The Dawn of a New Day

Since the dawn of time, or at least it feels that way, Thomas has hated to do flashcards with me. I tried everything to get him to "play" flashcards, body part cards, transportation cards, clothing cards, any type of cards -- you name it and I've tried it. He refused to play them with me.

Well, Ms. Sarah at school turned me on to a new approach. The approach is using the Chipper Chat. This toy is essentially a magnetic wand and magnetic chips. We take our flashcard decks out. I take about 5-6 cards at a time, usually all within a specific theme. I hold up the card and ask Thomas what is on the card. If it is something that he already knows, like a train, he says the word. Then I say the word back to him and describe the picture in more detail. If he doesn't know the word, I say the learning to listen sound or the word, and then he says it back to me. I then hand him a chip and he places the chip on the card. We go through the cards and then I give Thomas the magnetic wand. I then ask him to pick out each object by using the wand and allow him to pick up the chip. This gives me the opportunity to test his receptive language and gives him the opportunity to again express the word.

Here are a few quick videos of Thomas playing this with his sister, Sidney, and me:

Car


Puh-Puh, Boat


Whee-Whee, Slide


As I view these videos, I catch myself not doing all the things that Ms. Becky, Thomas' prize-winning AVT at Cooks, has told me to do during our training sessions each Friday. However, I can't kick myself too much because Thomas is making progress. I'm not a trained cert AVT...I'm a mom learning as best I can.

So as a close this video-packed post, I admit that I know that we will continue to take steps forward and backward. However, it is seeing videos like this of our little man that make me hopeful. They make me hopeful that continued tweaks to his CI map will make him speak with a more opened-mouth (thank you, Ms. Bari!). They make me hopeful that the lack clarity in Thomas' hearing world may be slowly disappearing and thus giving way to the bright light of talking. Whatever happens, I'm ready for the dawn of a new day with my little man!

The Kindness of Strangers

Our family is enjoying a long weekend together filled with lots of playtime for the kids. We went to breakfast at Sidney's favorite place, Ol' South Pancake House, this morning. As we sat at a booth by the front door, Thomas was standing up on the seat and greeting virtually all the people with a wave and his version of "Hi -- ii-ee."

Yes, we got the typical stares and looks of pity. However, one older woman stopped by to talk with Thomas. She leaned over the half wall and began to tell us about her grandson who also has a CI. This is how the short conversation went:

She said, "Oh, my grandson has one of those."

I said, "Awesome, do you mean a cochlear implant or hearing aid."

She said, "An implant. He was born deaf and is now older."

I said, "That's great."

She said, "These kids just have to work harder than everyone else."

I said, "You're right. They do work harder & Thomas is working very hard, too."

She said, "Don't worry, he'll be just fine (referring to Thomas)."

I then smiled & she was on her way to have a huge southern breakfast. I thought to myself...you know, Thomas is going to be just fine. Yes, he will work harder than other kids to listen and speak, but he'll make it. I then smiled inwardly and felt a sense of calm all due to the kindness of this one particular stranger.

The Gift of Subtle Touches

I've written before that my wonderful friend, Tammy, encouraged me to start writing about Thomas' journey some months ago. I wondered to myself, "What could I possible write about that could make a difference in the lives of people that are helping their child or children manage hearing loss?" Well, I don't believe that I've answered the question yet. However, I wonder sometimes if writing about Thomas might mean writing about all the struggles of those around our family, those people that are introduced to our world, and touch it in sometimes subtle, yet miraculous ways. These people bring joy to our lives, perspective, and yes, help our little family get further down our path while we try our best to navigate this crazy, crazy journey.

So, here is my post for today. God has given our family the gift of spiritual friends through our church. You see, my husband and I took a marriage class at our church to give our marriage a tune-up, to help us get our marriage back onto the path that God intended from the very beginning and to bring us closer together...more connected which, in turn, helps us with Thomas and his sister, Sidney.

The people in our marriage class ultimately became our small group at church. We had our first small group discussing this past Sunday. At the end of discussion, we all had the opportunity to bring forth prayer requests for the week. We had families that needed prayer for upcoming surgeries, job uncertainties, cancer treatments, and medical diagnosis. These amazing individuals made me realize something...I never prayed for a healing for Thomas. I never, even once, asked God to restore Thomas' hearing. I have prayed for a lot as our family walked down this path with Thomas. I have prayed that as parents we would have the strength, compassion, conviction, patience and love to help Thomas become all that God wanted him to be in life. I have prayed for a 'clear and direct' path to cochlear implant surgery and activation. I have prayed for God to nourish Thomas during all the difficult times we have had with his eating issues. Not once, not once, have I prayed for healing. This week, I have asked myself several times, "Kat, why have you never prayed for healing?"

When Thomas' hearing loss was initially detected and later diagnosed, I was angry...freakin' angry, beyond words. I remember hating to hear the words, "God doesn't give you more than you can handle." These words were said during our small group. For the first time, I felt a sense of calm when I heard these words, because they are true. I realize that God has given Sean and me the gift of Thomas. I realized that this unexpected gift is the reason that I never prayed for healing.

So, let me thank the following people that touched my life during this very short meeting...they didn't know that they were touching my life so deeply, but they did.

Jennifer M
Greg M
Jennifer G
Liz K

I have come to realize that subtle touches from new friends are a gift from God. Thank you!

Christmas Vacation

So, we took a two week hiatus from focused therapy here at the house for the holidays. We let Thomas relax, play and enjoy Christmas. On the 23rd, we left warm Texas and ventured to see my family for Christmas. The cold hit Arkansas with a vengeance. So, our family had its first white Christmas together.

My father is the eldest of eight children, a very large Catholic family. Ever since I was very little, Christmas Eve has always held a special place in my heart because this is the night that everyone comes together to celebrate. This year was no exception. My sister and I kind of forced my mom into hosting this year's celebration...boy was it fun for everyone. My aunt, Debbie, and a family friend, Frank, brought a keyboard and guitar to play Christmas carols. You can see Thomas in the picture below dancing to the music.



Thomas got lots of fun toys to use during therapy and several "fun only" toys, too. On Christmas day, we went to my grandmother's house on my mom's side of the family for more holiday fun. Thomas quickly found my grandfather's electric organ and started playing.



One of my biggest worries of Thomas getting a CI was that he wouldn't be able to enjoy music. As you can see by these pictures, he loves music; he gravitates to it.

When we returned home, the installers showed up to put together the wooden play set that Sean, his parents and I got for the kids this year. We got this because, when Thomas had his sensory integration evaluation, the therapist said that swings and climbing equipment could help with building his core muscles and help with his stability challenges. It has also given me the opportunity to actively use language to explain what Thomas is doing as well as reinforce language he already expresses. As you can see, Thomas loves the play set very much.



After all this craziness and taking some time off from therapy, Thomas did some great things the other day to show me that he was still learning during our AVT vacation. He is actively saying:

Open door and open box
More
Cracker
Want that
Turn on choo, choo

He has also begun to try to sing the "Clean Up Song" and is getting the words "thank you" correct occasionally. After our ENT removed a HUGE amount of wax from both ears earlier this week, he was more "chatty" (as Ms. Becky so appropriately put it) and is speaking with a more opened-mouth. He is working on the concept of choosing between toys and activities. Of course, he wants to do anything that incorporates trucks, cars, trains, balls and anything that he sees as destructive -- such the boy!

I think that my very favorite memory from Christmas vacation was this...when we arrived in Arkansas my family came out of the house to welcome us literally with open arms. We all hugged each other and my family looked down at Thomas. He walked up and gave almost everyone a hug (preferring to hug the woman over hugging the men). Funny how one can become so obsessed with wanting our HoH and deaf children to listen and speak. When a movement of love can actually render one completely speechless.

Thank you so much to our family and friends for helping us celebrate the birth of our Father. Thanks to Thomas' audiologist, cert AVT, doctors and teachers for making 2009 a year to remember, truly monumental. 2010 will begin with more audiology appointments, more verbal therapy sessions, more school days and the addition of occupational therapy. After a great Christmas vacation, Thomas and I are ready for the challenge and prepared for lots of time running from appointment to appointment.

The Christmas Guest

With all the craziness of the holiday season and a double ear infection, I want to take a quiet moment and say something to my little man...

You are learning to listen and speak. I know that you will learn everything in your own time and way. Your mom is so amazingly proud of you and all the work that you have done and will continue to do.

I hope to one day say this poem to you and have you understand its meaning not only in your ears, but in your heart. Merry Christmas, Thomas. I love you so very much!

The Story of the Christmas Guest
by Helen Steiner Rice

It happened one day at December's end
Some neighbors called on an old-time friend.

And they found his shop so meager and mean,
Made gay with a thousand boughs of green.

And old Conrad was sitting with face ashine.
When he suddenly stopped as he stitched the twine.

And he said "My friends at dawn today,
When the cock was crowing the night away,

The Lord appeared in a dream to me.
And He said, 'I'm coming your guest to be"

So I've been busy with feet astir,
Strewing my shop with branches of fir.

The table is spread and the kettle is shined,
And over the rafters the holly is twined.

And now I'll wait for my Lord to appear;
And listen closely so I will hear,

His steps as he nears my humble place.
And I'll open the door and I'll look on his face."

Then his friends went home and left Conrad alone,
For this was the happiest day he had known.

For long since his family had passed away.
And Conrad had spent many a sad Christmas Day.

But he knew with the Lord as his Christmas guest,
This Christmas would be the dearest and best.

So he listened with only joy in his heart,
And with every sound he would rise with a start,

And looked for the Lord to be at his door.
Like the vision that he had had a few hours before.

So he ran to the window after hearing a sound,
But all he could see on the snow covered ground

Was a shabby beggar whose shoes were torn.
And all his clothes were ragged and worn.

But old Conrad was touched and he went to the door
And he said, "Your feet must be cold and sore.

I have some shoes in my shop for you.
And I have a coat to keep you warmer, too."

So with grateful heart the man went away.
But Conrad notice the time of day

And he wondered what made the dear Lord so late,
And how much longer he'd have to wait.

Then he heard another knock, and he ran to the door,
But it was only a stranger once more.

A bent old lady with a shawl of black,
And a bundle of kindling piled on her back.

But she asked only for a place to rest,
a place that was reserved, for Conrad's great guest.

But her voice seemed to plead, "Don't send me away,
Let me rest for awhile this Christmas Day."

So Conrad brewed her a steaming cup
And told her to sit at the table and sup.

After she had left, he was filled with dismay
For he saw that the hours were slipping away

The Lord had not come as He said He would
And Conrad felt sure he had misunderstood.

When out of the stillness he heard a cry.
"Please help, me and tell me - Where am I?"

So again he opened his friendly door.
And stood disappointed as twice before.

It was a child who had wandered away,
And was lost from her family on Christmas Day.

Again Conrad's heart was heavy and sad,
But he knew he could make this little girl glad.

So he called her in and he wiped her tears,
And he quieted all her childish fears.

Then he led her back to her home once more.
Then as he entered his own darkened door,

He knew that the Lord was not coming today,
For the hours of Christmas, had all passed away.

So he went to his room, and he knelt down to pray.
He said, "Lord, why did you delay?

What kept You from coming to call on me?
I wanted so much Your face to see."

Then softly, in the silence, a voice he heard.
"Lift up your head - I have kept My word.

Three times my shadow crossed your floor.
Three times I came to your lowly door.

I was the beggar with bruised cold feet;
I was the woman you gave something to eat;
I was the child on the homeless street.

Three times I knocked, three times I came in,
And each time I found the warmth of a friend.

Of all the gifts, love is the best.
I was honored to be your Christmas guest.

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!