JTC Week 3

Top 10 Reasons I Don't Want to Leave JTC:

1. We have learned more in the three weeks we have been here than we did in the whole year we have known about Skylar's hearing loss.
2. The other parents and kids are such an inspiration. Today's mom n' kids hangout time on the lawn while the dads went to a Dodgers game was...blissful. Just having a good time, sharing stories with people who understand what we are dealing with.
3. Skylar's Audiologist tested MY hearing today, for free, after I told her I still have the plugged up feeling in my ear (day 8). Get this - I have a sudden SENSORI NEURAL (inner ear) hearing loss of 20-40 dB in my right ear - mild hearing loss. Don't know yet if it's permanent - visiting House Ear Institute on Thursday.
4. I have had time to reflect on our lives in Eugene. There will be changes when we get home. Things on my list include reducing my hours at work; visiting Tucker-Maxon Oral Deaf School in Portland; learning about available Audio-Verbal Therapy in and around Eugene; buying a round table for our dining room (better acoustics/access to visual cues); and bringing an advocate (likely another parent - Annie Z, you're at the top of my list!) to our annual IEP meeting in late August.
5. Deaf Adult and Deaf School-Age Panels. These sessions were so informational, reassuring, and inspirational. I am PUMPED UP to volunteer in the classroom, make a book with Skylar's picture on it to show all of her professionals and teachers, and tackle sibling one-on-one time and jealousy issues head on. Watch out. I'm turning into a giant Mama Bear (if I'm not already one).
6. Julie - Skylar's teacher - is such a talented, natural teacher who meets kids where they are, challenges them to reach their potential, and helps parents understand how they can best help and advocate for their children. I'm putting her in my suitcase.
7. Charissa - Skylar's Speech and Language Teacher - patient, knowledgable, strategic. She has instant rapport with all of the kids she works with. Is there room in the suitcase for her, too?
8. We have future vacation/JTC reunion options around the world! London! Paris! Nova Scotia! DC! Alberta!
9. The environment here is so supportive (thank you Mary Beth, thank you Angie, really thank you all of the staff at JTC) that I know it will be so much harder to make progress back home. We will be "on our own" again.
10. Cochlear implants are normal here. They are on almost every kid. I am not scared of them anymore. The adult panel especially, showed my how powerful a tool self confidence is. If Skylar needs them in the future, that's what we will do - and she will do great with them. The technology is such a gift.

Throughout the list is embedded the theme of the wonderful relationships we are forming here. They will last a lifetime.

Mom's Night Out

Popsicle Girls Avery, Briele, and Skylar

Ava, Skylar, and Paige at Disneyland

JTC - Halfway Point

Daddy and Skylar doing Audio Verbal Therapy

I can't believe it, but we're more than halfway through our JTC experience. This week has really flown by. We had a fun pizza night on the lawn with almost all the families on Wednesday, and today Paige and I toured the LA fashion district - oo la la! Actually it was mostly cheap stuff but we had a good time strolling and perusing all the fabric and clothing booths, especially along Santee Alley. This evening we ended up back at The Grove for some food, shopping, music, and people watching. Favorite moment: trying to find local produce at the "original farmer's market"...there was ONE produce stand, the rest were various food and gifty items, although the layout was typical of the indoor markets I've seen back east and there were several institutional eating establishments, like the ice cream place that has been there since the 40s. Anyway, "farmer's market" means something different in Oregon. The blueberries I sought out turned out to be from Fairview, Oregon (about 70 miles from our house). We are so spoiled in Eugene.

Chocolate Shake

New friends at the picnic/pizza night

A Four Year Old Moment

The scene: outside BJ's Pizza on El Toro Road, Orange County, waiting for our table. I am explaining to Skylar about making a wish and throwing a penny in the fountain.

Me: so you can wish for anything you want, like world peace, or a pony, or whatever you want.

Skylar: a pony, a pony!

Me: ok, throw your penny in and make your wish! (we throw the penny in together)

Skylar: (immediately) where's my pony?

JTC Week 2

The weekend following Week 1 was full of fun adventures including the afore-blogged-about aquarium trip, a huggy-sendoff for Gramma M. at LAX (we miss you already), an afternoon at the beach with Gramma R and Papa T, an over-nighter at their house, and the annual JTC picnic. I don't know how my brain will be able to retain all of the fun stuff we are doing along with the academic learning - but maybe this blog will help me categorize, look back, and remember. Speaking of this blog....just how many of you are out there reading anyway? Could you do me a favor and either comment on or check a reaction box to this post? Thanks.

Gramma R took some really wonderful photos of the four of us on the beach. Here is one of my favorites, and I'll get the rest up in a web folder sometime soon and let you all know when I do. Thanks Gramma for these images; they are priceless!

I was fighting a throat and ear bug over the weekend, and it continued to drag me down through today - poor Paige had to accompany me to urgent care and then the pharmacy this morning so I could finally treat my ear infection. Yep...MY ear got infected. Plugged up. Couldn't hear a thing. Now on amoxicillin and things are looking up.

The first two days this week have featured some extreme highs and lows in the hearing loss information arena. On Monday, Sky had her first full audiological evaluation at JTC. The team is VERY good, reports Jim, who was observing Sky in the booth. She did awesome, powering through an expanded range of frequency testing for both ears without getting tired or frustrated. It helped that it was 9 am and she got princess stickers AND nail polish.

The low came when we saw the results; there has been a 20 dB drop in some frequencies of Skylar's hearing since her ABR last November. This means her hearing loss is progressing, as we feared it would, leading to all kinds of questions and emotions about what to prepare for, how to prepare, and what to do. Could she lose the rest of her hearing soon? How low will it get? Will she need CI's? Do we want them for her? The amazing thing about JTC is that the very next day, today, the director and surgeon from House Ear Institute came to lecture on that very topic. Jim recorded the audio for me since I was with Paige. But first things first: the JTC audiologist turned up the power on her HA's and Sky appears to be noticing more quiet and distinct sounds as a result. We will need to monitor the new settings and ask her about what she's hearing over the next several days.

The high came today, when we met with Charissa, the AVT/Speech therapist. Charissa has been doing language assessments with Skylar, and is not done yet, but shared some initial results with us today. On the preschool language scale test (PLS-5), Skylar answered a series of questions related to auditory comprehension and scored above her chronological age as compared to her hearing peers. More specifically, she scored at the 57th percentile for kids her age (4 yrs 1 mo), putting her age equivalency at 4 yrs 3 mos. This bit of news validates the rapid progress we all know she has been making since she received her hearing aids last August. If she had taken this test back then I know she would have scored well below kids her age in comprehension. To see that she is not only caught up in this area, but slightly above average as compared to her *hearing* peers almost made me burst into tears.

Another good thing, and this one is growing in its goodness, is that through all of the new information, a-ha moments, and scary tests, there are inspirational stories and really good new friends. JTC does a fabulous job of helping the summer session families create a community. Tomorrow I'm looking forward to hearing from a panel of deaf adults. In the evening, all of the families are meeting for pizza night in the lounge. Yes, I helped organize it. :-)

JTC Day 5

Week 1 is over, and all aspects of the experience have been spectacular. We ended the week by heading down to the Aquarium of the Pacific in Long Beach. Gramma Rotzie came up to join us! Here is a smattering of pics of the visit. I will most likely resume reporting on Monday. Tomorrow Gramma Mary heads home :-( and after dropping her off at the airport, we will go down to San Juan for the afternoon and stay the night at Gramma Rotzie and Papa Tom's.

JTC Days 3 and 4

We are starting to get into the meat of the material in the classes - today we covered audiological testing and receptive and expressive language evaluations (in lectures), met with Skylar's Audio Verbal Therapist, Charissa, and met with Paige and a Family Therapist to talk about being a sibling to a child with hear betters. The Sibling Program is designed for kids age 6-11, and is described as being for siblings of deaf children. We don't use the word deaf to describe Skylar, but need not be afraid of it - there are degrees of hearing loss and deafness from mild hearing loss to profound deafness. Paige was pretty quiet during the session, but she was listening and absorbing the words we were saying. I won't be surprised if she brings up one of the topics we were discussing, like how siblings sometimes feel like they don't get as much attention as their deaf brother or sister, or how they might worry about or feel the need to protect their sibling.

The experience of the families here varies quite widely - from their child's diagnosis, to their technology, to their access to and success with therapists and specialists. Take Audio Verbal Therapy. This is a type of educational approach that focuses on making the most of the child's residual hearing, with the goal of learning and producing full, complex spoken language. At John Tracy, sign language is not taught and is vaguely disparaged as a method to use "if the child doesn't have or can't develop verbal language." We use sign as a supplemental mode of communication- in the bath, at bed time, and across long distances or in loud environments - anywhere it is hard to hear due to environmental factors or Skylar not having her hearing aids in. Audio Verbal Therapy stresses amplification and verbal strategies without the help of visual cues so the kids learn to use their hearing to the greatest possible extent. There are only 50-100 AVT's in the US and Canada, so it's doubtful we will have access to one in Eugene, but we can share the methods with Skylar's Speech Language Pathologist (who has never worked with a hard of hearing or deaf child before) when we get home.

When learning about expressive language assessments, we learned how to collect and evaluate a language sample. Basically, you write down everything a child says for an hour, and then determine the average length and complexity of each utterance to get a sense of the child's language skills in relation to their hearing peers. Average utterances are supposed to contain at least as many morphemes (the smallest units of meaning in a word) as the child's age in years. The word 'wait' has one morpheme, while 'waited' has two, because the -ed changes the meaning of the word.

Skylar's language sample today included:

• Paige, which one is mine?
• Okay, are you ready for your name tag?
• I'm gonna wash this off when I take a bath, but I'm gonna not take a bath today because we're not dirty. OK, daddy?
• (to papa on facetime video) Why you have a pie?
• I wanna be the monster now!
• Gramma Mary, this is your name tag. It has your name on it.
• But can you put it on top of the fridge so she won't eat all the choc...chocolae chips and raisins?

We will get a complete report from Charissa when she is done evaluating Skylar's language over the course of the three weeks we are here - she sees her every day. Based on the sample above, Skylar's length of sentences and number of morphemes per utterance is above average for her age! It's certain forms of words, like the past tense -ed, that we need to work on with her, and some sounds that she drops or doesn't pronounce correctly.

Each night she is talking herself to sleep for about 45 minutes, repeating things that happened or were said during her day at preschool. "Isaure! We need you! Mommies and Daddies, come in! Stir the cupcakes. I sit next to Rebekah. Wash, wash, wash your hands..." It's pretty awesome how she is processing her experience each night before bed; and I'm sure it continues throughout the night in her dreams.

JTC Day 2

Day 2: More great sessions, Paige observed Sky through the one-way glass in the observation room, we met with Sky's teacher, and we went to LA Live for dinner and ice cream. Exhausted, Happy Family.

JTC Day 1

Yesterday was Orientation Day, where we met the families in Skylar's class and her teacher, and checked out the pre-school and sibling program rooms. The take-away: Skylar was placed with the 2 and three year olds, probably because of where she was with her language development when I filled out the application paperwork back in December. She has come so far since then, and it was clear first to Jim that she should be moved up to the other room with the four and five year olds. We mentioned this to one of the teachers at the end of orientation, and by the time we arrived this morning, she had been reassigned to the older classroom. This was a good move.

Paige hung out with grandma in the morning, making muffins, playing games and fixing lunch. She relished the 1:1 attention, and Jim and I attended the morning class where we heard about the history and

operations of JTC, got a safety pep talk from a USC security officer, and toured the facility. Impressive, all around.

After lunch, Paige and grandma attended the sibling program, where Paige did arts and crafts with the other sibs. Skylar ate with her class, then took a nice nap and remained in her classroom doing activities until 3:00. We got to observe for a few minutes through the one-way mirror in the observation room - Sky is taking it all in and doing great (no drama over our

leaving the room). Yeah! She is such a rock star. The parent afternoon session was a large group circle (Chadwick-like!) where we each introduced our story of learning of our child's diagnosis.

This was only the beginning of the intense work we will be doing learning from each other and supporting each other. I love JTC's philosophy of the parents being the primary students of the program. It's empowering -- and overwhelming, but so right on. We are all here to make life better for our kids.

After three o'clock we all regrouped, had a snack, and went down to play with the other families on the big lawn in front of the apartment building. This time is precious - warm sunny weather, all kinds of kids (from all over the US, Canada, France, New Zealand, the UK, and United Arab Emirates!), kids with hearing aids, glasses, and cochlear implants, black kids, white kids, asian, latino, and indian kids. The diversity of this group is astounding. I really can't think how this trip could be anything other than awesome.

We are all looking forward to Day 2.

Arrival at jTC

Well, we made it! Our apartment is great, it's nice and warm out, and the traffic is atrocious. We got here about 3 and set about getting the apartment in order. About 5:30 we headed out for dinner and the grocery store. Google told us to get on the freeway to reach the nearest Whole Foods, in West Hollywood, and it was a mess, but you really can't win on that issue in LA. My plan is to expect everything to take twice as long as it should, so I will be happily surprised. We were rewarded by running into Laurence Fishburne in the checkout line!

We have met three families already, from Texas, Maryland, and London. It's hard to contain my excitement! In the car we had all kinds of conversations about who we would meet and how each family would have a child with hear betters. Paige and Sky are great travelers and are very excited to be here. Grandma Mary is sleeping in the girls' room - isn't she an angel?

Pictures tomorrow. Good night!