John’s story (see “My Story: Faith, Focus and Follow-Through) is one of courage and perseverance. While some professionals were helpful and possessed the knowledge and skills to assist John in achieving both communication and academic success, others proved less resourceful. John’s parents learned--sometimes the hard way--that the “experts” did not have all of the answers. His parents’ experience also reinforces another truth--that parents truly know their child better than anyone else.
Fortunately, today’s early identification and early intervention landscape is easier to navigate. Because of the rapid growth of state systems (i.e., Early Hearing Detection and Intervention (EHDI) Programs) and local universal newborn hearing screening (UNHS) programs over the past twenty years, children are being identified with hearing loss and referred for early intervention services within the first months of life. Several studies have shown that when children with hearing loss are identified early, receive timely early intervention, and use appropriate hearing technology (e.g., digital hearing aids, cochlear implants, and/or FM systems), communication outcomes comparable to their same-age hearing peers can be achieved. And, when children with hearing loss enter kindergarten or first grade with age-appropriate language, they are more likely to achieve higher rates of literacy.
From newborn hearing screening through identification and intervention, the success of the system requires well-trained professionals who can provide appropriate services, counseling, and information as well as be willing to connect families to other community resources that will be of assistance. Every state should have such a network of early intervention providers, audiologists, and other professionals in place; however, come communities may struggle to ensure that this continuum of care is available for every family.
All too often, families may not be receiving early intervention services to which they are entitled. More importantly, families may not know what to ask for or what services should be available to them. The following are general strategies and recommendations that parents of infants and toddlers can use to secure appropriate services for their child who is deaf or hard of hearing.
- Be informed about your parental rights in regards to the services that should be provided. If you don’t know or don’t request specific services, they may not be offered.
- Connect with other families who have children who are deaf or hard of hearing. Family-to-family interactions can provide insights from those who are also experiencing childhood hearing loss and perhaps have already navigated what you are currently trying to figure out.
- Don’t be afraid to ask for a second opinion from other professionals. If you don’t feel that you are being well-served, seek out a second opinion from professionals who have the background, knowledge, and experience of working with children who are deaf or hard of hearing.
- Visit various programs and service providers to understand the range of communication and early intervention options that are provided in the community.
- Hold professionals accountable. If you’re not getting consistent services, be prepared to challenge the type or schedule of services that are provided.
- Join parent support organizations such as Hands & Voices, the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), the Deaf Community, or other groups that can help to connect you to additional information, resources, and families.
Likewise, as children get older and transition from early intervention to preschool and into educational settings, parents face a range of decisions that will directly impact the educational placement, support, and related services that their child will receive. The following is not an exhaustive list, but should be viewed as general strategies and recommendations that may prove invaluable.
- Be aware of the emotional impact that transition periods can bring. As your child moves from one “stage” of service delivery to the next, you are often dealing with new professionals who are unfamiliar with your child. The process of explaining your child’s hearing loss each time there is a transition can elicit very emotions. This is normal, but be aware that it can happen.
- Moving from early intervention to school-based services at age three is actually a change in the service delivery model. That is, early intervention is a “prevention model” where services are provided to ensure the child gains developmentally. However, after age three, the model shifts to a “failure-based model” whereas the child must “fail” at a certain level in order to qualify for services. This is an unexpected shift for most parents, and it is critical that parents understand their legal rights in securing school-based services. Parents must understand the evaluation and Individualized Educational Plan (IEP) process and how to successfully negotiate and secure appropriate services for their child.
- Be a presence in your child’s school. Volunteer in your child’s classroom – if it is allowed. Attend meetings; participate in “Back to School” meetings, open houses, and parent-teacher organizations.
- Develop a way of open and consistent communication with your child’s teacher(s) and others who may be providing support or related services. Put in place a system where you receive daily or weekly updates--depending on the situation.
- Understand the range of accommodations that might meet your child’s needs, such as preferential seating, more time to take tests, receiving lesson plans in advance to preteach content and vocabulary, smaller teacher-student ratios, educational audiology services, speech-language services, resource services, assistive listening devices, social group participation, captioning of all films and videos, interpreters, and notetakers--just to name a few.
- Network with other families and/or organizations that can lend support, resources, and even assist with advocacy strategies when parents and educators disagree on placement decisions or the recommended services.
There were three important keys to success in John’s educational journey. First, as a person with hearing loss, it is critical to have is faith in yourself -- that unwavering belief and confidence that you will be successful in the academic setting. Did John’s parents instill the seed of John’s later conviction that he could achieve what he wanted to do and had the right to ask for equal access? Second, having the focus of a clear game plan to be successful in the classroom or at whatever life throws your way. And third, is the follow-through of the plan that you developed. Faith, Focus and Follow-through are the three cornerstones that guided John and his parents during his academic career. Hopefully this look back at John’s story and the lessons learned will inspire your family and child to achieve even more.