During our journey of understanding Jasper, his deafness, his conductive hearing loss, and our desire to fully communicate with him, the one constant in our lives has been his bone conduction hearing aid.
Jasper’s hearing aid has not been working consistently for the last several months. In fact, it has been in and out of the repair shop four times. Prior to that, it hasn’t had any issues despite Jasper’s numerous rock and roll head shakes, though he has worn it since he was five months old, after he was diagnosed with moderate to severe bilateral conductive hearing loss, with an unaided range of about 70. This aid is an analog Phonak hearing aid. At that time, the worst complaint was that he couldn’t wear hats over it without some whistling. Otherwise, it has worked like a charm. Originally, he was getting great benefit and hearing at around 35 - 40 decibels -- a huge difference. It was so exciting to see him add all the words of a sentence and strive to be heard as he creates stories about baby and mama dolphin.
Confusing information about hearing aids makes me feel powerless: who do I contact and what can I expect in the care and maintenance of hearing aids? From the beginning, we were given little by way of a road map. There was no information concerning warranty info, little information on funding for hearing aids or no information on the expected life span of a hearing aid.
We are already living in the moment with Jasper. With a purely conductive hearing loss, the future has always been about taking one day at a time. Since ear canals grow until children reach age seven or thereabouts, we will not know until then whether or not his ear canals might “grow out” of the conductive loss by widening, whether or not he is a candidate for ear canal surgery or whether or not a soft band conductive hearing aid is best. We are especially sensitive to allowing him to decide later in life whether he identifies himself as Deaf or hearing. Another big decision is whether or not to go ahead with a surgical version of a BAHA (Bone Anchored Hearing Aid). All this doesn’t even take into account what research and technology could provide in the next seven years.
With so many wide open options about his future, how do we know what is best? At the beginning, we knew three things: we wanted total communication, we would use a bone conductive hearing aid and we needed a lot of help. From there, due to our persistence more than professional guidance, we received help from our church and the Foster fund to finance the first Phonak hearing aid. We finally had an anchor for our hope to fully communicate with our son: a working bone conduction hearing aid.
At least we had that anchor until several months ago when it began to falter. With little money or time to handle a major decision, we learned that the warranty on his Phonak would end mid April. Of course, purchasing an extended warranty would take a big chunk out of an already tight budget. I am frustrated that we didn’t get advance notice about the warranty much earlier. If there is one thing I have learned as a parent of a deaf child, it is that to be able stay within a budget takes careful planning and awareness of what to account for in the future. It also requires an awareness of deadlines of potential organizations that are willing to help financially. In addition, the transport, the repair time of the aid and delivery back to us expands the time Jasper does not have his hearing aid. As a parent, I can’t have direct contact with the company. All repairs must be handled through a clinic. The entire process of sending it in four times has eaten up about three to five weeks of his learning exploration. We went through all this before we were aware of a loaner program.
Any time the hearing aid is taken off, Jasper himself becomes deeply distressed. While he continues to make great verbal connections and inhale language in all forms at preschool, (which uses both sign and spoken language), he is currently communicating a preference to use his hearing aid and express himself verbally.
While I do appreciate the funding information I have received, packets can be difficult to follow and overwhelming when faced with several big decisions all at once. I am anxious and feel pressured concerning the cost of a new softband BAHA hearing aid when I am aware that we make too much for many programs aimed at poverty level or lower income. We are a one income family and don’t have an extravagant lifestyle, but my husband’s income usually falls over the limit to receive help.
So now, the decision: Do we choose to purchase a warranty on an increasingly unreliable hearing aid that is nearing the end of the average lifespan of a bone aid? Should we take this as a sign that we need to seriously consider a soft-band BAHA? Our new audiologist believes that he could get even better benefit from a BAHA. In addition, the digital components would be more in line with technology of today and of the future. A new soft-band BAHA costs $3500 and unfortunately we live in one of the many states that will not cover any type of technologies, hearing aids or CI’s.
These decisions are coming at a time when he is discovering how to better pay attention. He is able to express that “Baby is loud” when he needs less stimulation for his introversion. He loves words, they calm him down and he loves to express himself to his chosen friends. In fact, at preschool recently, I watched with pride as he “reviewed” to his preschool friends the play-dough face he made. I have never seen him share voluntarily when I wasn’t in the same room with such detail in words, unprompted by the teacher, about his art. He was so proud to share his “boy” and the details of the face and nose. His friends in typical three and four year old fascination, stretched out their hands to him and loudly declared, “I want to eat it, eat it, eat it.”
I am so grateful to Boys Town National Research Hospital for their open communication with me in this decision process. Now, thanks to their help and their free loaner program, we are going forward with extending the Phonak’s warranty and we are exploring the purchase of a soft-band BAHA. For the next three months, I live a mother’s dream, trying out an important piece of equipment before it is purchased. If he needs it, there will be $3500 extra dollars we need to raise.
Now, I do want to clarify that my frustration with this part of the journey does not change my belief that if he only signed that signed communication would still be completely valid. We have loved beginning relationships with members of the local adult Deaf community and we look forward to connecting them to Jasper and allowing him to identify himself in his own journey.
Right now though and in keeping with our Hands & Voices slogan, “what works for your child is what makes the choice right” Jasper is dancing, singing and craving the ability to verbally express himself. If anything, we laugh that Elani, our hearing child of two years, loves to sign and signs more than she speaks. Jasper, on the other hand, who is three and a half, speaks more than he signs. Now that he has a loaner functioning bone conduction aid, it is such a joy that all the silly, wonderful and creative thoughts he has always had are now being revealed more than just to our family but also to preschool and friends.
So my appeal to all professionals and companies is: be inclusive of parents and clients and communicate what to expect when we acquire hearing aid technologies. No company has to promise a miracle to be assured that we will be interested in their products. Be honest and clear in helping us choose. Tell us about warranties and extended warranties, expected lifespan, compatibility with school FM systems or audio equipment, about how much gain is possible with this aid versus that aid should hearing loss progress, and teach us about repair strategies that have worked for other families. If there are loaner aids available while one is in for repair, let us know. My vision is that companies can work more closely, just as researchers do, with parents, that we can provide good feedback and ways that technologies would be improved. Help us know when to expect that a replacement will be needed, so that we can be gearing up for that need well ahead of time. I’d like to see a list of organizations that help but the specific ways in which they help and relevant deadlines and procedures. My vision is that parents have enough time and guidance to properly explore the options of what will help their individual child the best. I have a vision that organizations work more closely with each other at a grassroots level to help streamline the information so that parents are more informed and can make productive, empowered decisions.
While mom is pondering these weighty matters, my son runs up and rubs noses with me. He is baby dolphin and I am mama dolphin. I pick him up in my arms, rejoicing that he is so creative. While we swim the colorful seas, mama dolphin wonders: To BAHA or Not To BAHA? ~
Editor’s note: For more information on these topics,checkou the Colorado Parent Funding Toolkit.
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