The CI world keeps getting smaller and smaller. In our little circle back in Michigan, my parents' friend's daughter's little boy (sounds like a line from Ferris Bueller, right?) was born with a severe/profound hearing loss. I've had the pleasure to get to know Shane's Mommy and follow their journey to implantation and now activation. Today was Shane's Activation Day! For those of us who went through it, we know it's a scary, stressful, but exciting and miraculous day. Our entire family is sending hugs, love, and lots of great Ling Sounds to Baby Shane and his entire family as they truly start their CI journey.
Just a little video greeting to Christian's cousin Brynn who turns 3 today! We filmed this after nap today, so he's a bit quiet at first, but warms up! Be sure to disable the music at the right.
Over the past 3 years in our journey with Christian, I've stumbled upon many different films made by Deaf film makers. They've been a wonderful resource for me as a hearing parent to a deaf child. These films often address cultural issues that I wouldn't be aware of since I am still very much an "outsider". Other times, they address different experiences, such as receiving a Cochlear Implant. One of my favorite films is by Adrean Mangiardi. It explores this young man's experience with his second Cochlear Implant, his very real struggles, and triumphs. I watched the movie I Sign and I Live today with an open heart, only to watch the film spread more lies and ignorance about Cochlear Implants, hearing parents to deaf children, the safety of Cochlear Implants, and pretty much the Auditory/Oral philosophy.This film depicts Mothers dropping their babies onto a conveyer belt to go into a Cochlear Implant surgery. It goes as far as to blame the death of an implanted Deaf child on her CI thanks to a brain tumor (blamed on the fact that people with Cochlear Implants cannot receive MRIs...which is another lie). I actually gasped outloud when I saw a Mother of a child that I know from our area who has bilateral CIs cast as the "Mean Speech Therapist". I wonder if she really knows what this film is about. This film is just another one of the Anti-CI propganda films out there that is meant to spread lies and scare people.
I understand why there are parts of the Deaf Community that are terrified of the Cochlear Implant. As parents chose to give their child the opportunity to listen and speak with a CI, spoken English often becomes the primary form of communication within the family and for education. Language ties a culture together, and for the Deaf Community, ASL is a strong-tie. What I have a hard time understanding is why do some in the Deaf Community believe that my little boy who has a profound bilateral hearing loss, who carries the gene that is the most common cause of Deafness in the Western World, who CAN'T HEAR A DARN THING WHEN HIS AMPLIFICATION IS OFF isn't Deaf ENOUGH for them. The Cochlear Implant is not a "cure" to his deafness, rather it is a medical device that has helped him access speech sounds. It's not like with one touch of a button in the morning that my son is hearing.
This film was powerful, but for all the wrong reasons. I hope that in the future the film maker will continue to make films that address cultural issues with the Deaf community, but do his research and homework first before spreading lies.
I can't believe a year has come and gone and our little girl is now 1 year old! She lights up our life in so many ways and brings us so much joy. Our little girl is such a blessing. She came to us at a time when our family needed some brightening, and she honestly makes everything so much more fun. Her gorgeous smile warms our hearts and we love how her silly laugh fills our home everyday. She adores her brother, loves her Kitty Cat, and is such the cuddler.
Here's a little video of Lily's 1st Year. Please disable the music to the right before watching!
Christian is TOTALLY into Spiderman and Batman these days. I heard him playing this morning before sending him off to school and he kept saying "Spiderman is saying I love you with his hands! I love you too Spiderman!". I had no idea what he was talking about until I looked closely at Spidy. His fingers ARE shaped just like the ASL Sign for I love you.
While Christian is a completely oral child and we are committed to the Auditory/Verbal philosophy, we are continuing to expose BOTH our children to sign language. He knows many signs, and can receptive read them. He gets a kick out of learning new ones, and he teaches them to Lily. I hope he one day learns it as a second language, just as other children would learn chinese or spanish.
I managed to catch a little bit of this exchange on video!
(BTW, we have just finished painting the entire upstairs of our home, so please excuse the blue painters tape on our walls!)
*Disable the music on the right before playing the video.
*Be sure to disable the music at the right before watching the video*
Here's a little video from Christmas Eve, as Christian got together Santa's cookies and milk in our basement for St. Nick. Just a perfect example of my silly, sweet, and CHATTERBOX of a little boy.
Our family has LOVED the Signing Time video series since Christian was just a baby, and as an almost 3 year old, Christian knows all the songs and signs that go with them.
I was so excited to learn that Signing Time! music videos will now be on regular rotation on Nick Jr. (formerly known as Noggin). Nick Jr. will air the videos 1-2 times per day. Nick Jr. is home to Christian's favorite TV programs, which include Dora, Max and Ruby, and Little Bear. In between the shows, music videos from children's artists (such as Laurie Berkner, one of our favorites!) are shown in lieu of commercials. We're excited that Rachel, Leah, Alex and Hopkins are going to join the cast!
Here's one of Christian's favorite videos (be sure to disable the music on the player at the right of the screen)
Had to post these videos from our Community Meeting at Christian's school yesterday. About 90% of Christian's school are typically hearing kids, and 10% are kids with hearing loss, many with Cochlear Implants. As I looked around the gym and saw all our CI kids sprinkled around the room, I couldn't help but tear up. They were singing, laughing, and dancing. My heart was so full of joy as I listened to one of the older boys in the school who uses a CI recite a poem with his class of hearing peers perfectly. I am so glad that Christian has been able to attend such a wonderful school.
*Be sure to disable the music on the right before playing **You'll notice that there is an ASL interpreter during the assembly. While Christian's school is an oral program, there are several culturally Deaf families that attend the school who use ASL as their first language.
I grew up in a traditional Catholic home, attended Catholic school, and was raised in a family where our Church was a center of not just my community, but of our family. I never doubted my faith, and always felt firm in my beliefs. That is, until we heard the words "Your son is Deaf". I grieved, and took my anger out on my faith, and on my Lord. I cried and asked God why HE would do this to my family? Why did this happen to us? I mean, if YOU REALLY LOVED ME, WHY would this happen? I became angry. I neglected to look at all the blessings in my life, and instead was so angry with God.
Underneath all my anger, my faith still glimmered. While I was angry, I wasn't ready to abandon my faith. On Christian's activation day, I remember clearly feeling a sense of calm. I remember sitting in the lobby of Johns Hopkins' Listening Center praying to God "Ok, this is all up to you. I'm letting it go, and you can guide me". That day, Christian repeated his first two sounds using his Cochlear Implant. And I knew that God was listening.
Since that day, I've learned to rely on my faith for the tough moments in our journey. At least once a day, I repeat my little prayer "Ok, this is all up to you". I find myself constantly thanking God for all of Christian's success, for my beautiful babies, and for the strength He gives me everyday. What could've broken my faith completely, instead made me a stronger and firmer believer.
I wanted to share this video of Christian singing Jesus Loves Me---most traditional Catholic Hymns are a bit tricky for little ones to learn (I am the Bread of Life, hello?!), but this will do. If this isn't a sign of prayers answered, I don't know what is. (Please disable the music on the right side of the blog)
I really struggled with cross-posting this video. It's been going around on several hearing loss list-servs this week, and I know many of my D/HOH friends and CI Mommas have seen it. This blog is intended to be used as a resource for parents and also as a celebration of the miracle of the Cochlear Implant. I try to include information that is helpful for other families going through their own hearing loss and Cochlear Implant journey. I love sharing our milestones with Christian and also sharing our challenges.
I'm not even going to get into the debate of to implant or not, however this video profoundly impacted me. I felt sick to my stomach watching it. I sobbed. I wept. And all the while, I somehow understood this man's perspective. Unfortunately, hearing parents of deaf babies are misrepresented in the most grotesque way. I have been told in the past by radical members of the Deaf community (a community which I have found in the most part very welcoming) that we were "raping" or son and that we would "go to hell" for implanting him. I've been told that I "stole his identity" and that I am a "horrible parent". All that for giving my child the ability to listen and speak. My son's Cochlear Implant does NOT make him hearing. It helps him listen and speak. My son will ALWAYS be deaf.
I've learned in the past year or so after forming many friendships with deaf adults who use Cochlear Implants that there are members of the Deaf Community who are terrified of LOSING the next generation all together thanks to Cochlear Implants. My son IS the new Deaf generation. He listens. He speaks. He sometimes even signs. And some people are terrified of him and the 1,000s of other children growing up with the miracle of the Cochlear Implant.
Take this video for what it's worth, and watch it to the very end. *And, yes, I still moderate my comments, so if you want to spread hate, do it somewhere else. The last thing new parents of deaf babies need to be exposed to is the hatred and negativity of the very few radicals who lurk on these blogs.
While I strive for every moment of every day to be a language opportunity for Christian, we still have set "therapy" time. Yesterday, we were working on the initial /f/ sound using the Speech Steps worksheets.
Check out this video I took of him. I intended it to just be a reference point for us to use later to chart his progress, but it showcases my little man's silly personality AND his amazing progress!
*please turn down the music to the right* *To my D/HOH friends that use captions, I'm working on it! The program I use was disabled last night*
*I'll get it captioned as soon as I have a moment to actually sit. In the meantime, enjoy Christian talking about his favorite band, Dave Matthews Band*
So, Christian is now obsessed with teaching Lily all of his "Baby Signs". We use signs in our house when his implant is off, like in the bath, or at the park when he goes down the slide. While we're still an AVT family, we have found that signs still have a place in our home!
Here's a video (I will caption it later!) of him teaching Lily (be sure to disable the music at your right)
I haven't had a chance to caption this, but had to share! Despite the traffic, security issues, and influx of tourists, we are so excited for this historic day!
Christian gave me my early Christmas present this week...check out this AMAZING video of my little man.. (don't forget to disable the music at the right before playing...you won't want to miss a single word this kid says!)
You'll notice that he also is attempting to sign I-LOVE-YOU with his little hands. GO CHRISTIAN GO!
