Lilly News

Have lots of news on Miss Lilly.

She is having a great year in Kindergarten. We love watching her learn and grow. She is making great progress in reading, writing and math. She is also doing well with Mandarin Chinese! She is Student of the Month in her class!

Here is a link to the school web-site. You can see her picture and read what her teacher wrote about her! http://www.oregontrailschools.com/299820111917106820/site/default.asp

We have some news on her hearing issues. She has had a lot of appt's, evals and tests lately and has a few more to go, bless her heart. She has handled everything very well and is really doing great. We have known since she was 2 that she wasn't hearing at 100%. She qualified for early intervention services and started speech therapy shortly after we found all this out. She did 2 years of speech and was talking clearly by the time she started her 2nd year of pre-school. I was relieved that she had made such great progress with her speech. I didn't want her to go into kindergarten with an IEP for speech, hearing, etc unless it was absolutely necessary. All of the doctor's and specialists couldn't tell us at that time a whole lot about what caused her hearing loss, how much she had, what type, etc. It was really difficult to find answers. We knew that we would have to wait some things out and that we would eventually get some answers. We are starting to cross that bridge now. After some recent testing, we have been told that her hearing loss is likely Sensorineural hearing loss. This means that there may be some problems with the nerves connecting the inner ear to the brain.
In the inner ear, tiny hairs on the cochlea act as a neural pathway, transmitting through the inner ear. Usually, problems with these hairs on the cochlea are responsible for sensorineural hearing loss. It is usually permanent and present at birth.
She is scheduled for an Auditory Brainstem Response Evaluation Test (ABR Test) on the 16th of this month. (less than a week away) It is a lengthy test and she has to be under anesthesia. We will be up at OHSU for it. This test can identify cases of sensorineural hearing loss. It is a sleep EEG hearing test which shows the softest sounds your child's ears can detect at various pitches. The ABR compares changes in brain activity to the timing of repetitive sounds to determine whether the particular intensity of sound can be heard. Sounds will be presented through an earphone to each ear separately while a computer analyzes the changes in the brain wave pattern in response to sounds. We will be in the room with her during the test, and the results will be explained immediately afterward.We are a bit anxious about it, but will also be relieved to get some more definite answers about what is going on with her hearing and how to best communicate with her, what steps may be necessary to improve her hearing, etc.
She will likely be diagnosed with CAPD- Central Auditory Processing Disorder. We have been working with this diagnosis for awhile and communicating with her as if she already has it because she shows almost all signs of it. This ABR tests will more than likely just confirm the type of hearing loss and decide whether or not she needs hearing aids or maybe a cochlear implant. I will get in to the CAPD symptoms and treatments in more depth after we get through this next test. There is a lot of info on it. Here is just a little piece of it- this sort of describes how Lilly responds when she is being asked to do something or follow directions. Her biggest inability at this point in time is "the inability to tune out background noise", it's very hard for her to focus or hear what she needs to hear when there is back ground noise or when someone is speaking rapidly. She is definitely struggling with the Auditory Part of Hearing.

The easiest, quickest way to communicate is simply to say something and then deal with the other person's reply, right? Except that if your listener has a CAPD (Central Auditory Processing Disorder) your remark might come through with certain words drowned out by other noises, or with some words sounding like different words or as meaningless strings of verbiage. You might begin to suspect this when the other person's expression doesn't register understanding, or if she "answers the wrong question," or when she asks you for additional information which most people would have been able to infer from what you just said.

Most of us aren't that sophisticated about CAPDs, however, and are much more likely to wonder if the listener is just not very intelligent or doesn't really care about us and what we are saying. People with CAPD (which are usually part of a learning disability) have been embarrassed by situations and reactions like these all their lives.

A CAPD is a physical hearing impairment, but one which does not always show up as a hearing loss on routine screenings or an audiogram. Instead, it affects the hearing system beyond the ear, whose job it is to separate a meaningful message from non-essential background sound and deliver that information with good clarity to the intellectual centers of the brain (the central nervous system). When we receive distorted or incomplete auditory messages we lose one of our most vital links with the world and other people.

These "short circuits in the wiring" sometimes run in families or result from a difficult birth, just like any learning disability. In some cases the disorder is acquired from a head injury or severe illness. Often the exact cause is not known. Children and adults whose auditory problems have not been recognized and dealt with are forced to invent their own solutions. The resulting behaviors can mask the real problem and complicate not only school and work, but even close relationships, where communication is so important. Advice like "Pay attention," "Listen," or "Don't forget --," hasn't helped either.

It takes specialized testing to identify a CAPD. Some of the tests used by educational therapists, neuropsychologists, and educational psychologists give at least an indication that a CAPD might be present. These include tests of auditory memory (for sentences, nonsense syllables, or numbers backward), sequencing, tonal pattern recognition or sound blending, and store of general information (which is most often acquired through listening). The most accurate way to sort out CAPDs from other problems that mimic them, however, is through clinical audiologic tests of central nervous system function. These are better at locating the site of the problem and reducing the effects of language sophistication on the test results. Do your best to choose a professional who is familiar with CAPD. Also, there may be conditions accompanying the CAPD which are medically treatable like allergies, Attention Deficit Disorder, Tourette syndrome, or nutritional deficiencies. CAPD is a complex problem affecting about 5% of school-aged children. These kids can't process the information they hear in the same way as others because their ears and brain don't fully coordinate. Something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech.

Kids with CAPD often do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. These kinds of problems usually occur in background noise, which is a natural listening environment. So kids with APD have the basic difficulty of understanding any speech signal presented under less than optimal conditions.

This is a lot of info and only certain parts of it pertain to Lilly. She is REALLY doing well considering all that is against her. I had a meeting last week with her teacher, the learning specialists and the speech therapists at school and they couldn't say enough about how impressed they are with her. She is in the lower range for reading, but not the lowest. There are kids below her that have no learning issues/disabilities like she does. For speech, she passed her evals. Of course she has some speech sounds to work on, but she can produce the sounds when she tries really hard, which is amazing considering all things. I think that things will just get better and easier for her from here on out. They are going to "tweak" a few things in her classroom to help her a bit. I think she is in the right place for now and that she will surprise us all and exceed all the goals that have been set for her...like reading by 1st grade. I know she can do it! She is fearless and strong willed...thank goodness! Here is a picture from last weekend at The Whitlock's. They put in a Zip-Line and Lilly didn't even a blink eye. She climbed up there and took off. FEARLESS is definitely a good thing!

I will keep you all updated on results, etc as we navigate our way through this process. Just keep her in your thoughts and send me some strength to keep up with it all!