Grandparents of children with albinism take on many different roles and responsibilities depending on the family dynamics and norms. It is important that when defining these roles for your family that you follow the lead of your son or daughter while meeting your own needs. Adapting to a diagnosis of albinism requires education, support, love and time. Each person has their own way of coping and learning, therefore respecting this process in all family members is very important.
Following are a few suggestions to keep in mind during the journey ahead.
- Take care of yourself. As a grandparent, you may feel overwhelmed with concern for your child and for your grandchild. Feelings of sadness, fear, helplessness and anger are normal. Take some time to process how you are feeling so that you can be a support for the family.
- Support and encourage both your grandchild and your own child. Acknowledge the progress and celebrate the successes. Don’t borrow trouble, stay in the present. Remember, you only need to know how to handle the immediate phase in front of you and stay one step ahead.
- Offer to help your son or daughter in any way that is needed. Remember that their version of help may be different from yours – stay flexible! Let them know by your affirming and supportive attitude that you have confidence in their ability to parent a child with albinism. Don’t forget to tell them you love them and think they are doing a wonderful job of being a parent. Remind yourself they are learning also!
- Educate yourself about albinism, don’t just rely on busy parents to answer your questions about albinism. Be prepared to answer questions yourself about your grandchild’s appearance or vision. Increase awareness of albinism by educating your colleagues, neighbors, friends and family.
- Ask questions and try new things. There are a few adjustments your grandchild with albinism may need. Ask about making the physical environment comfortable for your grandchild, Small changes can be very helpful.
- Whenever possible, let your grandchild figure things out for themselves and find their own creative solutions. Encourage your grandchild to be a problem solver – ask them what THEY think will work if there is a visual challenge, how would THEY solve the problem.
- Don’t make the job harder than it is. Being a grandparent to a child with albinism doesn’t require special skills. The most important thing about your grandchild isn’t that they have albinism, but that they are a unique human being, to be treasured for exactly who they are.
- Remember that low vision is normal for your grandchild, it is all they have ever known. They will naturally adapt by doing things like holding objects closer to them, or physically standing closer to things such as the TV, preferring a darker room over a brighter one, exploring their environment more tactically than visually.
- Functional vision is different than actual eye exam vision tests. Kids often see more than you expect them to, their brains and experience “fill in the gaps”. Have faith that your grandchild with albinism will learn to succeed at normal childhood activities like riding a bike, participating in sports, learning to read, finding their way around the neighborhood, making friends, etc.
- Don’t sit with a worry, ask for help. Tap into the shared companionship and knowledge of the larger NOAH community. Share any concerns you may have with a NOAH grandparent or member. Make friends with adults with albinism and listen to their stories. Go to a NOAH conference, watch a webinar, participate in a bowl-a-thon. Join NOAH’s Grandparent Connections teleconferences to hear from specialists and other grandparents.
- Give back – Volunteer for NOAH. Participate in the annual NOAH Bowl-a-thon and/or volunteer to help in other ways. Parents are often too busy to do this. Your help means NOAH resources will be there for your grandchild when and If they are needed.