CI Activation

Tuesday, August 30, 2011

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 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 was a difficult is to smoother sailing from this point forward...

Tuesday, August 23, 2011

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.

Friday, August 19, 2011

Leap of Faith

To put my hands in God's is tough for put my child's fate in beyond 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 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 Sean.

Tuesday, August 16, 2011

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 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!

Tuesday, August 9, 2011

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" 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 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, 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!