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!