enjoys looking at books with an adult, playing games with other children, and exploring manipulative toys. We are working on following directions and listening to instructions. We are also working on attending to a task for a certain amount of time, such as an art activity or circle time (this is a struggle for most young children’). Lyra is becoming increasingly familiar with the routine of the classroom, and is picking up on concepts very quickly, such as the letter of the week, calendar concepts, and handwriting. Again, she is a joy to have in class, and we are loving watching her progress!

2nd quarter:
We have had a lot of fun getting to know Lyra even better over the last few months. It is very clear that she loves to read and be read to, which is a great indicator that she will be a very bright academic student. She has picked up very well on routines, and we have seen a lot of curiosity and exploration. She really enjoys interacting with both adults and peers, and does not have any problem getting along with other students. We are continuing to work on listening and following instructions, but have seen marked improvement in this area. We have also seen an increased ability to attend to a task for a certain amount of time, like circle time and group activities. She is a very fun and entertaining child and we love watching her learn!

3rd quarter:
The past few months have been a very fun and exciting time to have Lyra in the classroom. She continues to explore and ask questions about her environment, and has become increasingly familiar with classroom routines. We are constantly amazed by what she remembers and her ability to ask appropriate questions. Lyra loves to interact with others in her environment, including peers and adults. She is very outgoing and does not struggle to get along with her classmates. We are still working on maintaining participation in group activities like snack and circle time, but this is a work in progress for most small children. We are also working on listening and following directions when they are given. She has a great personality and we love having her in the class!