Flying Solo

We have entered a new era with our little man, Thomas. Today he did booth testing with our awesome audiologist, Dr. Bari, and let her test him for an hour all.by.himself! The little stinker actually let her do an eSRT on his CI. She was able to get 4 pairs of the electrodes done before he totally stopped cooperating.

Here are the results we got:

CI Only
He is still testing around the 30dB mark across the frequencies with only his CI. Med-el considers a properly mapped kiddo between 25dB and 35dB. Given the distortion he experienced when we got him between 15dB and 25dB, I consider this to be a good thing. His speech recognition threshold unilaterally was at 30dB. The cool thing is that his speech perception testing, without noise, came in at 92%. Can this sista get a WOO-HOO?

HA Only
He has held constant at between 45dB (low frequencies) and 55dB (high frequencies) unaided. He didn't have the patience for aided unilateral testing with his aid. However, Dr. Bari was able to get his speech perception testing done. Again, he scored 92% aided but, this time with an aided speech recognition at 15dB. Again, give me a WOO-HOO!

CI Mapping
With the eSRT testing, we found that each of the 4 pairs of electrodes were over-powered by approximately 4 charge units. So, she adjusted these electrodes and interpolated the remaining electrodes. We will see how this new map is and will go back again in another 3 months for more eSRT testing and bilateral testing.

I have to admit that I'm damn proud of how Thomas has matured when it comes to hearing tests. His patience has increased dramatically...although I have to admit...I bribed him with a new toy from Target if he did exactly what Dr. Bari wanted of him today. When we left Cook, we immediately drove to Target and he picked out a new monster truck toy to join his growing collection at home. He is SUCH a boy!

A New Look at Food "Chaining"

With Thomas' hearing loss issues somewhat under control and his language progressing at a rapid rate now (knock on wood), I've been focusing my time with him on his eating issues. It is primarily soft textures that he struggles with and has a HUGE defense mechanism when it comes to trying new foods. While we spent our 3 weeks with the awesome people of the John Tracy Clinic this past summer, an OT there recommended that we develop a reward system for trying new foods. She told me about a link system that goes from the ceiling to the floor (like retro Christmas tree garland). When the child eats or tries a new food, they get a link in the chain. When the chain hits the floor, they get a reward.



Around the time we were denied coverage for behavioral feeding therapy from our insurance carrier, we started our work on the chain. Thomas was so excited to learn that he would get a new toy when the chain reached the floor. BTW, this was also a great language opportunity to talk about links in a chain, getting longer, taller, closer, counting, etc. Also sequencing about which color goes first, second, third and finally fourth.

We started with simple crunchy textures that were not very offensive. We moved on to other textures like pizza, waffles, grilled cheese sandwiches, etc. Well this morning after eating his waffle, Thomas' chain reached the floor. He was so proud of himself! We brushed his teeth and immediately went to the grocery store so he could find his new toy. After carefully considering all the toys available and talking through all the options, he chose a bulldozer/backhoe combination vehicle...he is SUCH.A.BOY!






Now to start our next chain...what foods to work on next? Mommy may need to give this some thought while enjoying a glass or two of wine this evening.

Free therapy Idea

So if you're like me, you could go broke buying "therapy toys" for your hearing impaired or deaf kiddos. I'm always looking for ways to stretch my dollar to accomplish our AVT goals. While I always adapt books, games, etc. I was looking for a cheap way to focus on objects by description, using a blind set. I found that using the Christmas toy catalogs that come in the mail was a FREE way to do this.

We play the game by my holding the catalog and giving two clues like, this vehicle has flashing lights. Then Thomas proceeds to guess...police car, police boat, fire truck, ambulance, tow truck, etc. Then I turn it around and have him give me a clue...Thomas playing the teacher.

We have adapted our game to 4 step direction...Thomas first find a firetruck, second a Star Wars toy, third a girl toy and finally/last a computer game.

This fun has also given me a complete list of Christmas gifts that he wants...with a shooter (a.k.a. a nerf gun) at the top of his list.

Fun and free playtime...I mean therapy!

Tears...

Tomorrow we leave for Mexico to celebrate the wedding of my husband's friend, Jesse. Jesse is an awesome guy...the first friend that my husband found as he began his undergraduate work on the huge campus of Texas A&M. Sean and Jesse are like two totally different peas in a pod...different, yet the same.

We are going sans kiddos to the wedding. I haven't been more than an hour away from the kids in a couple of years...this is kind of hard for me...and yet easy knowing that there is no turning back once we make it through security at the airport. So, I packed all their clothes, school stuff, technology, wrote out their entire schedule including school and teacher phone numbers, and packed books/toys/etc for the next few days. I'm anal so I packed lunches, coordinated clothing, wrote a detailed agenda, etc.

Thomas knows that we were leaving for a trip and that he will be staying with his grandparents. He knows that we will return on Sunday and we talked all about how Kiki, his grandmother, was going to get him to and from school. How he needs to eat well and sleep well. How he needs to be nice to his sister and helpful to his grandmother and grandfather. He was cool as a cucumber as he said good-bye to me tonight. He was excited. This was an adventure in his eyes...so cool, and he had the language to express his emotions.

The tears came when I said good-bye to my Sidney. I looked at her and she was completely fine, no tears and kind of excited in her own right. I then lost it. I started to cry, told her how much I was going to miss her; kissed her face, hands and hair. She started to cry, too. We hugged and kissed and hugged some more. Our tears melded as we held each other, becoming one. I so love her...sometimes I don't say it enough. This may be why it becomes so special when we do let our guards down and let our emotions flow. She is my "normal" child...the one I don't have to worry so much about...yet, I love her just as much as I love my "special needs" child...she gives me strength, tries my patience, and tests my limits but...damn! I love her so much.

As my friend, Tammy, helped me learn in LA...we have children that aren't hearing impaired/deaf...they need our love, too...I miss my Sidney girl already...tears...

Christmas Cards Are Ordered...

Putting this together made me realize what an amazing year it has been...a week off from school due to snow, spring break at Lake Travis, 3 weeks at John Tracy, fun weekends at the beach, a wonderful Halloween...can't wait for the holidays and to see what next year brings for our family!

Photo Card

View the entire collection of cards.

Parent-Teacher Conference

Why does the thought of a routine parent-teacher conference, no matter which child it is for, always make me somewhat crazy? Somewhat may be an understatement. With all my heart, I want both my children to succeed, to become exactly what God wants for them, to be kind, loving, smart, funny, beautiful children.

So as I drove up to Thomas' mainstream preschool for my parent-teacher conference, I said this little prayer...Dear Lord, I ask that I feel Your presence with me during this meeting. May I listen intently, respond accordingly and not cry. Please help me not to cry.

I was expecting the worst from this meeting...after all Thomas is hearing impaired...so he won't be on average with his hearing peers. I kept remembering the fact that we are not suppose to compare children and yet that is exactly what a parent-teacher conference to discuss assessments is...comparing. Comparing sucks!

I took a deep breath and walked into school, meeting Thomas' teacher at a small table with his file sitting right there on the table. I sat quietly as his teacher expressed how much fun Thomas is and how she enjoys having him in her class. I thought to myself, "She probably says this to all the parents." Then I thought again, "Well, she should say this to all the parents of the kids in her class." So, I relaxed.

I could go into all the details but, will refrain from getting it all down of cyber-paper.

Our little man is on average with his hearing peers. Academically, he is on track with the kids that he will go to kindergarden with in a year and a half. His gross and fine motor skills are where they should be with him being able to put together a zipper and zipping it up, etc. (smile)

He has an issue with waiting for other children to answer questions that the teacher asks to the group. He doesn't wait for the teacher to call on him to answer the question asked...he just blurts out the answer with his hand raised. The problem is that the other children now don't answer questions during circle time, they just look at Thomas to see if he gives the correct answer. I'm suppose to talk with him about waiting for others to answer too and discuss more about taking turns. His teacher said, "I don't want to discourage this too much because this is how leaders are made." (smile)

He thinks differently than other kids. When presented with a problem or issue, he takes the less traveled path or discovers a different way to solve the problem. He is a thinker...a tinker...maybe a creative thinker. (smile)

He doesn't like to do worksheets (a tie to the previous mentioned comment). So, his teacher has set an egg timer to 2 minutes so he knows that he has to work on a particular worksheet for that amount of time. His handwriting needs improvement but, he writes his name in a legible way. I need to work with him on this type of effort here at home. (half-smile)

He is social, almost too much so. He tends to talk to his classmates when the teacher is talking. He is friends with everyone, not showing too much preference to a single child, although he says that Micha and Nathan are his best friends. (smile)

He doesn't have a sense of personal space. An example given, if a child is sitting on "his" letter (the letter I), he will sit right next to the child sitting on "his" letter. Over a period of time, Thomas will scoot so close to the child to make the child feel uncomfortable. He isn't aggressive, hitting or pushing...just scoots. I asked, "Where is this letter on the mat?" The teacher answered, "Right next to me." I explained that Thomas is seeking preferential seating due to his hearing impairment, not wanting to miss anything that she says. He is self-advocating in a non-aggressive way. A lightbulb went off over her head and she got it. (kind of a toothy smile and a slight giggle from me because Thomas is such a turd)

As we finished the conversation, there wasn't a single big "we have a problem" area that Thomas needs to work on while here at school or at home. This meeting wasn't what I expected at all. While his teacher isn't a TOD, AO teacher, she is a licensed preschool teacher in the state of Texas and gave me feedback looking at him as a "whole child."

I know that he still has ground to make up in his expressive language but, it was nice to hear some positive news about assessments...I won't compare him too much to everyone else...I'll just keep smiling, keep working with him and keep thanking God that he gave us our little man.

Mom Moment Monday -- AVT with Ms. Becky

Sean took the day off and ventured to our twice a month AVT with the our little man and me. Of course, Ms. Becky had all the Thanksgiving things laid out for us to do together. We had a great session. Thomas was quite the conversationalist, followed 4-step commands (easy commands) and talked to himself as he placed colored feathers on the turkey...explaining where each color went and the order of the steps. It was quite a fun session.

As we played with turkeys, I was struck by the words, "gobble, gobble." I remember last year that I rejoiced when our little man said these 2 simple words in a video that I sent to my family on Thanksgiving morning. This year I give thanks for the fact that he now uses them in a full sentence. I'm thankful that AVT sessions are actually fun now, not at all like the work they once were. I'm thankful for seeing a mom with a baby in the waiting room at Cook that asked me about Thomas and his implant as she placed hearing aids or her sweet child. I'm thankful for the fact that I'm now in a place where I can look another mother in the eye and tell her it will get better and that CIs will make a HUGE difference in her young one's life.

Most of all, I'm thankful for hearing these words from Ms. Becky, "Thomas is doing great...you know he won't be in AVT forever." When we started on this journey with Thomas, I did think that he would be in AVT for most of his young life, with no light at the end of the tunnel. Her words to me today were...gosh, how do I put my feelings into words?...AMAZING, UPLIFTING, REASSURING, NEEDED, COMFORTING and REJUVENATING. What I saw in her eyes as she said these words...LOVE...LOVE...LOVE.

I'm thankful for Ms. Becky, her coaching, her believing in our little man but, most of all her love for Thomas and our family. Not a bad way to start off the "work" week with so many things for which to be thankful...

Quote of the Week

From Thomas as I was fishing bread out of the toaster:

"Mommy, be very careful. That's really hot. It's dangerous. You might get hurt, go to the hospital, and get a shot. It will be okay (as he pats my leg). You can get a Bugs Bunny bandaid."

Mom Moment Monday -- It's All About Vocabulary

Thomas is "guppy of the week" at his mainstream preschool. A part of this special week is sharing a poster of pictures and items that are "all about Thomas." Yesterday, we went through tons of pictures from his past and talked about his life...it was truly a special time. This morning, we put together his poster and it was all about vocabulary, vocabulary, vocabulary!

I had him identify each picture, what happened during that special time in his life and then expanded the language even further, using new vocabulary and trying to develop his "theory of mind." I was surprised at how many different synonyms our little man already knows. Here is a list of what vocabulary or concepts we worked on while making the poster:

Straight versus crooked, the back side versus front side, upside down versus right side up

Being born, that everyone was a baby when they were born, hospital, excitement (using his dad and me as the theory of mind people)

Ocean waves crashing, chilly water, tasted salty, California, vacation weekend, our friends from JTC, swimming, sand, surfers, pier, sunset, sunrise, hotel room with balcony, pool, etc.

Family, mother, father, sister, grandparents (not using anyone's names -- just the titles)

Reading books with his father, favorite books right now, what will happen next, how do you think he feels? Why does he feel that way?

First day with hearing aids, how special it was, trying to remember if he was excited and how daddy and I felt on that first hearing day

Remembering Halloween, going door-to-door with our friends, quantifying how much candy he and his sister received, how excited everyone was to go trick-or-treating together

His favorite animals, ocean animals and zoo animals, his pet and how zoo animals are not pets, his favorite activities, soccer, football, baseball, various shapes of these objects

Present tense verbs that end in (s) not (ing), sleeps, plays, gets, goes, sits, jumps, listens, joins, eats, etc.

I wish that I had done this project with Thomas sooner...I'm thinking that this could be an activity for each season making special posters to remember the things that we did during the summer, fall, winter and spring...that way I can incorporate themed units into the poster as well.

Overall, not a bad way to spend "therapy" time with our little man...remembering awesome moments together!

It's Official: We Lost Our First Implant

So, I was rushed to get the kids in the car because I had to get gas before taking Sidney to her class at church this evening. I get Thomas in his car seat, get gas, arrive at the church and we sit down on the couches outside the sanctuary. I look over at Thomas as he is playing on the couch and notice that there isn't an implant on his right ear. Panic mode sets in...along with the question: how could I be a mom that loses my son's implant? I mean we have had technology on his ears for three and a half years, never losing anything! Gasp (and some bad words that fortunately didn't come out of my mouth at church)!

Here is the conversation with Thomas that occurred:

Me: Thomas, where is your implant?

Thomas: It's on the couch, mom.

I then began to tear the couch apart, cushions, underneath, moved the ottoman, etc.

Me: Thomas, look at me. I need to know where your implant is. Tell me where it is.

Thomas: I told you, remember? It is on the couch.

Me: Well, it isn't here. Let's go check in the car.

Then we get to the car...

Me: Now, Thomas where is your implant? Is it in your car seat? In my purse? In the back seat?

Thomas: Nope.

I rip the car apart. We then we retrace our steps, not finding the implant. Crap! We take Sidney to her class, give hugs and run to the car. Get Thomas buckled in and I race off to the house.

Thomas: Mom, can we listen to the pony song (a song that we got from JTC).

Me: No way! We can't listen to songs until we find your implant. Now Thomas, where is your implant?

Thomas: It's on the couch.

Me: Which couch? The one at home or the couch at church?

Thomas: The couch at home, mom.

Me: Well, I hope so. When we get home you go find it right away.

Thomas: Okay, I will.

We walk in the house. Thomas looks on the little couch (the love seat)...

Thomas: Oh no, mommy! My implant is gone. Where is it?

I look on the big couch and see it sitting right there.

Me: Thomas, your implant is right here on the couch like you said it was. Listen to me. Are you listening?

Thomas: Yes, I'm listening.

Me: Don't ever take your implant off without giving it to me, daddy, your teachers, Kiki, Papa G or Sidney. Do you understand me?

Thomas: Yes, I give my implant to mommy, daddy, Ms. Herring, Ms. Cara, Ms. Sinclair, Ms. Gomez, Kiki, Papa G and Sidney. Okay?

Me: Yes, my sweet boy. That would be great.

Thomas: Okay, let's play now, okay?

Me: Nope, time for bath.

Thomas: Ah man, not yet, please.

Then more negotiation begins about not taking a bath quite yet.

Lessons learned:
Lesson #1: Check his ears, even if you don't have the time to spare.
Lesson #2: Listen to your child, he probably know where their implant is anyway.
Lesson #3: Calm down, don't freak out...this is why we have insurance plans.
Lesson #4: Repeat steps 1-3

Video: Our God Is a Great Big God

Our church had the children 2-5 sing during the adult service. You just gotta love a video of your child (hearing impaired or otherwise) singing about our Lord and Savior! Makes my heart swell ten times bigger than before service.

Our little man is the guy with the tie t-shirt on and black jeans...you know the cute one toward the right of the screen (yep, I'm biased).



Our God IS A Great Big God!!!

And...we add more therapy sessions...

A little over a month ago, Ms. Becky, our amazing cert-AVT, explained that Thomas was ready to reduce his AVT sessions to every other week. This proclamation scared me because we have been in weekly AVT since Thomas was 7-months old and he is still behind his hearing peers but, making fast progress. She said that he was ready, picking up language in more "natural" environments, not necessarily in therapy, and he was doing great work in school. So, I trusted Becky and I have to say that she was right. He continues to make great progress...even though I miss seeing Becky every week (selfish, I know).

Yesterday, I took our little man to Our Children's House in Grapevine Texas for a behavioral feeding evaluation. The feeding therapist worked with Thomas on his challenges with non-crunchy textures and saw all the things that I reported in writing...so assuming that we get insurance approval (fingers crossed), we will start feeding therapy twice a week, every.single.week until he is over this issue. So, losing one therapy session every other week will be replaced by two sessions every week...sigh!

I left the facility crestfallen. I was on the verge of tears the entire trip to Thomas' auditory oral preschool. These are just some of the questions that went through my mind: Why did he have to go through this? Hasn't God challenged him enough? With these new therapies, we will have to pull Thomas out of his mainstream preschool and add additional afternoon sessions with his A/O class. Will he still continue to develop his language at his current pace? If he is ready for mainstream preschool again next year, will I be able to find a spot for him at his new school or another one of the same caliber? Will he be ready for kindergarden in a year and a half? Will this feeding therapy really work? How long will it take to complete? Selfishly, how am I going to do this? I can't go back to Thomas vomiting again at every meal...how is this all going to work?

I dropped Thomas off at school and watched him walk with his best friend and his teachers into school and I lost it. I simply saw yet another hurdle for Thomas... and said aloud, "How are we going to do this?" The tears flowed and flowed and flowed as I tried to safely drive home.

I have to admit that I've been in a funk ever since...maybe needing to cry some more...maybe needing God to slap me in the face with His direction, not mine...maybe it is time for a little vacation from the kids before we start this new therapy...maybe I need to stop being selfish, suck it up and just do it...because the fact is...we are adding more therapy sessions.

Mom Moment Monday

We all have those little moments as a mom that makes our hearts happy. I'm dedicating Mondays to share some of these moments that I have with our little man.

This morning we went to our local Kroger to do some shopping and play "I spy" as we shop. This morning was different because we actually had fog, dense pea-soup fog. As we drove in the car and walked inside the store, we talked about fog, how it was difficult to see, how we needed to be extra careful in the parking lot, etc. As we were leaving the store after a competitive game of "I spy," Thomas ran up to a boy that was younger than him and said, "Be careful, boy. It is foggy outside and hard to see. Look both ways for cars."

Then we came home to play alphabet bingo (a great game that Thomas' great-grandmother gave him for his birthday). We were working on following rules, identifying letter sounds and correctly using has/have. The little turkey actually beat me 3 out of 4 games...followed the rules, had about 50% correct use of his letter sounds and used has/have correctly 100% of the time.

Overall, a good little Monday morning with a couple of happy mom moments.

The Vomiting Negotiator

So this evening, Thomas vomited his dinner on the.last.bite. Sigh...

Thomas wanted desperately to play Kinect with his daddy. I knew that he was tired and that his vomiting was a sign that he was overly tired -- a lesson taught to me by the wonderful Ms. Tammy. Two of her kiddos also vomited when they were overly tired.

After the clean up was done, Thomas and I sat on the floor on the kitchen to talk. The master negotiator in Thomas took over his body, mind and language. Here is a snapshot of what happened:

Mommy: Thomas you have to eat dinner.

Thomas: No, mommy! I want to play Kinect.

Mommy: Well, you have to eat dinner if you want to play Kinect with daddy.

Thomas: First, take a bath then play Kinect with daddy.

Mommy: Nope, you need to eat dinner. How about 3 pieces of chicken and potato?

Thomas: No, two pieces of chicken and chippies (what he calls chips).

Mommy: No deal. Twenty-four bites of chicken and 10 bites of potato. Deal or no deal.

Thomas: No deal, mommy. I want chippies and french fries. Then play kinect with daddy.

Mommy: No way. This is my final deal. You get in the bath, then play 10 minutes of Kinect then you eat all your dinner including applesauce. Deal or no deal.

Thomas: No deal.

Daddy: Thomas, this is your mom's best offer. I recommend that you take the deal.

Thomas: Hugs mommy. Hugs daddy. Deal. Bath then ten minutes of Kinect then eat supper.

Result -- quick bath, playing Kinect and about to see if we can keep second dinner down in his stomach...ugh! Sometimes this kid wears me completely out but, he also is learning great language skills, becoming the master negotiator -- and notice the number of verbal exchanges -- a goal for expanded conversational language.

Vomit and all...good language opportunity...time for a glass of wine for mommy...and second dinner for our little man.

"The" Talks

On Friday afternoon, I "talked" with the director of the other mainstream preschool that Thomas and I toured to tell them that we wanted to be on the waiting list for the older 3's class rather than have Thomas in a classroom with peers a few months younger than he. It was a hard decision to make because Thomas really liked this new preschool, especially a little girl named Molly. However, we don't want Thomas to regress, even though his language would still expand being around children a little younger than he. Nonetheless, a class with his actual hearing peers would be better.

So, this brings me to "the" talk that I'll have with his current preschool teachers and administrator this coming Tuesday. This past Thursday, I was encouraged by another mom (an awesome Mom & strong advocate for her typical-hearing child) to go and sit down with the director of his current mainstream preschool to tell her how important his FM system is and that I was displeased that his teacher didn't follow up my emails to schedule a time to learn how to use it. With this mom as my inspiration, I walked in and requested some time with the director. She immediately said, "Why don't we talk right now?" So, we went to her office and I grabbed the tissue box just outside her office door...because I knew that I was going to cry...I always tend to do this when it comes to our little man. We had a great discussion. She apologized for not getting the technology in the classroom already and we scheduled the meeting with his teacher for 9:30am this coming Tuesday.

While I still don't know if this is the preschool that the Lord wants Thomas to attend, I also don't know that it isn't. So, I pray for strength, ability to also listen, encourage questions and a sense of peace. I haven't felt much peace lately...but more than anything...I pray that the teachers (all of them including music, Spanish, chapel and PE teachers) will use the FM system appropriately. And if not, I ask that the Lord give us a spot quickly at the other mainstream preschool.

Deep breath for the talk this coming Tuesday...deep breath that Thomas continues to thrive...deep breath...

Guess Who Is Four Years Old!

How did this happen? It seems like yesterday that our little man came into our lives. Now, he is 4 years old and will proudly tell you this fact.

Rather than do a kiddie-party this year, we decided to spend his birthday weekend doing some fun things that Thomas loves (and his big sister had a blast, too). First, we took the Trinity Rail Express from Fort Worth to Dallas. Thomas loves trains and this was his first official ride. We hopped off the train and went to the Dallas Aquarium. Finally, we stopped off for a relaxed lunch before boarding the train for the trip home. The train was definitely the highlight of the day. Here are a few of the pictures I took during our adventure.










On Sunday, we skipped church (shh, don't tell anyone) and we went bowling. We also opened presents and ate cake.





Happy birthday, our sweet boy! Hope that you had a very special weekend!

Mom always knows best, right?

When we decided to pull Thomas out of the Hearing School of the Southwest a year ago, I knew that it was the right thing to do. Well, God had a strong hand (kind of a slap that I needed) in my decision to follow my gut and make some changes for our little man. These changes made a huge difference in his overall development and his receptive/expressive language really took off.

A year later, I find myself not knowing what to do. I almost don't even want to type the words but, I'm not loving Thomas' mainstream preschool teacher (whew, I actually wrote what I've been feeling for weeks now). Last year, we were blessed with an AWESOME, LOVING, THOUGHTFUL and SPECIAL teacher at the same preschool. I can't say the same words about his teacher this year.

I haven't even taken Thomas' FM system to the school yet because I don't get the sense that the teacher wants to be bothered with it. In fact when I was in the classroom last Thursday to help them with Thomas' hearing aid, I said to the teacher that I would be happy to come in with Thomas before or after school to show them exactly how to manage Thomas' technology (I was also going to show them how to use the FM system). The teacher brushed over my offer and changed the subject. Really, really what teacher does that?

Also, Thomas hasn't eaten a full lunch (often times only eating some chips) since he's been in her class this year. She doesn't seem at all worried about this. There are 16, yes 16, three-year olds in Thomas' class. I can only imagine the noise level of the class and with Thomas not having his FM, I'm wondering what he is actually hearing.

I guess the biggest issue is that Thomas isn't as excited to go to his mainstream preschool as he is to attend his auditory/oral preschool. I love his auditory/oral teachers and more importantly, so does Thomas.

So, I've contacted another preschool here in Keller that was recommended by a friend of mine. I'm going to tour it later this week or early next week. I'm sure that there will be a waiting list but, it is potentially better than his current spot.

I just wish that God would give me another slap to make me know for sure that "Mom always knows best!"

Thankful Thursday

This week I'm thankful for:

Catching up with my sister on the phone. She is such an awesome woman that talking to her always makes my heart 10 times bigger than it was before we chatted. Also, getting a quick call just to confirm that Thomas didn't have the recently recalled N5...she is always thinking of others.

Working on a family advisory council for Cook Children's Rehab. I love that my child goes to a facility of wonderful clinicians and staff that want to make sure that they are continuously making improvements to help all families. Can't wait to continue our work on the "progression of care" binders for all the various types of therapies and services that they provide!

Hearing my kiddos laugh and talk together...I love how Sidney continues to expand Thomas' vocabulary...they also make my heart grow 10 times bigger almost every day of the week.

Receiving all the emails, phone calls and facebook comments about how to help Thomas with his ongoing feeding challenges. I'm calling tomorrow to schedule a formal evaluation.

Seeing Thomas' huge smile when he gets off the bus from his auditory/oral preschool...he truly loves it.

Getting a facebook post saying that a friend of mine enjoyed listening to Thomas sing the songs in Sunday school class...my friend didn't know it but, she made my week. She even gave me a CD of all the songs that they are learning so I can sing them with Thomas at home -- thanks bunches, Andra!

Knowing that the weekend is just around the corner and I can sleep in past 6:15...hopefully seeing the sun shining before I have to get out of bed.

Having some fun friends over this coming Saturday afternoon to cook out and to watch some college football.

I'm very blessed.

ABC's

Thomas has become infatuated with his ABCs! Earlier this week, we put together his ABC puzzle and he started to sing his ABCs. Like many kids, he gets "lost" around the L-M-N-O-P part of the song. Also, he started to sing the "Alpha Tots" version of the song at the end but, he is definitely trying to know them all.



His auditory/oral classroom has been working on "open" and "closed" letters. We had fun making an open-C and a closed-O. He is also doing well making his A with the guidance of his mainstream preschool using handwriting without tears.

Gotta love a kid that loves to learn!

Me and My Bike

Our preacher at Hillside is doing a series called "Faith that Works" a study about the book of James. During the series, he has drawn the metaphor of our faith as a bike that we ride along the path of life. We have the choice to turn the bike down the wrong path or the path that God is calling us to choose. During today's sermon, he stated that some of us are not even on the bike. That we got off the bike gradually or that we simply stopped and got off, and can tell those around us the exact date that we got off our bike.

I got off my bike the day that we got the results from Thomas' MRI. We received the enlarged vestibular aqueduct diagnosis from our ENT/surgeon and I saw before me a steep mountain that I didn't want to ride my bike up. It was a rocky path, not even a road or sidewalk in sight. So, I tossed my bike aside and started up the mountain because I didn't want the weight of my bike to slow me down...I could take the mountain on my own. I didn't need faith in God to get me up to the top.

This was the absolute darkest time in my life, without question. I was angry at everyone, especially God. I cried every single day for months on end. I was depressed and couldn't even talk to many people about what I was going through, let alone pray for help. I completely shut down and in doing so picked up many bad habits that ultimately became sins -- self-reliance, pride, selfishness, being closed-off emotionally, among many others. I simply focused on getting Thomas the technology, the services and home program needed. My bike at the bottom of the mountain was becoming old and rusty, with flat tires.

About a year into walking up the mountain in complete darkness, I realized that I couldn't do it alone. So, I sat down with our pastor and he "told me like it was." He didn't pussy-foot around, he gave me a reality check like no other. This was a big step for me because I found people of true faith to be intimidating, especially our pastor. I cried while he shot me straight and remember one specific thing that he asked, "Who are you to think that God won't use your own child to make you the person that He wants you to become?"

So, I went back down the mountain, serviced my bike and got back on it. Today, my bike still has training wheels because my faith isn't truly what it should be...I still have fits and spurts of spiritual energy...I sometimes coast along when I should be pedaling to take on the next uphill section of our journey...but sometimes, I pedal hard and feel God's wind at my back to help me along.

As Thomas' fourth birthday approaches, I'm wanting to buy him a big boy bike. Of course, he will need training wheels. Hopefully, I can give him the training wheels from my bike...then I will be totally relying on the Lord. I'll have to keep pedaling and not get back off. This is one of my prayers today...keep pedaling and taking the path that God wants, not getting off or slowing going backwards down the mountain.

Another prayer is for the thousands of people that recently received a hearing loss diagnosis or failed newborn hearing screening. May they not get off their bikes, may they turn to God for guidance and strength. May they not take the path that I did not so long ago.

My final prayer is for my children...may I help them learn about their bikes, teach them how to ride and let them pedal down the paths that God has chosen for them.

Amen.

Another challenge besides hearing loss

As background, Thomas suffered from severe reflux as an infant/early toddler. Throwing up was a constant battle for him and wore the both of us out almost every.single.day. This was later compounded by sensory integration issues with soft and mixed textures. We went to OT for 6-months and graduated once his hands and feet were desensitized to texture, along with progress in other SI areas.

As of right now, we still face eating issues with our little man. He wants and demands to eat the same thing at every meal. We have been fairly successful with having him eat out but, still ordering the same thing for him. It has been difficult to say the least, especially when we travel and stay at hotels. I can't order the exact same meal for him as I personally make him at home. It makes social gatherings nearly impossible unless we feed him before we go to dinner at a friend's house, or take his food with us to prepare.

When we were at John Tracy this summer, the OT that observed Thomas recommended our getting back into OT but, focusing on his eating issues. I have to admit that this made me cry, not little tears but, huge, fat mombo-jombo tears. I can't go back to him throwing up all the time, making 2 meals 3 times a day, all the tears and the struggles. I know that this sounds so selfish but, I'm being totally honest!

Heeding the OT's recommendation though, Sean and I tried (okay, maybe bribed) to get Thomas to eat a peanut butter sandwich this past weekend...what kid doesn't love peanut butter? I practically lived on it when I was his age! He ate almost half of a sandwich and then, yep you guessed it, he vomited all of it up at the kitchen table. Additionally, he hasn't really eaten any of his lunch at his mainstream preschool, even with encouragement from his teachers. Peer pressure doesn't seem to impact our little man, unlike all the information that I've been reading lately.

When I took him to preschool this morning, we agreed that he would eat three bites of everything (the typical lunch that I make everyday at home) that I packed in his lunchbox. I arrived at school to pick him up and Thomas proclaims, "I didn't eat my lunch, Mommy. You're not mad or sad. I'm not going to timeout." I kneeled down and said, "I'm disappointed that you didn't eat any of your lunch. You need to eat to become big, strong and learn all of the great things in class." His response to me? A big hug, kiss and he said, "I love you, Mommy." Nice try to get me off the subject. It almost worked and then I said, "Nope, we are going to go home and make a special snack." His response, "I'm not going to eat peanut butter sandwich." I said, "Okay, you don't have to eat peanut butter sandwich today."

We walked out of school and I was seriously trying to come up with an idea of what to make him, keeping in mind that I have to get him eating something that I can pack in his lunchbox. Then, I remembered my husband's recommendation of toasting the bread. So, I told Thomas that we were going to make a toasted cheese sandwich. I talked about the ingredients, the process and how it would taste. We walked into the house, took off our shoes, washed our hands, I lifted him up onto the kitchen counter and we began making his snack. I even let him pick out the cookie cutter to make the sandwich fun (of course, he chose the train engine).



While he didn't eat the whole thing, he ate probably half of what would have been an entire sandwich...small victory for him...yes? Not throwing up...huge victory for us both...definitely.

It still makes me wonder and need help from all the awesome parents out there in "blog-o-sphere." Who else faces these issues? What do you do to help your child? We've tried food chaining in the past without success, does it really work? What has been successful for all of you? Should I get him back into OT again? Or should I look at feeding therapy only (which we did before and wasn't successful)?...sigh! Help! And, thank you for any responses that I get!

Thankful Thursday

To be completely honest, I'm stealing this idea from a parenting of special needs children magazine. I want to have a positive day of the week where Thomas (when he is older) and my friends/family can read about the little things that I'm grateful for each week.

So here goes nothing -- I'm grateful for:

Having a team at the public auditory/oral preschool that understood that two or more hours on the bus coming home is too much for any child, let alone a 3-year old. Thomas' bus ride home is now clocking in at roughly 45 minutes.

My children loving to go to school each and every morning without complaining (although I do miss the kisses and hugs when they tell me good-bye).

Eating lunch by myself yesterday at a local bakery and having some quiet time to read The Shack.

Going shopping with a girlfriend for a few hours and talking about things other than our children.

My husband recommending that I escape for a bit this coming Saturday to have lunch with a dear friend that I haven't seen in months...even though he is not so secretly wanting to watch college football without feeling guilty that he should be helping me around the house.

Getting an email from Thomas' new speech therapist at school simply to tell me that Thomas said to her, "Thank you very much!" at the completion of yesterday's therapy session. Yea for good manners!

Hearing a recap of Thomas' day at preschool in which he ACTUALLY told me almost all of the activities that he did in school.

Cheese grits and a daughter that loves them.

The cool front that is suppose to knock our temperatures down below 100 degrees this coming weekend.

A Difficult Start to School

So, the first day of school at the new auditory/oral class at Birdville came and went for Thomas without any issue. Well, I say that but, he completely melted down when he didn't get to ride the bus home with his new friend, Caleb. He clung tightly to Ms. Cara and wouldn't let go. Sean had to pry his arms away and carry him to the car. Other than this, it was a pretty great day for him.

Then Wednesday came...I dropped him off at school and he was excited to ride the bus home from school that day. I was told to expect about an hour for the trip home. An hour came and went...and hour and a half came and went...and at 2-hours after school dismissal Thomas arrived home via the bus. I was in tears when he arrived. He was exhausted and needed to use the bathroom quickly.

I talked to transportation services, sent emails to the teacher, our advocate and the director of the deaf ed program. I was beside myself with concern. I was told by transportation services that Thomas would be home an hour after school released on Friday. I put my faith in their hands and let him ride the bus home again. This time an hour came and went...at an hour and a half, I called the bus barn and was told that Thomas was 15 minutes away...this time came and went...2-hours came and went...and at 2-hours and 35 minutes Thomas arrived home. He was in tears. I was in tears but, more than anything I was completely and utterly angry.

I rapid fired off my emails, left voicemails and was about ready to say, "Screw this! Thomas won't be going back to Birdville." Fortunately though, my bitching paid off and they changed the bus route and only decided to only have elementary and pre-K kids on the bus.

Thomas was hesitant to go to school on Monday but, agreed to go rather than take a nap (twisted mom-driven choices, I know). Thomas was the 3rd child dropped off and as 1-hour post dismissal came...there he was, just as promised. Yahoo! He was still exhausted because he had AVT with Ms. Becky before school, speech during school and regular classwork. So, he was tuckered-out! Mama was happy though to have our little man home at a decent time...it was a difficult start...here is to smoother sailing from this point forward...

Fall = School + Football

Yes, it is August...not officially fall. However when school starts and the talk of football (and AP poll) begins, it should feel like fall, right? Well, it is over 105 here in Texas but, school has started and college football is right around the corner. This is what our life will consist of until Christmas break and college bowl season.

Sidney, our 4th grader, began school on Monday and was ready to go. She has two awesome teachers this year and is beyond excited every.single.morning when she wakes up. She gives us such joy, frustration, attitude and laughs.

Here is a picture of our precious girl on the first day of 4th grade.













Thomas had his first day at the auditory/oral preschool class provided by Birdville ISD on Monday. He will attend this school on Monday/Wednesday/Friday afternoons and his mainstream preschool on Tuesday/Thursday. Thomas had a great first day but, totally melted down when he didn't get to ride the bus home after school. Fortunately, bussing will start tomorrow afternoon. I have to admit that I want to pick Sidney up from school early so we can follow the bus home...over-protective mama, I know. I'll just send up some prayers when I know that he is in route home. Knowing Thomas it will be the highlight of his entire day. I can hear him now, "Mommy, I got to ride the bus home! It was so very, very cool!!"

A picture of Thomas before we took him to his first day of class.













Now for football...Sean bought Thomas a new football the other morning before getting Thomas' haircut. I'm always reminded when watching videos like this that I need to allow Thomas to be kid...not always having to talk and speak correctly. Here is a quick clip of Thomas playing catch with his daddy. I'm sure that his daddy would love for Thomas to play for the Aggies several years from now. And yes, he will need lots of practice, especially if Texas A&M moves to the SEC.

Leap of Faith

To put my hands in God's is tough for me...to put my child's fate in His...is beyond tough...it is almost impossible. I'm a control freak, to say the least.

However, I prayed a simple prayer today before our revised IEP meeting...Dear Lord, please let me feel Your presence today during the meeting and guide my path to be Yours...and please keep me from crying.

I didn't cry as I read our hopes for Thomas, although I did have to hold them back. We came to agreement on the goals for Thomas quickly because we ACTUALLY have a great advocate at the school district that listened to our concerns. We now have speech and language goals and will have academic goals in the coming weeks once they have experience with our little man.

I felt Him during the meeting, didn't have to get my boxing gloves on my hands, and felt actually excited at the end of the meeting. He was present with us...now the difficult action of continuing to give up control...more prayers are needed. We will pray that by the end of December that we see a continued improvement in our little man...if not...then we will have prayers for where we should be...Plano, Portland, St. Louis, San Antonio, etc...for now though, we pray to see Him in our lives every, single, day...

Thank you, Lord!

P.S. While I'm thanking God during this post, I must also thank my husband for being with me during the meeting, helping with the IEP background booklet, for sending me an awesome and needed text this morning before the meeting...for being my one here on earth...for being...my Sean.

The right to choose -- Deaf or deaf?

I was planning to write another post about our time at JTC. However, I was struck last night by the memory of the choice that we made more than 3-years ago, to give Thomas the opportunity to listen and speak.

Now before I go any further, everyone should know that I respect the choices that all families make for the deaf/hearing impaired children. I don't pass judgement because every family is different. This is just a snapshot (well, a few videos) showing an example as to why we chose to have Thomas amplified.

At 6 months of age, Thomas began to lose his hearing in his left ear and his right ear was already severe to profound. Sean and I talked about what was best for our family and for Thomas...making sure that Thomas felt as much a part of our family as our older child, Sidney. Family is a big deal to us because Sean's family is minutes from our house and my extended family is quite large (with my father the eldest of 8 children). Our desire was for Thomas to participate fully in family events like birthday parties, holiday gatherings, and especially family dinners in our own kitchen. Also, we did a ton of research regarding the auditory nerve in pediatric cases. So, we decided to give Thomas access to sound and language, keeping his auditory nerve stimulated. Just as important to us, we vowed that if someday Thomas wanted to remove his CI and HA and become part of the Deaf community that we would support him 100%. We agreed that we would learn ASL right beside him. We felt that giving him access to sound as a child actually gave him the option of being Deaf later in life.

So, here is why I was thinking about the right to choose...my husband celebrated his 37th birthday yesterday. We had cake and ice cream with the kids and Sean's mom last night. We sang him "Happy Birthday" and then Thomas initiated the desire to continue on and have others blow out the candles.

These three short videos show how the "hearing and language" event transpired:

Happy birthday to Daddy!


It's Sidney's turn!


It's Thomas' turn!


Having Thomas is such a blessing...and hearing him sing and speak (and barking orders) is the best birthday gift my husband could have received this year. Happy birthday, babe!

JTC Summary - Parents as Teachers

We had a amazing experience at the John Tracy Clinic 2011 International Summer Session. I can finally write about our time there without crying (well, I may cry a little)...tears of joy, laughter, loneliness, exhaustion and sadness. The entire trip was a roller coaster of highs and lows, illness, not so small tantrums (one of which was mine) and tons of true friendships grown in a short period of time. It was a once in a lifetime opportunity.

Before I write additional blog posts about what I learned through instruction, observation and labs, I want to share the lessons that I learned from the other families that attended the session. These parents inspired and supported me. While I learned a huge amount of data-driven information from the instructors at JTC, I learned emotionally and practically from those people with whom I lived, laughed, shared and cried.

So, here are some of the lessons that I learned from parents that have changed my life and our future. I've included the names of my "parent instructors" on each of the lessons:

1. Some times you gotta change paths -- Oscar and Lucia.
After years of being an auditory family, they are changing to a TC approach to help their son gain expressive language. Since adding sign to spoken language, their son has become more confident and expressive...kudos to them for making modifications to best help their son grow not just in language but in self-esteem. If the time comes that we need to make this decision for Thomas, I will look to them for inspiration and guidance.

2. Like cyclists, it is easiest to travel in a group -- Marc.
As parents of special needs kiddos, we need people to draft behind during difficult parts of the journey. One person will lead and then when they grow weary, someone else must take the lead...much like the peloton during the Tour de France. We were one big peloton while we were at JTC...I hope that this continues via email, Facebook and long phone calls.

3. Your circle of family and friends are either helpful or hurtful -- Elodie, Oscar & Angela.
I will say it and you may not agree but, being the parent of a special needs child IS much more difficult than raising a "typical" child. It is important for us to surround ourselves with friends and family members that are helpful and not harmful. If those around you don't lift you up the majority of the time, then it is okay to distance yourself from them.

4. All of our children are important -- Tammy.
So, raising a special needs kiddo is much more difficult and takes more energy than raising a "typical" child...now add on the layer of siblings and their "typical" needs. We have to take the time to give all of our children special attention not just our deaf/HoH kiddos. Tammy is doing an awesome job of helping all her kids grow into awesome adults. She makes me want to be a better mom.

5. Strangers are kind and generous -- Colin, Cleo & Gaelle.
Coming all the way from France to join this session with five children was a huge sacrifice. Taking in some of the sibling friends to make crepes was such a wonderful act of kindness. With all the beach fun we had on the weekends and time with friends at the sibling camp and in the TV lounge, this was one of the high points of Sidney's trip. I need to be a kinder stranger...who knows maybe I can create a strong and positive memory for a stranger's child.

6. Real men can and should cry -- all the dads.
On the last day of the session, all the parents went into a single room to say what they got out of the three weeks. Several of the men showed their softer side and shed tears for their children, for the families around them, and for the future that would begin once they returned home. I was so impressed with these gentlemen and they forever left a spot on my heart.

7. We have to fight for what we believe is right for our kids -- Brooke.
We know our kids and "professional opinions" are just that, opinions. Trust your gut, keep asking questions, get second opinions, move if needed to obtain the right services for your child...fight, fight, fight.

8. Keep your sense of humor -- Craig.
A Facebook group was started by JTC for our families to keep in touch. During the last week, Sean joined the kids and me for what was suppose to be a week for all of us. Sean promptly got the flu-like virus that I caught the first week that I was there (this was an incredibly ferocious bug). He was in the throws of it and Thomas came down with a slight fever...so tensions were high and we were feeling the effects of being away from home. Craig then started posting these very funny messages on our Facebook group page that kept my spirits lifted. So, I know now that we gotta keep laughing even when things get really hard.

9. If someone doesn't have a smile, give them yours -- Terri.
This woman has an infectious smile. I didn't realize it early enough to tell her how much it meant to me to see her smile during the low times of the trip. I want to be more like Terri smiling more and giving those smiles to others.

10. It is okay to take time for yourself -- Marc, Florence and Dushyant.
Marc told me that it was okay to reduce the number of books that I read to Thomas every single day...he touched me because he said that it was okay to relax and take some time during the day for me. Marc, I really needed to hear this message. Florence and Dushyant maximized their time in LA and went out on dates while they were there. They are a couple that is truly connected to each other. I admire this and want to bring more of this kind of spirit into my own marriage.

11. A true hug can squeeze your heart -- Elodie & Tammy.
These women know how to give a real, true, honest hug. When I was given the gift of one of their hugs, my heart actually hurt. It hurt because I know that they will physically be thousands of miles away from me...so, I give them a virtual hug right now and hope to hug them again in the not so distant future.

I wanted to write all about our trip in a single blog post but, quickly realized that I'd be writing for days and that anyone that read the blog post would be reading for hours. Next I plan to write about the instructors and teachers that truly changed our lives. I'd like to also recap how Sidney felt about the trip and the fun times that we had while we were in LA. Until then, feel me smiling and giving out true hugs to everyone!