Building a System of Support: Critical Tips for Caregivers of Children who Are Blind

By Roqayah Ajaj

In a recent discussion I had with a group of teachers of the visually impaired, one of the teachers (who is blind herself) mentioned that her own mother still directed her with vague words like “here” and “there,” instead of giving precise directions. As educators and advocates, we push for communities to fully include people with disabilities, but how can we achieve this broad change when families and caregivers of individuals who are blind have not yet changed their own actions? We must remember: Inclusion starts in the family, and from there it can spread to wider community circles. Feeling included is the basis of healthy self-esteem, which leads to full participation in what life has to offer. Development of this self-esteem starts in the family.

When thinking about the role of family in support their child who is blind, I find it useful to employ the ecological model. In this case, the ecological model states that the attitude and self-esteem of an individual who is visually impaired is affected by:

• Family, friends, social networks
• Institutions they are a part of
• Communities and their views of disabilities
• Disability policies and the view of inclusion in the entire society

The ecological model recognizes that individuals are part of a larger system of communities, from the home they grow up in all the way to national laws and global policies. While full inclusion requires effort on all of these levels, the foundation is in the family unit. Part of a caregiver’s responsibility is to help the young person process the inequities in our world that affect them, help them learn self-advocacy skills, and demonstrate for others how they should be treated. The goal of parenting is to prepare a child to live in the world without the parent. Setting aside the broad political sphere, I want to talk in this post about the impact you can have as a parent in the home, in the community, and along your child’s journey to independence.

Creating a safe and respectful home environment

It is essential to build a friendly home environment for your child who is blind, as it is the heart of their development. Below, I suggest concrete actions in the home that you can take as a caregiver of a child who is blind or visually impaired.

• Keep your home organized and avoid putting things in the middle of walkways and other common spaces without alerting your child. Doing so will help your child feel safe when navigating and allow them to be more independent in their home.
• Always alert the child of your presence when you are in the same space. If you have other kids, teach them to do the same.
• Be intentional about creating opportunities for hands-on learning time, rather than assuming that your child will incidentally learn things through sight.
• Talk openly about your child’s needs when teaching them and interacting with them. Normalize acknowledging their disability, as it is part of their identity.
• Teach your child how to speak up – both literally and figuratively – when asking for their needs to be met (e.g., asking their siblings to describe images or asking a family member to provide precise verbal directions to locate an object).
• Acknowledge different abilities using descriptive language instead of value-laden language. For example, use the words “my way” and “your way,” rather than “the right way” or “the wrong way.” (You might say, “My way of reading uses a hard copy book, while your way of reading uses Braille.”)

Advocating for your child in the community

Parents should take an active role in building a community that is friendly and supportive of their children.

• Getting actively involved in your child’s school or other communities helps get them the attention they need and makes them feel more involved themselves.
• Help your children get full life experiences so they can connect with their peers through discussion of these experiences. As always, when your child is exploring a new place or activity, give full verbal descriptions so that they have the language to talk about it.
• Be prepared to be a resource for teachers, coaches, and other adults in your child’s life when they want to learn how to better support your child. Part of this will be helping them teach other children in their care how to interact with your child.
• Whether in the home or out in the community, encourage and help your child to meet and welcome people who are new to them. Keep in mind that your way of interacting with and assisting your child will also be a model to someone who hasn’t met your child before. Set a strong example of giving verbal descriptions of the surroundings, stating who is present and where they are, and asking someone new to say their name before they speak.
• When relevant, don’t hesitate to mention your child’s disability or needs – these are part of their identity and reality and are nothing to be ashamed of. Modeling these inclusive behaviors in and outside the home leads to others behaving in similar ways, creating a ripple effect of more inclusive behavior throughout society.
• Become a member of organizations that do political and community advocacy work for disability rights.
• Join groups for parents of children with disabilities to share ideas and feel mutually supported.

Helping your child develop independence

You’ve worked really hard to create a home and community that are supportive of your child. Unfortunately, the reality is that we live in a world that is not built for those who are blind or visually impaired, and your child will inevitably experience inappropriate or unacceptable behaviors from others. Therefore, it is important to equip your child with tools to advocate for their own needs, as well as tools to process and manage the difficult emotions that arise when they face these challenges.

• Practice self-care and household routines with your child until they can perform these tasks independently.
• Let your child know when you are reading or writing (even a grocery list, for example) so that they are aware of how literacy is integrated into everyday life.
• Trust them and give them household responsibilities just like their siblings. Teach them, through verbalized instructions and hands-on practice, how to do their chores. Be creative and open-minded in this process – you and your child might be surprised by how they approach learning a new skill.
• Introducing new things to your child should be a multi-sensory experience. Give descriptions and encourage them to use their hands to touch (e.g., when going clothes shopping, have them touch the material and give them the name for it.).
• While out in public, encourage your child to build their independent skills (e.g. have them speak to the cashier, order their own food, etc.).

When you raise your kids to be competent and help them understand themselves and the world around them, you are making them stronger and more equipped to face any challenges that may come their way. These tips are useful for caregivers of any children, but they are especially crucial for caregivers of children who are blind or visually impaired. You, as the caregiver, are the most essential piece of your child’s support system.

Do you have other critical tips? Share them in the comments below! And please send this article to anyone you know who is the parent or caregiver of someone with a disability.