Allen, Emma and I attended Cochlear America's HOPE Notes workshop with special guest speaker Richard Reed last night. I learned about Richard several years ago when we resided on Kodiak Island shortly after Matt received his first CI. Turns out, I worked with Richard's friend, who brought me up to speed with Richard's new approach to music, a way that made it more hopeful for CI recipients to ditch the old, conventional wisdom of having simply a speech processor, to a new idea of having a SOUND processor.
Fast forward one major move for the Vorholts to Texas and a bilateral implant for Matt. There we were, listening to basic music theory, which Allen and Emma are well-versed, and learning why Matt prefers CDs to radio and what activation day may have sounded like for him.
CIs have 22 electrodes that are expected to replace thousands of tiny hair cells to reproduce music and it's common elements: pitch, dynamics, rhythm and timbre. The CI's microphone captures the sound and it's processor turns the sound waves into digital signals which are then sent to the auditory nerve and interpreted in the brain. In order to train your brain to understand the strange CI sounds, Richard says you need to train your ear. Ear training + brain training must occur during your active practice of listening to music, something we hearing folks take for granted.
Richard explained how difficult it was to lose his hearing - not just words from his loved ones, but also his favorite songs that could make him feel better. How many times have we been sad and turned on a little DMB, Jack Johnson, anything that will soothe our mind? How scary to NOT have that option!
And I was propelled back to a time when I watched a small toddler lose all hearing. A small toddler who fell into a deep depression because he couldn't hear his music, or the dog barking, things that made him happy and laugh. This image reminded me of why I pushed (OK, at time,s I scratched and clawed my way through the nay sayers and red tape) for Matt to get a CI. Matt's adventure can be found here: Second CI AND VIDEO.
As a musician, Richard was excited about his new electronic ear and returning to the love of music. He described his post-activation day first keyboard sounds as overwhelming, but after much practice, realized the further apart notes are, the easier they were to hear. He says adding visual and tactile to a music lesson changes the auditory experience and suggested letting children learn an instrument, even if they're not good at it. A fixed pitch percussion-type instrument is best because it doesn't need to be tuned often.
Matt is a non-stop drummer, just like his oldest brother. If there is an item to be beat on, he will do it. Being exposed to so many instruments, too, in Casa Circus Vorholt has no doubt helped this child progress faster than the average CI kiddo.
Richard says making music reduces stress. I know this to be true, because Allen can come home from an over-scheduled day and find peace in banging out his frustrations on his drum set. Emma leans to me and says, "Mom, you should try learning to play an instrument."
As to why Matt prefers CDs instead of the radio when in the car, Richard explains that Matt knows what song is next on the CD. His brain expects familiar rhythms, melodies, etc. when his favorite band is playing. The radio doesn't provide knowns, it's full of unknowns and harder to process as quickly.
To round out his presentation, Richard gave the audience an uplifting sneak peek at HOPE Notes, a program designed to improve music perception and appreciation using old favorites, like Twinkle, Twinkle Little Star. Ironically, this is the song we used to help bring Matt back into the hearing world on his activation day.
Richard also says that CI recipients may find they prefer an octave higher or lower than middle C and quickly played examples on his keyboard. Allen, ever the result of many years of drum lessons and self-taught experience, whispers, "Matt's higher."
Of course he is. I wouldn't expect Matt to be anywhere below middle C. He fully lives his life higher than anyone's expectations, probably even his own.
Wednesday, April 27, 2011
an octave higher than middle C
Labels:
activation,
carey anne photography,
CI,
cochlear implant,
deaf co-op,
HOPE Notes,
Matt Vorholt,
music,
music therapy,
Richard Reed
Matt's electronic ear adventure video
Labels:
activation,
audiologist,
bilateral,
CI,
cochlear implant,
Houston,
Matt Vorholt,
Virginia Mason
Saturday, April 23, 2011
where are your ears?
"Where are your ears?" is frequently spoken in our family. OK, technically, it's signed, because Matt can't hear us when we ask him this question. His ears are his cochlear implant devices (CIs) and allow this profoundly deaf child to hear. He has clever ways of storing them (See here and here) with his new favorite place of a nightstand drawer at night, which isn't really helpful with CI proper care and the need for dehumidifying at night......
This is what we discovered today after he suited up for an afternoon of swimming:
This is what we discovered today after he suited up for an afternoon of swimming:
Wednesday, April 20, 2011
family sounds
I love this city and it's extreme closeness to culture and the arts. The Houston Symphony has FREE lawn seating for it's performances at Woodlands Pavilion and this tribe took full advantage of great weather, a semi-open evening schedule and blankets on the grass this evening.
The show was "Out of this World" with music from E.T., Jetsons and, of course, Star Wars. We knew every set, either from the movies or from pieces the kids have played in band and orchestra. Matt and Emma even wore their Star Wars shirts.
My kids have been drug to music shows their entire lives (OK, for the little kids, their entire Vorholt lives), so they know to wait for the conductor to bring their arms down before applauding. They like listening to music, reproducing the noises they hear with their own mouthed sounds. Especially my deaf kid. He can make the exact sound, pitch and all, of complex instruments with his bionic ears.
The final song was the all-familiar theme from Star Wars. Nick jumped up and screamed "bum, bum", which has always been his way for saying Star Wars - it sounds like the beginning of the Darth Vadar music, imagine that! And then he began conducting! Little right arm was flying, with occasional motion from the cerebral palsy-affected left. He even screamed out "R-2" when the music became quiet.
This child with his small head, severely damaged brain, recognized this music. He assumed the stance and motion of an orchestra conductor. He knew which movie the music originated. He knew the characters from the movie. He was beyond thrilled they were playing HIS "bum, bum". "Dad! Mom! Bum, Bum! Bum, Bum!" I was choking back the sobs of sadness and joy that flood my emotional self during moments like this. And I want to write the neurologist who told me this kid could never do the things he's doing now to set the record straight.
The show was "Out of this World" with music from E.T., Jetsons and, of course, Star Wars. We knew every set, either from the movies or from pieces the kids have played in band and orchestra. Matt and Emma even wore their Star Wars shirts.
My kids have been drug to music shows their entire lives (OK, for the little kids, their entire Vorholt lives), so they know to wait for the conductor to bring their arms down before applauding. They like listening to music, reproducing the noises they hear with their own mouthed sounds. Especially my deaf kid. He can make the exact sound, pitch and all, of complex instruments with his bionic ears.
The final song was the all-familiar theme from Star Wars. Nick jumped up and screamed "bum, bum", which has always been his way for saying Star Wars - it sounds like the beginning of the Darth Vadar music, imagine that! And then he began conducting! Little right arm was flying, with occasional motion from the cerebral palsy-affected left. He even screamed out "R-2" when the music became quiet.
This child with his small head, severely damaged brain, recognized this music. He assumed the stance and motion of an orchestra conductor. He knew which movie the music originated. He knew the characters from the movie. He was beyond thrilled they were playing HIS "bum, bum". "Dad! Mom! Bum, Bum! Bum, Bum!" I was choking back the sobs of sadness and joy that flood my emotional self during moments like this. And I want to write the neurologist who told me this kid could never do the things he's doing now to set the record straight.
Pearland Junior High East UIL Contest ~ Spring 2011
When we lived in Kodiak, Emma was a member of the Kodiak Youth Orchestra and played violin. Youth orchestras in Texas weren't as easy to join, so Emma took up the French horn. She was placed in symphonic band and had to work hard to learn a new instrument last year. For this school year, she made honors band. A huge accomplishment, but the added responsibility of practice made for tough moments. She pushed through and performed with the school at UIL last week ~ they scored all ones (the highest score).
Enjoy Butterflys Ball, Fortress and Henderson Field.
Labels:
pearland junior high east UIL
Monday, April 11, 2011
an Alaskan boy with Cajun blood
Jambalaya, crawfish, but no gumbo. That was the menu for our Louisiana-born boy's 16th birthday party. Two years ago, we had Allen's pool party planned - food, supplies, the whole deal - when horrific weather moved in and our home flooded. It was.... well, horrific. Here's a link: Flooded Again
This weekend's party, however, was without rain and water flooding, but WAS flooded with fun and a good time. Our chef and crawfish cooker, Michael, did a superb job and even found a turtle in one of the sacks!
Our evening began with a visit from our cousin, Becky, and her husband on their way home from the West coast. Doesn't a road trip break with water guns and lots of laughter mixed with joyful screams sound perfect? Watching them play with the little ones was a riot!
Emma and her artistic friend decorated the garage with birthday wishes using Allen's nickname, Alaska. An Alaskan boy with Cajun blood....
Wednesday, April 6, 2011
saddle up
Mornings in Casa Vorholt are not fun. They are filled with protesting screams (protesting getting out of bed, getting dressing, eating, brushing teeth, putting on own shoes, you get the point) and lots of teeth grinding. The source is Nick.
Nick does not like transition. Change is easy, but transition through the change makes him extremely unhappy, unless there's a video game involved. He can't express complex feelings, or simple feelings some days, so he communicates in the way that gets the biggest reaction - SCREAMING.
I can honestly say that screaming is the soundtrack of my life and I want someone to please change the CD!
Last week I reached my max with these loud, frustrating and challenging morning routines and decided the only way to make it better was to change. Which meant transition. Can you guess who wasn't happy?
I went to our arsenal of home therapy devices. We are the Disney of home devices with two children who have special needs. Everything from vibrating pillows to kangaroo swings that hang in the playroom. I chose a weighted vest for Nick and strapped it to him.
Instantly, he relaxed. There were still a few whimpers, but not the guttural open-mouthed scream. The idea behind the weighted vest, which also come as blankets and lap bands, is to provide compression, similar to a hug, and deep pressure so the body is more aware of it's position. It provides proprioceptive input and calms the person.
I'm thinking of having several large ones made. Having a hard day? Here's a vest.
This morning as I removed all of Nick's accessories after he finished eating breakfast - without any screams, mind you - I was reminded of unsaddling a horse. He has a pillow as a riser to fill the empty space between his tiny back and the chair. It helps him keep his legs down and not pull them up to sit sideways in the chair. He has his weighted vest. This is all topped with a bib, because CP kids are messy eaters. As I placed it all on the antique butter churner in the kitchen, it really felt like unsaddling.
Maybe that IS what I'm doing..... Unsaddling my stress.
Labels:
CP,
Nick Vorholt,
therapy,
weighted vest
Monday, April 4, 2011
horses and Hazzard
Jessi has riding lessons on Monday afternoons. Today, the boys were my entertainment and the new rental car was their playground. Even the 10 million DVDs of Dukes of Hazzard wasn't enough to keep their interest for very long......
Jessi, however, did well with her loping technique. She seemed a little scared at times, but she maintained control for stopping.
Jessi, however, did well with her loping technique. She seemed a little scared at times, but she maintained control for stopping.
Sunday, April 3, 2011
My name is Matt, M-A-T-T, Matt
Imagine the James Bond voice: My name is Matt. M-A-T-T. Matt.
This would be my CI kid who is pretending one of his "ears" is part of his FBI/CIA package and he's communicating his every move as he stealthily makes his way through the house. I get a chuckle when we're in public and ask him if his ears are on. People stare... Well, people always stare because we're such a unique family, but this stare is accompanied with a look that says, "Um, lady, his ears are right there on his head!"
As summer approaches, we will be finding ears on the kitchen counter daily and Matt in the pool. He can't wear his CIs in water, although we have tried the vacuum-sealed-under-a-swim-cap trick, much to our audiologist's dismay. Here's a link: http://www.facebook.com/video/video.php?v=1170307103043
So, we enter the time of year when we sign 24/7. Lots of arms flailing in the air trying to get his attention across the yard, lots of explaining to swimming friends that he's not ignoring you, lots of noise... Why is it profoundly deaf children seem to be the loudest? And do the hearing children attempt to be as loud as the deaf child, as though he can hear you?
Conversation yesterday with Jess as she screeched and hollered while playing with Matt in the pool:
Me: Jess, can Matt hear you?
Jess: Um... no
Me: Then please stop screaming b/c he can't hear you and I can and I DON'T want to!
Let me add "teach Jess to express herself silently with mouth open" to my to-do list.
This would be my CI kid who is pretending one of his "ears" is part of his FBI/CIA package and he's communicating his every move as he stealthily makes his way through the house. I get a chuckle when we're in public and ask him if his ears are on. People stare... Well, people always stare because we're such a unique family, but this stare is accompanied with a look that says, "Um, lady, his ears are right there on his head!"
As summer approaches, we will be finding ears on the kitchen counter daily and Matt in the pool. He can't wear his CIs in water, although we have tried the vacuum-sealed-under-a-swim-cap trick, much to our audiologist's dismay. Here's a link: http://www.facebook.com/video/video.php?v=1170307103043
So, we enter the time of year when we sign 24/7. Lots of arms flailing in the air trying to get his attention across the yard, lots of explaining to swimming friends that he's not ignoring you, lots of noise... Why is it profoundly deaf children seem to be the loudest? And do the hearing children attempt to be as loud as the deaf child, as though he can hear you?
Conversation yesterday with Jess as she screeched and hollered while playing with Matt in the pool:
Me: Jess, can Matt hear you?
Jess: Um... no
Me: Then please stop screaming b/c he can't hear you and I can and I DON'T want to!
Let me add "teach Jess to express herself silently with mouth open" to my to-do list.
Labels:
CI,
cochlear implant,
hearing loss,
swimming
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