Using this Website to Help Parents with Young Children

Parents with young children who have been diagnosed with blindness or partial sight are often thrown into a grieving process – grieving for the child without disabilities whom they expected, and reconciling themselves to a different reality; a child with a disability or multiple disabilities. Often, these parents are in and out of hospitals with their children who may need assistance to breathe, multiple surgeries to survive or to try and save any vision they may have, or other interventions – which only adds to the stress they may already be experiencing.

There are also the subtle and not-so-subtle comments that their friends, extended family members, and complete strangers make to them – asking what’s wrong with their babies or toddlers and why they don’t just put glasses on their children so that they can see properly. These multiple stressors often make it difficult for parents to hear and retain what professionals have to say.

Therefore, service providers working with parents of young children need to first learn to “tread lightly”. What this means is to listen more than you speak – listen to what the parents and other caregivers want or need to share with you. Find out their concerns and what they hope you’ll be able to help them do with their child. Do they need assistance finding respite care for their child so that they can get some relief from 24/7 caregiving? Are they concerned that their child isn’t sleeping, eating, or responding as they anticipated? Do they worry that their child is in pain or has undiagnosed problems that may be interfering with learning?

Before you can help, you must listen to what the parents believe the issues are. By being a good listener and then offering up suggestions or observations, you establish rapport with the parents. Always leave your name and contact information and any content, resources, or strategies that you discuss in written format so that they can refer to it when you’re not there and reach out to you. Touch base as often as they’re comfortable with in order to keep informed and share information.

When the time is right, share what you know about the developmental process and how vision loss may impact the acquisition of certain skills. Help the parents understand that children who are blind or partially sighted tend to react differently to auditory and visual stimuli than children with full vision.

If children are blind, they often will become quiet when they hear someone or something near them and their parents may erroneously think that means they want to be left alone to sleep. But what they may actually want is to know what or who is there and to engage with that thing or person.

Children with partial sight who are seen by early interventionists tend to be children with multiple disabilities and their multiple challenges may make it difficult to decipher vision problems from other difficulties. You’ll need to work closely with parents to determine when to intervene as a vision specialist.

You may be asking yourself, How is any of this related to career development? The early childhood specialists, teachers of students with vision loss, and other therapists (Occupational Therapists, Physical Therapists, Speech/Language Pathologists) are often the first point of contact with parents of young children with visual disabilities.

You likely serve in such a role that you understand that parents need to believe that their children will be able to live a full and satisfying life. This website can help you help parents to see what the future may hold for their children and help them understand what they can do to facilitate career development.

The following are suggestions on how to use this website, however, you’re the best person to judge what will work best for the parents you work with.

Getting started 

• Although the Living Independently section is written with adults in mind, the competencies discussed are what children with or without disabilities will need to master to move successfully into work and other adult roles. If the children you’re working with won’t be able to master some of these skills, it’ll be important to discuss the other options available to them, such as personal attendant care or guardianship by family members or advocates. It’s important for parents to know the end goals while they have your help to learn alternative ways of doing the things they think require vision. The sections that are particularly relevant to younger children are the sections dealing with taking care of yourself (personal management) and taking care of your possessions (home management).
• The competencies outlined in the preschool page in the Learning and Education section  can help you and the parents decide which skills are present and need to be reinforced and which need attention for their children to move successfully into preschool programs. To help you track a child’s progress, there’s an age-specific Career Education Competencies Checklist​ Document (a text only version is also available). 
• You’ll also want to review the section on disability-specific skills training and encourage parents to do so as well. Parents need to be aware of what their children are learning and how the skills being taught will help them integrate ultimately into school, work, and the community. 
• The Working Life section gives you a sense of what to anticipate in the future in terms of work. And the Success Stories section offers audio and video interviews with successfully employed adults and their employers. These are a wonderful way to introduce parents, who may never have met an adult who is blind or partially sighted, to successful people. Their stories can help you dispel many of the fears and concerns that parents of young children with visual disabilities have.
Visit the Service Providers Resources section for links to other informative sites and related information to help you help your child prepare for a life that includes work and career roles. ​​