The New Texas Two-Step

As I begin this post, I have no idea what I'm truly going to write. I have so many things going through my mind...

I thought that Thomas' new map from earlier this week was going to be the silver bullet. The one thing that would lead Thomas to speak to me. Well, I find myself even more frustrated than before. The first couple of days following the the revision to his map, Thomas was babbling and more engaged with things going on around him. He was open-mouthed talking more than ever. Sean and I were thrilled.

Friday dawned with a quiet Thomas and an absolutely horrible AVT session with Ms. Becky. It was not horrible because of Becky, true to Becky's form she had an entire session filled with great "fun-work" for Thomas...it was horrible because we didn't get much verbalization out of Thomas at all. In fact, I broke down in tears during the session. I cried all the way home in the car and for hours after the session. I find myself tearing up even now because of where Thomas is in his development. I hate to admit that he is not where I expected him to be 4 months post-activation with a relatively good hearing ear on his left side. I expected him to grasp this new technology and run with it. I expected him to do a new Texas Two-Step dance and amaze us all with the two steps forward, two steps forward, two steps forward approach. Instead, I find us taking two steps forward and then two steps back.

With his diagnosis, it leads me to wonder if he has had two bad hearing days in his left ear. And maybe with changing his CI map, it isn't enough to manage a bad hearing day because he isn't getting enough from his HA ear. For the first time since detection of hearing loss, I'm wondering if I should be taking a total communication approach with Thomas -- this is a very, very hard thing for me to actually write.

More than anything, the point that is sticking out at the forefront of my mind is: I'm failing my son. I don't know what is wrong...what am I not doing for him...have I not done all the research that I should...does he have another issue going on that we have not yet discovered...

So rather than bitching and moaning even more because I'm starting to really cry now, here are the things that I'm considering doing:

1. Sean has agreed to take Thomas to a kinder music class on the weekends if I can find one appropriate for Thomas. Also, I'm thinking about giving Sean more responsibility when it comes to therapy with Thomas. Should the weekends be Dad's time to do therapy with Thomas? Would he be willing to do things for Sean that he won't do during the normal week? Hell, I don't know, but feel it is worth a shot.

2. I'm investigating getting Thomas into a preschool class with hearing children. Even if it is only one day a week and three hours and even if I have to be with him the entire time because he is a "special needs" child. Thomas will typically do things for his sister that he won't do for me. So, it leads me to wonder if Thomas doesn't need to see other children his own age talking and making verbal requests.

3. I'm thinking about asking his audiologist for a "bad hearing day" program for his HA ear. I thinking that I should be LING checking Thomas before any technology goes on his ears to see where he is that day. If I don't get the responses in the high frequencies, I'm thinking that I should put the "bad day" setting on his HA ear.

4. I'm going to order a teacher's lesson plan book. With all of the objectives that Thomas gets each week, I'm feeling overwhelmed. So, mapping out the entire week at one time could help me engage him more and keep me more organized. Then I can make notes in the lesson book and take to each of his various therapy sessions.

One final note -- if you've made it this far in my post...I have discovered the website: http://www.childrenspublishing.com I have ordered some of the interactive books and the "plain talkin'" CD to try with Thomas.

Maybe with all of these things, I can get Thomas to make his own Texas Two-Step that is more movement forward and less movement backwards.

The Correlation Between Sensory Integration & Mapping

On Tuesday of this week, we headed to our audiologist's office for an eSRT test. I didn't quite understand that the test has to be performed when the child is still -- good luck trying to get a 2-year old to sit still with a probe in his ear!

Well, after we got Thomas calmed down and helped him understand that we were not going to make new ear molds (which he absolutely HATES!), we began the test. Thank God above because Sean joined me for the test and Thomas sat on his lap quite happily during the test. I say happily, which isn't exactly true. We had a DVD player going with Thomas the Take Engine, Thomas and I made a game out of putting about 25 gold fish crackers one-by-one into his water bottle and ultimately I let him play with my iPhone...but, we completed the test. Again, thank God above!

So, here is what we learned. His sensory integration issues did, in fact, increase his pain threshold and that virtually all of his electrodes had too much power. The Med-el rep, that we met at our initial stimulation, was also there with Ms. Bari, our audiologist. The rep was asking me questions about how Thomas reacted to his CI and questioned if he ever resisted putting it on. I answered the questions honestly with a resounding, no. Thomas has never really resisted his CI. I think that it may have surprised her because his map was too powerful...this goes to show that sensory integration challenges can definitely impact the map. The most encouraging message of the session was when Ms. Bari looked at us and said that this new map should provide Thomas with more clarity...again, can I thank God above! We have such an awesome team working with Thomas!

Since the change in map, Thomas seems more relaxed, less anxious. He babbles a lot more and has begun to say more words open-mouthed -- okay, I have to prompt him to do so. However, I can't expect changes overnight. Even today, his teacher at the Hearing School of the Southwest said that he remained engaged during the entire class and when required to do so said words back with an open-mouth. They even had to drag him away from the finger painting activity, which says so much about how far he has come with the sensory issues with his hands. Wow!

Finally, one last thanks to God above...Your hand was definitely felt this week. Thank you!

A New Test Tomorrow

As a parent, you remember all the tests that have been performed on your child. With Thomas we have done numberous ABRs, OAEs, sedated ABRs/OAEs, booth tests, swallow studies, upper GIs, etc. Tomorrow, we head to our audiologist's office for an eSRT. So in case you are like I was a few days ago, you may be asking yourself...what the heck is an eSRT. Well the definition that I found is:

Electrical stapedius reflex test (ESRT): An objective measure that can be useful in establishing a most comfortable level in children with cochlear implants who are unable to provide feedback to the audiologist about the loudness of sound. A small probe is placed in the opposite ear. The stimulation level of the implant is increased until a small muscle reflex is seen in the opposite ear. This muscle reflex is present in most people and occurs at a level that is loud, but still comfortable.

We are hoping that this test will confirm that Thomas' map is exactly where it needs to be. While I trust our audiologist to the Nth degree, she recommended that we do this test given Thomas' issue with closed-mouth speaking and the potential for a higher than normal pain threshold due to his sensory integration challenges. She may be humoring me...which is probably what is happening because she can read Thomas literally like an open book, both in and out of the booth. However, I simply appreciate her offering this test as an opportunity to potentially optimize Thomas' map.

So as I sit here tonight and worry about tomorrow, let me just tell you about Ms. Bari. When I look back on the last two years of Thomas' journey, I think of three people that have made a huge difference in Thomas' life...Dr. B (his surgeon), Ms. Becky and Ms. Bari. Ms. Bari has been with me as I cried and grieved almost every single change in Thomas' hearing. Every, single, solitary time that I've seen her, she makes me feel that she cares so much for Thomas. She answers my crazy emails before hours, after hours, on weekends and even when she is suppose to be on vacation. She is so dedicated to her patients and their parents. She has that calm voice that makes you feel better and those caring eyes that let you know that everything will be okay. I know that she wants Thomas to succeed... she wants him to hear and speak...but I feel most of all that she wants Thomas to be happy. Without Bari, I don't know whether or not Thomas would be where he is today.

So on the eve of a new test, "hear" is to Ms. Bari. She is one of Thomas' angels here on earth...and we are so very blessed to have her in our lives!

Fun With Snow & Bubbles

I wrote a couple of blog posts ago about my frustration with Thomas speaking with a closed-mouth. The funny thing is that his expressive language is expanding every week (okay, not really the week of Thanksgiving because we kind of took the week off and did therapy on-the-go), but his spoken language is expanding, simply with a closed-mouth. The thing that is really odd is that Thomas makes all the LING sounds with an opened-mouth when he is babbling. He only makes the closed-mouth sound when I or his teachers are trying to "teach" him what to say. I'm completely baffled...he has the ability to speak the sounds with an open mouth, but yet he chooses not too when asked to do so.

I decided to take a different approach with him the past couple of days. First of all, we had snow in Texas on Wednesday. Can you believe it? SNOW! I took the opportunity to bundle him up and take him out into the snow while it was still coming down. I talked in full and complete sentences to him as I would a "normal" 2-year old child. I then grabbed him close to me and hugged him and said quietly to him, "Thomas, it is snowing. This is the first true snow that you've been able to experience. Snow is cold (brr), wet and white. What do you think of the snow, Booka (this is my pet name for him)?" He looked at me and said, "sss-noooo." He loved the experience and then I quickly rushed in and dried off his CI and HA.

This morning he went to The Hearing School of the Southwest for some school time with Ms. Tami and Ms. Eileen. I adore these women and their love for our kiddos is truly endless and amazing. I asked Tami how Thomas did today, specifically about his vocalization. She said that he spoke most often with a closed-mouth. I of course, ran through every expletive that I know -- fortunately, in my head and not out of my mouth. I then brought him home, fed him lunch and put him down for nap. Following his nap, I thought to myself, "Okay, I need to find another experience for him, like the snow, that would make Thomas open his mouth to express sound." I remembered that Ms. Becky said to buy a bubble pipe for him. Ms. Sarah, his AVT at the HSSW, also said to make him blow bubbles through a straw in his bath water. This kind of grossed me out because I see bathing as washing yourself in your own filth -- yes, it is a problem that I have. So, I decided to have Sidney and Thomas blow bubbles into a big bowl filled with dish soap and water. They had an absolute blast -- 20 minutes worth of fun and a grand opportunity for language development. Before Sidney, Thomas' 7-year old sister, would blow bubbles in the water, Thomas had to say the word "pop." Most of the time it came out at "o-o," but it was all said with an open-mouth. Then, I made him express the "p" sound to ensure that he was hearing the higher frequencies, because his hearing can and has fluctuated in his left ear. Finally, I made Thomas say "again" which came out more as "ah-gn," but success because he again said it open-mouthed.

So as Ms. Becky asks me each Friday following therapy, what are your take home points for this week? My take home points are this:

1. Maybe I was expecting too much of Thomas to vocalize complete words just 4 months following activation. Maybe I should allow him to progress at his own pace and not the pace that his mom expects.

2. Maybe as his mom should, I should rethink therapy time with him at the house. Yes, I'll put him in the therapy chair and make him "work" each day. However, maybe I should invent activities for him that let him be a kid and incorporate vocalization into those activities.

3. Maybe I should not ignore the power of his older sister because when she is having fun & is also engaged, she is the better audio verbal therapist than I am...and a great model for spoken language.

4. Maybe Thomas' problem with speaking closed-mouth isn't his problem. Maybe it is that his mother should realize that he learns differently than she does. Maybe she needs to spend less time pressing him for expressive language and give him more time to process and understand.

5. Maybe I need to simply chill out a little and let him be a typical 2-year old that wants to explore everything. Maybe I need to let go a little and see what happens.

So, this is my recap so far this week...we had fun with snow and bubbles in Texas. And, Thomas worked with me during "fun time" and made sounds with an open-mouth. As I said a month post activation...baby steps are better than no steps at all.

No One Else I'd Rather Be With...

I remember reading a statistic after Thomas was diagnosed with hearing loss in his right ear and again after the news that he would continue to lose his hearing in both ears. I was absolutely shocked to read that 50 percent of all marriages end up in divorce within a year of diagnosis of a special needs child. With each ABR, sedated ABR, MRI, genetic test and booth test, I remember the tears that we cried, the breakdowns, the silent moments, the quiet research done during the early morning hours on the computer...this was a time that I then began to understand how marriages could be and would be tested. You feel so vulnerable, helpless and out of control. It completely and utterly sucks. I have no other words for this time in our lives, it simply sucked.

So, it brings me to today...my husband and I are more than two years post detection, diagnosis, more testing, further diagnosis and understanding. While our marriage is far from perfect, it is solid and growing stronger. Unlike many wives that most likely remember their husbands on their wedding day, following the birth of their child, the night of one romantic evening...I remember the look on my husband's face while we were waiting in the cafeteria during Thomas' CI surgery. I looked into his eyes and said, "There is no one else that I would rather go through this with...thanks and I love you." He took my hand and said the same thing back to me. It was one of the most important times in my life.

My husband, Sean, is an amazing man. Of course, he is the father of my children, but he is much more than that. He is my rock here on Earth, he is my best friend, he is the one in our family that makes everyone laugh, he makes Thomas verbalize when Thomas refuses to say anything to me...without Sean I would not be where I am today and our kids would not have the benefit of his constant love, his sense of humor or his sometimes twisted view of life. He makes me want to be a better wife, mother, therapist and person...he keeps our house humming (many times to the tunes of bands that I don't know).

I don't want my marriage to end in divorce...I want this crazy, twisted, amazing, wonderful, loving man and father in my life forever. He is an amazing role model for Thomas and Sidney...I don't want to be a statistic...I want to buck the trend...I want Sean to stand beside me when Thomas says his first sentence...I want Sean to be with me when we take Thomas to kindergarten...I want Sean with me when Thomas graduates from high school and later graduates from college...I want Sean with me when our kids get married...I want Sean with me when Thomas welcomes his own child into this world.

So times have been tough in the past couple years, that fact is unmistakable. However, I can tell you today, there is no one else that I'd rather be with...

I Hate LVAS!

I know that newly-diagnosed families search out and read blogs all the time. I always want to be upbeat and positive about how Thomas is doing with LVAS. However, I can not do it today...

Since diagnosis, I have said many times that I hate what this has done to Thomas, to me and to our family. However, I have never said that I hate the diagnosis...until now. I hate, hate, hate, hate enlarged vestibular aqueduct syndrome! Okay, I feel somewhat better now.

Unless you are familiar with the syndrome, and if you are your already know why I hate it, you don't know that the hearing in each ear can fluctuate at any given minute. Dealing with a two-year old that can't tell you what he is actually hearing makes it increasingly difficult, if not impossible, to determine on a day-to-day or hour-to-hour basis. Ugh, it makes me want to scream just writing about it.

So, here is where we are today. Thomas has amazing receptive language. I can tell him that we are going to get in the car to go to school and that he needs to get his shoes before we go. If I give him appropriate wait time, as directed by our wonderful AVT, Ms. Becky, he will go to the cabinet, grab his shoes and bring them to me. Then, when I ask him, "What do you have?" He says, "oos." However, this is said with a closed-mouth...like so many of his low to mid-frequency words (he will only say, "sh" in isolation). He is saying pretty much all words or word approximations in the low to mid-frequencies with a closed-mouth.

For example, we are singing the song "One little, two little, three little, Indians." I sing the first line and look to him to fill-in the word "Indian" or at least some sounds to know that he is hearing what I am saying. He is giving me the appropriate inflection and sounds back to me, just with a closed-mouth. He is says the following words with a closed-mouth:

All done
more
out
ouch
moo
go
shoes
choo-choo
again
ah-ah (for the airplane)
wee
hi
bye-bye
up
down
oh goodness, I've lost count.

I have emailed our beloved audiologist to see what she thinks may be going on with Thomas. Make no mistake, we love our audiologist. She rocks this world and has helped Thomas beyond belief!

This may not be an issue about what Thomas actually hears. It may be how he is processing the sound? Maybe because of his sensory integration issues his pain threshold is higher than it should be and that his CI is up too loud in the low to mid-frequencies? Maybe he has lost or gained hearing yet again? Maybe he is being lazy in his expressive speech and as a typical two-year old, he thinks he can get away with it? Maybe his lack of eating skills makes his word development incorrect? Maybe his mom is a complete and total freak for worrying that her two-year old son who was activated less than four months ago isn't talking in a way that other people understand? Or maybe my gut is right and some "thing" is just off with Thomas and we haven't discovered what that "thing" is?

So until I have an explanation of what that "thing" is I tell you today, "I HATE LVAS!" I hate it because it is the only "thing" that I truly understand when it comes to the challenges that Thomas faces...I hate it because so little is understood about it...I hate it because Thomas has it and it is completely out of my control.

Need Help...Sensory Integration

I think that I have shed more tears over Thomas in the past two years than I have shed over his sister in seven years. This is not to say that I don't love them equally. It is simply an acknowledgment that Thomas has been heavier on my heart, more challenging from a health perspective, and frankly a little bit more of a "turd" (the term of endearment that his father has labeled Thomas -- another way to say he challenges our limits every single day)."

So today, I cried because I took Thomas in for an OT assessment on his sensory issue with his hands and lack of eating a wide variety of foods. I heard from one of Thomas' AVTs that "waking up" his mouth to texture and flavors might help us get over some of his closed-mouth talking. I admit that I was probably stupid in my narrow-minded thinking that a health care professional would only look at the things that I reported were a problem.

During the two hour assessment, I learned that Thomas has low muscle tone. She didn't reference strength, simply it is a balance/control issue that she sees in him -- he is clumsy and falls more than other kiddos. Also, she said that he seeks vestibular stimulation which is why he is pretty much constantly in motion. That his brain is having trouble seeking "constructive" ways of getting stimulation because he has no fear of the consequences of his actions. She also put something sour in his mouth and he reacted negatively. She was concerned that Thomas didn't use either verbal or non-verbal communication to say what he wanted or needed. I simply talked until I determined what he needed. (please note that I'm reporting what I heard her say and I admit that I was getting emotional as all this was happening).

All in all, she said that we need to work on sensory integration with him. Hence, my tears. I can't imagine another therapy appointment during the week and that the therapy appointment will be one hour in the car each way. He is already struggling with two days of school each week, AVT with Ms. Becky on Fridays and ECI twice a month to work on feeding therapy. Plus add in CI mapping sessions, booth checks for his left ear and AVT therapy with me here at home. Thomas has very little time to be a typical two year old boy...playing, discovering...let alone being able to eat and sleep at normal times. Give him a freakin' break!

So, here are my questions that I need help with:

1. Has anyone else done sensory integration therapy? How does it work? When do you start to see benefit? Is there any end to therapy...what does success look like?

2. Does anyone else have a child with EVA/LVAS with sensory issues -- U know that balance can be an issue, but perspective other than not having fluid in their ears? How did/are you manage these challenges? Is this something that the mind learns to compensate for?

3. I can't find research on the Internet that shows how sensory integration works for kids other than autistic children. Does anyone know of any research that I can read?

4. Is there any way to help incorporate verbal development while working on the other senses? What can I do to help him vocalize more other than the typical words like up, down, inside, go, wee, etc? How do I try to make this therapy more than just about the other senses?

Thanks to anyone/everyone, in advance, for their help and guidance. It has been a very long day for both Thomas and me. He will probably fall asleep in the next two hours due to not having a nap...as for me, I'm thinking chocolate or a glass of wine might help me feel better!