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.
November 22, 2009
Whose idea was it to teach this kid to talk?
Labels: talking 3 comments
November 21, 2009
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.
November 18, 2009
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 )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!
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
I'm going to try to get a full 12 hours tomorrow. I hope the device doesn't explode!
Labels: talking 2 comments
November 13, 2009
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.
Labels: music therapy 2 comments
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!
Labels: Dr Limb 2 comments
November 11, 2009
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.
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
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
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)
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+
Labels: Summer camps 6 comments
November 10, 2009
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.)
Labels: CI? 4 comments
November 2, 2009
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.
Labels: CI? 7 comments
October 20, 2009
The Big Day
Labels: CI? 8 comments
October 19, 2009
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.
Labels: CI? 5 comments
October 17, 2009
Signing in the rain
Labels: Signing time 3 comments








