Activated!

Ellis's new cochlear implant was activated on Tuesday. Overall he did really well. He looked around, and for the most part, seemed interested. At one point during a break, I signed to him, "Do you want to hear more?" and he looked back and then nodded. But then he also nodded for a cracker. I'm not entirely sure if he understands "hear" yet. The cool thing, though, is that we have sign, so we can talk about what's happening.

Since we've been home, he's been tolerant of the CI, but not loving or hating. I'm going very slowly with it. If he seems bothered, I pull down the volume (we have some control over volume). If we're playing with a familiar toy that been making sound all along, I push the volume up a bit, and he seems curious.

By late afternoon, he's ready for quiet again. I don't blame him.

I made a movie of the experience. I subtitled the part with the technician, in case you're deaf, but somehow they went kind of awry a bit towards the end, especially in the low-resolutioning of it for web use. But the important parts seem to have come through okay--just the part with the technician explaining stuff that got messed up. My apologies. I've already spent way too much time on a 5 minute movie.

In the room with us, was the technician, my sister, Ellis's regular EI teacher, and a teacher from CHOP.

Update: sorry to those who can't see it. Google says that it's "processing". I'm not sure what that means, nor why it was seen before but not now. I'll give it a little more time then try again if there continues to be a problem.

Another update: if it doesn't work with Google, try YouTube (wh. may take a few mins to process, if you're just tuning in):

By: diber

Submitted by diber on Thu, 07/26/2007 - 01:49

diber's blog

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Bravo on having Ellis become a bionic toddler. I hope you will have him learn ASL.

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03/19/2010 - 01:02

Amy Cohen Efron:

Anti-AVT,

Ellis is very fortunate to have his wonderful mother, who is Deaf and she is using ASL since Ellis was born! That is a perfect example that Ellis have a language base and he is able to understand his environment, and did you see healthy bonding? Did you see happiness in his face? The cochlear implant is a *tool* to help him to hear some sounds, but the most important of all, he has LANGUAGE because of ASL!

Bravo and thank you for showing this videotape that ASL and AVT can work TOGETHER!

Bless you and my best wishes for your family and most of all, Elliot!

Amy Cohen Efron

07/26/2007 - 02:32

Abigail:

What a big day for you three! Thanks for sharing, I look forward to hearing more on how Ellis adjusts to the CI.

07/26/2007 - 04:35

mary kathryn:

Wow. Jeannette - thank you SO MUCH for all the work on the video - I watched it with Julia twice. How wonderful to see Ellis - he did SO WELL! I'm so proud of all of you. You have done the hard work, and have taken the difficult position of giving your child all you can for him, sometimes putting yourselves in the line of fire and criticism. I'm so excited for this new foray into sound for him - and why doesn't EVERY parent of a deaf child use sign?? Why wouldn't you want to "activate" all his language skills at those earliest months? You've done so well - Praise God!

(BTW, previous posters, Ellis DOES sign, and Jeannette is NOT deaf.)

07/26/2007 - 08:49

alli:

That video was fun to watch. Fuller liked the "Ba, ba, ba" sounds. I liked the look on Ellis' face. I don't know why I cried, but I did. I am glad that you are sharing this journey with us. It is very brave and loving of you. Ellis will have this to look back on and understand the man he will become. You are awesome parents.

07/26/2007 - 09:22

Amy Cohen Efron:

Mary Kathryn,

Thank you so much for clarifying that for me, that Ellis' mom is not deaf.

Now, I am even MORE impressed - Kudos to the family who gave Ellis' the opportunity to sign at the earliest possible age, and I can certainly see in his face that he is happier to have language (i.e. American Sign Language) to communicate with his family.

I apologize for the assumption, Jeanette.

Amy Cohen Efron

07/26/2007 - 09:24

Neil McDevitt:

Congrats on the activation. I had to laugh at the reaction he had when he "heard" something because that's often my own reaction when I hear something through my hearing aids that I've never heard before.

Just as an FYI: I live in Montgomeryville and we have several deaf parents with hearing children in the area if you're looking for folks to get together with and talk about these types of things. My own parents live in Warrington and if you want to hear from someone who's "been there, done that", let me know.

My email is attached. This obviously isn't for posting but I wanted to get a message to you somehow. Thanks!

07/26/2007 - 09:32

Jo:

Wow!!! That was amazing. I'm really glad Chris got to be with you, too.

Loved the soundtrack, too. :-)

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wonderful video J! What an exciting time! I think for those of us who NO NOTHING about this process were all naivey thinking he would just love hearing 100%, but honestly, I'm totally ready for quiet by 1 in the afternoon too. Thanks for sharing this educational experience with all of us, and being so considerate and loving to the communities surounding ASL and CI's. You're being Jesus' hands and feet. Blessings.

07/26/2007 - 09:53

Joanna Gerhardt:

Congratulations on Ellis CI activation.. I was born deaf and I myself have a CI. I had it implanted last year and I am 30. Its been 1 year since my activation.

I must say you will see a huge difference in 1 year with Ellis. Keep signing to your son! I grew up with total communication. My family signed and helped me learn how to talk with intensive speech therapy but it is worth it. I had a good experience growing up. My parents were very "selective" of who worked with me and thats important because it makes all the difference in raising a deaf child.

I will share my experience with you. So you have an idea of what haveing a CI is like coming from a deaf person.

I did not like my activation process at all it was actually very uncomfortable. I promised myself I would not give up on learning how to hear. I remember my first day I heard plastic bags,velcro, "SHHH", refrigerator humming,my 2 sons voices and my husband's voice. I could not understand speech very much for the first 2 months but I could recongize the difference between a person talking and a person making noise. I thought oh boy what have I gotten myself into! I don't like this kind of noise and so forth but yet each day was full of surprises.

As time passed I had my good and bad days.

I also had weekly therapy after I got my 2nd month mapping. Basically I started therapy right away. During therapy I would practice words, phrases and my favorite part of therapy was talking on the phone and I was so excited because I had NEVER talked on the phone! As of my 8th month into my CI I got my first cellphone and I can now talk to my husband on the phone for things that are not worth using the relay for. I can talk to my parents and my brother for a few minutes.. I do understand my children better now than a year ago. Each day gets better for me. The nice part about this CI thing is if I don't want to hear it I know I don't have to.

I have so much more to share but I don't have enough space :)

Once again congrats and best of luck to Ellis and please feel free to email me if you have questions.

Joanna

07/26/2007 - 09:59

Jeannette:

"Thank you so much for clarifying that for me, that Ellis' mom is not deaf...I apologize for the assumption, Jeanette."
I'm flattered actually. :-)

"Loved the soundtrack, too."
A nod to the deaf maestro.

Thanks for the nice comments guys. We do sign and are committed to bilingual education. I'm glad we can share this experience. Hopefully others will see that it is not scary. ;-)

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12/26/2009 - 01:23

becki:

well, jeannette, i thank you, along with everyone else, for the wonderful movie. and thank you, all who have written, for the outpouring of support (and even your own experiences) for jeannette and chris in all this! both the movie and the comments have made me tear up. and ellis! -- what a smart boy to look back at the puppet for more reinforcement while playing with his teacher! ;-)

07/26/2007 - 11:13

MBB:

ASL & AVT does work together! My daughter has CI since February, and she is in Deaf family. Her ASL development rocketed after she started attending Oral preschool that uses AVT approach for half of the day, and the visual language in the afternoon (TC). To my surprise, her ASL actually grows so much!! It's obviously that she benefits from ALL 5 senses. We the Deaf parents are so glad for making this decision even through we were frowned upon from our Deaf community. Our 2 sons dont have CI - they are 'too Deaf' and are just fine with ASL/English literacy.

Thanks for sharing the video! My daughter reacted very similar as Eli! Glad to see this post on the DeafRead!

07/26/2007 - 11:50

Katherine:

Ellis looked familiar, but I didn't bother to think harder until now. I have met you all at an event for parents with deaf children where ASL is only used. I can't believe how much Ellis has grown in a relatively short time!

From my brief interaction with you both as parents, I had a good feeling that Ellis is in good hands. Now that Ellis has been implanted, I am pleased to learn that you still consider ASL and Deaf community an important part of Ellis's life other than English and hearing community. He will love you for not withholding anything from him.

I love how Ellis walked to the grass and laid down to enjoy the view. He looks so content and happy. Thanks for sharing the video on the activation
of his CI.

07/26/2007 - 12:19

mary kathryn:

The lying in the grass was my favorite part! Isn't it wonderful how children aren't afraid of just plopping down in the grass. That was sweet. He's adorable.

07/26/2007 - 12:30

Grammy1:

I have loved learning ASL along side Ellis. ASL is a beautiful language, and signing has enriched my conceptual understanding, even from silly poems like "Teddy Bear", to the sublimely signed "thy kingdom come" in the Lord's Prayer. I hope auditory access will benefit Ellis as much as ASL has benefitted me.

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07/02/2009 - 20:51

Devona:

The video isn't working right now :( but I will come back to check it later.

I will be continuing to pray for Ellis, and all of you, through this big transition. What an exciting time this must be!

07/26/2007 - 22:11

TulipGirl:

The video is down for me, too. . .

I am so humbled, Jeanette, by you. I see in you the Mom I want to be--being sensitive to my children, their needs, their strengths. . . I'm really in tears right now, and thankful that God has brought your family into our lives.

07/26/2007 - 22:23

Moriah:

Okay that was the cutest thing ever - picking off a grape and wandering off into the grass. And then LAYING DOWN.

Madeline woulda been right there with him.

And Drew woulda eaten the rest of the grapes.

And, still playing with cars, I see.

07/27/2007 - 01:10

lynnp:

Thanks, JNet.

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This video made me cry.
I pray that Ellis will grow to love the sounds around him & thus find beauty in God's world through music and the voices of his loving parents.

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03/08/2010 - 06:37

Devona:

Oh, he's so sweet. I am going to join the group of teary-eyed-friends. I loved watching him sign, and then see his face when he noticed the sounds.

And of course plopping in the grass!

07/28/2007 - 11:04

RT:

I finally got around to watching the video! It's beautiful, Jeannette... Thanks for sharing it here. Ellis is one of the most adorable children I've ever seen -- his big eyes seem to catch everything. Wow to the process of the CI and activation. I look forward to reading more about it here.

07/30/2007 - 15:41

DeafParent:

Congrats on Ellis's activation! How old is he? My Deaf child just received a CI last spring and she loves it. Hearing aids didn't benefit her at all and she kept pulling them off but now she likes to keep the CI on all the time! She s been using ASL since she was an infant and now she just started AVT. I think both AVT and ASL would be a great combination for her as we'd like her to be bilingual in ASL and spoken English.

Good luck on Ellis's CI journey!

Deaf Parent

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12/26/2009 - 01:09

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02/09/2010 - 00:21

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A young troubled boy named Pete and his guardian dragon Elliott elude the abusive Gogan family, who all use Pete as a slave instead of a loved child. - http://pop-corn-film.info/post/petes-dragon - see Pete's Dragon.

02/11/2010 - 19:08

incosorne:

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02/11/2010 - 20:07

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