Support Through a Critical Time

 Speaking from the Volta Bureau Autumn banner

Emilio Alonso-Mendoza summerDear Alexander Graham Bell Community,

Throughout the year I've written about people who have had a significant impact on what AG Bell means to our society: Dr. Alexander Graham Bell and his family, AG Bell chapter members and LSL professionals among others. All of us participate in moving the mission of AG Bell forward by thinking about the future and addressing the needs of children with hearing loss. I've even shared stories with you of children who have raised money for AG Bell, but the two I write about today are children who have benefited from the AG Bell Parent & Infant Financial Aid Program. Providing financial aid is at the heart of AG Bell, and these two children and other award recipients like them have been helped on their journey to hear and talk by friends like you through AG Bell.

Many parents go through a grieving process when they first learn that their child has hearing loss. This is mostly because of the unexpectedness of hearing loss. After all, the parents of more than 90 percent of babies who are born deaf have no history of hearing loss in their family. They are simply unprepared for the diagnosis and have no idea how to help their baby. One family told us: 

Ryan
Ryan

When our daughter Ryan did not pass her newborn hearing screening, the thought of hearing loss never crossed our minds. At 6 weeks old we were squeezed in for a follow up appointment to do some additional testing. I remember so vividly holding my sweet baby over my shoulder while they performed a tympanometry test and she glanced up and gave me a big gooey smile. Tears streamed down my face as that was the first moment it occurred to me that something might be wrong. Little did I know that our lives would take a dramatic turn. The audiologist reported that Ryan had bilateral severe-profound hearing loss. 

The diagnosis of hearing loss is a call to action, to focus on the challenges and prioritize them by their importance, what can be accomplished first and how our baby will be affected. Parents who receive a diagnosis of deafness must act quickly to help their child learn to listen and speak, and that brings financial challenges they were surely not expecting to take on. In Em's case, her family had to address other medical issues in addition to hearing loss that contributed to the financial strain:

Em went through a bone marrow transplant (BMT) over a year ago, taking our family nearly four hours away from home for several months. This required Em to begin speech-language services with a new team of people for a relatively short period of time. Just over two months after returning home, we learned Em's BMT was considered delayed failure. Again, we relocated to the medical facility nearly four hours away from home, this time leaving Em's dad at home to work and visit us on the weekends. So far, it seems the second BMT is taking better than the first and we are seeing much better results, medically speaking.

As a parent and a grandparent, I read these stories and my heart goes out to the family. The costs associated with learning to listen and speak are significant: hearing aids and cochlear implants, speech-language therapy, specialized education and even the expenses of traveling to and from appointments with health care providers and therapists. I'm pleased to see that these parents and their children welcome each day with joy and determination.

Em is anxious to get back into her "normal" routine of SLP/LSL, school, school-based services, and her extra activities. She is simply an amazing little girl; of course, that could be us, her parents, being a bit biased.

Speaking from the Volta Bureau image of adult and childHow AG Bell Helps Families
AG Bell helped the families of Ryan and Em with transportation costs. The miles add up during road trips to hospitals, medical services and therapy sessions. Ryan's parents described how the award was used when they wrote:

We drive approximately 1069 miles a month for Ryan's therapy. After a long year facing unemployment, we used the financial aid funds toward transportation costs and purchased new tires for our vehicle.

AG Bell supports families early in a child's development through the Parent & Infant Financial Aid Program because families need the aid to handle a wide range of expenses including services not provided through early intervention or covered by insurance. AG Bell's purpose is to help reduce the financial barriers that can make all the difference in a child learning to hear and talk.

The Parent & Infant Financial Aid Program is for families of infants and toddlers under the age of 4 who have been diagnosed with a moderately-severe to profound hearing loss who want their child to learn to hear and talk, forming the basis for their language and literacy development. The 2015 program deadline is October 9, 2015. We encourage every qualified family in need of help to apply, and ask LSL professionals to share this information with the families they serve.

Speaking from the Volta Bureau parent and childAG Bell is able to offer financial aid to families in different ways from their child's birth through their entry into college because of generous contributions from multiple donors, including several who looked toward the future for our children and invested with AG Bell through trusts and donor-advised funds. Because of their kindness and the continuing support of friends and supporters, families are finding in AG Bell a partner in their journey committed to their child's success. We'd like you to be a partner, too, and join us in making a difference in the lives of these children and their families.

Until next week,

 

Emilio Alonso-Mendoza
[email protected]

 



No one is useless in this world who lightens the burdens of another.
- Charles Dickens