Better People...

This past Friday, Thomas and I went up to Sidney's school for a family picnic...well the picnic was in the hallway because believe it or not, it is cold here in Texas. Okay well, cold for us Southern folk.

Anyway, we got there early and Thomas decided to stroll right into class and take the seat next to his sister. All of her second grade classmates, turned to look at Thomas. They then quickly began to whisper and I knew exactly what they were talking about. They were saying, "What are those things on his ears?" "Is he deaf?" "Can he hear us?"

So, I took a deep breath and strengthened myself for the onslaught of questions. I have to tell you that every single child was respectful, curious, non-judgmental and not at all rude, unlike the many adults that can be so rude while you are simply trying to get your shopping done at Target. You know what I mean...the stares that go on just a few moments too long or the looks of pity.

The children had questions that were so innocent and sweet. One boy even said, "Wow! He has a lot of power on his ears!" Sidney handled all the questions like a trooper, too. She would answer questions so simply, in a matter-of-fact tone and on a level that her peers could understand. Meanwhile, Thomas was running around the room, pulling books off the shelves, pretending to read them and then running off to discover something new.

I thought to myself...why do I worry about how children view Thomas? They are curious, but so accepting at the same time. I simply hope this innocence continues when Thomas starts public school. I love the innocence of children and many times wish that adults still had this trait...wouldn't it make us all better people?

Books, Boxes, Balls and a Little Parrot

Recently, my friend, Tammy, put together an amazing blog post outlining her theme of "Apples and Leaves." She is one of those "super moms" that you aspire to be and are proud to call your friend. While I'm not as organized nor as creative, I decided to post about the things that Thomas is loving right now while he works to listen and speak. He is starting to parrot back consonants, vowels, inflection and duration of sound. It isn't perfect, but I have to remember that Thomas isn't on his maintenance map yet and he has only been activated for a little over two months!

First of all...books. For some reason, probably because he is a 2-year old boy, Thomas loves trains (please, no Thomas the tank engine jokes). He loves the pop-up book "The Whistle on the Train." No surprise here, it is a take-off on the "Wheels on the Bus" book that Thomas destroyed several months ago. Listen to Thomas try to say, "ding, ding, ding."



Other books that Thomas loves right now are: Five Little Pumpkins; Five Little Monkeys; Polar Bear, Polar Bear; Goodnight Gorilla; and The Napping House.

Second of all...boxes. Last Spring, Ms. Sarah made a knock-knock box for Thomas and the other children in the mom-and-tot program at The Hearing School of the Southwest. We have used it actively since she gave it to him. Ms. Becky got Thomas completely hooked on wind-up toys. This is Thomas working with the box and his response to the learning to listen sounds "ss" for snake and "hop" for bunny. Something that I don't show you is that Thomas is able to pick from a set of 4 learning to listen toys when I ask him to grab a specific one.



After watching this clip, I heard the voice of Ms. Becky in my ear correcting what I'm saying to him. Maybe after Thomas is mainstreamed in school I'll go back to school to become a true AVT :-)



Other boxes that Thomas loves are: The A,B,C discovery boxes from Lakeshore Learning. They just arrived yesterday and are already a huge hit. Thomas' older sister, Sidney, got out the V, S, P and U boxes. We hold the boxes to our mouths and make the sound. Then, we hold it to Thomas' mouth and have him makes the sound. He made all the sounds, but V which came out sounding like B. I can't wait to film Thomas playing with these next time!

Finally...balls. A couple of weeks ago, I remember emailing Ms. Becky so frustrated that Thomas wouldn't say the word "ball" even though I knew that he could say it and he knew what a ball was. Out of desperation, I bought the bowling set from Target and we started "playing" more during therapy.

Not only do we get the word "ball," but Thomas is also trying to say the word "roll" and is starting to say "yahoo!" He is also vocalizing trying to count as I put the pins up to bowl again. Check it out in this clip!


Other ball ideas for you to consider are... a soccer net and soccer ball to use in the house. We work on "kick the ball" and "goal" and "try again" and "oh-no" and "yea!" Also, I recommend golf sets for outdoors only because we quickly found out that golf clubs are weapons of mass destruction when used inside the house on objects such as TVs, furniture and ovens and weapons of terror on things like his sister, the dog and yes, sad to say, mom and dad.

Again, I'm no Tammy but, here is my first stab at giving some ideas for therapy...I hope that you find it somewhat helpful or at least somewhat amusing.

Perspective

Like most parents with a special needs child, I sometimes get down in the dumps. Woe is me, woe is Thomas...the world is simply unfair. Why does my child have to be hearing impaired? Why is God choosing to challenge Thomas and me? Then frustration sets in centering around how other "normal" two year old children can put short sentences together while my "special" child works so hard to say a single word to me.

Normally, God comforts me to make me feel better or gives me strength to face the challenges before me. Sometimes, however, He gives me a slap across the face and says, "Girl, you better realize that I gave you a gift. Nourish your son and be thankful that I have given you what you have!" Well last night and this morning, He hit me so hard that I cried.

You see, last night I walked in the Candlighters' 5K in downtown Fort Worth. This organization supports families of children battling cancer. I saw children there that are in the middle of their battle and they were surrounded by loved ones. I walked the little over three miles with my friend, Sheri. We talked about stuff, nothing really important. At the end, off we went to resume our lives.

This morning I received an update from my friend, Matthew, about Hayden, his son. Hayden is a five year old boy battling cancer and he is about to get on a plane bound for San Francisco to try a treatment to get rid of the one remaining spot of cancer. Hayden has been through countless surgeries, chemo, etc. He has been physically built up simply to be knocked down again by this horrible disease. His parents are amazing individuals with strong spirits and a true love for each other and their family. They have faced so many challenging days that I simply don't understand how they keep going. And through all of this, their faith in God has been strengthened.

So, if you are reading this blog and you believe in the power of prayer, please stop what you are doing and say a prayer for Hayden. Please pray for "no evidence of disease" following this latest round of treatment. Pray for continued strength for his parents, Matthew and Lizzie.

As for me, I will add more prayers thanking God for slapping me across the cheek to make me appreciate the "special" child that I have. Thomas' fight to listen and speak is no comparison to the struggles that Hayden and his family have been through. The power of this family is so inspiring to me. I hope one day to be as brave, strong and loving as they are. I pray that Hayden, Lizzie and Matthew will walk away from this battle and resume their normal lives. And, I appreciate God giving me perspective on my own life.

What a Busy Week!

Looking back on the completion of this week, I simply have to say, "Whew!" Monday started with doing therapy with Thomas here at the house. He wasn't very interested in anything that I planned to do, such the typical 2-year old. This kind of worried me because he usually lets me get at least 30 minutes at a time in the therapy chair at home. We quickly moved on to our 2 hour sensory and feeding assessment with ECI of Texas.

So, Tuesday came and we went to the pediatrician's office for Thomas' 2-year check up. All positive news there -- Thomas is 36" (90%), 31 pounds (75%) and has a 19" head circumference (25%). He has been in these ranges since birth and I was happy to see that we didn't lose any ground in his weight. That afternoon, Thomas once again didn't want to do therapy with me. So, I began to get frustrated which made me worry some more.

Wednesday rolls around with an appointment at the audiologist for new ear molds. As I was driving home, I got a "wild hair" and pulled in to our local Target. I wanted to scan the toy aisles to see if I could find some new therapy toys for Thomas. Boy am I glad that I did! During our afternoon therapy session, Thomas said "baw" for ball, "moo" for the cow and the "hoo" in yahoo. It felt like a light switched on in him. At dinner time, I LING checked him while he was in the high chair using conditioned listening. Not only did he perform well with the new conditioned listening toy, he spoke back to me "ss" "sh" "ah" and "mm." Needless to say, I was on cloud nine.

So then on Thursday, I dropped Thomas off at his grandparents' house and I went to a wonderful educational conference at Cook's. It was my first time to see Carol Flexer in action. Goodness, she is so knowledgeable, easy to listen to and frankly kind of fun. She reinforced so many of the strategies that we have been using through the wonderful coaching of Becky, our cert AVT. While I did learn a lot about Theory of Mind, I think that my big "ah-ha" moment from the conference wasn't anything tangible. It was inner calm knowing that we are on the right path and that our AVT is an amazing woman. Becky is simply great with Thomas and me, which is no small accomplishment given Thomas and my personalities. She supplies such clear goals each week and does a wonderful job of coaching me during therapy sessions. She is such a blessing.

Friday is audio-verbal therapy day. I was so excited to see Becky and tell her about all the great strides Thomas made this week. I really didn't have to tell her that much because Thomas showed her most of them. Becky gave me some great advice about pausing longer, not working on things that Thomas already knew and many other nuggets. Spending time with her is always a great way to end the "work week." I feel energized and much more aware of what I should be doing with Thomas. I'd love to get him home and immediately start working on them. Thomas always has different plans though and takes a minimum 3 hour nap after working with Becky. I guess it has been a busy week for him, too. If he could, I know that he would say, "Whew!"

No Serious Stuff, Just Fun!

Our little man is turning two years old tomorrow and he is a little over two months post-activation. To celebrate his birthday and to use as blackmail in the future, I'm posting portions of some videos of Thomas dancing during therapy. He doesn't typically do music therapy while standing on the family room coffee table, but for this one time he did. And yes, he is wearing only a t-shirt and diaper. I will apologize now for my horrible singing!

I must say that two years ago I never imagined that I'd give birth to a deaf child. Now, I can't imagine my life without him -- or both of my children for that matter. I love my kids so much! Also post-diagnosis and post-activation, I wondered whether or not Thomas would truly enjoy music. Needless to say, that he enjoys music very much and has absolutely no sense of rhythm, like his mom.

Without many more words from me, here is Thomas doing the motions to various songs. Happy Birthday, Thomas! You are loved more than you will ever know and your parents are so proud of how hard you work to listen and speak.

Busta move, baby boy!