16 January 2011

Being a Strong Advocate: A Success Story

Over the past 2 1/2 years my wife and I have had to wage many battles in the name of advocacy for our son. None of those have been more important or as frustrating than the advocacy surrounding his hearing. It's been amazing how much resistance and how many roadblocks we've encountered on a matter that has been deemed so important to the success of the child's development. Despite these hurdles we have continued to diligently advocate and actually achieve a few small victories. While we are far from winning this particular battle, we feel for the first time we are on the correct path toward success. This segment of his hearing battle started a year ago. Due to the complexities of his airway ENT was able to validate his hearing as a secondary priority. They truly had a valid point that we accepted and understood but we refused to concede. The focus was the first principle of medical priorities known as the ABC's of medicine. These are airway, breathing, & cardiac. I remember the pivotal discussion that would become our first small victory. We explained how we understood and respected their logic based on the ABC s but added that our son too needed the ability to learn his ABC s. We raise the notion of adding a second ENT that would focus solely on hearing and the idea was received well, put into effect and ultimately worked out and my son's favor. Our initial ENT specialize in airway and the addition of a second EMT provided us with someone who specialized in the ears and hearing. So far it is worked out wonderfully, but had we not continued to advocate & provide a strong case our son would not be in this scenario today.

Once the second ENT was brought on we were able to move forward with an ABR test for hearing. This would be his second since we had transferred his care to this new hospital. They wanted to do their own assessment, understandably. The results however were completely different. We proceeded with intervention based on the second test results which was for a conductive hearing loss. We met with an audiologist and a BAHA was tried. Unfortunately there was no response. We again began to question the different test results, and had some issues and resistance with our audiologist. Finally we were able to meet with the ENT who offered a theory of central hearing loss as an explanation for the lack of response to the amplification. Central hearing loss is rare and difficult to understand so a pragmatic approach is necessary by everyone on board the team. At first their plan was for us to just have him. continue to wear the device and hope that the pathways would eventually open and he would begin to respond. After several months and no different results intensive aural rehab therapy was suggested. This is the process of learning and recognizing input versus speech therapy which is about output. We've done this now for six months. Over the past six weeks we have met with various members of his hearing team and everyone was a little perplexed. We had been told this process could take as many as five years but everyone was hopeful that it would come sooner. During this whole process we had been questioning the settings on the BAHA device as a possible issue. This week we were finally able to get in to see another audiologist to check these. They were indeed a little too low. After conducting a booth hearing test this week, for the first time our son responded to sound. The booth is a very controlled environment with the ability to control frequency and intensive of sounds to determine hearing thresholds. In two previous booth tests our son has not responded in any fashion. The frequencies and intensity he did respond to this time are not ones that he would hear in the real world environment. Still this is a remarkable improvement and tells us that the path and interventions that we are doing are the correct ones. This is something everyone was beginning to doubt. It was exciting and promising to know that the interventions we are using are starting to pay off.

Reflecting back on all that we have gone through up to this point if we had not advocated so persistently and persevered through all the struggles the chances we would be where we are today are slim. It is another small victory and step in a positive direction in our advocacy battle for his hearing and communication. We've always been strong advocate for him and this example reaffirms our beliefs in doing so. Persistence, perseverance, and patience has all paid off but we must not let up now. As parents we must trust our instincts and allow our hearts to be understood. Our love for our children drive us. We know our children the best and are truly the only ones who can advocate effectively for them. We have to remind ourselves that this is important and allow no one to create a barrier without strong evidence. It is our responsibility as well to provide evidence for why we feel whatever we are advocating for is the proper action. If you take the time to collect your thoughts and present them in a logical and rational manner nine times out of 10 you will succeed. Remember this,if we do not advocate for our children who else will? There are many times throughout this process where I almost gave up. At times from feeling overwhelmed by frustration, unheard, or just weary from all the fighting. That is why I am sharing this success story. While this is an ongoing battle we know how to continue and that our tactics have been effective. Sometimes even the smallest motivation is all we need to keep pushing. Be a strong advocate!

Please take a moment to share your thoughts in the comments below. 
Thanks for reading my point of view! 

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