JTC in pictures

The decor appears to be early 90s. Forest green carpets and mauve bedspreads make it hard to decorate with anything purchased in the last 15 years.


This is what the walk to school looks like every day. Takes an insane amount of time, but I am trying to be patient.


The famous tree.


No TV and few toys in our apartment leads to some interesting forms of entertainment. Here she is tracing her feet.


There are six kids in her class, one teacher of the deaf, and at least 2 teacher's assistants at all times! The first day the ratio was almost 1:1.

We stay in the classroom for the first hour every day to play with our kids and the teachers observe and offer suggestions. It's great to be able to watch her at school, though there is also much to be said for putting her on a bus and going back to bed!


- iPhone magic.

Good listening?

Earlier this week Mari passed gas in major way. The noise was muted by her diaper but must have still been loud enough for her to hear, as she smiled, looked up at me and said..."music!!!!"

I cannot wait to tell this story at her wedding.

-- Post From My iPhone

British invasion

It seems half the families attending this session are British. I can hardly complain about jet lag or our miserably long flight which was only half as long as theirs.

I hope Marielle leaves with an awesome accent!! I shall attempt to leave here speaking "English" and saying fantastic things like "rubbish" and "biscuits."

-- Post from myiPhone; forgive typing errors and strange auto corrections

You've been warned

If you want to come to JTC next summer, apply NOW. There are already 14 families ahead of you. If you wait until December, it will be too late!


-- Post From My iPhone; forgive typing errors and strange auto corrections

Easily excited

Yesterday I had a conversation with Marielle! Not just her talking or me asking her questions with one word responses-

"Oh no! Mari has a boo boo in her mouth!"

"What hapened?"

"I bit my tongue!"

In our world, that's an incredible accomplishment. I was even more thrilled than when she said "your" in the proper context. It doesn't take much to excite me.


-- Post From My iPhone; forgive typing errors and strange auto corrections

Background

So what's this clinic thing you're going to?

(Short Version: Remember Spencer Tracy?? His son was deaf. His mom formed a school to teach her son and deaf kids to talk. They have a 3 week summer program we're attending. It's at USC in Los Angeles.)

Taken from the JTC website:

After Spencer and Louise Tracy's infant son was diagnosed with profound hearing loss in 1925, Louise Treadwell Tracy devoted her time and energy to studying how deaf children could be taught to communicate with the hearing and speaking world. She patiently guided her son, John, into an understanding of language and lip-reading. With her encouragement, he learned to speak. In 1942, Mrs. Tracy responded to a desperate call for help from twelve other mothers of young deaf children by founding John Tracy Clinic.

Mrs. Tracy compassionately established programs to educate and offer emotional support to parents and their preschool deaf youngsters, free of charge. By encouraging parents to build a foundation of communication with their young children during the critical language development stage from birth through age five, the Clinic has enabled thousands of boys and girls to master the challenges of oral communication.

John Tracy Clinic is a private, non-profit education center. Its mission is to offer hope, guidance and encouragement to families of infants and
preschool children with hearing losses worldwide by providing free,
parent-centered services. The Clinic has 65 years of expertise in the
spoken language option.

The parents' program includes:
- Frequent participation in child’s classes and ongoing meetings with teachers
- Daily lectures, panels, demonstrations and question-answer sessions
- Individual consultations with professionals and small support groups

The d/hh preschoolers are in class from 9-3. In addition to normal preschool activities, they receive comprehensive audiology evaluations and hearing device analysis and in-depth speech-language assessments.

The timing couldn't be better for us. Marielle loves speech therapy more than ever, and has been making some incredible improvements in her speech and language in the last several weeks.

Ground Rules

We begin our adventure at 5 am tomorrow when we depart for Los Angeles. Marielle and I are spending three weeks at the John Tracy Clinic.

You may have read about Miss Kat's visit. (I appreciate all their detailed posts as I now feel much less responsbile for frequent reporting!) Kat's mom has gone out of her way to teach her daughter ASL. Much further than we'll ever go. And yet almost every post is still filled with hateful comments about how she's ruining her daughter (that clearly the commenter didn't even bother reading about). I can guarantee those comments won't appear here...because I won't approve them! If you don't have something nice to say, go somewhere else.

That being said, for those who do want to learn all about our journey, cross your fingers that I can summon the strength and willpower to post regularly. And the more pleasant comments I get, the more I will feel inspired to post. No pressure.

1 + 1 does not always equal 2

This is a great example of Mari's struggle with apraxia. For months she pronounced "baby" as "NGNG." (I know of no other way to spell it. It was a very gutteral noise produced in the back of her throat with no real vowels or consonants.)



Now we have the "buh" sound, the "ay" and the "eee," but put them all together and you get BAYGEE! Or DayDee. Or about 1 out of 15 times, Baby.

If you listen closely you will notice the that the "ay" sound almost never sounds the same, and "bay" is still sometimes "day." At least now it's close enough that most people can figure out what she means.

I'll miss everything but the drive

We started seeing A. for speech therapy almost a year ago. We were willing to make the 30+ minute drive each way to see her once or twice a week because she is a fluent cuer.

Back in the day, Mari would wait patiently in the lobby, reading books and playing with toys.





















Now she runs through the lobby screaming "WHERE A.?! WHERE A.?! GO SEE A.!" and doing the most hilarious sign for "where" that you've ever seen in your life.

In the beginning, the swing was big and scary and caused much crying. Dolly usually rode in the swing; Mari not so much.





















Now Mari will drag that swing through the office and hand it to you, begging until you hang it from the ceiling and let her climb in.




























Seeing Marielle in therapy kind of makes me want to scream "HA!" I have heard so many stories from older Deaf people about how much they hated speech therapy and how we parents of deaf/hh kids are ruining them for life by making them go. I guarantee if you made Mari choose between an hour with A and an hour with me, it wouldn't take her even a fraction of a second to decide. She has so much fun "playing" that she cries when it's time to leave.

Now A. is leaving to go back to working for the school system. At least we still get her for summer school services, because I am sneaky and coniving!

We're grateful for all she did for Mari, sticking with us when other therapists just declared she was stubborn or "would grow out of it." A. diagnosed Mari with Apraxia and suggested occupational therapy. Both have been life changing and we owe her for it. Almost every day Marielle asks, "GO SEE A. TODAY!?!" I cringe thinking about what it's going to be like the first time we show up for OT and A. isn't there anymore.


















Who are you, new speech lady? I'm thinking this isn't going to end well...

Real World Northern Virginia Edition

This essay about a mom's experience with apraxia really hit home. Though Marielle is by no means that severely apraxic, I still identify with this mom's experience more than I do with most moms of "normal kids".

We parents of kids with special needs spend hours and hours of driving to appointments, sometimes several a day. (2 per day so far this week.) My entire calendar must be changed at the drop of a hat to accomodate therapists who have so few openings that flexibility is not an option. You take what you get, and you'll like it.

We've rearranged our careers. Barry's in a "real" job now that provides us with great health insurance and unlimited visits to the OT, SLP, ENT, chiropractor, etc. They even pay for all sorts of audiology services I wouldn't have expected. Barry gave up the freedom that comes with setting his own hours so we could have a stable income. I know it's really hard for him to get out of bed, put on pants, and go into an office every single day. He saw the good life and then had to give it up to go work for the man.

My work day is spent frantically checking e-mail between appointments, working early mornings and late nights so I can play chauffeur throughout her waking hours. Any spare moments are spent filing all the required insurance paperwork so I can be partially reimbursed for the hundreds spent each week on therapy.

We miss family vacations because we absolutely cannot reschedule certain appointments with specialists. "Sure, we can fit you in...in another three months. Do you still want to move it? It will delay your surgery date by at least three months."

Marielle's progress in the last few months has been nothing short of miraculous. Her apraxia is definitely still there and really shows itself in speech therapy but her speech is getting much more intelligible and she is trying so hard to talk.

For example, attempting to get her to say "baby" goes something like this:

Baaaay................................Bee
Baay.........................Gee
Day......................Dee
Bay........Dee
NGNG (Yeah, I don't really even know if there's a way to write the noise she makes. Some sort of strange gutteral sound.)

Now that she can put her lips together we've been working on a whole new set of words. Trying to make a ghost sound goes something like this:

Buh...........................................Ooooo
Buh.................Ooooo
Buh.......Oooo
NNNG!

I have no idea how her brain makes that happen. When she did finally say BOO! yesterday at speech, I lifted my head off the pile of beanbag chairs I was laying on long enough to wipe away the tears. Then I decided I was officially allowed to nap through the rest of the session.

I can't identify what has made the difference. People like to tell me "we cured our child with salmon!" or "accupuncture is the answer!" but I feel her speech and motor skills have improved due to a combination of all things we do every week. We've increased speech to 3+ visits a week. She gets occupational therapy at least once a week and also visits a chiropractor. I give her fish oil supplements when I remember, because I figure it can't hurt. She's been taking a gymnastics class for kids with disabilities to work on her motor skills and we take a lot of trips to the playground. We increased the gain on her hearing aids again. Of course we also let her watch a lot more TV these days, because when we're home, we're too exhausted to move. Maybe Wubbzy is the magical cure.

If I have to break a lunch date or show up half an hour late or just fall off the face of the earth for weeks at a time, I hope you understand why. Everything I've learned about early intervention for the past 2 1/2 years has taught me the first three years are critical. Though obviously the next six months isn't my "last chance," there's no way I'm slowing down now. But the day she turns three, all bets are off!!

Now go read about Elinor and leave her mom some words of encouragement.

Packing our bags

I'm getting excited about our trip to John Tracy, and have been scouring the web reading other moms' stories so I know a little more of what to expect. In addition I've been planning out every spare second with field trips across Southern California using free hotel rooms I've accumulated.

I got a crazy good rate on a rental car, through trickery I don't feel comfortable sharing until after I pull it off. We shall use it to tour all the local Costcos which I've already plotted out on Google maps. Grandma & Grandpa will be joining us for just over a week, then Barry will join us for the last nine days. The joys of having a two bedroom apartment!

I am pleased it's finally reasonable for me to start packing!!!! You have no idea how hard it's been to resist. The piles have been accumulating in corners of my bedroom for two months; I've been decorating our dorm room in my head even longer. Now that I don't have any more out of town trips between now and our departure for LA, I feel I can actually start putting things in the suitcases. (Be certain with much careful planning each of our suitcases will weigh exactly 69.9 lbs, the free limit on Virgin America!)

Now I'm off to figure out the best way to roll our Jonas Brothers posters so they'll fit in the suitcase without getting creased. That's what all the cool kids have on their dorm room walls these days, right?

Ancient history

Remember this little issue?



(captioning - all she's saying is MAMAMAMAMAMAMAMAMAMA nonstop.)

We now are hearing all the bilabial sounds. She's not able to put them together with vowels very well yet but we'll take what we can get. Cows don't say MOO in our house they say M (pause) OOOO. Sometimes they show up in the wrong place. "Pop" is always "Pot!" and "Boots" are "Boops!"

Though we've had handfuls of therapists working on this with her for 2 years, I was there the day it all clicked in her brain. (If you are curious we were doing intensive work with the chicken in her Little People collection saying BAWK! BAWK!) Therefore I'm going to take all the credit.

Implant FAQs

1. How much does one cost?

We've already reached our out-of-pocket-max on insurance for the year, so for us it shouldn't cost a thing. It's a strange, strange world when our insurance will cover an $60,000+ implant but not a $3,000 hearing aid. Not my fault they are idiots. Cha-ching, suckers!

2. Will you still cue?

Definitely. Cueing can be quite helpful in the rehab process and is a great match with implants.

3. Why just one?

While our insurance does cover two, the plan now is for one implant and one hearing aid, also known as bi-modal. Many people lose all their residual hearing when they are implanted. Marielle has a decent amount of residual hearing which will allow her to hear us when she is swimming or bathing as long as we speak loud enough and are close.

In addition, pitch perception is much better through a hearing aid than an implant. The hope is the combination of both will allow her a more accuracte appreciation of music while still allowing her to develop her speech skills.

4. But I read that _____ and you should totally listen to what I want/say/believe!

Don't care. Shut up. I pushed this 10 lb kid out my vagina, I get to make decisions for her until she's old enough to do so herself.

5. What if she decides when she's older that she doesn't want to wear it?

Fine. Don't care. She can make that choice when she's old enough to pick out her first tattoo and rent her own car.

By then hopefully my cueing and my ASL will be proficient and I can keep up with her with no problem no matter what path she chooses. We've exposed her to everything since she was a baby, and I'll let her choose whatever she wants to do. I do believe, however, that if you don't implant (or aid) a deaf child while they are young and in their prime years for learning language, you have effectively eliminated one option for them which isn't fair either.

6. When's the surgery date?

Well, we still have to officially pass all the pre-op testing and Barry has to fully climb on board the CI-train. But if all goes according to my master plan, it will be sometime this fall. (See #1 and out-of-pocket max!) We'll talk to the surgeon in a couple of weeks about his availability and figure out how we can best coordinate with her school schedule. It's outpatient surgery, so we'll be home by dinner time.

7. Will she hear perfectly?

After surgery it will be 4-6 weeks before it's even activated, during which time she'll be completely deaf in that ear. We will have to go through a lot of auditory rehabilitation as the CI sends sounds to the brain in a much different manner than a hearing aid. Luckily we've already had two years of training with a teacher of the deaf and a speech therapist; I feel like she's going to have a great head start.

In the end she'll hear about as well as your average 60 year old. Not perfectly but a heck of a lot better than she hears now.

8. Why now? Why not sooner? Why not wait?

Until recently Marielle's hearing loss wasn't bad enough to qualify. She was just below the cut-off. The last two booth tests have shown her average loss is now in the severe category, and now that she's over two, that means she qualifies. (Most implants on infants/toddlers are for those in the profound range.)

Recent testing also revealed that with her hearing aids she correctly hears less than half of what is said. In a soundproof testing booth. With absolutely no background noise whatsoever.

I know that her hearing loss will never improve. If anything it will only worsen. I would much rather implant her now in her prime language learning years than wait until she's well into elementary school. Plus, see #1. It's like the universe handed me a giant coupon, and I sure as hell am not going to let it expire.

9. You make it sound like your mind is already made up. What does Barry think about this?

We'll see what Dr. Limb says in a couple of weeks and then we'll make up our minds. After almost seven years of marriage, Barry knows how things work around here.

Moving forward

This weekend we made the journey north to find out if Marielle is a CI candidate.

During our initial meeting with the audiologist I asked to see the different processor choices. In an ideal world we could pick features of each and combine them into the perfect implant. (Should we move forward we already have our minds made up, but I did want to see them up close.)

I removed one of Marielle's hearing aids and put a processor on to see what it would look like. I am so used to seeing them on the tiny ears of infants that I didn't realize that it would be barely visible under Marielle's mass of curls.

After my curiosity was satisfied I went to put the hearing aid back in her ear. She refused and ripped it out. Instead she grabbed the mirror and had to try on each of the three choices. "This one? NOOOOO. This one? NOOOOO. Other one?" (Is it really fair that one of them was bright pink and the others were brown??) She then had to point the mirror at each of us so we too could see. "Mommy's turn! Daddy's turn!" I'm pretty sure she thought she got to go home with one that day. If only it were that easy!

We were given the green light to proceed. The next stop in the candidacy process is a consultation with an ENT. He's really the only person whose opinion matters to us at this point and we trust his judgment. He's the only one that could talk me out of it at this point and also perhaps the only one that could convince Barry that the time is now.

Not only is Dr. Limb an Ivy league educated surgeon but he's a musician, researcher, professor and Beethoven expert. We've actually met him twice in the past and he's been very receptive to our questions and concerns and spent a lot of unbillable time talking with us! What more could we ask for?

I'm pretty certain if he's unmarried I'll be forcing him into an arranged marriage with one of my friends/family. After that I'm going to see if he's open to bartering a nice saxophone for his surgical skills. This appointment isn't going to be awkward at all!!!

(To learn more about cochlear implants, watch this four minute movie.)