ALEX GETS HEARING AIDS

We went to Alex's appointment today. Alex was very excited to get his aids.  When she asked how he felt about it, he beamed.  He was clearly happy to be getting them. She started by telling us how she programs the hearing aids to an individuals specific audiogram.  She was quite surprised at the difference between speech perception with out programming to the perception with the programming (the computer gives a sample).  While she knew there was going to be a difference she was not expecting it to be so pronounced.  Already excited, this makes me really excited and hopeful for the future.  While I know that this may not make a difference in speech and I have to brace myself for the worst, I still maintain high hopes. After all, Faith requires hope.


  

AUDIOLOGY: A DERIVATIVE OF WORLD WAR II

My husband and I were talking last night on an issue that had arisen (I will probably discuss them in a later post) and he stated that audiology is very far behind in comparison to the other fields of Medicine.  Would any of you be surprised that it triggered my mind into thought?  So I find myself today trying to find a comparison of how far behind the medical field audiology really is.
  
In my searching I found that the American Medical Association met for the first time on May 5, 1847.  I also found that "By 1930, nearly all medical schools required a liberal arts degree for admission and provided a 3- to 4-year graded curriculum in medicine and surgery. In addition, many states also required candidates for medical licensure to have completed a 1-year internship in a hospital setting in addition to possessing a degree from a recognized medical school." (source) If you recall in my post entitled 'Audiologists Sent Back to School' the requirements for the new AuD degree were changed in 2007 and is basically a 4 year degree in communication or similar with roughly 3 years of coursework in Audiology and 1 year of supervised experience. The American Academy of Audiology was developed in 1988. (source)

• In reviewing publications, the first time the words Audiology and Audiologist was used was in 1946 and it is unknown who came up with the terms. 
• The first university course in Audiology was offered by Northwestern University in 1946 
• Audiology was born of hearing aid dispensers to address the hearing damage from World War II.                                                                                                                                             (Source)

I honestly do not know how to describe what I felt when I read these three statements, especially the one about World War II.  Basically there was no interest in hearing health 'til there was a mass number of people who were suffering from a hearing loss.   There was no help for anyone prior to then, they were honestly deprived. I could not imagine being in my position or more so in Alex's position at that time. However, I imagine it would not be much different than how we have been living for the last 2 years, because we knew Alex had the disability during this time, but could not get help.  As I struggled at this realization, I remembered that school was not so hefty then as it is now and the technology that is available today was not available then; somehow these thoughts made me feel a little better. 


To return to the question, how far behind is Audiology in comparison to the Medical field?  Well if we take into account that Medicine was practiced in Colonial America in 1600's, then Audiology is a mere 300 years behind.  However if we take into account when the AMA was developed versus the AAA, then it is only 140 years behind.  If we take into account the time that the MD degree was created versus the comparable AuD degree, then it is only 80 years behind.  With the technology that is available in today's world and Audiology only in its youth, I believe the field of Audiology will catch up rather quickly.  The next decade will be an exciting time.

AUDIOLOGISTS SENT BACK TO SCHOOL

See in the past Audiologists were able to get a degree by simply completing a Masters Degree in Audiology (they were not held to the same standards as a doctor). The original Masters Degree in Audiology was intended for Researchers or Instructors. In 2007 the American Academy of Audiology (AAA) changed the degree requirements for licensing in Audiology (coincidentally after the Joint Committee on Infant Hearing (JCIH) came out with their Position Statement; quoted in the last blog post) . It would no longer be acceptable to have a 4 year Bachelors degree and 45 credit hours focus in Audiology; it was recommended that Audiologists with this kind of degree went back to school for an AuD degree. There was so much information that changed in the world of Audiology they needed to make sure that Audiologists were up on the issues, they were also concerned that coursework offered little help in aiding the public. Audiologists now must have at least the AuD  which requires a bachelors degree with an emphasis on communication disorders, an additional 75 credit hours post baccalaureate course work in  Audiology, 12 months of supervised experience in the field, and passing all necessary exams. (History)  

AUDIOLOGY STILL CHANGING

So then came the glorious year of 2007. In 2007 the Joint Committee on Infant Hearing (JCIH) mentioned the following in their Position Statement, “Developmental monitoring should also occur at regular 6 month intervals for special populations of children with hearing loss including those with minimal and mild bilateral hearing loss, unilateral hearing loss, and neural hearing loss, because these children are at risk of having speech and language delay.” (pg 21; JCIH).

Yes, you are reading it right, it states in simple black and white. 'A Minimal loss can cause speech and language delay' (minimal does not sound so minimal, what a 'BAD' word). As you learned in the last post, Alex had a known 'Minimal' loss at 2 years old according to the JCIH, minimal loss could cause a speech and language delay. Alex has a speech and language delay, he has never had the opportunity for hearing aids, so hearing has not been ruled out appropriately. Any scientist knows that in order to properly rule out a possibility, you must subject your hypothesis to the condition. You never make an assumption.

THE CHANGING WORLD OF AUDIOLOGY

This decade (2000) has been a great decade for Audiology. Alex being born in 2001, just missed the cut. Let me explain myself.

1) We will start first with degrees of hearing loss. According to AHSA (The American Speech-Language and Hearing Association all Audiologists and Speech Therapists must be certified by ASHA) a slight hearing loss is from 16dB - 25dB ASHA Loss Configuration .  (Back before 2003 a hearing loss was only considered at 25dB or greater.  Many kids were swept under the table. Many Audiologists that went to school before or around this time period still use the old school for amplification)

2) In 2003 The American Academy of Audiology published their new Pediatric Amplification Protocol, where they state “Special consideration should be given to the fitting of amplification on children with unilateral hearing loss, minimal or mild hearing loss, profound hearing loss, and auditory neuropathy.” (pg 3; Pediatric Amplification Protocol).

In 2003 they had determined that a 'minimal' (or not so minimal) hearing loss was a problem for children and they knew that amplification was necessary. However, since Alex was born and failed newborn screening prior to 2003, he was lost to the system. By 'lost' I mean he was born in 2001 before they started to follow infants who failed their screening. Alex was just making it in for a 2 year old hearing check up to enter Early Childhood Intervention, when this 'new' information was coming out. So when he registered a threshold of 25dB, it did not matter to the Audiologist; she did not know better for it was not advised at her time of schooling.

AND WE DID!!

I started slowly with a call to her and then emailing documents to her; she was very confident in fitting Alex with Aids. So we visited her today (April 8, 2010). She did not need to do any additional testing, because his tests have been ‘extremely consistent’. She just fit the molds, let us choose an aid, had Alex choose his colors, and we were done. They even have a built in FM system. Two weeks (April 28th) and $5000 out and this part of the journey is over. YAY!!   (Alex's Hearing Aids) The most expensive sleeping pills (and only ones) I have ever bought!  : )

Another testimony we (Saul and I) receive that “God does notice us, and he watches over us. But it is usually through another person that he meets our needs. Therefore, it is vital that we serve each other in the kingdom” (President Spencer W. Kimball (LDS.org Kimball). I do believe that service could be just a simple expression of an experience or passing along some information that may help another, just as the lady at Chili's and the Mother of the child at church did for us.  I can only hope that the information I place on this blog will help improve the quality of life for another hearing impaired child, no matter how mild the impairment.

HEARING AIDS

I was elated! Finally, he would get hearing aids!! I was even more happy when she told me that she wanted to have him get a bone conduction hearing aid. (For those of you who are not familiar with Audiology, when an audiologist does hearing testing they will perform an air test through the ear using inserts similar to ear buds first. If the scores are not normal they will perform a test that uses the bones behind the ear as the mode of ‘conduction’ to the cochlea. If there is a difference in the score then they look if you have an ear infection, problems with the ear drum, etc. If all is clear the patient has hearing loss.) So any how, I was so glad that she was going to give him a bone conduction aid, because I had seen the tremendous change of the energy in his responses to the sounds when bone conduction was used. I knew it was the best choice.

At the cost of $1000, He got his headband at the beginning of March 2010 (Bone Conduction Hearing Aid). The Audiologist completed testing with it on and to my dismay it only improved his scores by 5-15dB;  bone conduction equipment used for the testing mentioned above showed improvements between 20-40 dB. I talked to her about air conduction aids and she felt that they were too powerful for him. So we took the bone conduction aid. After using it for two weeks, we had noticed another child at church wearing hearing aids. I immediately went and spoke to the parents.

I found that he had the same hearing loss as Alex; like Alex he also had failed newborn hearing screening. (Here comes the question! How is it that air conduction aids are too strong for Alex and not for this other child?) And the mother, very similar to me, felt her toddler heard fine. . . that is until he put on the hearing aids. So in talking to this mother, She let me know that the Audiologist they were working with was a Pediatric Audiologist from Florida (the one we were using was an Industrial Audiologist). I needed to hear nothing more than ‘Audiologist’ and ‘Florida’ to know that this was the person we needed to take Alex to. (In my searching I found out that Florida along with Colorado are the leaders in infant hearing)

RETURN TO THE BATTLE FIELD

After some time, I decided that I needed to call the Audiologist in Colorado who wrote the guidebook for Infant Hearing in Colorado. Vickie Thomson was very sweet she was concerned that no one had given him intervention especially with as much effort as we were putting out. She gave Arkansas Children’s Hospital a call for us and at her request they called us to talk about our concerns. They told us that if we thought that he needed hearing aids they would get him them.

So we returned to ACH it is now October 2009. We were relieved to know that we would finally be getting our son hearing aids. You would never guess that despite their reassurance over the phone and the fact that Alex’s hearing was 5dB worse, they sent us home without hearing aids. I was out of energy I felt dejected, and think I actually ‘threw in the towel’. I decided that perhaps I really did not know what I thought I knew, perhaps I WAS crazy. (If I wasn’t I sure was going there. . .you are so glad if you did not have to witness this!!)

It is at these times that the spirit usually speaks to me or Heavenly Father sends someone in my path; when I am out of physical strength and power, and my ‘will’ has all but died; when I am running on energy that has only been lent to me. In mid December 2 weeks from our perfect benefits expiring , we went to Chili’s for Dinner. It was a Thursday and usually if we went out to dinner it would be a Friday night or Saturday and it is a place we don't usually choose due to the high number of cheese laden dishes. There was a family in the waiting area with 3 children 1 had two cochlear implants, 1 had two hearing aids, and the other had no hearing aids. I started to talk to the Mother about what we had been going through. She told me about how they were received when they came to Arkansas. Their son with implants had received one before they moved here (Implants at the time were done one at a time). After they moved here he was scheduled at ACH for the second, but when they went for it, the Audiologist did testing and told them that his hearing was fine on that side; he did not even need a hearing aid?! They took him back to North Carolina where their doctor retested and placed the second cochlear implant!! She finished by telling me that if I thought he needed hearing aids, ‘then hang in there and fight for them! And if you need to go to Colorado for them do it!‘ (Hooray!! Maybe I am not crazy.)

We scheduled an appointment for Alex with the Baby’s audiologist for December 22. In our previous discussions as she tested the baby, I let her know that I felt Alex was reading the Audiologists in the past. From the beginning she turned Alex so his back was to her and there was no minute chance he might see her even from the corner of his eye. What happened next, I was never in the slightest bit expecting. His hearing scores were at 40dB, she scheduled us for more tests 6 weeks later. Tests in February revealed the same. So either his scores dropped a full 20dB in 2 months or he had been reading the audiologist to perform at 20dB for the last 2 years. (Now for those of you unaware, this is a huge drop. It could only have been due to a Cholesteatoma or a Brain tumor if the loss had not already been there.  These issues also rarely affect both sides and if they do the possibility that both sides are affected equally is highly unprobable.)

LEARNING AND LOGIC

At the first test his hearing across all frequencies was was an average of 20dB which I learned was comparable to hearing one forth (25%) as loud as the average normal hearing individual (About Decibels). They also tend to miss 10% of the information that is spoken to them and have greatest difficulty in group learning (Colorado Hands and Voices). This just did not sit well with me. All of Alex's early intervention services were in a group environment. Besides, when is 50% ok, least of all 25%?

Why is it ok to hear 1/2 as loud as others? Now, I was a math teacher, any of my students who got 50% failed the class and could not go on.  Can you imagine hearing a lecture at the level of a whisper? . . .And missing 10% of information; that means a child with this level of hearing impairment could get only a 90% at best in my class. That is if they came every day and understood and retained the entire 90% they were entitled to by their hearing scores. How would any of you feel getting only 50% of your salary; 25%? Ok, sorry (your name here) you were on our list for a 50% salary garnish, better luck next time!!?

I also learned that in Colorado and Florida they put hearing aids on babies with this level of impairment (pg 16 Colorado Department of Public Health). We had looked back at Alex’s records and found he failed his newborn screening and at two years old his first behavioral test was 25 dB. We sought help from Arkansas Children’s Hospital, because we knew that if anyone was going to pay attention to us, they would. A visit to AR childrens was nothing more than disheartening. They made us feel THIS BIG.

Just 6 weeks later we had Levi. He also failed his newborn screening and was clearly not hearing any sounds for 4 months (a balloon pop, a door slam, yelling, nothing). After 4 months he was slowly coming out and by 6 months the ABR tested 30dB in one ear (mild loss) and 75dB (severe loss) the other (ASHA). The audiologist that tended Levi was concerned about him. As we conducted the tests we had time to get to know her and we felt comfortable. We were able to discuss our issues about Alex.

3-4 YEARS LATER:

A Department of Education Speech Therapist disagreeing with Apraxia and a school system pushing Autism; we went on a formal diagnosis search. That is after eight years of professionals guessing at no expense to us; we took the poor guy to a Geneticist, Endocrinologist, Cardiologist, Otolaryngologist (ENT), 3 Audiologists, Psychologist, Speech Therapist, Social Worker, a Nutritionist, an Allergist, and a Developmental Pediatrician (I think that is all of them). We did genetic testing, a heart sonogram, thyroid testing, full scale Audiology including speech measures at least 5 times, kept a food diary, followed every recommended diet, completed a formal growth hormone test, and had one surgery all in one year (except for the diets, which were two years).

We were relieved to find that we had a relatively healthy son! He eats really well, produces enough growth hormone, his genes are perfect (could have known this by looking at his parents. . .lol), his heart beats, and he has an average IQ. The only issues that were unresolved were a heart murmur, unintelligible speech, and 40 dB low frequency hearing loss. WHEW!!

About $50,000 later (luckily most of it was not out of our pocket), our year of top quality health insurance was over and we were out of time to resolve our issues with Audiology (the hearing loss). But that is ok, insurance would not have covered it anyway. We were hot on the topic of Audiology, because as the school was in their push for Autism they allowed me to witness the testing they were performing. As I had watched the testing, I witnessed some things that said, ‘Hey, he is not hearing!!’ So I took him right in for a test. I was really perplexed when we compared his current results to his past results and they were the same. No one had ever brought it to our attention, so I went on a search to learn everything I could about hearing.

ALEX

Alex loves camping, riding his bike, playing soccer with his best friend Will, and absolutely LOVES Boy Scouts (this means he has fantastic leaders!!).

Alex has been in speech therapy since he was two, largely in the public system in group therapy, with 1 hour of individual therapy a week. At four years old our speech therapist talked to us about Developmental Apraxia of Speech and told us that usually professionals would not diagnose it formally until about 7-8 years old, but she thought this might be what he had. For those of you who do not know what Apraxia is there are two kinds one that is a result of brain damage that a stroke or head trauma could cause, and the other that a child can have as a result of the brain not developing the ability to communicate with the structures of the mouth. So when we went to have him evaluated by the students at the Speech Hearing Clinic at U of A in Fayetteville, we were pleasantly surprised to see that they marked Apraxia as the diagnosis in their paperwork in order to help us get an Augmentative communication device (This is a device that is much like a large palm top with touch screen, that essentially speaks for the child). For those of you who know me I am a penny pincher and take every opportunity to save a penny. I knew I would be saving a lot of pennies on a formal diagnosis 3-4 years later.

INTRODUCTION

My motivations in blogging have been purely from reading the blogs of other parents who have experienced trials. Trials from fertility and raising disabled children are probably most prominent. I find it most purposeful, because these individuals have managed to keep topics that, through my own experiences, I find very trying to stay positive with. So, yes, this blog is my attempt to keep in the forefront of my mind the wonderful experiences that My husband and I have been able to have raising 3 special needs children and 1 who is just special.