In Between Worlds

My son Zachary was late diagnosed at almost age five, with a moderate bilateral sensorineural hearing loss. Today at age 11, his degree of hearing loss is borderline to severe & profound. His hearing loss is a progressive one. When and how much is the “unknown” we dread everyday. Relying only on his residual (remaining) hearing without hearing aids Zachary becomes stranded in a world of silence. With Hearing Aids on Zachary can now experience Intelligible speech vs. Audible speech. Sounds of other importance such as sirens, car horns, baby cries, songbirds and the little sounds that we all take for granted come to life with hearing aids! Since hearing loss is an invisible disability, many people do not realize the importance of hearing aids, and the benefit of processing language, developing communication skills, and obtaining comprehension. Even though hearing aids do not make his ears function as a “normal” ear, life with hearing aids is a technological blessing when you’re in between worlds of sound and silence.

When Zachary was first diagnosed he had a moderate bilateral sensorineural hearing loss. His first set of aids were close to $4,000.00. We were fortunate that our audiology clinic offered us a substantial discount, and interest free payment plan set up with affordable monthly payments. Our Insurance company covers $800.00 towards hearing aids as a set. $400.00 per hearing aid, per ear replaceable every 36 months. By 2nd grade his hearing dropped, and his hearing aids were not powerful enough. Zachary need to be upgraded just a little over 3 years of receiving his first set of hearing aids. The new hearing aids roughly costed $6,000.00. We again were very lucky to also receive the same financial set up, discount, interest free loan, and low monthly payment plan. We just made it over the 36 month replaceable period to utilize our insurance benefit. I am extremely grateful that the clinic offered this financial arrangement plan. With all the discounts, and Insurance benefits applied we still have several thousands of dollars to pay on. Currently the clinic no longer offers this arrangement for children. I hope they reverse that decision for children, I put that in my prayers each night that they will. Cost of hearing aids, repairs when needed, along with the cost to insure them yearly is a costly expense.

If and when Zachary’s hearing loss progresses, this current set of hearing aids may not be powerful enough. The next set of hearing aids to purchase for Zachary is the equivilent price tag of a small car, a college tuition, a fishing boat or a down payment on a house. (Just to give you an idea of cost comparison). We just paid off his first set, and we are still paying on the new set each month. It was also recommended to us that we should purchase a FM System to use at home for Zachary. A FM System cost just as much as the hearing aids. Zachary also needs braces this coming year. Braces cost an average of $2,000.00 - $4,000.00. How do we afford all of this as a family? The cost of the aids are a factor that will “make or break” a child if they are not received immediately.

Zachary struggles with his loss, it is not easy being hearing impaired. People fail to realize that hearing impaired means exactly that “hearing impaired”. What is being communicated is not always understood. Zachary always tells me how difficult it is at school when socially kids/teachers don’t want to repeat themselves and get angry with doing so. He has to constantly advocate for himself to other peers/adults, that they can’t expect him to hear like they do even with his hearing aids. Hearing aids do not work like eye-glasses do to correct vision, but they do make sounds audible. Without aids Zachary would not be able to detect incoming sounds. The difference of having hearing aids vs. coping without is incredibly shocking. It almost seems “Criminal” that we are not providing children with hearing aids at no cost!

This school year I chose homeschooling for my son. I have been battling with the finances of hearing aids, and assisted listening devices, along with the impact hearing loss has on Zachary, emotionally, socially, and academically. Even our school district refuses important needs for Zachary due to cost. It becomes very draining on a parent who has the burden of so much financial obligation to provide important “life tools” such as hearing aids to become our children’s “ears”! On top of all the other important things that they should have as well such as receiving braces, or eye glasses. We as parents then have to choose needs over wants for our kids, and that is hard when you want to buy them a special toy or clothing versus making a hearing aid payment. A lot of family and friends don’t know what it feels like when they flaunt all the material possessions that they buy for their children, and how it makes us feel as parents when we can afford those extras or that we can’t afford a spring break vacation for our family.

We also are a family that is stuck in the middle when it comes to applying for financial aid. We make too much to qualify, and not enough to afford these short-term loan payments. It is definitely a time for change. We need the financial burden lifted from us parents, and more supports made available at school for our D/HOH children. They deserve it! Time when it relates to hearing is not on our side. These are the precious years for learning.

This is dedicated to Zachary, we love and support you always!

Mom & Dad

Karen Henry, Albany WI