Albinism

Tuesday, March 20, 2012

SOCIALIZATION

All parents want their children to grow up feeling secure and having a healthy sense of self-esteem. Albinism will have an impact on your child’s social development in several key ways. Looking different often affects a child’s social acceptance by her peers and her own development of self-esteem. IN addition, low vision often contributes to difficulties in developing appropriate social behavior. These factors can make it more challenging to find friends and to develop a healthy attitude about oneself.

Children with visual impairments often need some extra help in developing certain social skills. At the same time, you may be wondering about how best to discuss albinism with your child and how to manage family dynamics. Helping your child learn how to develop friendships at an early age is very important. The social stigma associated with albinism is an unfortunate part of adolescence for some children, but if they have strong social skills, healthy self-esteem and an ability to make friends, they will overcome this hurdle.

“Children with positive self-esteem have an easier time handling conflicts and are generally optimistic. Children with low self-esteem have a more difficult time meeting challenges and finding solutions to problems”.

Personal experience:
I was raised with the same expectations as my siblings who do not have albinism. I was taught to be very independent and to do things for myself. I was given many opportunities and was included in many different peer groups. From these experiences I grew up having high self esteem that did not hinder my social experience because I knew who I was, and knew what kind of person I wanted to become.

USING THE "A" WORD

It is unlikely that a person will approach you in the grocery store and ask, “Does your child have albinism?” Most often, parents are asked if their child is an albino. For many people, the word “albino is considered a slur, and evokes feelings of anger and prejudice. However, while some people do use this term as an insult, most are just unfamiliar with the more acceptable phrase “person with albinism.”

Use of this term have been widely discussed in the NOAH community for years, and opinions vary about which is preferable. The term “person with albinism” emerged after the Americans with Disabilities Act (ADA) passed in 1990 and the country began to move toward person-centered terms. “People with disabilities” replaced disabled. The rationale behind this person-centered language is to put the individual ahead of the condition.

While most people prefer the term “person with albinism,” your child will certainly be called an albino – mostly out of benign ignorance, but occasionally as an insult. As parents, we must frame the issue so our children feel no shame when they hear the word albino. Most people who use the word albino are not trying to be rude or disrespectful, they simply don’t realize that the word can be hurtful to people with albinism. Pay particular attention to the situation in which the word is used. The context, setting, demeanor, and intonation of the people who use the term to label or describe your child will tell a lot about their motives and whether they are misinformed or rude.

As in many other situations related to albinism, the way you react to someone calling your child albino sets the tone for your child’s reaction too. Very young children are not going to understand what the word albino means, or that it can carry negative connotations. Your child will take her cues from you on how to respond when she hears the word.

Sometimes you may choose to ignore the term albino, or may even use it yourself when explaining albinism to others. If your child hears you use the term casually, she will attach no stigma to it, and will view its use by others as simple ignorance that can be ignored or corrected, as she sees fit. Your reaction will help your child shape hers.

A MOTHER'S JOURNEY

What is it like to be the mother of a child with albinism? Whitney was the third child born into a family with a mom, a dad, and 3 siblings. All this happened within a span of three years. Almost four years later, another sister would be added to the family. On the day that Whitney was born I was concerned that her brother and sister wouldn’t be accepting of their new little sister. consequently, I arranged for Whitney to give them each a present from her, a mickey mouse for brother and a minnie mouse for sister. They were thrilled and loved their new sister even though they were still babies themselves.

I chose the name Whitney because it means born of white waters. She was so fair with lots of hair that stood straight out. We had no idea that there would be any concerns about her development. The doctors sent us home without a word or diagnosis of the pending challenges that lie ahead. We just knew she had inherited her fairness from her Swedish ancestry. I was told at her first check up with the pediatrician that he suspected that she was blind and had albinism. He said I want my partner to come in and look at her too. I said albinism, "Isn't that those people that are really, really white and have red eyes?" He said, Mrs. Yorgason we need to send you for genetic testing to confirm and verify our diagnosis.

We were asked a million questions about who has sun tans in our family. My husband and I gave them hair samples. After a long wait for the results, the report stated that my hair follicles appeared normal and it was difficult to tell from my husband's since he was losing his hair. After that, we visited eye doctor after eye doctor with no one being able to offer any help except for a pair of glasses that might help her. Whitney would wear them to preschool and take them off as soon as she got home.

Being a school teacher, I knew that there was academic help available for children with special needs, and I sought after that help. As Whitney's mother and father, we were active participants in the classroom at school and the teacher's knew us by our first names and by our willingness to help them.

I was in denial for many years about Whitney's situation until we met up with the Jr. Blind Foundation in Los Angeles where for the first time I saw other children with albinism and had camping experiences with other families who had a blind child or one or two with albinism. This experience would always bring me to tears where I realized Whitney did indeed have albinism.

For several years, the family and siblings participated in the activities they provided until Whitney's father retired from the LAFD and we all moved to Idaho. The support that we had from the school district and the community was not as helpful as it had been in the Los Angeles area. The church was very accepting however of our family when we moved to Idaho, and we found a lot to do in primary, young women, Jr. High and High School. Whitney excelled in music and found lots of joy in that regard. Whitney always had good friends, and she was not excluded from having a fun and normal life. She has always loved life and all it has to offer. She gets excited easily and loves to smile and laugh and converse. She has brought great joy to her family and friends and especially to her her passion, teaching little children.

Her long awaited goal of graduating from college next month is within our sight, and all the hard work she has accomplished is because of Whitney's innate ability to accomplish anything she wants to do through perseverance and never giving up. If at graduation you hear a mother crying uncontrollably, I apologize in advance, "Ah, the pure joy of being Whitney's mother.!!!!!"

MOTHERS WITH CHILDREN WITH ALBINISM