Wednesday, February 13, 2013

Our Journey - Micah and Cochlear Implants - Update

It has been a long difficult road for me. I say me, because everyone around me always seemed to know their decision on something I have had such a difficult time with.
Everyone else seems sure of what is best, or what is right.
I felt alone for a long time, trying to figure out what was best for Micah.
Trying to deal with my fears and issues around such an invasive procedure, and trying to decide if implanting Micah takes anything away from his beautiful Deaf identity and culture.
I researched, met people, dug and dug and dug, and waited for an answer.
I was anti-implant for a long long while, and on the fence for a long while.
As you know I spoke to many families, and learned all I could about Deaf culture and implants.
At one point, I saw another family that we know at the hospital about to implant their little baby girl, and I had another complete panic attack in the hospital, silently, without anyone knowing, and as I walked away from them as they went in to activate their childs implant, I started to sweat, and freak out and tears poured down my face as if they were doing something to harm and change her.
I thought to myself,
one less Deaf mentor.
Then I realized something a few days later, when I saw her again and she was laughing and smiling
and doing great.
That only her parents know, what is best for their child
Only her parents know because they love her and their decision was guided by love. Whatever their decision was. Because they are her parents, and we have to trust our instincts when we make a decision for our child, it is always out of love.
So my feelings changed.
 I know these people, they didn't implant her because they didn't want to learn her language, or culture, they are fluent signers.
They are deeply immersed in Deaf understanding, culture and language, and they didnt want to change her to make life easier on themselves, they just wanted to give her more.
More opportunities.
Not that Deaf people have less opportunity, anyone can do anything, but the set of opportunities for people that have access to sound can be a little different for hearing world and Deaf world.
Not better, not worse, just different.
Last weekned, Teihani and I went to Vegas for my 35th birthday.
We sat down in the Venetian to enjoy some delightful pastries from the Bouchon Bakery and next to us there was a little girl about 2 years old, gleefully singing at the top of her lungs, mimicking the canal singer that was belting out something in Italian while steering the little gondola down
the man-made canal.
Singing and singing and singing while Teihani and I giggled and talked about how she would be a future singer.
I came across a thought, that Micah could have been next to the little girl and not hear the gondola singer, not hear her, not hear us laugh and be in a silent moment, a peaceful beautiful one, but a silent one nonetheless, or in any park surrounded by children, who don't sign or know any ASL. I envisioned him frustrated because trying to communicate with them that he wants to play or be friends, and I won't always be there to advocate at every moment. I know he will be capable of
finding a way. But I want him to feel a part of things, like a part of the groups he encounters.
Not alone.
He needs to be able to meet new friends in the middle.
My prior thoughts about this were that he would be in a Deaf school anyways and that he will always have Deaf friends, but I cannot and will not isolate him and limit his social circles so that he wont feel out of place. I want him to be a part of every kind of social circle and not feel frustrated when he wants to communicate.
I am his Mother and I just want to give him any opportunity I can and I want to support his decision whatever they may be as he grows up. If he ever says, Mom, I dont want or need this implant. I will help him throw it off of a mountain and will not question his decision.
Afterall, no matter what, we can communicate with him using ASL- he is Dead and always will be Deaf, with or without his implant and to us he is perfect, just the way he is.
We are going to give him the opportunity to access sound.
Next step: picking an implant device...

Cochlear? Med-El?

I am going to go and faint now, pardon me.... ugggffmfsmsmms

Micah Jose' Update

Micah Joe is such a funny little guy:) He is full of personality, he is vocal, and his signing is getting better and better each day.

He signs milk, Mom, Dad, want, up, and a few other signs that are emerging and he sometimes mixes sign. I have videos I need to post. He is such a little ball of joy and energy. I am so crazy about this kid and as you can imagine we all are;)

Micah has a new nanny, her name is Hope. He adores her and her boyfriend Casey, they both attend signing class on Mondays and are doing great!

I Loved our other nanny but I just couldnt afford to keep wonderful her.. Which made me sad but Hope is great too and much more affordable. Plus she brings Micah on adventures almost daily and is on the same diet as him so is able to cook things he can eat and knows what to purchase for him to eat when they are out and about.

OH! How could I forget, Micah started walking on New Years Eve!!! Now he is all over the place! He is even running:) He punches his arms about as he walks, it is pretty funny:)

We will find out from two cardiologists if Micahs heart is okay for surgery incase we consider the implant. We are getting two opinions before we decide what to do. I have been told that Childrens specializes in anesthesia for special needs and complications but I have so many questions......

Monday, February 4, 2013

The College Students Brit, Andrew & Stella

I finally got some responses from Deaf college students or college grads after posting an ad about discussing Deaf Culture and the Cochlear Implant.
The meeting went well and these three were incredibly patient with my suuuuuper slow and inaccurate ASL. I wish Rico came to this meeting it was eye opening.

Here are a few things that were helpful to know.

1- Stella has traveled to many countries after she graduated, she volunteered in Nepal and told me people in other countries have soon much patience and are happy to find a way to communicate. She said she had as easy a time as any foreign traveler that doesn't speak the native language in any country they visit. She said she never felt afraid or uncomfortable and met many other Deaf people during her travels.

2- I asked some questions about general safety and they all told me they don't feel like being Deaf makes them more vulnerable in any way and that in fact they are hyper aware and sensitive to their environment. Super alert and are some of the best drivers and bicyclist.

3- Two went to mainstream college where accommodations were made for them in the classroom. They had technology and not takers to assist them.

4- one has an implant the other two don't, she says people don't judge her for having one and that she signs and speaks and that she like to be able to hear music and environmental sounds but that sometimes she wants quiet and will turn it off. She said she is glad she got one but said she does wish she got it when she was a bit younger.

She says many of her friends chose nit to get one, like Stella and Andrew and she understands why.

Andrew told me how strongly he feels about how I'm giving Micah the foundation of ASL and that he thinks I shouldn't sign and speak at the same time. I found that interesting as you hear different opinions on this all the time.

I asked them what I can do to help Micah get the best education and got different answers but what stood out is that I must be a vigilant advocate for him and that the best school is CASD. (already planning on sending him there) and that mainstream school is OK but not the best for him socially.

They also said WA School for the Deaf in Vancouver is no good and behind academically... good to know! This was the best meeting I have had yet and I'm sooo glad I met these guys their info was so valuable!

Friday, February 1, 2013

Someone said to me

Hold your son close, in a moment ofserenity,  calm and quiet and open up your heart to hear his and ask him, "son, what is the right choice for you?"
 Be still, and listen and feel him with all your might and all your heart.
The answer will come to you.