JTC - A Letter to Aiden - Days 1 & 2

I am in complete awe. This place is AMAZING. What makes it that way are the people. The teachers and the staff are absolutely phenomenal; what completes it, are the families who come from AROUND THE WORLD. Each family with their own story, their own journey, their own challenges and advice ... ALL with a similar means to an end.

I talk and I share, but even more so though, I do what I work so hard at teaching my deaf child to do, I LISTEN. I've thought about how to share this amazing journey, and all I keep coming back to, is that I want this to be my words to Aiden. So I'm going to mix it between writing him letters, through this blog, and documenting key points to share. One day I hope he'll read this and understand how much of an impact three small weeks can have.

In these letters though, I will highlight some key points that may help some of you as well. If there's anything I've learned in this journey, is that we are not alone. We have to help each other.

Dear Aiden,

Four days ago I packed up many bags to embark on a journey across the good ol' US of A with you and your sister. I knew from reading other's stories, that I, as your mother, needed this, not only for you, but for myself, and our family. This place is amazing, and in the two short days we've been here, it has already impacted our lives.

Your daddy and I decided to bring you here for further evaluations, for a second (and truly a third or fourth) opinion from professionals who have been working with deaf/hoh children for many, many years (over 60 years I believe). We wanted to learn not only from these professionals, but even more so, from the families who travel from around the world with a similar goal for their children.

You have been hearing now for two years and four months, and every single day you amaze us. We still have our worries, and honestly, we probably always will. We came here to get a fresh perspective, to learn how to best help YOU, because YOU have your own story, your own journey, and we're searching for unanswered questions; answers to questions to help us help you soar.

I knew coming here would mean meeting families from around the world. AROUND THE WORLD. What I didn't know, is how much these families would effect me, even in two short days of being with them. It has already been a roller coaster of emotions as I have sat and listened to each their stories, each of their struggles. Every story is different, yet the same. Every story though, has the same plea, to help them better help their child, to reach out to find answers, and understand, and learn ... not just about learning to listen and speak in general, but learning to listen and speak in EACH.AND.EVERY. INDIVIDUAL SITUATION.

SO, what do I want you to remember from the past few days? Here are my highlights:

• You LOVED the plane ride! We were up at the crack of dawn to catch a 6:30am flight out of Cleveland, with an hour layover in DFW, until we finally arrived in California at 10:40 a.m. - (three hour time change = one tired mommy and two hyped up kids). Oh, and by the way, the only time you slept was 15 minutes before we were due to land in LA. Nice.

• We're staying in university apartments, yes, where college kids stay during the school year. Makes me want to go back to the day. So much fun, so little luxury. No tv, no microwave, old carpet, and twin beds. The only thing I'm missing is the keg (nevermind that). I pushed our twin beds together though to make a king size bed for all of us to sleep together. Perfect.

• Again, families are here from around the world - France, UK, Canada, UAE, New Zealand, and all around the United States. The staff at John Tracy says this is one of their biggest groups with so many spouses together and one of their biggest sibling groups ever. Although your daddy is not with us right now, he will be here soon. I gotta say, it's great to hear all these dads talk and open up; you'll understand why I say that one day and I wish your dad could be here now.

• Kailyn ventured with us. I wanted to bring Ryan too, but, at 14, he was too old for the sibling group (age 12 is the cut-off), and they wouldn't allow him to participate in the parent classes. It was hard to embark on this without him. He's with daddy for a couple weeks, then heading to Texas to visit friends for a week. He assured me he'd rather be in Texas than here without much to do. Your sister has been QUITE.THE.TROOPER. I am SO proud of her and all she has done to step up and help, both of us. You my son, are lucky to have her, and so am I.

• One of the BEST things about this whole trip is that we are here with your friend Thomas and his mom. I met her before we left Texas, when you and Thomas were just a few months old. We only met once and instantly connected, we were all we had. We kept in touch through email and many therapeutic phone calls. Three years later, we're all here together, getting to truly know each other, although it feels like I've known them forever. and Thomas has a sister close to your sister's age and of course they're girls and already best buds. I know a time will come where we'll all be together again and you and Thomas will be up all night playing video games and talking nonstop while your moms sit and laugh about all we went through to get you both to hear and speak and now can't get you to shut-up. ; )

• Your first day of class was great. You didn't have any separation issues and you joined right in. You are always shy, and don't like to use your words as much around new situations, but your teacher Betty told me you had good conversational speech with another little boy in your class. I think it's the perfect fit for you.

• By day two, you already knew a lot of the kids names in your class, your teacher's name, and one of the teacher's aide's names. I'm so proud of you! Thank you teachers for making an imitation booklet of "Brown Bear, Brown Bear" with the teacher's and kid's pictures.

• Mommy is worn.out. Not only from the trip and three hour time change and the stress and the overwhelming sense of just being here, but even more so, from meeting so many families, and hearing so many stories. The stories and the whole atmosphere has been emotionally draining ... in a very emotional happy kinda way.

• I miss your brother Ryan and I wish so bad he was here. One of the things I've learned throughout your short three years of life, is this isn't just your journey, it's our family's journey. Being here without Ryan, and your dad for a couple of weeks, seems incomplete. Dad will be here soon, I just wish I would've pushed more for Ryan to be here as well. As much as he doesn't admit it, this journey greatly affects him, it's one of my biggest struggles. Just another reason we're here. I really miss him.

The biggest thing that sticks in my mind from the past two days, "We want to learn from you - the parents, because you (the parents) are the true professionals." Do you know how little I've heard that throughout this journey?!? The staff here has repeated this over and over again. They are one of very few professionals who have ever admitted to NOT knowing MY child better than I do; the only ones who have told me,

"The parent is the most important team member."

Amen to that.

Other key points I took keen note to are:

• The staff is here to help you figure out the challenges holding your child back AND their strengths to help them overcome these challenges.
• The staff is here to work as a team (OT, family/child/marriage counselors, speech/language therapists, teachers of the deaf AND the parent) to come up with a plan specifically tailored for YOUR CHILD - not a "one size fits most" type of plan. They will look at social/emotional, sensory and motor, communication, self-help, and cognitive abilities.

More than anything though Aiden, I want you to know that I think you are such a trooper. I see that your hearing loss does not hold you back and that you do not give up until you get your desired results. You my son, are SIMPLY.AMAZING. and I couldn't be more proud.

To end, I have to quote from your sister,

"I'm so glad Aiden is deaf."

to which I looked at her, with a smile, because I knew exactly what she meant.

"Because if he wasn't deaf mom, we would never be here in California learning and making all these great friendships from all over the world."

What a great life experience you've brought to many honey. and I wouldn't change anything about you for the world.

Mini Conference: Making Your Home a Language-Rich Environment

The Columbus Children's hearing program hosts free classes for parents every now and then. This is the first one I've been able to take advantage of and wanted to share information from what was presented. I walked away with a lot of good reminders of past lessons learned as well as new ideas.

Here are some highlights:

Language is different from speech. Language includes what words mean, how to make new words, how to put words together, and what word combinations are best in what situations.

• We have to teach our kids every.little.thing when it comes to language, (including something that seems as simple as making a word plural) - it's these "simpler things" that typical hearing kids learn through incidental listening, that truly aren't that "simple" for our kiddos.

The brain will not know what to do with the input from cochlear implants without continuous language input. We as parents, have to train our child's brain to learn to listen and process what is heard by immersing them in a world of spoken language. I always stress to my family and friends ... CIs are not this instant cure for Aiden's deafness; they're a foundation on which to build, a tool. Without a lot of continuous hard work and dedication, Aiden's CIs will not be effective in reaching our goals for him to listen and speak.

Create a Communicative Environment

• NARRATE! Through self talk (describe what you are doing) and parallel talk (what your child is experiencing) and use a lot of description in your statements. I like to use the five senses to help me here with lots of adjectives.
• SILENCE is just as important as NARRATION to give the child time to process what was heard.
• Go ONE STEP ABOVE - if the child is using one word phrases, use a lot of two word phrases; two words go to three etc. Always give them a little more so they're constantly learning and expanding.
• Create an AUDITORY SANDWICH or TELL then SHOW then TELL again (so the child HEARS-SEES-HEARS). Even when I read books to Aiden I highlight what's on the next page before he sees it. Not only does he hear it first, but it gets him excited about what's to come (and keeps his interest) and teaches him to start predicting which is a very important element in reading comprehension.
• Use ACOUSTIC HIGHLIGHTING to emphasize important parts of a sentence; OR ACOUSTIC LOWLIGHTING (whispering) to do the same. Lowlighting is also good to help with articulation issues. For example, I use this with the /h/ and /f/ so the letter sound doesn't get lost in the rest of the word.
• Use experience books to EXTEND BEYOND THE HEAR AND NOW. They're great for preteaching new vocabulary, reviewing an activity and/or new vocabulary, and connecting the child's personal experiences with new lessons (which is also a huge element in reading comprehension).

The most interesting part of the conference for me was talking about the TEACHING HIERARCHY. The child typically goes through the following stages when learning new vocabulary words and syntax structures.

• INPUT - Bombard them with the new word(s). TALK, talk, talk about it in all ways possible.
• COMPREHENSION - The child SHOWS they receptively comprehend the new word.
• IMITATION - The child IMITATES the word.
• SPONTANEOUS USE - The child EXPRESSES the word in the correct context spontaneously.

We were told that the biggest mistake parents can make is to skip the comprehension stage and go straight to imitation which can cause the child to repeat everything (parrot like), without necessarily understanding what's being said. We have the opposite problem where Aiden can easily get "stuck" at the "comprehension" stage and not move on to imitation or spontaneous use. Ways we can help get around this are to:

• Ask another person a question about the item then immediately ask the same question to Aiden.
• Give Aiden the first phoneme of the targeted word (tried this ... doesn't work with Aiden)
• Use handcue on self, then on child (this is what works with Aiden, very well, but sometimes he doesn't talk until a hand is placed by his mouth, which is not good, so we're trying to steer away from this too. He is starting to be a lot more vocal on his own and at home, just not in therapy. We also use the cheap plastic microphones you can get at a dollar store or Target dollar aisle.)

The presenter gave us a Lexicon vocabulary list of 100+ first words broken into categories, each with a column to check the hierarchy stage the child is at (it even has a list of the learning to listen sound and the object associated with each sound). I love it and wish I would've had it from the beginning. Not only does it help me with what we need to work on and at which stage Aiden is at, but also serves as a reminder of what words we haven't introduced to Aiden.

If you'd like a copy, email me and I'll send you one. I hang Aiden's from the fridge and bring it to therapy.

That was the highlight of the meeting for me. But here are a few more suggestions offered too.

• Ask questions by offering choices - would you like milk or juice, crackers or cookies - instead of always using yes/no questions. This is how I got Aiden to say a lot of his first words and use it a lot throughout the day for things like "Do you want to wear the blue shirt or red shirt", "What do you want to do first, brush your teeth or brush your hair", etc.
• Be silly. Give them shoes without laces, put their shorts on their head, make them correct you which therefore makes them talk. My favorite example of this is from Drew's mom, who uses Mr. Potato Head and sticks the different body parts in the wrong place. She suggested starting with just a couple parts then adding on as they learn.
• Make questions purposeful. "What's that?" is not always a purposeful question and teaches them to answer with one word.
• Once they are spontaneously using a word, change it up. For example, Aiden has had "uh-oh" down for some time now, so whenever he drops something, we say "oh no" instead; use "see you later" or "adios" instead of "bye-bye" etc.

Kids with hearing loss can be very concrete in their language - they talk about what they see and do. Expanding conversations can facilitate advanced language and higher order thinking. Some idea conversation starters given to us include:

• What if ... (it rained Kool-Aid)
• If I were .... (I were a lion, what would I do all day?)
• I wonder ... (what a dog would say if it could talk?)
• What could happen ...
• What do you think ...
• When I grow up ...
• When I was ...
• One time ...
• You won't believe ...
• Bet you can't guess ....
• Remember ...

READING

• Reading aloud increases listening comprehension, improves vocabulary, improves oral narration skills, and improves phonological and phonemic awareness.
• Don't just read the words on a page ... talk about/describe the pictures and have the child predict what will happen next. Act out the story. Relate the story to the child's life.
• Goal - 10 books a day. We learned this when Aiden was just nine weeks old, so we set it as a family goal that between the four of us, Aiden would be read ten books a day. Now it's down to his dad and I and we probably get in about six a day, but if you count the rereading of that ONE book over and over again, we may just meet that quota of ten.

and then of course they talked about the importance of MUSIC and it is best summed up with a quote from Daniel Ling himself,

"When music and song are not made available to them, the experience of children who are deaf or hard of hearing is unnecessarily restricted."

Parents Only Conference - Listening, Learning, and Literacy for Children with Hearing Loss - FREE!

Another great conference, through the First Sounds-First Words program, will be held on March 21st in Fort Worth,TX. This one is for PARENTS ONLY of children with hearing loss, and once again it's FREE!!! Top notch professionals will be there--Carol Flexer, Jane Madell (she spoke at the first conference we ever went to, right after we heard of Aiden's hearing loss, and she is wonderful!), Marguerite Vasconcellos, and Denise Wray. Each presenter will provide two short workshops during the day (see below). Parking, materials, breakfast, and lunch are all provided! This is one I've been looking forward to all year! I'm still trying to arrange a flight to DFW ... what a learning opportunity for parents with deaf/hoh children!

Details from the flyer are below.

Participants can choose from the following topics (subject to change):

The Listening Brain: The Basis of Talking and Reading (morning)
Theory of Mind: A Critical Factor in a Child’s Cognitive and Social Development (afternoon)
presented by Carol Flexer, Ph.D., CCC-A, LSLS Cert. AVT, University of Akron, Akron, Ohio

Audiology & Technology: What Parents Need to Know (morning)
Auditory Neuropathy/Dys-synchrony (afternoon)
presented by Jane Madell, Ph.D, CCC-A/SLP, ABA, LSLS Cert. AVT, New York Eye and Ear Infirmary, New York, N.Y.

Navigating Mainstreamed Education for Children with Hearing Loss (morning)
Coordinating Curriculum in Therapy for Children with Hearing Loss (afternoon)
presented by Marguerite Vasconcellos, MS, CED, LSLS Cert. AVT, Bucks County Schools, Doylestown, Pa

Emerging Literacy for Children with Hearing Loss (morning)
Books and Babies: It’s Never Too Early for Reading (afternoon)
presented by Denise Wray, Ph.D., CCC-SLP, LSLS Cert. AVT, University of Akron, Akron, Ohio

This event is FREE and sponsored by CVS Caremark Charitable Trust Foundation.
Space is limited so please register soon.
First Sounds-First Words is an educational series made possible through a generous grant from CVS Caremark Charitable Trust.

WHAT: First Sounds-First Words Program For Parents Only
Listening, Learning and Literacy for Children with Hearing Loss

WHEN: 8 a.m. to 3:30 p.m., Saturday, March 21, 2009

WHERE: Cook Children’s Medical Center
North Pavilion Classrooms and Hochberger Auditorium
801 7th Avenue, Fort Worth, TX 76104

TO REGISTER CONTACT: Becky Clem, MA, CCC-SLP, LSLS Cert. AVT at becky.clem@cookchildrens.org

Excellent Presentation by Carol Flexer, Ph.D.

I wanted to share this presentation, http://www.hearandsaycentre.com.au/documents/CaroleFlexer-AuditoryBrainDevelopment-AParadigmShiftforChildrenWhoAreDeaforHardofHearing.pdf, that I saw from another mom on a list serv. This is a very informative presentation by just reading through it; I wish I would've been there to see Carol Flexer give it in person.

It reminded me that hearing loss is not about the ears ... it's about the brain. It reminded me of all I can do as Aiden's mom, to help "grow his brain" to hear, and how this in turn is so important for him to speak! It reminded me that all the hard work we are doing is going to enable my deaf child to not only hear, but to listen and to speak! It reminded me how important it is to keep those hearing aids in, every waking moment, no matter how much he pulls them out. It reminded me that every word I say to him, every book I read to him, every song I sing to him is worth so much.

I hope you get as much out of this as I did. I saved this to my computer and will go back and review it quite often. Just to remind me.

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 becky.clem@cookchildrens.org.

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!