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!

Who the heck swims in December?

We are the crazy family that swims when it is 40 degrees outside. This all started after I read Lucus' mom's blog post about starting swim lessons. So, I checked around and found an instructor that was experienced in teaching hearing impaired children and adults to swim...and I found Ms. Kathryn at AquaKids.

I have mentioned the amazing people that work with our little man many times on this blog. However, I've never touched on the impact that Ms. Kathryn has had on Thomas. She is so caring, patient and loving. When Thomas started lessons, he didn't know how to swim at all but, still didn't have any fear or respect for the water. So, Kathryn started slowing with him...first getting him comfortable with her, teaching him the 'safety turn' when he jumps in the water, how to kick, etc.

And just last week, she video taped him under water swimming across the pool. While Thomas loves to swim, I also see the benefits of swimming above and beyond learning how to do it. These lessons have helped his core muscle development, stability and breath control.

Here is the video that Ms. Kathryn made of Thomas swimming.



Ms. Kathryn also took several pictures of Thomas under water. My personal favorites are the ones of Thomas with his big sister, Sidney.







My thanks to Ms. Kathryn and all the wonderful people at AquaKids. You guys have helped our little man more than you will ever know.

Fall Fun

Fall is my favorite time of year. We have had an especially fun time with football, airplanes, Halloween and now about the enjoy a relaxed Thanksgiving week.

Before I begin though, I'm most excited about getting our JTC summer camp application done and submitted. Our SLP/cert AVT, Ms. Becky, is writing a letter of recommendation and we are going back in to get unilateral aided testing on his HA ear next week. So, here is to hoping that we get to spend 3 weeks in LA learning, testing and playing with the Kenny family, other families from around the world, and the wonderful people at the JTC.

Football -- the Texas A&M Aggies, my husband's undergraduate team, is actually playing well this year. It has been a long time since we have been excited to watch a game. We had some good friends over for a game watching day. Thomas had a blast with the "girls" and started working on his football vocabulary. He has known the word 'touchdown' for well over a year now but, we have added other things like 'first down,' 'field goal,' and 'kick off' to our football vocabulary. Here is our little man hanging out during a break in the game with Sidney, Mary Emsley and Katie Grace.





Airplanes -- My husband and his father took the kids to see the air show in late October. Thomas had an amazing day. He got to see the Blue Angels fly and is now totally infatuated with planes and helicopters. It is so much fun to hear something fly over head, even when we are inside the house, and see Thomas point to his ear and identify 'das a airprane' or 'das a hericopter' simply by hearing the difference in the sound. I have got to make an experience book from this outing.






Halloween -- While I'm not a huge Halloween fan, Thomas really got into it this year. We played the game Concentration with Halloween cards that I made as suggested by Ms. Becky. My goodness this kid has a good memory. He learned all of his vocabulary in a week (which is good for him because it used to take him over 3 weeks to learn a new concept). We had a fall festival at preschool and also had a full evening of trick-or-treating. Thomas went as Cat-in-the-Hat and Sidney went as a greek goddess. They both had so much fun and hauled in a lot of candy. It was so great to hear our little man say, "Trick or treat!" and "Thank you!" at every house. His 'thank you' is finally taking better shape...for quite a long time it has come out as 'ah-chew' now we are getting the 't' at the beginning and the hard 'k' at the end.





What a fun fall for our little man. His language continues to grow and sometimes I feel like I'm a walking thesaurus...getting rid of "tired words" and adding new words every day. Our blessings are overwhelming and we have so much to be thankful for this holiday season. Now on to Christmas vocabulary and talk of our Lord.

The Preschool Difference, an Amazing Difference!

So, tonight was our first mainstream preschool open house night for our little man. I have to admit that I was nervous for Thomas and our family. I wanted the evening to go well; and more than anything for Thomas to be proud of the work that he has done over the past 6 weeks.

Like the Griswalds,we loaded up the family truckster and headed out to The Light of the World, Thomas' mainstream preschool. We were all there, Sean, Sidney, Thomas and me. We have been working of answering "where" questions and searched for pumpkins on the way to school. We kept hearing Thomas from the backseat say, "Pumpkins, where are you?" and "There you are." while pointing to the random pumpkins in the neighborhood. Then we drove by the construction site of the new Kroger Marketplace (can I get a yea! from all the Mommies out there in blog land?). Thomas said "hi" to the all the construction vehicles, by name. When we came upon the school, he was visibly excited to show his Dad and sister his school. He proudly announced, "that's my school!" as we turned into the parking lot.

We all got out of the truckster (not a paneled station wagon) and headed into school. I told Thomas to grab Sidney's hand and show her where his class was. I wish that I had my camera with me as Thomas took Sidney's hand and headed down the hallway. We arrived at his classroom and he immediately walked in and said, "Hi, Ms. Adrienne." He took his picture off the table and put it in the chart by his written name.

Sean then picked him up and they searched for his picture frame hanging from the ceiling. All the parents and children then began to review the start to the day. The kids were called over to the circle-time carpet to begin the session. Thomas heard the teacher say it was time to begin and he ran, not walked to the carpet. He sat down on his bottom and was ready to go (my eyes were already starting to tear up). We began the session with the song welcoming everyone to school, counting everyone present. Thomas didn't really get into the song other than clapping as appropriate. My heart sank a little bit.

Then, we moved on to the weather song and Thomas sang every single word...my heart soared. From there, we moved onto the days of the week, color and shape of the week work. I was again nervous because Thomas was chosen as the child to hold the pointer and help with the songs and identification. A large bit of me was concerned that Thomas would take the pointer and beat every child in class. Amazingly, he took the pointer and pointed to the days of the week as we sang the song. Then, he pointed to the color pink and awaited a response from everyone to identify the color. Ms. Adrienne said, "that's pink." He then said, "hey, that's pink." Then she asked Thomas to point to the color that is the same as a pumpkin. Thomas pointed to the color orange...then he walked over to the pumpkin pointed to it and said, "its the same." We then moved on to the triangle which wasn't that impressive, he simply mimicked the words said.

As we moved through the Alfie, being polite dragon, Thomas kept saying give one to Daddy, give one to Sidney and give one to Mommy (yes, I was the last on the list). Then we moved onto Peek-a-boo bunny. This is the bunny that tells the children the letter of the week. When Ms. Adrienne asked the kids, "what is this animal?" Thomas yelled, "It's a bunny!" Then she showed the children the letter and asked, "what is this letter?" Thomas yelled before any other child, "It's G!"

After this, we closed the session. All the parents exchanged pleasantries and I got to talk for a bit with Thomas' teacher about his FM system. Ms. Adrienne, Thomas' teacher, is a wonderful, amazing, gifted woman...I sooooooooo love her!

As a parent of a special needs child, you want your child to succeed. You want EVERYTHING for them...acceptance, love, friendship, etc. You want the world, you pray for the world.

Well, tonight we got the world. We got more than the world, we got Heaven, too. Sean and I both gave thanks to God for everything, the financial ability for me to stay home, the gift of Thomas' amazing preschool and his more than amazing teachers, the joy of Sidney and her ability to be proud of her brother, the brilliance of being able to sit back one night and sigh...saying that, "Wow, Thomas is doing great. We should be thankful for his preschool, for everything and everyone that got us here." Praise be to God for Becky, Bari, Dr. B, Angie, Tami, Tamarah, Meredith and countless others.

I so appreciate the fact that Thomas is in a mainstream preschool...and I don't want to ever take that for granted. What amazing difference preschool makes!

Yes, We Are Still Alive...

It has been entirely too long since I've written a post. I can't provide a good excuse for why I've not written in months, other than the fact that life has been absolutely crazy. I always say that someday it will slow down, but realize it won't cease being chaotic until my children are off to college.

Since it has been far too long since I've written, I figured that I'd provide an update on how Thomas is doing. His summer was filled with fun in the hot Texas sun. We blew lots of bubbles, swam a ton and even made a homemade water slide in the back yard. Below is one of the many pictures I took of Thomas enjoying the water.



We also took a trip to Fort Smith, Arkansas to visit my family for a few days. To say that the kids had a great time, would be an understatement. One evening, my father decided to imitate the "Pants on the Ground" singer from American Idol. Below is a picture of Thomas getting in on the action.



We also spent one day at the lake. My kids have turned into such fish. Thomas only got out of the water to eat a little lunch, really it was only a few bites, and ride in the boat. Once he saw his big sister ride on the tube behind the boat, he had to do it, too. So, I got on the tube with him. Luckily, my father was nice and didn't whip us out of the wake as he did with the other kids. I believe that Thomas was the second child to jump off of the dock and the last child out of the water. A big thank you to Uncle Bill and Aunt Lucy for letting us use the dock and boats. The kids will remember this day for the rest of their lives.



Also over the summer, Thomas graduated from his first therapy, OT. When Ms. Angie, his wonderful therapist, told me that he had accomplished all of his goals and that he was ready to be discharged, I about passed out. As a mom of a special needs kiddo, you expect years and years of therapy appointments. I was just shocked to learn that Thomas was ready to manage his sensory integration issues with a home program only. I owe a big thank you to Ms. Angie! She was so great with Thomas, pushing him when he needed to be pushed, working with him to reinforce the weekly language goals that our AVT had for him, and more than anything loving our little man.

Once summer was over, we started back into the school routine. We made some adjustments to Thomas' schedule by pulling him out of the Hearing School of the Southwest. At first, this was a difficult decision for me to make, but my gut was telling me that it wasn't the right place for him at this stage in his development. Then, the Lord stepped in and helped me understand that He had some changes for Thomas and that I should follow the path He laid out before me. I'm so glad that I finally listened to God because Thomas is thriving! He attends a mainstream preschool three mornings a week. Ms. Adrienne is his lead teacher and she has the most wonderful voice quality, a sing-song melody of language with a "drama mama" quality. Thomas loves, loves, loves, loves school. He grabs his backpack and snack bag and runs to the car singing the "Going to School" song the whole time. Here is a picture of Thomas on his very first day of preschool.



The biggest thing so far this year though has been Thomas' 3rd birthday. We had these big plans for a party with friends, one of those big blow up slides, and a Thomas the Tank Engine birthday cake. Ms. Becky, our astonishing cert AVT, worked with us for weeks to help Thomas understand that his birthday was coming. We read books about it, celebrated various stuffed animals/puppets birthdays with pretend cake and ice cream, and sang the "Happy Birthday" song every day to the puppet that was celebrating their birthday. Thomas really and truly understood that his birthday was on Saturday. Then, plans changed because Thomas came down with a horrible stomach flu the day before his birthday. We had to cancel the party and Thomas spent most of his birthday asleep or laying on the couch with Sean. Oh well, we still sang happy birthday, opened presents and he blew out his candles. When you ask him how old he is, he will proudly tell you, "I am three."

He did get to celebrate his birthday at school and received a birthday blessing. Here are a couple pictures of Thomas at his school celebration.







So at three years of age here is where Thomas is in his development:

He weighs 34 pounds (75th percentile).

He is 38" tall (75th percentile).

His favorite food is still hash brown potatoes.

His favorite song to sing is a toss up between the ABCs and Going on a Picnic.

His favorite color is purple (much to the pride of Ms. Becky because of her love for TCU).

His favorite animal is the chetah.

He will happily count to 15 for you.

His favorite game is hide and seek. For his birthday, we bought him this monkey that makes sound when you push a remote control. It has been a wonderful toy to help him learn to better locate sound and he says, "Monkey, where are you?" and "There you are."

His favorite TV show is Thomas the Tank Engine, although Veggie Tales is a close second (he loves the theme song and will proudly sing it for you, if you ask)

He has had a good map for about 6 months now and hears bilaterally within the normal range. Oh, and he loves to whisper.

He is saying approximately 3-3.5 words per sentence.

He uses his "s" for plurals and possessives, and "ing" for action words.

His favorite person is still his daddy, although his sister comes in a close second.

Whew, I promise that I will write more often this fall. My next post will at least be after Halloween, when our little man will turn into the Cat in the Hat.