Thursday, July 30, 2009

All in a Haircut

I started my day with some crazy, unruly hair.

Some would say it looked like I had a curly mullett going on in the back, but my mom really loved my curls. My dad said it was time for them to go.
I sat pretty still in the chair for the lady cutting my hair, well for a one year old anyway.Oh, dad please, not the slicked back comb over look ... I'm only one!

Bye-bye baby curls and hello big boy look! Mom almost cried. AND I had my first sucker too! I actually liked chewing on the stick better ... then I could get my hands all nice and sticky and rub them all over my face!and before we went home I rode on my first merry-go-round!

I loved it so much I got to ride those horses two times!

Monday, July 27, 2009

Enough Already ... Really

I am about to pull every. last. hair. out of my head. In my last post, I talked about Aiden dissecting his cochlear implants on car rides. Well, it has gone from dissecting them on car rides, to dissecting them at home, to just plain pulling them off ALL THE TIME!

I try VERY hard not to react, and to simply put them back on his head/ears and keep on going ... only to turn around and have them BOTH off his head and usually in his mouth (I so thought we were over the mouthing everything stage). So then, I take them both off for about 10 to 15 minutes, and try again ... only to have them pulled off once again by Mr. Destructo (our new nickname for our "precious" little man) within minutes. When they are on ...

He still responds to the lings (on and off anyway)

He localizes noise better and better (yesterday as the mowers were outside, he pointed to his ear then pointed to the window AND later that day found me as I hid in a dark bathroom calling for him!)

He consistently turns to his name,

He has started to vocalize more in the last week ... like da-da and bye-bye (buh-buh) and a bunch of babble combinations (nabada type stuff)
He has started inflecting his voice like no get out ... from very high squealed screeches to low "da-da" whispers (I think this is hilarious) ... maybe it's the sounds from his screams he's become so accustomed to are scaring him enough to pull off the CIs ... although they truly are music to my ears!

So why, if he seems that he likes to listen and that he is responding, does he constantly pull off his CIs and dissect every.little.part?

Saturday night we all went out to dinner, then Aiden's sister and I went to a late movie to see G-Force 3D (which we both enjoyed). I came home to this on the counter.

Aiden's dad told me the next day that these were the pieces he collected from the car once they got home. What I didn't notice until the next day, as I put the pieces back together, is that a mic cover was still missing. Like I said ... every.little.part. No more CIs in the car ... just too dangerous.

Later the same day, as I was cleaning up the living room, Mr. Destructo was in the kitchen playing in "his" drawers. After a couple minutes of just seeing him playing so nicely with the Tupperware, I went in to check on him again, and low and behold, no CI. At all. So I looked around and found all of it BUT the coil. Thank goodness for back up parts because for the life of me I could not find that coil.

I finally found it later that day here ...

Oh for the love. All I can continue to hope and pray for is that this is a short phase and that it doesn't give me gray hair because the boy's about to wear me out. I feel like I did about a year ago, when Aiden learned to take his hearing aids out. Only difference being he didn't know what he was doing then, but he sure does now. Little stinker. As Nolan's mommy would say, "Don't make me bust out the pilot caps again!"

Oh... and even though we're not set for an audiology appointment for another two months, I have a call into The Listening Center to schedule the next possible appointment. Maybe a mapping adjustment will cure all.

Saturday, July 25, 2009

Two Steps Forward, One Step Back

Two Steps Forward ...
I'll start with the most exciting step forward ... Aiden's saying da-da! The funniest part about it all is he'll go from screaming it to whispering it! I love it! Aiden's daddy loves it even more! Aiden is SUCH the daddy's boy, so it surprised me when he actually said mom first (more like maaaam in a poor pitiful voice). He said mom when we were in Wisconsin and when we got home he would look at his daddy and call him mom too! Hilarious! and I loved every minute of it because both of Aiden's siblings said da-da first. Well, since then, we've been working very hard on da-da and a few days ago, out it came and now that's all he says! (I've tried to capture it on video, but of course he stops saying it and just stares at me). When I tell Aiden "Da-da's coming home", he looks at the door or looks out the window for him. Hopefully we haven't lost mom for da-da!

and our second step forward ...
Well, after all of your emails, comments on my post, and phone call to Val from Cochlear Kids, I talked to both of Aiden's therapists about my concerns and I have hope we're all on the same page. After our conversations, it was agreed upon by all that we will:

  • All work together and communicate weekly regarding each weeks lesson

  • Continue to work on conditioned Ling responses

  • Continue to work on WASP sounds (Word Associations for Syllable Perception - a project through The Listening Center at Johns Hopkins that offers an approach of learning to listen and unerstanding the connection between a sound and its meaning ... very similar to the Learning to Listen sounds)

  • Add additional activity ideas to reach current goals and have homework to go home with after each session

  • Incorporate a "themed" unit for each week or month (or however short/long it needs to be based on Aiden's reception). With this themed unit I discussed how I wanted to incorporate some type of calendar as yet another language tool for Aiden as well as to remind Aiden's dad, brother, and sister what we're working towards. (I was inspired by Ben's mom when I saw this, and was excited to hear Brigg's therapists developed one for their family too! Thanks for sharing Renae! I can't wait to see it!) I figure this way too, we can get books and sing songs all around this particular "theme" (whether it's farm animals, prepositions, firetrucks, a certain routine, a certain sound we're trying to reach ... whatever it may be!)

We all agreed to do a "bubble" theme to start. We'll incorporate a vocabulary list, pictures to hang around the house, books, songs, and activities. I've already found two books I'm going to check out and now I just need to find some songs. Anyone have any good websites with kid's songs/lyrics?

Thank you all for your comments, support, and advice! And for all you out there who said you're looking for ideas too, I'll continue to post on how this works, along with our theme and activities to go along with them. It's all about sharing and getting our babies to hear and speak! I have always voiced my concerns with Aiden's doctors, audiologists, etc. I don't know why I was nervous being upfront (I hate confrontation), but I found that it wasn't confrontation, they were both very open, and it needed to be done ... for my own mind, for our working relationships, but most importantly, for Aiden.

and One Step Back ...
...which I'm about to pull my hair out on! Aiden has reverted to pulling off his coils again, except now, he disects the WHOLE thing. Yep. all the way down to the battery. After searching forever to find two batteries, two coils, and two snug-fits, car rides are going to be silent again. At first he was only doing this in the car, but now he's doing it at home too. I have to keep a constant eye on him. He knows exactly what he's doing too, because he'll look right at me with that sly smile and then fight me when I try to take it from his hand. He's one strong boy.

I'm wondering if his map is off? At his last booth test (in June), they didn't have to make any adjustments to his map and felt he was good to go for six months, which was not good with me, so we agreed on three. Now I'm getting very nervous about even three months and wondering if I should get an appointment just to check. He still has been responsive, has great localization, is on and off with his lings ... Oh I wish he could tell me! I think I'll call tomorrow and schedule that appointment.

Wednesday, July 22, 2009

Looking for Guidance on "This"

I've been debating sometime on whether or not to write about "this", but after having many sleepless nights thinking about "this", I thought who to better get advice from than the moms and dads who are there or who have been there. I've thought and thought about ways to say "this", ways to discuss "this" without sounding offensive to anyone on Aiden's team. We genuinely like our therapists and truly believe they have the same long term goal for Aiden as we do. It's a long journey to reach that ultimate goal, and I, as Aiden's main therapist, need to make sure we, along with Aiden's therapists, are a right fit as a team to reach all our goals ... for Aiden's sake.

I want to also say that we do believe Aiden is progressing along wonderfully. So this isn't about "our son not keeping up with the Jones'" type of post. I whole heartily believe that every child (hearing or not) is different and will get where they need to be when they're ready to get there with the right guidance. Would I like Aiden to be chattering more like others his age? Of course. But I know Aiden is Aiden and we are VERY happy with his progress.

What "this" comes down to is we don't feel we're getting the level of service we're used to when it comes to Aiden's therapy. Just some of the things I've debated and questioned over and over in my mind:

"Are we getting what is typical of Auditory Verbal Therapy and TOD services?"
"Should there be different kinds of homework after each of our sessions?"
"Should we be learning new activities week to week to take home and work with Aiden on?"
"Should our TOD (who is very supportive of our AV approach) and our AVT be in weekly or monthly contact to discuss Aiden's progress/lack of progress to help plan the next weeks/months therapy sessions?"

These are just a few things that go through my mind. The main thing is I do not feel comfortable right now, yet maybe it's me who needs to adjust?!? Maybe it's me who doesn't understand that what we're doing in therapy is typical. I don't know. What we get now, is somewhat different than what we received in Texas though. I always walked away from therapy with new ideas/activities/games, new books to read and songs to sing that all correlated with the Learning to Listen sounds/goal we were working toward, and most importantly, I walked away with a warm and fuzzy feeling of a nice productive day and felt good with the notes I went home with.

I know these are concerns that I have to bring up and discuss with my therapists. I believe that, together as a team, we have to build a foundation of what I expect of them, what they expect of me and if those expectations are not met, then be able to discuss our concerns openly. I do firmly believe that not every therapist is a fit for every student/parent ... and that's okay! But, when it comes to teaching my deaf child how to speak and listen, I strongly believe it is very important to have a solid, comfortable relationship with Aiden's therapists, especially when it's one that could last for years.

I just don't feel like I'm getting the "whole package". I admit, I'm the type of person who needs to understand everything, the type who has the need to always feel a step ahead. I not only want to understand what we're doing NOW, but I want to understand what's next, and then even what's after that. I want to see at least a dimness at the end of tunnel NOW, even though I know that bright light may be years away, just for my own necessity ... for my own warm and fuzzies.

So again, what I'm looking for is guidance from other CI/HOH parents/therapists and what happens in your therapies. I was going to give a synopsis of what we do in therapy, but decided against it. So my questions to you are:
  • What does a typical therapy session "look" like?
  • Do you focus on themed units for x amount of week(s) with activities/games to play, and language to incorporate?
  • Does your TOD and AV (or any private therapist) work together on a themed unit to reach a common short term goal?
  • Do you leave with a certain "something" to focus on for the next week or ? (homework)
  • Do you leave with something new to incorporate into everyday routines?
Thank you in advance for all comments and/or suggestions! Any guidance is greatly appreciated!

Sunday, July 19, 2009

BW Get Together and Hangin' with Lucas

A couple months ago, members from the Yahoo group CI Circle started talking about getting together with CI families in the BW area. What a great day! I got to meet Lucas and his parents; Jodi from An American Mom in Tuscany and her adorables Jordan and Sophia; George and his family, "teacher Marny" (from CICircle) who is such a wonderful resource and teacher for all us CI families, and many more wonderful families ... including one whose daughter is bilaterally implanted and at age three knows TWO languages! It was great too, because my friend Michelle was in town from Texas for her son's activation at Johns Hopkins, so they got to enjoy the festivities as well!

Lucas and Aiden getting into mischief right from the start.

Sean found the cookies!

me, Jodi, and Jen

It was wonderful to finally meet the infamous Jodi! She's just as outgoing and beautiful in person! I wish I could've sat and chatted more with her and Jordan. He had a beautiful accent and I would've loved listening to his perspective on the CI.

Jodi and Jordan
and huge THANKS to Jodi, for getting Batman and Robin to stop by and make an appearance ... in their BATMOBILE!! The kids loved it!

After the early afternoon get together, Lucas' family came back to our place for a play date and a late afternoon BBQ. Lucas' mom and I "met" last June through the blogging world and have always kept in contact through each other's blogs. We have gone through sad and happy times together. I have shed tears of joy, celebrating long distance in Lucas' successes. We have supported each other through our journeys for over a year now and it was absolutely wonderful to finally meet her and give her a huge hug! In our comments, we always said one day we'd drink that "Dutch" beer together (in response to the Welcome to Holland poem) and cheer our boys and their journeys. Well that day had finally come, and although it wasn't exactly Dutch beer, it was just as good!

Lucas' daddy was also with them, and what an amazing man he is! Lucas is a lucky little boy to have such an involved father! He would even stop Aiden to put his CIs back on! I loved it.

Then we have Lucas and Aiden! WOW! What a pair they were! So similar in so many ways ... they both have LVAS, both have blonde hair/blue eyes, both around the same height/weight, but even better ... they are both so outgoing, always smiling, constant noise, into everything, and just ready for fun!

In fact ... they were so on the go, that it was hard to get a good shot of them sitting still together!


"C'mon Aiden ... take my hand, you can do it."

"Did you hear that? I heard that!"

Lucas' smile melted my heart! And that's all he did, was smile! He's such a happy little man and such a great listener! He would blow kisses, say bye-bye and wave, say down and just laugh and laugh! At one point he had Aiden's sister Kailyn tackled on the floor sitting on top of her screaming in delight. Lucas' mom and dad are going to be running right along next to him before too long, because he was doing some great walking too! I kept trying to get Aiden to watch him hoping he would catch on! Maybe next time!

While Aiden and Lucas slept, us adults finally got to sit down and relax. It felt like we've been friends for ages and we can't wait to have another Lucas-Aiden playdate.

Thursday, July 16, 2009

Update via Videos

I haven't been posting a lot lately due to our trip to Wisconsin, plus with summertime here, my kids hog any computer time possible. I have caught some moments of Aiden on video though that make me smile and show a little bit of where he's at in his hearing journey.

I've mentioned before that Aiden was vocalizing what sounds like "Mmmmmaaa" for "more". I finally got it caught on video. On this day, I was feeding Aiden his first cold bowl of cereal ... and he LOVED it.

We try to focus on a select few key phrases each few weeks. The ones we're working on now are,
  • "Knock-knock-knock .... hello (or open)", before we open a door or really, with anything that opens.

  • "SOOOO BIG!" (then throwing hands in the air).

  • "Let's go bye-bye." (then talk about putting on our shoes and shake the car keys, etc, or say "bye-bye" to whoever is leaving and watch them leave.)

  • "Get down please." Because he climbs onto everything ... and for him to vocalize when he wants down from his highchair.

In this video, Aiden had just started throwing his arms up when I'd say, "So big!", but what's even better is the Harley Davidson motorcycle that takes off outside and scares Aiden! You'll see too that he only has on one CI (since I was on vacation and it's inevitable that something WILL break anytime you're on vacation ... and this time it was one of his CIs). Anyway ... here's the video.

We're trying very hard to get Aiden walking. His sister didn't walk until she was 20 months, but we also know that with his hearing loss, he's more focused on learning to hear than learning to walk. PLUS, he does have EVAS, which can cause balance issues. In this video Aiden has learned to walk using his walking toy ... and then in the end gives a show of his silliness and "So Big!".

and last but not least ... Aiden dancing! It's not the best video, but Aiden has started bopping along to music lately and it just melts my heart! We are a HUGE music family ... we all absolutely love belting out some good tunes! One of the things we looked at when picking our CI brand was quality of music. In fact, we even debated going bimodal (one CI and one hearing aid) so Aiden could enjoy the acoustic sounds of music (vs. the digital sound that a CI provides). I've seen many, many videos of CI kids though dancing away, such as our blog friends Thomas, and Lucas or maybe one day he'll create his own songs like our friend Gage does.... and here are Aiden's first dance moves .. to Aretha Franklin's "Respect" ... captured on video.

Aiden has really taken off with his vocalizations this past month. Not much at all we understand, but he's making noise and any noise from him is music to our ears. He screams with laughter as he plays with his brother and sister, fluctuates his vocals, mimics short and long durations, and all in all, is just a completely silly, VERY ACTIVE one year old boy. He makes us smile ALL of the time and we can't be any prouder of our little man.

Monday, July 13, 2009

Wisconsin Part One - The Grandparents

Every year I take the kids to grandma's house in Wisconsin to spend a couple weeks. We always have so much fun! My mom and I have a very close relationship and it is through her that I have acquired my strength and courage. We have been through thick and thin together and without her, I don't know if I'd be the person I am today.
My mom is not only a wonderful mother, but THE ultimate grandma ... in fact, after returning from our trip, I always say, "Gotta beat the grandma out of the kids and get them back in line." They do no wrong in her book! They are the apples of her eye.

In my journey as a mom, and especially with Aiden's deafness, family has been such an important piece of the whole puzzle. Without the support I've received from so much of my family, I don't think I'd be where I am today ... especially from my mom.
I'll never forget calling my mom when I found out Aiden was deaf. We had gone through so much pain already that year with my dad dying and I didn't want her to deal with anymore. I wanted to sound strong. I wanted to protect her from the wounds of my heart. I told her I was okay. But I wasn't. I called her back the next day and cried my eyes out, explaining I wasn't okay. I was a mess and felt lost. And she listened and comforted me in a way that only a mother can. She cried with me. She felt my pain. And to this day she continues to listen and comfort and support and love and share in my bad days, but even more so, Aiden's milestones, the laughter, and the tears of joy.

Aiden's grandma researches and reads and does her best to learn all she can about his world and his therapy. She puts on his CIs and tries her best to troubleshoot and understand everything about them. She constantly narrates to him, gets on the floor and plays with him, takes him for listening walks, and uses an auditory verbal approach without even realizing it. She gets it. It's just amazing how she just gets it.

And the best part about it all ... is that she has this type of relationship with each of my children ... each in their own special way. And each of my children love her to the end of the world and back.

I love you mom! Thanks for being who you are ... not only to me, but even more so to your grandbabies! You'll never cease to amaze me.

Then there are my grandparents. I'd like to say my mom's the best grandma in the world, but I can't compare her to her own mother, my grandma, whom I believe is the icing on the cake (Kailyn's middle name is after my grandma ... Laurel). Her and my grandpa have always been a top priority in my world. I have a very close, special relationship with my grandparents and feel so blessed that my children get to know the two people who have always been so perfect in my eyes. My grandpa is the only grandpa my kids have. They know this and they cherish every part of it.

Ryan and his great-grandpa talking WWII.

Four generations

Both of my grandparents are still going strong and looking great! Every morning Aiden and I would head over for breakfast for interesting conversations and to laugh as my grandparents "talked" back and forth at each other. Loved every minute of it. These are times I will always cherish.

I remember last year tears rolled down as I talked to my grandparents about Aiden being deaf. My grandpa would shake his head and say in a worried voice, "He's going to be okay. He's going to be okay," and continue to tell me about his deaf aunt who read lips and communicated just fine.

When they saw Aiden this year, they were amazed at how far he's come. They asked questions about his "equipment" and were amazed by the technology. They were surprised at how Aiden turned to their voices and how rambunctious he was. Aiden's great grandma said, "I've never seen a baby as smart as he is. Look at him just figure things out!" Aiden made them laugh. He let them see the miracle of hearing through CIs. This year, my grandpa wasn't worried about him and instead said proudly and with a smile, "He's going to go far. He's one helluva kid."

And that he is grandpa. Thanks to you both for being such an important part of our lives! You'll never know just how much you mean to me! I love you both so much and could never ask for better grandparents!