Whose idea was it to teach this kid to talk?

Sitting at a stop light the other night I heard Marielle repeating non-stop, "Black. Black! Black. Black!" I expanded with, "Yes, Marielle, that's a black pick-up truck" in hopes she would either quiet down or at least use some complete sentences.

She quickly corrected me with a very excited statement:

"No, mommy, look - a black guy!! Oh my gosh!!!!!!"

Horrifying. Yet hilarious.

I still haven't figured this one out. She was very excited to see "a black guy" (Note to self: get some more diverse friends and spend less time in suburbia.) She wasn't scared, so I guess at least it's good that no one passed that on to her. Yet.

Being the freak therapy loving mom I am, I put aside all questions of racial profiling and instead thought about all the good things this meant. She clearly has the ability to over hear things that were not directly taught to her, aka incidental learning. I say, "Oh my gosh" around her all the time to avoid breaking out my more flavorful language. I never sat down and taught it to her or even tried to get her to repeat it. Instead she's heard me say it a million times, and now repeats it in the appropriate context.

No one sat down and had an intense discussion about race with her, she clearly overheard someone called black. I know she didn't hear that from me or Barry, so she's overhearing conversations from other people.

Also, bonus points for the use of slang and idoms - the word guy instead of man.

By the next morning we had gone on to other hilarious conversations and had mostly forgotten all about it. Until she marched up to me out of the blue and said, "I like black men" and walked off.

Whoever is confiding their secrets to the deaf kid needs to stop, because she has officially reached the point that she will spill them when you least expect it.

File under "not rocket science"

Today we heard a lecture at NVRC by Dr. Niparko, head of the Listening Center at Johns Hopkins. I took a lot of notes I'll try to get around to discussing eventually, but here is the one statistic I can't get out of my mind -

Studies have shown that a deaf child can bridge the gap and catch up to the average hearing child. Note, this doesn't mean they catch up to thier personal hearing age, it means they catch up to their chronological age, 50% or higher. In order to do so s/he must:

1. Receive at least one implant before 18 months of age.
2. Have a mother who is very involved and understands the importance of teaching her child to talk through play (i.e. the skills you learn in early intervention and AVT type settings are constantly applied in the home)
3. Have parents with an income of $90,000 or higher.

Of course 90K in Washington DC would buy you all of my home state of Kansas. But the point is that children from good socio-economic backgrounds whose mothers have time to take them to appointments and aren't working three minimum wage jobs to keep the lights on are going to do very well when implanted early. (These children had profound hearing loss and did not receive benefit from hearing aids.)

The second biggest thing I took away from the morning was this:

Deaf people don't know how loud they are, or maybe they do and are trying to punish my supersonic hearing. If nothing else Marielle will develop enough auditory skills to know when her cell phone is ringing and enough social skills to know to PUT IT ON VIBRATE before a lecture, even if she herself isn't bothered by it. There was a deaf woman there who was receiving texts constantly and we heard every single one ring. (Surprisingly, she did have an implant, so she was either late implanted and not doing great or she just didn't care.) She was one more ring away from me picking up her phone and throwing it out the door for the lawn crew to demolish under their riding mowers. Not that I sat there fantastizing about that for 90 minutes or anything.

How many people wanted to tell me to SHUT UP today?

Research shows that you need to talk, talk, talk to your child when they are young if you expect them to develop advanced language skills. I aim for 20,000 words a day, which pretty much equates to: people in public wish you would shut the hell up already. I know the shoppers at Michael's were over me within 30 seconds of us stepping foot in the store.

Early this week I whipped out our LENA system for the first time in over a year. I wanted to get a sample of how many words Mari hears per day. The LENA is truly amazing, as it's able to filter out TV and radio and give you an actual count of words the child hears as well as conversational turns between you and your child.

Percentile Norms for Adult Word Counts per 12-Hour Day (ages 2 – 36 months )
99th   20,943 words
90th   16,534
80th   14,677
70th   13,338
60th   12,194
50th   11,124
40th   10,055
30th   8,911
20th   7,572
10th   5,715

How did we do? I half expected it to be like the first time I tried a pedometer and found I only walked about 13% as much per day as I thought. Instead, I was pleasantly surprised. In only four hours, we had 17,000 words. Even if she didn't hear another word for the other 8 hours of her day, we would be above the 90th percentile. 7,000 of the words were just during our one hour AVT session!

I'm going to try to get a full 12 hours tomorrow. I hope the device doesn't explode!

What we need is one more thing on our calendar!

I've been wanting to sign Marielle up for music therapy for awhile now. Unfortunately insurance doesn't cover it -- I don't think, I'm sure going to try! -- so it's an out of pocket expense. On Thursdays Marielle now has three hours of therapy with no break. I am exhausted by the time we hit OT, but she just keeps bouncing off the walls.

I am so impressed with our therapist. She had done so much research on CIs and hearing loss and wasn't afraid to ask me questions. She involved me in the session, while letting me simultaneously lounge on her couch. Marielle had to be carried into the session as she was screaming and flailing about, confused about the new place. When it was time to go, I practically had to force her out the door.

Learn something new today

We first met Marielle's surgeon at a Baltimore Symphony Concert! He was the medical expert in a discussion of Beethoven's deafness.

Think you know what caused Beethoven to lose his hearing? I'll bet you don't!

Read all about it.

Summer Camps for deaf and hard of hearing preschoolers

It's November and you know what that means...time to obsess about next year's summer plans!

We loved our time at John Tracy Clinic and I would like to find something similar. While nothing will compare - especially the free tuition + easy beach access - I am starting the search now so I can fill my penny jar before school's out in June. Plus I need plenty of time to meet people who will let me live in their basement for a few weeks.

Due to traffic in the DC area, I am perfectly willing to relocate for a month and am exploring programs all over the country. I'm not sure how many weeks I could take of driving around the DC beltway.

Here are some of the summer programs I've found so far. Please post a comment if you know of one that isn't listed! I am particularly interested in something with easy beach access or something in the Northeast! Bonus points if you can find me something in Boston or New York City. I would quite enjoy pretending like I lived there.

Central Institute for the Deaf
St. Louis, Missouri

Summer school is in session for 5 weeks (June 21 – July 22), Monday - Thursday. Instruction in speech, auditory training, and language occurs in the morning, 9:00 a.m. – 12:00 p.m. Some parents choose to pick up their child at noon, but we also offer the option of staying for “camp” here at school. The children eat lunches brought from home and then have either a nap or some quiet time. This is followed by a free play time (in the gym or on the playground depending upon the outside temperature). Then the children have a snack and story and center time before they pack up to go home at 4:00 p.m.
 
This year the tuition was $2,880.80 for the instructional component with a $90 fee added for the optional camp in order to cover the additional cost of snacks and materials. We do offer scholarship assistance to families based upon family size and income.
 

Summer Speech, Hearing, and Aural Rehabilitation Program (SHARP)
Gallaudet University
Washington, DC

Five-morning (8:45-11:45) a week camp conducted in two-week intervals. (Parents can select multiple two-week sessions.)

2009 Cost:
$300 for the first 2-week session, $150 for each subsequent 2-week session
Group speech therapy - 50-minute session twice a week: $15 per session
Individual speech therapy - 50-minute session twice a week: $20 per session


Camp Littlefoot
The Treatment and Learning Centers
Bethesda, MD

Designed for young children who have a primary deficit in the speech and language area, each group has an average of nine children and is led by a licensed Speech-Language Pathologist and assistant. Therapeutic language goals are addressed within the group setting. A current speech-language evaluation report or IEP is required for admission.  9:00 AM to 12:00 PM*

2009 tuition was $1,335 for 3 weeks, $1,691 for 4 weeks, and $3,026 for 7 weeks.

*For a full day, option, five-year old children who are enrolled in the speech language program may choose to enroll in the Learning Enrichment Program or the Sensory Integration/OT program.

 
Atlanta Speech School
Atlanta, GA

Wiggles and Giggles Camp is a fun filled summer day camp for typically developing children who may require special considerations. The camp is designed to be sensitive to the needs of children with speech and/or language delays. The program is offered for children ages 3 and 4 who attend the Atlanta Speech School as well as children throughout the community.

Camp staff include a speech language pathologist and an occupational therapist. The staff lead children in activities that are fun, creative, language-rich, and developmentally suited to the age group. Camper/staff ratio is 12:2.

There are two 3-week sessions and campers may attend one or both sessions. 2009 tuition was $1,090 per 3 week session. Camp operates Monday through Thursday, 9:00 am to 1:00 pm.

Speech and Hearing Center
Chattanooga, TN
(still awaiting confirmation this still exists)

Provides academic reinforcement, thematic curriculum, sign language classes/songs, educational computer games, recreational games and more! June 1-31, 2009 (Wouldn't work for us since school here isn't out until the end of June!) Cost: $100 per week


Speech Garden
North Carolina

Our Summer Camp Program is offered for four consecutive weeks during July and August for children ages 24 months to rising first grade. Students are grouped into classes by age, with a maximum of ten students to at least two staff members. Staff members consist of certified speech-language pathologists, certified resource teachers, graduate interns, undergraduate interns and parent volunteers. Classes operate Monday through Thursday from 9 a.m. with pick up by 12:45 p.m.

2010 sessions:
July 12 - 22, $500
July 28 - Aug. 5, $500
or attend both sessions for $750 total

 

 
Kids 5+

Tennessee State (free!)

A 4:6 ratio would be a plus!

Countdown

2 weeks and counting!!

I really wanted today to be activation day, only because it's 11-10-09 and I have a weird thing about numbers. That would be so easy to remember! (I can't even remember my own wedding date because I didn't pick good numbers.) Instead, we're going to Johns Hopkins on November 24. Five whole weeks after surgery.

I thought it would be five long, torturous weeks of her missing her right hearing aid. Instead she hasn't seemed to care much and we barely notice a difference of her hearing with one ear versus two. She only asked once for the aid. I told her it was broken and she moved on. Now she likes to say, "I have one aid and one CI! My ears very pretty!!!!!!"

Now I'm nervous to get the CI and ditch the left hearing aid for 3 months. Sometimes I think it will be a piece of cake, since absolutely everything else about this process has been. But then I think that maybe it's payback time and this is where it will get difficult. There's nothing I can do about it so I don't really waste time worrying. (Those who don't know much about implants can read Advanced Bionics' description of activation day.)

We'll see the audiologist the afternoon of the 24th for the inital programming. We asked for our follow up appointment to be the next morning so we can just spend the night rather than make two round trips to Baltimore. We'll go back soon after that for more adjustments. Each time we'll "turn it up" and refine the maps (programming). And then we'll go to the cafeteria and eat delicious pudding, my reward for behaving on the long car ride.

Post surgery report

After arriving home, Mari asked to nap. She insisted I sleep in the bed with her and we both slept fitfully. (Her bandage never went back on her head, so I'm sure every time she turned over on that ear it was painful.)

Around 11 pm she woke up begging for dinner. After a nap and a meal, she was completely back to normal. COMPLETELY. Barry and I were exhausted and ready for bed, but had to play with her for another 90 minutes before we convinced her to go back to sleep.

You never would have guessed she had surgery. I think missing her nap that day was more traumatic than the whole surgery thing. I could have sent her back to school the next morning. But, per doctor's orders, I kept her home the rest of the week. Trying to manage her energy - without taking her out and exposing her to a lot of germs - was a challenge!

After the first night she never took any more codeine. We had her on an antibiotic, tylenol and motrin for a week, but if I missed a dose of the pain killers she didn't seem to care. It was truly amazing how quickly she bounced back and how little she complained;  must be a recessive gene.

The Big Day

Everything went remarkably well today. Our surgeon spent a ton of time with us both before and after surgery. Couldn't have asked for a friendlier, more caring doctor. He even e-mailed me tonight to see how recovery was going.

The incision looks fantastic; most of the scar is hidden behind the ear and it's all really expertly sewn up. He shaved almost no hair. Due to her voluptuous afro, you can't even tell any hair is missing. I may even cancel her appointment at Red Door. (No joke, I really did make her a salon appointment to fix the anticipated damage.)

They let me suit up and go into the surgical suite. I had to leave once she was knocked out, but they did give me pictures that were taken during surgery. Amazing!! Since Johns Hopkins is a teaching hospital there were all kinds of residents around as well but there were plenty of "real" doctors too. I think when I left the suite there were at least 6 in there. The first handful of doctors  I met were all young Asian men! The last one was an old white guy which naturally made me suspicious. Who let him join my Asian Dream Team!? (Is it racist to say I prefer Asian doctors? Because I DO. I have had nothing but excellent luck with them, especially the surgeons.)

We stayed in recovery only an hour, doted on by all the nurses. I believe we were the last surgery of the day so we had everyone's attention. They wheeled us out to the car in a wheelchair - my favorite part, her least favorite. (After I delivered Marielle I did NOT get the special wheelchair escort I had heard so much about. By that point they just wanted me gone and made me walk outta the hospital. I was overdue.)

As we were driving home the wrap on her ear started falling into her line of vision. The doc had asked us to keep it on for 48 hours, but also said that for someone her age, the fight would be more of a problem than going without. Instead of 48 hours, the thing lasted about 48 minutes. I spent most of the trip home batting her hand away from her ear.

When she first got it off, she reached up, touched her ear and said, "WHAT HAPPENED?" and started crying. It was heartbreaking. Then I realized she was most confused about the fact she was wearing only one hearing aid and thought we had lost the other. I pulled out a mommy-white-lie and told her it was broken and that we were getting it fixed and her ear would work again soon.

She's not enjoying herself tonight. All she wants to do is sleep, but it's very fitful and she wants me in the bed next to her. If she wakes up and I'm not there, she starts crying. I'm just watching the clock, anxious for the next codeine dose. Hers, I mean. I'm going for something stronger.

Surgical Prep

We've been busy mentally preparing Marielle for her trip to the hospital tomorrow. I even had a play house made of the Johns Hopkins Listening Center for her preschool classroom. They've been reading books about going to the hospital, role playing, etc. We went to Build a Bear and got scrubs and medical tools for her teddy bear. When she wakes up from surgery I'll have his ear wrapped in gauze too. I purchased several toy implants from the Cochlear corporation.

This morning I told her she was going to the hospital tomorrow. She replied, "No. I go to school. Bear go to hospital." I might have to wear my scrubs just to get her in the mood. It's for her, of course. I totally am not going to sneak into rooms and treat patients to pass the time during her surgery. That would be wrong.

The kids have created their own helipad on top of the playhouse.

Signing in the rain

Sing & Sign along with us and these re-written Signing Time songs!

When I get dressed I know there are a lot of things to think about,

If it's freezing and 43, three layers of clothes are perfect for me...

Hi, hi, so nice to meet you -

It's signing time with Rachel and Mari!

Red, red, Elmos are red...

Blue, blue, the giant bird is beautiful...

Who has the frog?  (Yep, that's from my hat collection!)

Do you feel excited?

Do you feel grumpy?

By the time it was done, we were soaked to the core. When we got to the car, I had to strip off Mari's wet clothes, dress her in dry ones, and cover her in blankets while I continued to get pelted. My coat is now headed to the dry cleaner and my floor mats are headed to the steam cleaner.

Let's not talk about the fact that before we left for the event I ran back into the house to get my umbrella, and then LEFT IT IN THE CAR. Not sure it would have been much help in fighting the artic monsoon and mudslides that have overtaken Northern Virginia. What happened to fall??