Auditory Neuropathy Spectrum and Parent-Parent Support

Hold onto your pants, I'm about to get scientific...at least I'm going to try *smile* One of the major components of NHS 2008 was a consensus meeting on Auditory Neuropathy. Auditory Neuropathy is a variety of hearing loss in which the outer hair cells within the cochlea are present and functional, but sound information is not faithfully transmitted to the auditory nerve and brain properly.

Even with Universal Newborn Hearing Screenings (UNHS) being mandated in 37 states in the USA, sometimes children with hearing loss remain undetected at birth. Auditory neuropathy is a prime example, as most UNHS programs utilize either the Auditory Brainstem Response test or the Otoacoustic Emissions test as a screening tool. Rarely are the two used in combination due to the staggering cost necessary to implement such a program. This is an unfortunate reality for babies with Auditory Neuropathy- it is the distinct combination of present Otoacoustic Emissions and absent Auditory Brainstem Response that usually send up the initial red flags. However, parental suspicion of a hearing loss continues to be a trustworthy screening tool in the unfortunate event that Auditory Neuropathy would go undetected at birth.

If a parent suspects a hearing loss, that is sufficient reason to seek professional assessment of the child by an audiologist. The sophisticated family physician will recognize the need to refer to an audiologist if a parent expresses concern about hearing loss or speech delays. An audiologist is a specialist in the domain of hearing assessment, hearing loss, and aural rehabilitation. The audiologist can be extremely useful in the provision of information needed to guide newly diagnosed families.

*That was your background info, limited, I know, but that's about as much as I can understand about Auditory Neuropathy*

At the NHS 2008 Conference a panel of experts was deciding whether to change the term Auditory Neuropathy to:
Auditory Neuropathy (leave it alone)
Auditory Dys-Synchrony
Auditory Neural Disorder
Auditory Neural Spectrum Disorder
Huge debate, there was a panel of like seven Audiologists/Scientists including:
John Shallop, Gary Rance, Chuck Berlin, UUs,K etc and a moderator (whose name I did not catch:().
One Audiologist started speaking unintelligible medical jargon and
they were all debating over what the condition should be called,
should it be a disorder, a syndrome. One Audiologist, Deborah Hayes, (love her)
suggested Auditory Neuropathy Spectrum which I liked, because then
the Audiologist could explain the specific condition to the parent
when required.
The "Bigs" started ripping it apart and arguing. I stood up and
asked for the microphone (since the debate was open to the public) and said this:

"My name is Jodi. I am just a parent. I have tried to understand Auditory Neuropathy, and I find it extremely complicated. However, I do know that on the support groups when another parent asks a question about Auditory
Neuropathy, we have reached the point where someone on the group can
explain the condition and lead that parent to a specific support
group. This is already significant progress in helping a parent.
When that audiologist started explaining her diagnosis, not only did
I not understand a word she said, but it sounded scary and parents
do not need to be scared. Therefore, I support the term Auditory
Neuropathy Spectrum."

A pediatrician stood and supported me and said, "Those of you on the
panel are the leaders in the field, but not all pediatricians or
audiologists in my country are able to make the same type of
diagnosis at the level the panel is...(she was from New Zealand)"

Another speech therapist said, "I agree, I'm lucky if one out of a
hundred has even heard of Auditory Neuropathy."
Suddenly, the moderator of the consensus meeting turned red and
looked humble as if she suddenly realized that there were also the
parents and families to consider in their intense talk of their
latest scientific findings.

*Note: I really believe that sometimes scientists are so busy discovering new diseases or treatments, and THANK GOD THEY DO, that they lose that human contact that keeps them in touch with the very people they are truly working for...WE, THE PARENTS, but especially OUR KIDS*

They decided to name it as Auditory Neuropathy Spectrum.
The Audiologist thanked me afterwards.
What an unbelievable experience to speak up for parents in a Conference where we should so obviously have a voice.

When I "left this message" with the Pediatric Cochlear Implant Circle, one of the moms posted this:

We had a UNHS national meeting in my home city many years ago, I was asked as
the parent rep to that. You are so right these professionals are all well meaning but they often get so caught in the details they miss the most important part, the child and their
family!

Like when I was there they were arguing about whether they just do high risk
screening or screen all and does a complete screen get enough more than high
risk to argue for the cost. Then they got on to maternal depression about
discovering their child had a hearing loss.

I stood up and spoke to them of the many parents I have met and communicated
with who did not find out their child was deaf until they were 2 or 3 years old.
I shared with them the guilt they feel because "they didn't know, or should have
known, doesn't that make them a bad parent"....as you said Jodi my answer to the
maternal depression issue is to build support for parents into the protocol and
make sure they are supported through the process.

Here when a child is diagnosed there is a person that goes to visit the home
to discuss different options available with the parents. We have just recently
reaffirmed that relationship with that person and now when they go to visit the
parent they ask them if they give permission for their contact details to be
given to our state parent group so that another parent can contact them.

It has been brilliant!!! I have called mothers whose hearts are breaking, who can
barely string 2 words together without crying, I speak to them for as long as
they need and then tell them to call me anytime or I will call them in 2
weeks just to check in on them...the difference 2 weeks later always makes me so
happy, you can start to hear that strength coming back, that mummy gene kicking
in to do what it takes for their child.

The Medical Community plays its fundamental role, but so do the parents. Just imagine what could happen if the two came together in a collaborative effort...

PS. Auditory Neuropathy Listserve

Description
The intent of this listserve is to provide information and emotional support to parent's of children diagnosed with Auditory Neuropathy and/or Auditory Dys-synchrony. We will share our experiences, problems, successes and failures, as well as, strategies used in dealing with a child that "Is not deaf....but can't hear". Parent's often feel more isolated than the parent's of a 'typical' deaf child. This is a relatively new area of audiology where many professionals disagree on management of the condition. Many of us have received conflicting advice concerning our children's diagnosis and it's management.
Professionals that deal with children diagnosed with auditory neuropathyand/or Auditory Dys-synchrony as well as, adults with the diagnosis are also welcome to join.

Auditory Neuropathy is characterized by a pure tone loss (most cases) with poor speech discrimination in relation to the pure tone audiogram, absent or abnormal Auditory Brainstem Responses (ABR) and normal cochlear outer hair cell function when otoacoustic emissions (OAE's) are tested. Many audiologist's are simply unfamiliar with the issue's faced in parenting an Auditory Neuropathy child. Resources dealing with this problem that are written in layman's terms are limited. As parent's, we must learn all we can about the disorder so that we can become advocates for what these children need to obtain language.

We have chosen varied methodologies and/or strategies to educate our children. These choices were difficult and were made based on what we, as parent's, felt was best for the family and the child. We CAN discuss our personal experiences with a methodology, in relation to how successful it has been for our children with Auditory Neuropathy. PLEASE SHOW RESPECT TO THE CHOICES OF OTHER FAMILIES.

*****Debating methodologies is NOT appropriate on this list.*****