Travels to San Diego: A Family’s Experience at the NOAH Conference

Authors: Andrea Wade, Parent

Keywords: family wisdom, family education, albinism, visual impairment, inclusion

Abstract: A parent describes the benefits of her family attending a national conference that is specific to her child's eye condition. The wide variety of session topics offered strategies to use at school, home and in the community so that her child will be included in activities.

My name is Andrea Wade and my husband, Sean, and I have a 5-year-old daughter, Elizabeth, who has albinism. Albinism is an inherited condition in which people have little or no pigment in their skin, hair and/or eyes. They have inherited genes that do not make the usual amount of a pigment called melanin. About one in 17,000 people in the U.S. have some type of albinism.

Two children sitting inside a covered wagonAlthough Elizabeth was born with a headful of white hair, we didn’t learn that she had albinism until she was about six weeks old. We understood that we needed to take necessary precautions to protect her while she was out in the sun by wearing sunscreen, sunglasses and protective clothing. One issue that we were completely unaware of is that people with albinism always have a visual impairment and it is not something that is correctable with glasses. The degree of visual impairment varies, but many people with albinism are considered legally blind. At our most recent visit to the eye doctor, Elizabeth’s corrected vision was 20/200.

Since learning that Elizabeth has albinism, we became members of a wonderful organization called NOAH (National Organization for Albinism and Hypopigmentation). NOAH hosts a national conference every other summer and this past July was our second time attending the conference. The conference this year was in San Diego and we decided our 3-year-old son, Joseph, who does not have albinism, would now be old enough to enjoy the trip as well.

The NOAH conference consists of a variety of workshops for parents of children with albinism and adults with albinism, as well as a number of planned social activities. They also have a great kid’s program that has activities for kids from toddlers to teenagers. Both Elizabeth and Joseph got to play and spend time with other children their age. Although we had been to the conference two years ago, we are at a different stage in our learning and knew there would be new topics and discussions to enjoy. I also noticed our interests in certain topics had changed since the last conference.

My husband was interested in technology at the conference two years ago. This conference he attended more of the social specific sessions. He went to Dealing with the Negative Comments, Building Self-Esteem in your Child, and the Joys and Challenges of Parenting. I found myself more interested in the sessions covering education. I enjoyed Practical Applications to Success for Students with Albinism, Know O&M, and Visual Access in Today’s Schools.

One session that particularly impressed me was No O&M? Know O&M! It is easy to take this for granted but O&M (Orientation and Mobility) training really helps a person learn to orient him or herself and navigate the surroundings. The skills taught are ones that can be applied to any environment. The presenter also pointed out the importance of utilizing what you have in the environment such as landmarks, maps, and asking for assistance. I realized this just the other day as we were driving our kids to go bowling. Elizabeth said, “We are getting close to the bowling alley because I can see that yellow sign.” This was the first time I had heard her say this and I realized she picks up on more than I realize. She may not be able to read the sign, but she knows when she sees that yellow sign, we are close to our destination. One other excellent point from the session was that O&M really needs to be done in an environment the person is unfamiliar with—if they already know how to get around their home, it won’t look like they have any skills that need to be worked on.

A new session offered at this conference that my husband and I both attended was 1Touch. It is a self-defense program that was developed to specifically address the needs of those who are blind or visually impaired. The session was interactive with the instructors and we learned the appropriate response and various techniques to protect yourself.

I was also able to attend a workshop specifically for mothers of children with albinism. It is amazing how good you can feel being in the same room as other parents who share similar experiences. There were some friends from the last conference and there were new faces as well. For me, the mother’s workshop is a great way to explore your feelings in a safe environment. I love hearing how other mothers have overcome certain challenges and the various successes they have had. We laughed, we cried, and we enjoyed getting to know one another and sharing our stories.

When we first joined NOAH, we knew attending this conference would be a valuable experience for our family. Over 800 people traveled from all over the country and the world to attend this conference. In addition to the sessions, some of the best parts of attending were the casual conversations while at breakfast or lunch, as well as the party on Saturday evening where there is dessert and a DJ! It is so much fun to watch the kids dance and enjoy themselves.

When Elizabeth was born five years ago, we had no idea what adventure we were about to embark on, but we are on the path we were meant to be on and it has been an amazing journey so far…and we look forward to what is yet to come!

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