In a homeschooling house full of 7 kids & 3 guniea pigs....there is never a dull moment! A lot of people show genuine concern for us and want to know how we are doing, as the road we've left behind was not a pleasant one. So, here I am, to tell some of our stories...share some of our days...and open up a part of our world to you! Come join us on our journey so you won't miss the moments that take our breath away!

Wednesday, November 23, 2011

Just a Bump in the Road :)

Duckling entered into an unfair world of uncertainty, in more ways than one!

Since the day she was born, she has overcome every challenge that has been laid before her and those who know her know how MANY obstacles she has had thrown her way.  Just when she overcomes something, a new detour is put in her path and the bigger she gets, it seems the bigger her challenges get. 

At a quick glance and to those who do not know her, you would never know that she is any different from any other little girl.  Even to some who do know her, they are too blind to see the difference.  She looks and acts just like everyone else, although, she seems much younger than her actual age and most everyone forgets that she is as old as she is and often, I've had friends or family members say to me "Are you sure she is deaf"? simply because she is capable of reacting to sound.  It's extremely difficult for people to understand her hearing loss.  She is deaf in one ear and currently has normal hearing in her other ear...they think that means she has normal hearing.  

She has had many other health issues unrelated to her syndrome and she has been in and out of different therapies since she was born.  She is currently followed by 9 different types of specialists, so needless to say, she keeps us very busy! 

She was fitted with a traditional hearing aid when she was 5 months old.  A little more than a year ago, she began refusing to wear it and in addition to that, her general safety had become a growing concern (she was unable to hear us warn her that she was getting too close to the street and it was difficult for her to be fully aware of our whereabouts when we are out in public).  A few months ago she underwent further evaluations.  Her hearing test confirmed that she no longer had any usable hearing on her aided side, so there was no way to "make" that ear hear.  She also underwent an updated speech and language evaluation and it was determined that she was severly delayed in her language.  At 41 months she was testing at a 19-24 month level. This severe of a delay is not typical for children with a unilateral hearing loss or for children who suffer from her syndrome.  Recently, she was fitted with a bone anchored hearing aid.  The hope was that she would be more aware of her surroundings, her safety would not be as big of a concern and that with extensive therapy, her language would improve.  Initially, she did wonderful with the bone anchored hearing aid.  We noticed a remarkable improvement immediately.  Her hearing was tested and she tested in a "normal" range.  This was a very short lived experience and it seems that we have taken a step backwards once again.  She has a great deal of difficulty when we are in a public place.  We are becoming more in tune to her behaviors and others people who spend a lot of time with her are beginning to notice things as well. 

Yesterday, she was evaluated by an Auditory Therapist and a lot of things came to light!  After 2 1/2 hours of testing and being fed valuable information, so many things began to make sense.  A lot of the things we went over were nothing more than review as we have dealt with these things for almost 4 years now, but there was so much new information as well.  We know that she "can" hear with her Ponto system, however, it has been discovered that there are issues with her Auditory Processing.  Her biggest challenge is that she is unable to hear adequately in a noisy environment and this often compromises her safety, both at home and away.  She is already losing independence and is lacking confidence and the ability to handle outings in our normal daily life.  No hearing aid will ever "fix" this problem.  We are exploring the possiblility of obtaining an FM System, but since we are not sure if she would be able to process the information she hears, this may not be the answer, so a service dog may possibly be in her future! 
It is always difficult to hear what we already know!  I watch my daughter everyday and I have always known that she lives in her own little world...but when a specialist tells you "she lives in her own world" really hurts!  In the process of normal developement, children hear what is going on in the world around them.  As parents, we speak differently when we direct conversation to our little ones as compared to when we are speaking to someone else.  Children take in everything they hear.  Duckling does not have that same advantage.  Duckling only hears some of what is directed towards her and what she does hear isn't properly processed.  We are now learning that some things we may have thought were behavioral are actually problems with her ability to process what she hears.

 We have to keep moving forward and learn all that we can along the way. It will be quite some time before we will know if she actually has an auditory processing disorder.  For now, what we do know is that her brain is unable to block our unimportant noise so that she is able to hear what she needs to, she is unable to correctly process all of what is being said to her, she is unable to recall information and she is already having problems with subject/object reversal, etc. and the odds are against her because statistically, she is 10 times more likely to fail a grade in school than a child with normal hearing and over one-third or up to 40% of children with UHL fail one or more grades.  Luckily, as homeschoolers, we will be able to cater to her every need.  We will continue to be aggressive with doing all we can do for her and to ensure that she will develop to the best of our ability! 


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