Wednesday, October 29, 2008

He Loves To Listen!

Are we doing the right thing???? This has been a huge question in our minds ... recently. There was no doubt in the very beginning when we were told Aiden would probably not have any response with his hearing aids. Since then, we have seen Aiden respond so well with his hearing aids. But, are they good enough? Will they give him what he needs to hear and acquire the sounds of speech needed to be successful in the hearing/speaking world we so want him to be a part of? These questions flood our minds every day. Every day we wonder are we doing the right thing for our baby.

Before we left Texas, they turned up his aids ... he's getting bigger and therefore can take on more. He responded ... he definitely responded. He's been responding and today in the sound booth he proved it ... he loves to hear. He didn't only respond to spoken language, but to what I call the boring "static/monotone" sounds. He responded to the "mmmm's", to the "ahhhhh's", and even to the "shhhh's". He showed responses not only through the infamous "binky" tests, but TURNED HIS HEAD TO ALL THE SOUNDS! Continuous responses at 50 to 60 db. Flat line ... all the way across all frequencies. His audiogram shows pretty much a flat line between 50-60db. My baby is definitely hearing something and all I could do was smile and cry.

All the countless hours of ...
...him pulling his hearing aids out and us putting them back in,
...nonstop talk and singing and narration,
...of making sure we talk to him within his "hearing bubble", him every bit of auditory information we can.

All the countless hours we just want to STOP talking, but keep on going ... he is responding ... and every minute of our time has been worth it. The soundbooth confirms what we see at home, but always question, was that a response?!? Aiden wants to hear ... his auditory nerve has such integrity, and we are doing something right!

So we've questioned ...
Does he still need cochlear implants?
Will hearing aids be enough?
Will his hearing keep getting better or will it get worse?
Can he learn to communicate in a hearing/speaking world that we want him to be a part of with just his hearing aids?
Should we implant one ear or two?
How could he have no response at 120 db unaided six months ago, yet test so much higher with hearing aids?

Aiden loves to hear ... his brain is getting ready for listening, and he loves it.
We know that Aiden will not receive all the sounds of speech with just his hearing aids. Could he learn to speak with just his aids? Probably. Will it be at the same level he would get from implants? Not at all. We don't want him to struggle any more than he has to already. Our goal is for him to be mainstreamed by kinder. or first grade and feel the least bit of difference possible from his peers. Either way, Aiden will always have to wear devices on his ears, whether it is hearing aids or cochlear implants. At his hearing levels, we know that the implant will give him opportunities to so many more sounds, at an age that is imperative to development for spoken language. We know in our hearts what the right answer is.

We have gone round and round with questions in our mind if we are doing the right thing for Aiden. This is a choice we are making for him, yet a choice I believe will benefit him for the rest of his life. We are empowering him with the fullest potential to hear and speak. We feel in our hearts that this is the route to take. Aiden wants to listen ... he hears and speaks to us everyday! He shows us he wants more. He shows us he is ready to take it all in. That he is ready.

I can't keep dwelling on the question to implant or not. I've questioned myself, I've done my research, asked my million and one mom questions to the professionals, and have done my own "mommy diagnosis" with my son. We're moving forward ... and there's no doubt, he's going to continue to amaze us each step of the way!

Hello Maryland!

Woo Hoo! We made it. We're in Maryland. The trip went very well. I followed my husband for 1,430 miles (22 hours not including any potty breaks, rest stops, bad traffic, or overnight stays) while he drove a 26-foot U-Haul pulling the biggest U-Haul trailer. He had all of our belongings ... I had two out of three of our kids, the two cats, luggage, and the plasma tv. What a trip! The kids did GREAT, the cats did GREAT, our belongings did GREAT (thanks to the great packing of yours truly :), mom and dad ... enjoyed the trip needless to say of the much lack of sleep from all the packing, appointments, and cleaning we did right before the trip! But ... we made it and we're so happy we're here!

It was very emotional saying good-byes. We lived there together for over 11 years, me, since I was in 8th grade, excluding my college years in Michigan. My kids knew nothing but the neighborhood they grew up in, they're born Texans. I've always wanted to get the hell out of Texas and back up north, but I didn't think it'd be that hard leaving; good-byes were hard, very hard ... but it does feel great being back to four seasons, back to the crisp, fresh, fall air, back to to the seasons.

We have had so much going on in less than one year. So many changes. My dad's sickness and death, Aiden's birth and diagnosis of being deaf, all the shit my husband had to put up with at his old job for doing the morally right thing and then getting a new job ... all of this within a matter of 5 months. We were meant to be here, we prayed to start anew. My mom says we're starting a new chapter, I say we're starting a whole new book. We're on to a sequel, bringing all the good with us, leaving all the bad behind. CHEERS to a new beginning ... CHEERS to what is yet to come.

Tuesday, October 14, 2008

Maybe ... Just Maybe

Aiden and I had a VERY long night last night. My boy is always such a happy baby ... never fusses, rarely cries, and is just a happy-go-with-the-flow enjoying life baby. He goes to bed, with no problems, between 7pm and 7:30pm and usually sleeps until 5am.


He just would not stop crying and nothing I did consoled my baby. He seemed to want a bottle, but would cry as he drank it, and when he wanted NOTHING to do with his binky, I knew he truly felt like crap. This went on from 7pm until 4am. No fever (in fact I was worried he felt "too cool"), no pulling at the ears, no stuffiness cold like symptoms ... I think it was a combo between teeth & gas.

As I walked with him, rocked him, massaged him, wiped his face down, I couldn't help but think, if he could only hear his mommy's voice sing to him, MAYBE, JUST MAYBE it would help that much more. I know he knows no difference, but I do. It worked with my other two ... it just did.

So I put my lips on his head and hummed, I laid him on my chest and sang ... and for awhile it would work, and I'd get him to sleep. Then he'd wake up and we'd start all over again. He finally crashed around 4am and he slept, his head laying on my chest, my lips pressed gently on his head, humming sweet nothings.

Thursday, October 9, 2008

Oh What a Walk Can Do!

I took Aiden on a long walk tonight. Just the two of us. As I walked, I MADE myself aware of all the different noises going on around us. Noises I would have never really thought twice of, or even realized I heard. Sounds I usually completely ignore, not realizing any importance about them - until I had a deaf child.

Dogs barking
Lawn mowers and trimmers
Children laughing
Cars driving by
Airplanes overhead
Moms & dad yelling for their kids
Birds screeching out
Leaves rustling as the wind blows

I paid extra close attention to the sounds I heard, so I could point each and every one of them out to Aiden. We'd stop and I'd show him, pulling him out of his stroller just to see. One dog wouldn't quit barking by the fence, but I wasn't about to move on until my boy saw what was making all this noise (the dog had those doggy windows, so we could see him).

Whether Aiden actually heard it or not, I don't know, but just in case, just by chance that he did, he was going to see what was making that noise!

"Aiden, listen. Dog. It's a dog barking. RRRrrufff, rrrufff. Dog Aiden. That dog is barking at Aiden and mommy."

He did look. He seemed more interested though in his nutso mom, but he'd stop, and he'd look. At the cars, at the dog, at the cat walking down the street (which of course I had to make the sounds for too).

Half way through the walk I had one of those damn reality checks (hate these) ... my baby is deaf. That "B" in my mind reminding me of what I already know,

"Yep Tam ... he's deaf and there's a good chance he's not hearing any of these sounds you're pointing out."

As I yelled back at that "B" to get out of my head, I reminded myself,

"BUT DON'T STOP pointing them out! They mean something. They have to."

As I continued on our walk, I thought about all of the hard work we do with Aiden now, to stimulate that auditory brain, and how we'll have to somewhat start over once he gets his CIs , because even if he's getting any bit of sound now, it will sound different once he's implanted.

I've had many people make the comment about Aiden getting his CIs and how he'll be hearing just like "all of us with no problem what so ever before you know it!". You'd think ... I thought the same thing at first. But it's just not that simple. We will have to train Aiden about


It won't be easy. It won't be just a dog, or just a flower, or just a car. Every adjective, every verb, every adverb, every grammatical way I can to describe what he hears and what he sees, will be well worth it. Every moment will become a teachable one.

I know one day soon enough, I'll take a walk with my son and he'll be saying to me, "Mommy, look dog, rrrufff ruff. I want a dog mommy, ppplllleeease?!?"

I can't wait for this day!

Tuesday, October 7, 2008

Siblings of Deaf/HOH Children

We are always very open with our two older hearing children in discussing their little bro's deaf world; always sitting down with them to discuss what it means to be deaf, how they can help Aiden, and how they are feeling.

I'll never forget the day we told them about Aiden being deaf. We ordered pizza. After dinner, we asked them if they knew what it meant to be deaf. Ryan, at age 11, knew it meant you couldn't hear, but didn't realize how hard it was to learn to speak as well. Kailyn, at age 7, had no clue. So we explained it, as simple as we could.

And the conversations, at different times, went on into teaching them how a deaf child can learn to hear and speak, cochlear implants, hearing aids, therapy, etc. We have always been very open with our kids about their brother. In fact, as soon as we started therapy, we got them involved, we wanted them to feel a part of it all, as if they were helping him just as much as we were. Yet, at the same time, we did not want to overwhelm them with Aiden, Aiden, Aiden.

I noticed, when Aiden was about 3 months old, that I was working with him and not spending as much time with my other two. I noticed, I was CONSTANTLY researching and reading everything I could about being deaf. I had to know it all NOW. I had to take a step back though and remember, my two older "hearing" kids needed me too. This was just as new to them as it was to me. We were all living in a new kinda world.

Soon after this defining moment, Ryan asked us some questions about Aiden.

"How much will Aiden's hearing aids cost?"
"How much are ALL OF THESE APPOINTMENTS Aiden has to go to?"
"How much are Aiden's CIs going to cost?"

All of these questions about money, and when he asked, he acted like it was a "no big deal, just a little curious" type of thing. But, I'm his mom. I knew better.

ONE, I did not want my oldest son to have any remorse towards his younger brother; and TWO, I learned when my dad was dying, that preteens often worry whether or not they are going to be taken care; especially when there is a big change in their life. Which, this was. To us all. We constantly reassure both of our kids that they will be taken care of, that we will never let anything happen to them, that we will do everything in our power to make sure they will be okay!

Then there's Kailyn. She's recently turned 8 and is just in love with her brother. What I found with her is to get her involved as much as possible! During the summer I brought her to therapy with me (I'd try to get Ryan to go, to no avail, but did not want to "make" him). Kailyn loves learning how to work with Aiden - it makes her feel important - and she does a wonderful job with him!

At one point, Mike was doing a (non-learning to listen) airplane sound, and Kailyn stopped and scolded him, "Dad, that is not the sound for the airplane! The airplane sound is ahhhhhh, ahhhhh."


Jodi, an absolutely amazing mom, is helping Hands & Voices complete a study on siblings of deaf/hoh kids. I asked Ryan & Kailyn these questions she's asking of you, and here are their responses:

Question 1 - What do you tell your friends about Aiden's deafness?
Ryan - "I don't. I don't think it's a big deal to announce it because it's just who he is."
Kailyn - "This is my baby brother, his name is Aiden and he has "earing" aids so he can hear. He keeps getting new ear molds and he has two hats so he can't grab his "earing" aids out."

Question 2 - What's the weirdest question you've ever been asked about Aiden being deaf?
Ryan - "My friends will ask if he's deaf, I tell them yep and that he's getting cochlear implants, which will help him hear, and they don't really say anything else."
Kailyn - "Friends ask me if he can hear with those things in his ears."

Question 3 - If you could change one think about your brother, or his deafness, what would it be?
Ryan - "His chubbiness." (I told him babies are supposed to be chubby) "Not like that fat little man." (I asked him if he'd change him being deaf) - "Yeah, I guess. I wish he could hear, but I know he will with cochlear implants. It doesn't bother me he's deaf."
Kailyn - "I like him the way he is, but not getting "earing" aids. They bug me with all that noise and I just don't want him to have them anymore. I wish he could hear without his "earing" aids."

I also asked them if there is anything about his deafness that bothers them:
Ryan - "It's just an inconvenience" (I got a little worried at this point and asked why) "because it's harder to mess with him and tell him I love him." (not so worried anymore) ; )
Kailyn was done at this point ...

If you'd like to help Jodi out with this survey, visit her here to learn details, or respond to these question in my comments, and I'll get them to her. Again, balance between hearing siblings and a deaf/hoh sibling is SO IMPORTANT!

Oh, and the last thing I wanted to mention was the recent sem
inar we went to. A local parent support group, along with the Dallas Callier Center, supported a seminar for hearing kids and their deaf/hoh siblings. Our kids got to meet other kids who had cochlear implants, simulate deafness, simulate different tests their deaf/hoh sibling experience, and most importantly, realize their deaf/hoh brother/sister was going to do GREAT!!

A 6 year old girl who had bilateral CI's came up to my husband (as he was holding Aiden) and asked him if Aiden was deaf. Mike said yes, and the little girl asked, "Well, where are his ears then?" which Mike explained since Aiden was sleeping, he didn't have them on. She proceeded to talk to him and we were both AMAZED! My kids were AMAZED! This was all of our first day, of many yet to come, around many kids with CI's, and their siblings. I'm still taken aback!

My kids ABSOLUTELY LOVED this experience! If you have any questions about this simulation, let me know!

Wednesday, October 1, 2008

Six Months Old!

Aiden is six months! I can't believe how fast this time has gone! Where has it gone??!!?? I feel like I just had my binky boy yesterday! Well, he officially turned six months on Sept. 17th, but I just haven't had time to post about it with everything in transition.

Here is a video I put together to look back at the last six months and where we've come. Remembering back, I felt so lost, so scared, so angry. That's changed. A little anyway. I've definitely come to terms with my binky boy's hearing loss and have taken an active stance in finding out all I can about it. I know now that I want to help other people. I know I don't want other moms feeling as lost and helpless as I did. I know there are a lot of families out there who need to be educated how important follow up tests really are. I know I want to make a difference. I know I will do everything in my power to provide Aiden a hearing world. I'm still scared, scared for the days when he cries to me, when he's sad about being "different", when he's scared. But I know too, at that time, I will be strong for my boy, just like I am today. And although I may be shattering with grief inside at these times, he will never know it. He is my strength, and I can only hope I will be his.