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Expanding on the “four C’s” of CHARGE Syndrome this week, we will look at the Characteristic Ear, specifically the inner make-up of Matthew’s ears. As I have shared before, Matthew lacks proper formation of his semicircular canals in his inner ear. For you and I, along with our eyes, they are the central function that gives us our balance and allows us to walk or even stand. The fact that Matthew can stand up or even be able to walk and run is nothing short of a miracle. Think of a time when you had a head cold and your head and ears were “stuffy” and just the act of standing up too fast or leaning forward caused you to be off-balance. It is believed that this is the feeling that Matthew has most of the time. Once the visual impairment is added to the vestibular anomalies mobility seems almost impossible. Apparently nobody told Matthew how much difficulty he should have standing, walking or climbing…Matthew has given all of us heart palpitations showing us his ability and creativity to climb. I recall a few years back when I received a frantic phone call from Theresa with a play-by-play account of what “your son” had just accomplished; he opened the oven door, climbed on top of the oven, over the counter, used the mail sorter as a ladder to the top of the fridge, stepped from fridge to the top of the microwave above the oven, climbed from the microwave to the top of the upper cabinets…
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After receiving some feedback and comments from those of you who faithfully read “Lesson’s” I though I would take some time now and then to give you a little information about the little known genetic disorder called CHARGE Syndrome that Matthew carries as a diagnosis. CHARGE Syndrome is very complex and has many layers…Matthew’s diagnosis was not immediate and was a little complicated to put the pieces together for the geneticist. It took months to finally arrive at this “CHARGE” thing that Theresa and I immediately started to research and gain information. There are tiers to the diagnosis consisting of the “Major”, “Minor” and “Other” features and characteristics of what CHARGE Syndrome really is. The major features, the four “C’s” refer to Colobomas of the eyes, Choanal atresia or stenosis, Cranial Nerve abnormality and Characteristic ear problems that include the outer, the middle, the inner or all three combined. At this point I will refer you to the CHARGE Syndrome Foundation webpage that describes each of the tiers and a little information about each condition as you scroll down the page.    About CHARGE Page (link)    Be sure to click on the link in the information section for colobomas…The picture on the site is of Matthew’s eyes! The grouping of these 4 “C’s” are very common to CHARGE and relatively rare in other conditions. What can be tricky about diagnosis and treatment is the severity…it can range from very mild to severe. These four “C’s” are the root cause Matthew’s vision and hearing impairment, the reason Matthew is tube-fed as a result of a weak…
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If you are like me…an interrupted night of sleep can have consequences that last a few days. Recently, after an overseas flight which included crossing many time zones, I spent several days catching up and to get my internal clock in line with the one on the wall. For some unknown reason, CHARGE kids and others with certain diagnosis, develop and show some strange habits in the area sleep. Most of the time Matthew sleeps just fine…he will go to bed around 10:00 p.m. with no or just a little prompting from us. occasionally we get a whine out of him as we have and still do from our other children. His awake time, with little exception is alway around 7:30 a.m. where he will rock back-and-forth or start to play in his room on his own. But, ever so often he will start a pattern of not going to sleep, or will wake up at an odd hour as if it were morning. The worst is when he only manages a few hours of sleep in a night. The oddest thing about these episodes is that he still manages to wake up at his normal time. We have experienced with other children that the lack of sleep or a missed nap causes them to be cranky. In Matthew’s case he becomes obnoxiously happy and giddy. Often running up and down the hallway flapping his arms like a bird and slapping his legs as he goes. It can be quite humorous…for the first hour. We have no choice but to have one of us remain…
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Next to July and August, our county fair season, November and December are probably our busiest months of the year. Mainly for my responsibilities at my work and our involvement with our church’s Christmas production each year. For me, both go hand-in-hand. This truly becomes a family affair each year…even Sarah Anne has become involved, last year as “baby Jesus” and this year a part of the overture number at the beginning of the show. Matthew enjoyed a front row seat for the final dress rehearsal…this rehearsal is open to all special needs persons and their families, free of charge. We take the time to remove several pews and make adaptations such as close captioning the show on the big screen for this special night. We were honored with an audience of nearly 800 guests. What we appreciate about this unique performance is the sight of Matthew lying on the floor enjoying the lights hanging from the ceiling is not out of the ordinary…nor is the occasional need for someone in the audience to sing along with the cast and choir. In fact, a few years ago, our choir and orchestra director had a guest stand along beside him and help conduct. One special moment I recall this past week is one I had with Matthew at Megan’s orchestra concert. I enjoyed the concert from the narthex of the church due to Matthew feeling the need to sing along to the music. We were playing his game of him signing a random…
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We are fast approaching the season of the “New Year’s Resolution”…the time of year most people reflect on the past year and make grand plans of making a change in their lives. It is healthy after all to take an inventory of the bad and the good and make adjustments accordingly. Take Matthew for example. For no known trigger or timing, he randomly decides to “clean house” in his room. Everything that he has access to and is small enough to fit through the door gets tossed out into the hall. Some items make the further trip down the hall and down the stairs. I guess some of those items need to get further away from him. One day, an hour or so after purging his room I heard his door open and witnessed his beloved Molly doll (from The Big Comfy Couch series) flying through the air, hitting the wall and landing on the heap. They must have had a disagreement. I have moments in my life that I need to “clean house.” Those of you who are close to me know that I am an artistic, creative person who thrives in having the pressure of a deadline. Also, I mostly work in a very messy environment…My desk would be living proof of that statement. Furthermore, when starting a new project, I have a tendency to empty out the tool box on the floor where I can see all the tools I have to work with. I know that I drive some people to the edge with…
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I have written before about how Matthew has used videos to learn sign. He enjoys many other learning videos, 60 or more, with which we us to interact with him. We have what most of you may have at home in a DVD player that is attached to a television. Matthew has learned to operate on his own after we insert the DVD he has requested. What has become our nearly 6 year challenge is to find the appropriate portable DVD player. Currently we are on number 10 in the portable DVD category. You see, Matthew is not the most gentle with his most prized possession. He has not fully comprehended that when he is done with a session of viewing DVD’s the player does not need to go down the stairs to be turned off. Also, the term “portable” to him may mean something different to us. His definition of portable includes dragging it from room to room by the charging cord.   I have searched the entire market looking for the perfect rugged, portable DVD player. Folks, there are none out there. The only one that I found that referred to the construction as rugged only had rubber corners on it. The only thing rugged about it was that the rubber corners made it a very expensive, soothing sensory input chew toy for Matthew. We needed a DVD player that would stand up to the following…all of which either did a DVD player in, or aided in ending the life…
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When we hold on too hard to the past we hinder our ability to accept the future and all the possibilities that could be

We sometimes wonder in our home who is teaching whom. Just this last week Theresa was sitting on the floor with Matthew playing word games as he likes to do. He was signing words and phrases and we were saying them out loud with speech. As often is the case, Matthew was signing phrases, in order from one of his DVD’s of Signing Times. Signing Times is a series of very well done DVD’s where learning sign is done with music and fun graphics. Matthew has almost exclusively learned to sign by watching them. The phrase that he was trying to have Theresa say was “make the bed.” The sign is a compound sign of a few different motions. Matthew was signing it by placing his two hands together like to pray and laying his head on them as if they were a pillow, then taking his two hands as if he was pulling at the bed sheets to flatten. Theresa could make out the bed part, but couldn’t understand what else he was doing with his hands. Usually in a situation such as this, no matter how many times we sign that we don’t understand, he will get upset, occasionally throw in the sign “pay attention” (smarty pants) and then give up. This time, however, he was patient. He did the sign several times, then stopped. He then signed two distinct signs, having Theresa say both words. First the word “bed”…then he signed “make.” I know it may not sound like much to most people…
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While traveling recently on my way home from an extended trip I experienced one of those dreaded delays that inevitably come when you travel. I missed a connecting flight, the very last flight of my journey home from the other side of the world due to our plane landing late. You can imagine that there were many emotions going through my body and mind after almost 45 hours of being awake with little sleep. By the time my travel companion and I made it to the counter to the people who handle re-connecting you with another flight, there were several people already in line…people from our own flight and one that occurred just before us. As we made our way toward the front of the line the associates at the counter were dealing with each case. One gentleman, who apparently was not being appeased, tossed his tickets on the counter, said a few choice words about where they could park their plane, and stormed off. I know that at times I have had this same emotion…I have never acted upon it, but have experienced it. I would assume that the people behind the counter who are there to specifically deal with “heated” moments like these have specialized training in dealing with people who’s travel plans have been interrupted. What happened next is the topic of this week’s Blog. I am not going to point out the airline, nor specifically the person…I won’t because I know that I have been faced with…
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