by Marty Barnes
My daughter Casey has both hearing and vision impairments, along with multiple disabilities. This is the story of how we determined her diagnosis, which is common in children with multiple disabilities.
Shortly after Casey was born, while we were still in the NICU, we were told that Casey failed her hearing screen, but that many babies fail this test. They went on to tell us that they would be doing additional testing, and that we should not worry about anything just yet. They performed an additional Auditory Brainstem Response (ABR) test to fully measure Casey’s hearing. After this test we were told that Casey was in fact deaf with moderate hearing loss in both ears.
The doctors told us that Casey would possibly stop making sounds as she aged. Doctors said that she could not hear external sounds, but also that she could not hear her own sounds. We were told we should expect her to stop trying to make sounds all together.
When I was told she was deaf I understood that she wouldn’t hear me, but it never occurred to me that I would not hear her. Until the doctors explained that she could not hear her own sounds either, the diagnosis didn’t really sink in.
The good news was that doctors said that children with brain injuries like Casey tend to improve with time. Since she was not completely deaf, but moderately deaf, they said that hearing aids might help as well.
I soon learned that hearing aids are not typically considered medically necessary, and therefore are not covered by insurance. I know, WHAT?! I later found out that Medicaid and Medicaid waivers will cover them, but standard insurance will not typically cover them. I called every day for weeks and fought with the insurance company and filed appeal after appeal. Somehow, I did eventually get them covered, but it was a lot of work.
We did not see much improvement with Casey’s hearing when she wore the hearing aids. Over time, we gave up and stopped putting them on since they just seemed to make her mad anyway.
Near Casey’s first birthday, she had her vision tested. This led to multiple retests, and soon after it resulted in a diagnosis of Cortical Visual Impairment (CVI). We were told that Casey was legally blind. Here’s how doctors explained the CVI diagnosis. Casey’s eyes work fine; they were healthy. It was the wiring that transmitted what her eyes saw to her brain that was the problem.
In addition, the brain injury from birth also damaged Casey’s optic nerves. She is not able to blink or close her eyes. When she falls asleep her brain stops sending the “open” message to her eyes, but the “blink” or “close” message is never sent/received. When Casey is asleep her eyes are less open than when she is awake, but they are never fully shut. This leads to dryness and severe light sensitivity, in addition to the CVI.
At the time, since she was already receiving PT and OT through Early Intervention Services, we were able to add on vision services. Doctors hoped that with vision exercises and hard work Casey could retrain her brain to interpret what her eyes were seeing. We were told the wires would always be crossed, but that it was possible that she could learn to work around it.
Casey started seeing a low vision specialist and got her first pair of glasses. The glasses were more to protect her eyes than to improve her vision, though. They did have a slight adjustment, but they worried that trying to correct her vision too much might actually cause headaches and make her less willing to work on her own to strengthen her eyes.
We were so focused on dealing with each of her diagnoses individually, that it never crossed our minds that Casey’s combination of diagnoses was actually its own diagnosis, deaf-blind. It wasn’t until around Casey’s third birthday, when we switched over to the school system and started getting vision services through a state program, that our case manager referred her to the deaf-blind specialists. Of course, then it made perfect sense, but we never thought about it that way before.
Casey is now nine years old, and her vision and hearing have both improved a lot over the years. Her sounds increased with time. She loves music and movies. She responds to sights and sounds in her environment. However, when she is out of her comfort zone, her brain tends to get a little excited and we notice it is much harder, or even impossible, for her to hear and see in those settings.
She still is not able to pass hearing and vision tests, and we still have the diagnoses of moderate hearing loss in both ears, CVI, legally blind and deaf-blind. For us, it has actually been a good thing. With these diagnoses there have been some services and equipment that Casey needed over the years that we would not have been able to get (at least not easily) without these diagnoses.