11 Months and We Have Our First Tooth

Mikaela turned 11 months yesterday and tonight as she was laughing up a storm after her bath, I thought....let's see about her teeth. Lo and behold!! The bottom right has finally cut through the gum! The left one is a 1/2 step behind and will cut through soon! Join me in congratulating Mikaela on a milestone!

Still thinking over the CI choice. Leaning towards Cochlear brand, but holding off on the final decision until we talk to the surgeon. I know they cannot officially recommend one brand over another, but I am sure by answering our questions, we may learn more and close the deal - so to speak.

I also plan to talk to parents that chose each brand and ask what led them to their decision. I realize each company is outstanding and I cannot make a 'wrong' choice! That is a relief in and of itself.

Well, I'm really tired tonight. Too much politics and the candidates are exhausting me! Have a wonderful 'rest of your weekend'. ...And hug and kiss your kiddos! They grow way too fast.

My baby is audiologically a CI candidate

Well, after our third visit to the audiologist, for the hearing portion of meeting CI credentials, it is confirmed that Mikaela - audiologically - is a cochlear implant candidate. (I think she is in all the other criteria as well but have to receive confirmation from the CI team.) As you may recall, the last time she was too tired to respond consistently and the time prior to that, she had a fever and wasn't responding consistently. The hearing aids just don't give her access to speech. This news is bittersweet for me. Those of you who know me know I am struggling with the decision to implant or not. I was really hoping against hope that the hearing aids would miraculously give her enough benefit.

Only because I am a hearing individual with no experience in the Deaf community, do I want her to hear. In my view, having access to speech will give my daughter more opportunities than if she didn't have access to speech. Because I only know one Deaf man (whom I actually met just once) and his hearing wife and beautiful daughter can I say I have any exposure at all to anyone who is deaf. They are a great family and willing to help me and Mikaela in any way we need with our questions and connections about the Deaf community and Deaf culture. I am very interested in learning. I want to get involved and stay involved for Mikaela's benefit. Again, I am learning ASL and teaching Juliana. Mikaela's receptive sign language is showing growth. I am working on being more consistent with all I know to make sure Mikaela is shown early and often! Yet, I am not signing everything I say (because I don't know how and I haven't made it a habit yet) so Mikaela is left out of a lot of family conversations. Even if I did sign what I am saying, it wouldn't be true ASL because I'd be signing in English word order. I am working on making a concerted effort to deepen my knowledge and demonstrate more for her.

In favor of a CI: It is my belief that it will be 'easier' for her in everyday life if she can hear. Let's take the example I have noted before. Let's play.... Let's say Mikaela doesn't get an implant. In my little story, she is a minor and she requires an interpreter (me) where ever we go. Stores, play dates, even ChuckECheese for Pete's sake! We may be at a playground and how will she interact with a little friend? ....Let's say we are with family, everything will have to be interpreted by me for our hearing relatives. Sure, they may learn some phrases, but will they really be able to learn the language enough to sign as they speak so Mikaela can be part of every conversation? Let's say she wants to go play with her cousins, they definitely don't know ASL and how will they play? I mean fully play. Let's say she's older, a teen perhaps...she's annoyed with me or even her sister and really wants to confide in a cousin...how can she? Maybe she's having boy trouble or friend trouble, who can she confide in? Sure, she will have great friends in the Deaf community from her school, and other Deaf connections....but she will not be as bonded with her own family. I believe blood is thicker than water by far. I have had friends whom I believed we would be close as sisters forever, simply walk out of my life without looking back. Family won't do that. My daughter deserves to be as connected and bonded with her family as she possibly can be. I read a blog from one deaf individual who is now in his later years. He originally was opposed to CIs in children. After reading the account of his life, he sees the benefits now and is in favor of them. The chord that struck me most as he recounted the years, was that he was sent to a residential school for the deaf, and while he was away, his family learned ASL a bit, but never really well. When he came home, he said he felt like the family dog. Watching everything, but included in very little. I never want Mikaela to feel that way.

Now, my hesitations on the CI....IT'S SURGERY AND NOT MEDICALLY NECESSARY! Yes, it is medically necessary if she wants to HEAR. But it is not a life threatening situation. Would she have a wonderful life without hearing - yes! Although I don't know from personal experience, I know that many Deaf people are thrilled with their life just as it is. God sent me a perfect baby. I don't want to do anything to interfere with her perfection. There is more emotional turmoil going on, but I just can't seem to voice it. Not concisely or clearly.

Anyhow. I am moving forward with YES, we want the surgery. Kurt and I will make a list of questions for the doctor. ...and maybe some for my friend involved in the Deaf community.

Someone Different

Below is taken from Dr. Dan Gottlieb's website and it shares incredible insight that I wanted to capture here. Of course deafness is considered the 'invisible disability', so Mikaela may not encounter some of the stares...but she may experience some of the feelings. It made me examine myself. Hope it moves you too. (Oh, by the way, if you don't know who Dan Gottieb is, check out the rest of his website.)

http://www.drdangottlieb.com/col_04_08.htm

Posted on Mon, April 28, 2008
Encountering someone different
By Dan Gottlieb

What is your first instinct when you see someone who is disfigured,deformed or just plain different? To look away? To react by rote? Many years ago, waiting to meet a colleague, I was sitting in the lobby of Hahnemann Hospital, my briefcase on my lap, drinking a cup of coffee - when a woman in an obvious hurry walked by and put a dollar in my cup! She clearly didn't see a man in a wheelchair. She sawsomeone who was "different," and responded quickly. I tell this story frequently because it teaches us so much about ourselves. Our brains are hardwired to react instantly to members of our species who don't look or behave the way they "should." When we encounter someone with a disfigured body or acting in ways that don't fit the expected norm, we feel distress. It happens so fast that we don't even know what we're feeling. Our first instinct, however, is to find a way to diminish our distress. That's why, when I go into a restaurant, the hostess will often ask my companion, "Where would he like to sit?" The hostess makes eye contact with my companion in order to lessen the stress of facing someone who is "different." Sometimes our reaction to the distress takes the form of anger or harsh judgment. Parents of children on the autism spectrum tell me that when their child becomes agitated in a public place, they frequently get critical looks or even patronizing comments. The reason: Affixing blame can help diminish distress caused by the unusual behavior of others. It makes the world feel more orderly. There is a price, however, and not only for the person who is judged or ignored. Stress is a symptom; diminishing it by judging, criticizing or ignoring others is merely a form of symptom relief, like having a stiff drink.

So what can we do? Since stress is hardwired, allow yourself to simply experience the stressful feelings without trying to avoid them. Make eye contact if you can. (This gets easier with practice, as anyone who works with disabled people can tell you.) I have always believed that if you look in someone's eyes, you can find their humanity - and in that process, you can learn more about your own. If that woman in Hahnemann's lobby had been able to look into my eyes, she would have seen a fellow human, a quadriplegic whoin fact has a great deal in common with her.

And one other thing about those of us who look or act different. My grandson Sam, who is on the autism spectrum, is almost 8 years old. He is generally doing well in first grade but still struggles in some areas. Recently he had some classwork that he didn't understand. Embarrassed about his difficulty, he took his book home without asking his teacher. When he spoke to his mother, not only was he embarrassed about not understanding the homework, he also felt guilty about taking the book home. In order to assuage Sam's guilt, his mom explained: "Sam, they have a special piece of paper at school that says when you have trouble with your work, you can ask the teacher and she will give you extra help. And if you still have trouble, she will call me and I will help also. "But Sam didn't feel better. He began to cry: "Mommy, I don't want a special piece of paper."

Sam speaks for most everyone who is "different." None of us really wants that special piece of paper.

Mommy Voice

Mikaela has really been doing well with her GI stuff! She is picky towards new tastes, but gratefully she has been keeping things down very well. (The past three weeks anyway!) Even tonight, she spit up a bit with a burp, but overall, I am very happy.

The past few days, since she signed her first sign, my mommy voice has been telling me something. It seems to me that she really isn't getting much speech with her hearing aids. Yes, she hears sound when we talk, but it seems to me that her word discrimination would be very poor - if you could test it at this time. :-) I think she hears vowels, but I am doubtful that she hears many consonants. I realize that I have no formal training in this area and I could be entirely wrong, but it is just my mommy voice.

The only sounds she makes is "aaaah" and the nasal sound "ng". We have been saying 'b' to her and of course ma ma and da da since the day she got her hearing aids. She has never once even accidentally babbled these sounds. I think one time she was making the 'ng' sound and she opened her mouth to teethe on something and it sounded like 'ma'. I know I am supposed to "take it" and celebrate it, but I am pretty certain it was a fluke.

So for her sake, I am really going to ramp up my ASL. I told Juliana tonight that we have to sign everything we say, so Mikaela can be part of the conversation. This will really shed a light on how much I need to learn! But hey...it's a second language for crying out loud. No one learns it over night. Too bad Rosetta Stone doesn't have a program! I'd buy it! :-)

First Sign????????

Okay, I'm a little slow! I am pretty sure Mikaela's first sign is 'light'. She looks at the light and puts her arm over her head and spreads her fingers with her palm facing her! It is soooooo cute! She has been doing it for quite some time and I am finally putting it together!

So we are sitting at the kitchen table (well, she in her highchair) and I kept asking her, "where's the light?" (Signing and speaking, since her aids were in). She would consistently look at the light in the kitchen and do the sign then look to the light in the family room and do the sign! So precious! I wish you all could be here to see her!

I am so happy! I suppose receptive is finally moving towards expressive!

(10 months, two weeks and one day)

To You, My Sisters

This has been circulating on many of the different list servs to which I belong and I want to capture it here. If you don't know "Welcome to Holland" or "The Special Mother", let me know and I will post it here or email it to you privately if you want.


To You, My Sisters
by Maureen K. Higgins

Many of you I have never even met face to face, butI've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.

Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversityof our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as"special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know"the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology. We have taken on our insurance companies and schoolboards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland " and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and ablazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touch downs and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.