A Shared Experience

Last night Christian's school hosted a panel of young adults with hearing loss. Panelists included a bright working Mom with a Cochlear Implant, a high-school senior with bilateral CIs heading to college next year (and who happens to be the head of school's son) and the infamous Josh Swiller. The conversation with the panelists covered everything from how they incorporated today's technology such as iPods and iPads into their lives with their CIs, what their experiences were growing up in mainstreamed schools as children with hearing loss, and what some of their challenges were socially. They spoke of what it REALLY feels like to be mapped, if they REALLY switch between their programs on their processors, if the REALLY take their CIs off to have quiet time. It was a really insightful and inspiring evening.

We had an interesting conversation about the role of American Sign Language, how people with CIs are viewed within the "BIG D" Deaf community, and the role of ASL and the culture of being deaf. I often find myself having to explain to people why we don't use ASL. I think there is a misconception out there that ALL "deaf" people use and need sign language. I also feel that sometimes there may be an expectation by some in the deaf community that despite our choice as a family Christian NEEDS ASL.  I want Christian to learn sign language one day. It will open up new opportunities and expose him to new experiences. Josh had an interesting take on all of this. He suggested that "Rather than deafness being viewed as a culture, it should be viewed as a shared experience". I couldn't agree more.

With all of these debates, I often feel as if I am constantly on the edge of a beautiful pool. From the edge, it's gorgeous. It's vast, and deep, and I know that once I'm in it, I will feel refreshed and relaxed. Before I jump in, I dip my toe in just to test it and I quickly jump back because the gorgeous beautiful pool is actually freezing cold. I step back, and while on the surface it is glistening, the deeper it gets, the murkier the water becomes. I know one day I will take the plunge, but for right now I'm ok enjoying the pool deck with a cocktail in one hand and my Nucleus 5 remote in the other.

Signing Time Comes to Nick Jr!

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)

Good Signing Lily!

Get out the baby book! I am proud to report that Liliana Grace signed her first word yesterday!

While getting a bottle ready for her, big brother Christian stepped up to her high chair and said "Lily, this is how you sign milk!" (and then showed her). She got all excited, turned at me with the bottle in hand, and signed it back!

Signing has always bridged language in our house. In our early days with Christian, we would introduce new vocabulary and concepts by signing AND saying them. While our focus has always been on listening and speaking, signing has always had a place in our family. Signing is like a game now with Christian. Although he communicates completely in spoken english, he still likes to explore new signs. I've never seen signing as a hinderance in his language acquisition. Rather, it's been a complete bridge to spoken language. I'm excited to teach Lily ASL (we're skipping the baby signs, for obvious reasons!), and can't wait to see what she does with it as a hearing baby!

Pick-up Artist at the Grocery Store

Today I took a quick trip up to our local grocery store to pick-up some last minute items to get ready for our trip back home to Detroit (and to get my 4pm fix at the Starbucks in the store). In the self check-out aisle, I saw two young girls signing to one another. So, naturally, I decided to get in on the conversation!

I learned that they were twin sisters, one was hearing and the other deaf. They are 16, babysit TOGETHER, AND THEY LIVE IN MY NEIGHBORHOOD. I knew there was another family with a deaf child in our town, but just haven't been able to make the connection.

JACKPOT!

So, in addition to picking up snacks for the road, I also managed to pick-up some new babysitters. Who are fluent in ASL. What a great opportunity for Christian to work on his signing skills, and to be around a deaf teen. And what a great opportunity for Chuck and I to FINALLY get some dates in!

President Obama's Name Sign

I'm not sure how "official" this is, but it's the sign we'll be using in our house :)

Sign Language as a bridge...

I know I've blogged about this before (forgive me, but I don't have time to find the link back to it at the moment...Christian is eating soup....any Mom knows that toddlers and soup is a gamble), but I wanted to bring it up once again.

I know that there are many different therapy options and choices out there when it comes to teaching our Cochlear Implant kids to listen and speak. I know when I was first researching therapy choices that I came across the notion that using signs in a CI home would only hinder my child's language acquisition. I am SO thankful that my husband and I completely ignored that nonsense. Christian's progress is amazing, and I do attribute much of it to using sign language as a bridge to spoken language.

Since the beginning, Christian has ALWAYS accompanied his signs with the word (or approximation of the word) that corresponds. We've always spoken to him while we signed. With his CI, when we have noticed that he had a bit of a problem grasping or understanding a concept, we sign and speak. And it seems that when he is able to associate a sign with a word, it just CLICKS.

I know every family and every child is different, but I would like to encourage families to explore using sign language to help foster language acquisition. From our experience, it's done nothing but complete help our little guy. Take a look at his spoken language list to the right of this blog...I love to brag about how well he is doing, and I feel like he is proof that sign language DOES NOT hinder language acquisition.

Too Too

Can I just say that I LOVE that my little guy is working on his please and thank-yous! Now when he asks for something, and I give it to him, he says Thank You (well, he says Too Too) and SIGNS it too.

I have to get this on video. I LOVE THIS KID!

Getting Ready for School!

We had such an amazing day yesterday.

We had the opportunity to get together with 5 other families that will be sending their children to the same school that we are sending Christian. We had 7 children in our basement, all with CIs, and 6 of the 7 were all 2 and under. It was definitely my first time seeing so many children with CIs in one place. It was also my first time as a parent that I knew I would be the only one narrating every single second of my kid's life.

In this group of kiddos, was the other little boy who will be in Christian's class (there are 7 hearing children and 2 deaf kids in the class). They immediately got along great, playing a game of Peek-a-Boo with eachother. I was so happy to get together with these parents, many of whom I've only emailed with. I desperately need to keep up with my signing, as this group of Moms were fast and furious with their fingers, and even one was Deaf and signed. This summer I have become a bit rusty...

Father Knows Best...

I was just venting to Chuck this evening about something that has been really weighing on me.

Every so often, our blog will receive comments from people telling me that I am ruining my kids life by giving him a CI, or I'm not being true to his identity by teaching him to speak. I know having this blog out in the public domain opens up our life for comments. When it first started happening, I could deal with it. My skin may have been a bit thicker, and I was ready to go on the defense. Now, when things like that happen, all I want to do is scream at these people and tell them they have no freaking idea what we go through as a family. In the beginning, I didn't really care what these people thought about me and Chuck. Now, it matters to me. It matters because like it or not, we're a part of the deaf community.

I have all these thoughts swirling through my head. Will Christian be accepted into the deaf community? We've tried so hard to expose him to both the hearing and deaf world. Christian is just as deaf as the rest of them. This little boy, without a CI or his aids, can't even hear a jet engine next to him. We're teaching him sign language. What if he choses not to use it? Will he be an outcast?

We want to give Christian the best of both worlds. I want him to have the ability to live in both communities, should he choose. I want to be able to give my son the best. THE BEST.

I was venting this all to Chuck, and he said to me "All that matters is what is good for Christian, and we know what is. People are going to judge us, regardless of what we do. Who cares. We know what is best".

For those of you who know my husband, you know he is a man of few words. But when he does talk, everyone stops and listens.

So, on this Father's Day, I'm thanking God that I have the best husband in the world. He always manages to keep everything in perspective. Christian is SO lucky to have him as his Daddy.

Rockin' The Suburbs...

Chuck and I went out last night and celebrated Christian's activation week by going to see one of my favorite artists of all time, Ben Folds. It was nice to get out and have some "couple time". Our seats were fantastic, about 5 rows from the stage.

I've been to over a dozen Ben concerts since college, however I have to say this one was my favorite. The venue that we saw the show at always has ASL interpreters. I loved watching them sing the songs with their hands, and at several points when I couldn't understand the words in the middle of a jam when he was making up the lyrics, I just glanced at the interpreters and figured it out. Yay! Go Me!

Ben decided to have a little bit of fun with the "Signing Ladies" as he called them, and started singing a jam full of expletives and ridiculously long words--the interpreters were loving it, and they were laughing the whole time. As soon as I find a YouTube video of this, I'll post it.

For us Preppy Mommies of D/HOH kiddos...

I was checking out the Pottery Barn Kids website today (ok, so I check it everyday) and I found these adorable ASL flashcards. I love it when I find cool ASL products on conventional sites like PBK.



Don't be surprised if your kid has a birthday coming up and you get a set of these from the monkey!

Eyes and Ears and Mouth and Nose...

I HAVE TO GET A VIDEO OF THIS!

Christian is now pointing to his body parts and even attempting to say them. When I ask (and of course sign!!!) to him "Where is your Nose?", he points to his. When I ask him "Where are Mommy's Ears?", he sticks his cute little finger right on my ear.

Seriously, he is amazing. How is my profoundly Deaf son who is only aided with ONE aid right now doing this? Prayers are being answered.

xoxoxox

Just some updates

We're heading up to Hopkins tomorrow for what will be our last audiogram in the CI candidacy process. We learned last week that Christian is indeed a candidate, but they wanted us to do another audiogram. This trip tomorrow morning hopefully will be our last for awhile.

Chuck and I decided that we needed to add more to our plate, so we're working on learning some basic CUED SPEECH. Christian is doing PHENOMENAL with his signs and has started cueing basic sounds (like MOO, Uh-oh), so we're definitely going to pursue this as an option. We see it as just one more tool in our toolbox. His preschool that he will end up at uses Cueing in certain situations everyday, so I definitely want him to be exposed to it.

Marielle's Mom has some great information posted on her blog about obtaining visual smoke alarms for D/HOH folks. We called our local firehouse a week or so agoand were able to immediately pick them up without any hassle.

Beautiful

I couldn't wait to share this here on the blog. I think it has an amazing message, regardless if you are Deaf or hearing. D-PAN is doing some wonderful things. I can't wait to share this with Christian when he is a bit older. It makes me so PROUD.

FLOWER

We took in the gorgeous Cherry Blossoms here in DC this weekend, and Christian LOVED them. He was signing FLOWER the whole day. I was able to take a pic of the last part of his sign :)

Mommy!!! FINALLY!

Just a quick note to let everyone know (especially my parents who I know are sick of hearing me talk about this) that Christian FINALLY signed "MOMMY" this evening. If take a look to the right and see his running list of signs, the kid is doing great. There was just something about him signing "Balloon" and not "Mommy" that made me a bit sad. He HAD his "Ma Ma Ma" spoken sounds, that disappeared a couple of months ago. So, this evening, once Daddy got home, and we we practiced walking on the front lawn, the little man FINALLY signed my name. Chuck deserves a big hug and a kiss from me, as I know he's been working very hard on this particular sign and word with Christian. Thanks sweetie!

I'll never, ever, EVER forget this day.

All You Need is Love...Our First Guest Post

I can't reiterate enough just how important a good support system is for families of D/HOH children. I know for my family, especially during the early days of Christian's diagnosis, that our strong, loyal, and close-knit group of family and friends in our support system is what got us through. They held our hands during the uncertainty, prayed for us during the myriad of tests, and listened to us cry over and over again.

Just as Chuck and I are working to understand Christian's hearing loss, our friends and family are as well. They have amazed us with their willingness to learn how to effectively communicate with our son.

I'm proud to include a guest post from one of my closest and dearest friends. She has been on the front-lines of our support team, and I asked her to write about her experience this past year.



Tina was my first friend to have a baby so needless to say, for me Christian was a highly anticipated, very important, special little guy. Christian was only a few months old when I took the summer off from work to study. I was so fortunate that summer as I got to spend a great deal of time with one of my closest friends and sweet Christian. At that time, Christian's diagnosis was unclear and Tina and Chuck were struggling with their own feelings and how they were going to handle Christian's different abilities. As a part of the inner-circle I didn't really know what to do other than to be there for my friends and their sweet boy. Once it was clear that Christian is deaf, Tina and Chuck faced that challenge head-on. I was so amazed and inspired by the strength and courage that my former drinking buddies had as wonderful parents!

As I had never really known anyone who was deaf, I was initially afraid how I would handle this. I mean, Tina had developed this whole support team through her blogging. These are people who actually get what she's talking about. Maybe my words of advice won't matter to her anymore. Would I say something that was offensive and ignorant? Would I use the wrong sign? Would I even learn how to sign?

But then I realized, here's the thing... Christian doesn't know he's different. He only knows his life as it is and as it has been. He's not going to be disappointed if I use the wrong sign! And my friends... Tina and Chuck are just amazing. They have learned sign language so quickly. They are raising Christian to be bi-lingual! He knows ASL and English. What a leg up on most kids his age. And Christian is just the same loveable, laughing, adorable, highly anticipated, very important, special little (well actually he's huge!) guy he always has been.

Tina explained to me their family plan for communicating with Christian and when I thought about it, it makes total sense. When I'm around Christian I try to limit the background noise and speak slowly and clearly to him. That's not really any different than if I were speaking to any child who's learning the proper words for the world around him. I've tried to master the few signs that he already knows. To me, this is really no different than if another friend was trying to teach her child to speak Spanish and thus asked us to say "agua" as well as "water." Once I got over my own insecurities of not being fluent in ASL, I was willing to try using it more. It's not like Tina and Chuck knew ASL before Christian was born! We are all learning together and I am all for learning regardless of the reason.

And then, there it was, my moment of clarity. I've never seen a more beautiful birthday party. All of Tina and Chuck's close friends and family were in their kitchen surrounding Christian with love and well wishes. We all signed Happy Birthday while we sang it! It was an absolutely beautiful moment when I realized - it does take a village. And I'm not going anywhere. If anything I've got a reason to start getting regular mani's if I'm going to be talking with my hands a lot more! And ASL is so fun! Spirit fingers for applause?!! I love it!

Tina's Do's and Don'ts....when it comes to your baby's hearing...

I'm sure most of the readers of this blog are familiar with Glamour Magazine's Do's and Don'ts section. You know, the one where they showcase bad pantylines, hideous color combinations, and high-top shoes. I remember in college, my roomies and I would crack up at some of the pictures. There's always one of a girl coming out of a restroom in a restaurant with her skirt tucked in her undies. And then there were the "Do's", the pictures that would inspire us to lay-off the heavy eyeliner and opt for a more subtle look. Or choose the wide-leg trousers instead of the tight stretchy jeans.

Looking back on our 1st Year of Parenthood, but more specifically, our 1st Year as Parents to a Deaf Child, I really could've used a "Do's and Don't" list. So, in an effort to help the Mommy's and Daddy's who may be going through, I figured I would make my own. Now, I know every family is different. And we all have different strategies...so, take my advice for what it is....advice. And always, always, do what is best for YOUR family.

Here it goes:

Do ask questions if your baby fails all or part of the Newborn Hearing Screen.

When will they repeat the test? Who was it done by? Can I get a second opinion? And most importantly, WHAT DOES THIS MEAN?

Don't let the Newborn Hearing Screen folks sugarcoat the results.

This was our biggest mistake, THAT I STILL REGRET. Since Christian was a C-Section baby, they claimed that his failed test "Was completely normal...he probably just has fluid in his ears". I believed them. I took that hope home, and didn't do the research. We went back two weeks later to find that he failed again...with no fluid in his ears.

Do trust your gut feelings.

Regardless if you are a 1st time parent, or a vetran, you have to trust your instincts. You know your baby better than anyone. We had the TOP ENTs in our area tell us our kid could hear fine after doing some pitchfork tests. I KNEW ALL ALONG that my kid couldn't hear the sound. He was just responding to the MOVEMENTS of the doctor's arms.

Don't feel guilty about shopping around for the best doctors for your kid.

There's no time, or room for worrying about hurting a doctor's feelings. Do what is best for your kid.

Do get the right tests for your baby.

Request and ABR for more clarification if you have to. Have an actual audiologist do it, not just a tech. Be prepared to ask questions.

Don't bang pots and pans next to your 3 week old's bassinet.

Trust me. It does NOTHING but make you worry more. You CAN'T change that they can't hear.

Do prepare yourself for long lagtimes between visits, tests, and results.

It happens. No matter where you live. Just be patient. With that being said, take Marielle's Mom's advice too: You also have to fight, fight, fight to get appointments. Be the mom they fear! Call around until you find somone who can see you within a reasonable time.
The secretary at Hopkins and I got to know eachother very well when I called EVERYDAY for Month for Christian!



Do Your Research, and Keep an Open Mind.

Learn about your child's degree of loss. Where do they fall on the Speech Banana? Learn what the Speech Banana is. Research communication options, and don't RULE ANYTHING OUT. I remember feeling how there was NO WAY that my son would use American Sign Language. He was going to speak, and I believed that ASL was NOT going to help him. I'm glad that my husband and I opened our minds and hearts to all of the communication options available. For our family, we chose to use ASL along with spoken English. It works for us. Research what will work for YOUR family.

Don't OVER RESEARCH.

Googling and WebMding "Profound Hearing Loss" everyday, all day won't help. Watching YouTube videos 3 hours straight about kids with Cochlear Implants wont' either. All you'll do is burn yourself out. Take a Break. I enventually did, only after I lost about a week's worth of sleep.

Do make sure you have your county's Early Intervention team in place...EARLY!

It was a very long road to Christian's diagnosis and amplification, and we really didn't get EI involved as soon as I would've liked. The moment you suspect something isn't quite right, CALL THEM.

Don't let your child's hearing loss DEFINE THEM and YOUR FAMILY.

It took me a long time to stop the never ending chorus of "I have a Deaf Baby. I have a Deaf Baby. I have a Deaf Baby" in my head. For a period of time, I let Christian's hearing loss define him, and I REGRET THAT TOO! It took a good friend to smack me to my senses and help me realize there was so much more to my little man. Sure, he couldn't hear quite as well as us, but other than that he was fine. You'll end up missing the little things, like laughs, giggles, and cuddles.

Do make time for your spouse.

When we actually heard the words "Your Son Is Profoundly Deaf", it rocked my world, and it definitely rocked my marriage. Having a new baby already shakes up your world, then couple that with a kid who may have some special needs....wow, it was rough. It's so hard to not take every waking moment to talk about the baby and how he can't hear, what we're going to do about him not hearing, why he's not hearing, etc. My husband and I FELL INTO THAT TRAP. Take a step back. Remind yourselves why you had your beautiful baby to begin with. Take time for eachother. You need eachother now more than ever.

Don't Blame Yourself

I'm a hearing Mommy to a Deaf Baby. I blamed myself everyday for his hearing loss. I tore myself apart thinking that something that I DID caused this. It broke my heart. Then, one day...it clicked. After a serious amount of prayer, I accepted that Christian's loss was completely out of my control. I did everything right during the pregnancy. It just so happens that we carry a gene that just happened to be passed down to our kid. The sleep you lose blaming yourself isn't worth it. Save your energy for your baby.

Finally, DO FIND SUPPORT!

My husband and I are so lucky to have an amazing family, and a very close group of friends who have been there for us throughout our entire journey. Through their prayers and support, we have been able to stay positive and focus on our family. Let your family and friends know what you need from them. THEY WANT TO HELP.

I found an amazing group of parents at the Listen-Up website who have been such an invaluable resource. We share stories, advice, and most importantly, we support eachother. I STRONGLY urge parents of babies who have been diagnosed with a hearing loss to stop by and visit. It helped us out SO much.

By no means am I an expert when it comes to dealing with Hearing Loss. I certainly have moments everyday where I wonder "Is this right? Am I doing what is right for Christian"? This entire year has been such a learning experience for me. I test my own limits, and patience, just as any other Mom does with young children. I still worry everyday. I learned this year to keep an open mind and an open heart. Most importantly, I learned to let go of the guilt, the fear, and the anger. I learned to enjoy my sweet, silly, and absolutely PERFECT little boy for the child that he is.

Ladies and Gentleman, We have "Ball"

Aunt Jess sent Christian a BALL PIT for his birhtday....needless to say, HE LOVES IT! He's been saying "Ball" for quite a bit, but I haven't really seen a consistent use of the sign up until this past week.

Check out the video I took of him in the pit, saying AND signing BALL!
*disable the music below before playing!*

It's So Much Fun Being One!

It's official. He's no longer my little baby. My sweet little infant, nestled in my arms, dependent on me for everything. No more cute little baby clothes with smocking and ducks. No more SIDS MOVEMENT MONITOR (ok, that's a good thing). No more gummy smiles...no more baby...

He's now a TODDLER. He is One Year Old. And I am still flabbergasted on how freaking fast this year went. He eats whatever we eat as a family. He has MOLARS for Pete's Sake.

We celebrated his 1st Birthday this past weekend, in our usual style, with a "Cupcakes and Cocktails" theme. Our little party had almost 50 people in attendance, an insane amount of alcohol involved, a moonbounce, suprise guests, and lots of cupcakes. We felt so lucky to have our little guy surrounded by our family and friends (who learned how to sign HAPPY BIRTHDAY!!!). His Aunties Natty, Ali, Rezzie, and Jax all spoiled him COMPLETELY ROTTEN, and also helped us pull off the party with ease. Thanks to my folks, who took care of the little details like cleaning my house and taking care of the food, Chuck and I were actually able to enjoy our time with Christian and our guests. I have to say though, the biggest surprise was my Aunt and Uncle from NC showing up and having a cameo appearance. It meant so much to us that they made the trip!

Throughout the party, I couldn't help but look around and FEEL the love that was in our home. With all the ups and downs we've had this year, we have relied alot on our family and friends' strength and prayers. Our entire circle of friends has embraced our new journey that we are on with Christian, understanding that we are on a bit of a different one than they may be on. We are SO lucky...

Christian learned to sign AND speak the word "Hat", just in time for his party. Ok, his spoken "Hat" sounds a bit more like "BPAT", but give the kid a break. He can't even hear the "H" sound. He loved all the attention he was getting, but was not into eatting his cake. He was more into smearing the frosting ALL over the place. Who doesn't love STICKY fingers?!

I made a little movie with the highlights from the party...be sure to disable the music at the bottom before clicking on it.