Wednesday, August 27, 2008

Upcoming Workshop: "Play It By Ear!" through First Sounds-First Words (FREE FOR PARENTS!)

First Sounds-First Words is an educational series focusing on children with hearing loss and deafness can learn to listen and speak, made possible through a generous grant from CVS Caremark Charitable Trust.

What: "Play It By Ear!" - Intervention for children with hearing loss to develop spoken language. Presented by Teresa H. Caraway, Ph.D., CCCSLP, LSLS Cert. AVT, Joanna T. Smith, MS, CCC-SLP, LSLS Cert. AVT, and Jace Wolf, Ph.D., CCC-A from Hearts for Hearing in Oklahoma City, OK will present on the following topics:
  • Protocol for audiological management of children with hearing loss
  • Fitting hearing aids (as young as 2 weeks of age) bilateral cochlear implantation, children with auditory dysynchrony and other complications
  • Strategies and intervention techniques to develop auditory skills from detection to conservation
  • Videotape segments to demonstrate strategies at various auditory skill levels (babies through preschoolers)
  • Using children's literature to facilitate development of conversational abilities (this is probably why Miss Becky has us read 10 books a day to Aiden! SMILES!)
  • How to facilitate auditory skill development and spoken language development to help children with hearing loss become engaging conversationalists
Where: Cook Children's Medical Center, Forth Worth, TX

When: Thursday, Sept 18 from 8am to 4pm and Friday, Sept. 19 from 8am to 3:30 pm (if you can only come for part of the time, that is just fine!)

Who: For more information and a registration form, contact Becky Clem, MA, CCC-SLP, LSLS Cert. AVT, Rehab Education Coordinator and Project Coordinator for First Sounds-First Words by emailing

Remember mom and dad, this is FREE to parents (but you do have to contact Becky to register)! What a better way to learn how to help our children succeed than through a FREE seminar given by known professionals! Encourage your whole team (ECI therapists, SLPs, audiologists) to attend too! Miss Becky is one of Aiden's AVT's and is just absolutely amazing! She is always finding ways to help parents help their deaf/hard of hearing children succeed! This is just one of many workshops she has helped coordinate for our local families and professionals. We are very lucky to have her in our community! Hope you can make it!

Friday, August 22, 2008

What Makes Us Weaker ...

actually makes us stronger. Everything really needs to be day by day and step by step. I sit here tonight thinking about all of the change that has happened in my life in the past year ... and how this has been such an influence on me being a mother to a deaf baby.

My dad, at age of 55, passed away this past January of dementia. Doesn't make sense at such a young age does it?!? Tell me about it. He was the father who called if he saw a storm coming towards the city I lived in, to make sure I made it safely to whatever destination I was flying to, to tell me he loved me everytime I walked out the door ... even if it was just to run up to Walmart!

I took care of my dad for two years with this disease. I watched him deteriorate. I watched him become a person I didn't know. I watched him go from a strong, outgoing, fun loving person to a paranoid, weak, not to sure of who he was OR who I was. I watched my dad die. It was the hardest thing I've ever had to deal with, or so I thought at the time.

Three months later, Aiden was born and failed his newborn hearing screenings. This was just as devastating to me. How could this happen? After all I had just been through, after all I had just done for my father, how could God let my baby be deaf??? And I questioned and I questioned and I questioned. I didn't understand it. I felt like I had been through enough. I felt lost. I knew I helped my father as much as I could, but at the time, I had NO CLUE how to help my precious baby boy!

Now I understand. I needed Aiden as much as he needed me. I was taught such a powerful lesson with dealing with my father's death, that I needed to empower that lesson in raising Aiden. That lesson being - life is too short to live in fear, life is too short to not do something to make a difference, life is too short to stand down and not speak up for what you believe in. I learned to voice what I felt to protect my father and now Aiden, I learned to stick up for what I believe in, I learned to truly follow my heart and know IT will lead the way.

It's still very scary though. How will his peers treat him, how will he adapt to hearing, how will I be strong for him on the days he is so sad and I just want to take all his pain away. And there are so many choices to make for him, as his parent ... bilateral implants, simultaneous implants, communication approaches, do we teach him sign, making sure he gets the right therapy(ies). Such different choices than I had to make before, but just as difficult. These are times I would call my dad just to "talk through" my choices, and he would offer (give) his opinion (very strongly) and I would listen. And then he'd call back with another thought, and then another, and another (I love you dad). My dad always wanted to make sure I was okay ... and that his grand babies were okay. His grandkids were his life. By now, my dad would have every DVD on sign language, have signed up for courses, looked at anything to buy off of TV or in ads on hearing loss, anything to do with hearing loss or deafness, he'd have and be ready. When it came to his family, especially his grandkids, no one could stop him, they were his life.

I still wonder everyday if I made the right decisions for my dad and if I make the right decisions for Aiden. But I have to believe in what I've done and what I do. I miss my dad terribly ... I get teary eyed thinking about him many times throughout everyday. Yet I feel a tremendous peace about me that God has given me this special child for a reason. I'm not sure exactly what that reason is yet, but I know I have learned so much more from Aiden and that I will do everything in my power to help him be the person he is meant to be plus some!

Monday, August 18, 2008

Older in Many Ways

Ryan is an amazing child, we knew this from the day he was born. He has that "old soul" type of personality ... very loving, deep thinker, never meets a stranger, laid back, go-with-the-flow type of kid. When I got pregnant with Aiden, I was very excited for him to be another big brother ... and he is absolutely fabulous with his little bro.

The other day Ryan came to his dad and me about a texted conversation he had with another "gamer" on XBox Live. Ryan saw that this player was Deaf through his profile and was excited to talk to this player. The conversation proceeded:

Ryan - "What was it like being Deaf growing up?"

Player - "I learned sign language so it was fine."

Ryan - "Wow. That's cool. My baby brother was born deaf. We're going to get him cochlear implants."

Player - "That's too bad. That's not how God intended him to be and your parents are going against God's will."

Ryan - "Well, that is my parents choice to make and I can't wait for my brother to hear me and talk to me."

When Ryan told us this, he asked, "Why would people get angry about doing something to help Aiden hear? We don't think it's wrong if they choose not to get cochlear implants." Coming from an 11 year old.

Everyday Ryan spends time with Aiden. Everyday Ryan plays with him, reads him a book, sings to him, makes him laugh. Everyday Ryan wonders what it's like to be deaf, what his little brother's silent world is like, we all do. Soon before the incident above happened, I overheard Ryan talking to Aiden:

"You are just the coolest little brother and I'm so lucky to have you. I love you so much and I can't wait until you can hear me tell you that!" Tears and a big smile from a proud mother.

This was Ryan's first incident with someone who opposes cochlear implants and I'm sure it won't be his last. Ryan didn't judge this person for their choice and he still doesn't. My 11 year old has confronted this before either my husband or I have had to and he handled it beautifully. High five baby!

Friday, August 15, 2008

We Love Therapy Sessions!

We haven't had our AVT session for a couple weeks since we've been on vacation, but we were up bright and early to head down to Cook Children's for our bi-weekly therapy. It's nice, because Aiden's daddy is now working 10 hour days so he has off on Fridays to go to therapy with Aiden & me. I like him hearing it from them, then I don't feel like I'm "telling him" what to do all the time! : )

Aiden usually falls asleep soon after we get in there, but he raring and ready to go today, giving out huge smiles and really participating! We always start our sessions with Becky asking about all the new things Aiden is doing. Here's what he's doing that makes his mommy smile (and sometimes even cry)!

*He found the da-da-da-da sound again! He was saying it for awhile then seemed to lose it. I know all babies do this, but as a mother of a deaf baby, I get terrified that he's going to stop cooing and babbling. So hearing the da-da sound from him again is music to my ears!! What I have been doing with him is taking his hand to feel my throat and my breath as I say "da-da-da-da-da" and after about a week of doing that Aiden started picking it back up and when he says anything, we all go crazy showing him how excited we are!

*He's been grabbing his toys and of course brings them right to his mouth. The last few days he's been making a long O and the OO sounds as he holds the toy to his mouth. I think he likes the vibrations.

*Aiden loves vocal play (where we talk to him then pause for him to respond, then we talk again, etc). He gets so excited and is really experimenting with a lot of sounds! He's also starting to be very vocal when he's by himself too. Before if no one was around, he would just sit there very quietly, but now, I think he's starting to detect his own voice and gets really loud talking to himself! I love it!

*He's really been exploring a lot. He has found his toes, hands and other parts of his body; he loves to touch our mouth when we're talking to him; and of course the hearing aids are still being pulled out, but not as bad as before.

I JUST LOVE IT!!!! My binky boy is really starting to notice sounds and it just takes my breath away!!!!

After we talk about Aiden's highlights, we go into our lesson. Here's what we learned and will work on this week.

*Communicative intent (powerful moments) - We learned about this with our other great AVT Miss Helen. This is where we introduce a new game or song with Aiden (i.e. peek-a-boo), and then after playing it repetitively, start to pause in between lines to give Aiden the chance to respond. Ride a Lil' Horsey is a great one to do this with. As we bounce Aiden on our knee we sing:

"Ride a little horsey into town, Ride a little horsey
Then faaaall (pause here for reaction) DOWN"

and then tip Aiden down towards the floor. He loves playing this!

*Learn-to-listen sounds (tell then show) - Whenever Becky introduces a new sound she always includes a song to sing with it and a book to read about it. This week we're working on:

Being a teacher, I have a lot of these books, but if I don't, I love Amazon.

*Reading to Aiden - We continue to read Aiden around 10 books a day (we're all in this together!). I know this seems like a lot, but I'm talking about the little infant, touchy-feely, interactive books. As we read him the book, I pick out one extra thing to focus on, for example, describing the sun on each page or counting the animals on each page. Aiden loves the touch and feel books and is now reaching up himself to check it out. Another of his favorites are the books by Karen Katz, they have that lift-a-flap feature. If anyone has any other favorites or suggestions, I'd love to hear about them to add to our collection!

Now I'm off to find a toy spider (ewwww - I absolutely hate spiders, even the toy ones!) and a bus to add to our learning to listen box. Whenever I go to any store, I always look for cheap items to add to his learning to listen box and can usually find them here or there. Any suggestions on where to get all these toys would be greatly appreciated too!

Sunday, August 10, 2008

Back From the Beach ...

and back to everyday life! Including Aiden NOT NAPPING! Aiden napped so well on vacation ... maybe it was the breeze from the ocean, maybe it was the "we're not doing anything but relaxing" atmosphere, maybe he was just plum worn out from not napping at home! But he napped,
and napped ....

and napped ....Now, when we first got there Aiden got his first cold. Probably because right before we left, I took the snot syringe thingy out of his diaper bag thinking we wouldn't need it. Wrong answer. He ran a small fever the first couple of days and was just stuffy nosed after that and still his happy little self (see his beach pics on the side bar).

This was our first time to Daytona beach. It was nice, but we liked the beaches & atmosphere in Destin much better. The weather was great! Low 90's, but humid and always a good breeze ... a lot better than the hot Texas heat! We spent our days at the pool or on the beach (and from the advice of our wonderful audi, left the hearing aids off and in the room). One day we walked over to the water park, which was right across the street (which, Aiden slept the whole time at!). After the past couple of years we've had, it was just so nice to get away and forget it all!

We came back to 107 degree weather (gotta love Texas) and a broken air conditioner (upstairs one)! Thank goodness they both weren't out and we found one company to come out and fix it the next day.

So we're back into the swing of things, school starts in 2 weeks (woo hoo!) and we'll continue on with Aiden's appts. He has his weekly AVT sessions, ECI (PT & his TOD - Teacher of the Deaf) will be coming out, another audi. appt on the 22nd, and then on Sept. 5th, we have his MRI! All this said with a smile on my face! Here we go!