Newly Diagnosed with Albinism?
If you are reading this section of our website, you are most likely the parent of a child with albinism. Congratulations on the birth of your wonderful child! Although your journey as a parent will be different than what you expected, rest assured that your journey will be equally as joyful and wondrous. Before you begin reading about what to expect, we hope you that you will find comfort in these words: you are not alone. There are many families dealing with albinism and multiple organizations that support albinism.
As you may have already read in the other sections of this website, there are many different types of albinism, and depending on which type of albinism your child has, the diagnosis may have come at varying ages. Regardless of when you found out, the first few days following the diagnosis are often the hardest. You may be confused, sad, scared or even angry to find out that your child has a genetic condition. Some people accept the diagnosis and immediately move along to find what to expect next. Others experience the classic stages of grief. Whatever your response to the diagnosis, please know that there is no ‘right way’ to react and you should not feel guilty about being sad or angry. Be kind to yourself as you work your way through your emotions. Also, know that many times one parent reacts differently than the other. Try to be patient with one another.
As you read through this website, we hope that first and foremost you consciously make an effort to see your child as your child first and not see ‘albinism’ first. Your child is the same child you fell in love with. Your dreams are the same. The journey to reach those dreams may just be a little different than you expected.
So, where do you go from here? Broadly speaking, there are a few things you can do early in your child’s life to make the journey easier for you and your child:
1. Get informed. Information is power. You are your child’s best advocate. Read through all the sub-sections of ‘Albinism – Learn More’ on this website. In addition, we recommend a wonderful book written by the ‘National Organization for Albinism and Hypopigmentation’ (NOAH) called “Raising a Child with Albinism: A Guide to the Early Years”. You can purchase this book on NOAH’s website or on Amazon.com
2. Get peer support. Sometimes the best ‘medicine’ for a parent is to reach out to other families who have “been in their shoes”. You can email one of our directors, Susan Ballis at susan@visionfortomorrow.org. Susan has a daughter with albinism. We also encourage you to become part of Vision for Tomorrow’s Facebook community by ‘liking’ us on the Facebook link just to the right of this section of the website. Another alternative for support is the National Organization for Albinism and Hypopigmentation (NOAH). NOAH is also a wonderful organization with a ‘Rapid Responder Program’ to match parents geographically. You can visit NOAH’s website at albinism.org or call them toll-free at 1-800-473-2310 to ask about their Rapid Responder program.
3. Get medical support. It is important to establish a relationship with a sensitive pediatrician who has experience with children who exhibit developmental delays. Most times, your pediatrician will be the one to make qualified referrals to other medical doctors. Equally as important is to establish a relationship with a pediatric ophthalmologist who has experience with albinism.
4. Get professional services. It’s important for you to contact your county or state social service office to enroll your child in ‘Early Intervention Services’. Each state has a different agencies dedicated to ensuring all children needing early services receive them. Even if you feel your child is developmentally on track, it’s important to be in contact with your local Early Intervention Services. The National Dissemination Center for Children with Disabilities (NICHCY) compiles information by state. Their website is: http://www.nichcy.org/Pages/StateSpecificInfo.aspx
5. Modify your environment (and child’s ‘wardrobe’). Because albinism affects the pigment in the eyes, individuals with albinism generally have issues with glare and strong light sources. While indoors, try to position your child away from direct sunlight or have the light source come from behind your child. For example, rather than positioning your child’s highchair facing the window, put the highchair facing away from the window as it may be uncomfortable for your child to look into bright light.
For outdoors, you will want to invest in sunglasses and hats. There are many brands available for babies and children. Please see the ‘Useful Links’ section of this website for some suggestions. In addition, while sunblock is important for all children, it is more important for a child with albinism to prevent sunburns.
6. Stimulate your child’s vision. All babies (regardless of whether or not they have albinism) see high-contrast, simple patterns best. Try to make the areas where your child spends the most time (e.g. their crib, their car seat…) as visually interesting as possible. Buy or borrow toys that are black and white or primary colors in high contrast. Dress yourself in high contrast colors or wear lipstick or nail polish with more vivid shades. There is a wonderful book written for parents of visually impaired babies called “Wee Play in the Dark” by Kristie Smith, which contains many exercises parents can do with their visually impaired children. Once your child starts services with Early Intervention, your child’s therapist will most likely recommend activities to stimulate your child’s vision as well.
To close this section: it can be overwhelming to have your child diagnosed with a genetic condition. Our hope is that you find answers to many of your questions throughout our website and hope through reading about stories with families dealing with albinism.
