hearing for the first time

i saw this video on TV the other night (can't remember what show). a 29-year-old deaf girl hearing for the first time. her mother-in-law cashed in her pension to pay for her daughter-in-laws implants.

and this morning, i learned that the story continued -- on ellen.  such a beautiful, inspiring story.  and i'm blown away how good the deaf woman's speech is...

the esteem (the device that this woman was implanted with) wasn't available when kiele was implanted.  it is a completely internal device.  kiele has an internal and external portion, which she wears behind her ear (kind of like a large hearing aid).

we love advanced bionics (the makers of kiele's cochlear implant), but having a completely internal device is awesome -- and one of the main reason's why kiele continues to not have her second ear implanted.  technology keeps improving.  hopeful that one day advanced bionics will come out with a fully implantable device.  i think it's only a matter of time -- and maybe by then, kiele will be ready for the surgery and a second implant.

this was kiele's reaction the day her cochlear implant was activated.  not quite as joyful; she was rather confused about the sound she was hearing.

i also found this video, which simulates speech and music through a variety of different channeled cochlear implants.  kiele's implant has 16 channels. it all just blows my mind!

my sweet kiele.  she amazes me each and every day...

IEP update

it's done. it went amazing!! i'm home wanting to scream to other parents how important it is to do your research, know your stuff, be organized and be prepared!! advocate, advocate, advocate!! it definitely paid off today.

last night, i was pretty spun up and decided to waste the night away watching mindless TV instead of spinning my wheels any further doing individualized education program (IEP) prep. so i woke up at 5:30 AM, which gave me about two hours to continue my research and preparation (although i already have two large binders and three ziploc bags of supporting documents and laws gathered over the 11 years of previous IEP prep).

some key tips -- it was HUGE to have the IEP draft in advance. i was able to read and understand the IEP and then write my notes and thoughts directly onto the draft. this was especially important because i wasn't that familiar with the florida IEP outline.

i've been trying to add a communication | socialization goal for kiele for a long time now and so this time, i researched and wrote a goal and objectives that i could present to the team. i also had rehearsed how i was going to introduce the need. while there was some resistance and other suggestions by a couple members of the team at first, i just kept sharing that i wasn't comfortable with this or that...and finally they agreed to make a separate goal.

kiele is going into high school next year and it made no sense to me that a high school representative would not be present at the IEP meeting. i shared with the case manager that if she could not find a rep that could attend and speak on behalf of the school, we would have to reschedule the meeting for another day. i'm SO GRATEFUL that i did that because i met the most amazing person, who gets it and was instrumental in today's IEP success!!  and i now have an awesome contact at the high school (exactly what i needed), who also gave me a number of other important contact names and email addresses.

when your child is old enough, let her attend the IEP meetings. kiele discussed problems and issues she had throughout the year, which resulted in three additional items being added to the IEP. it also alerted the high school rep (and myself) to things she should pay special attention to next year.

i hope this information will help someone out there. parents who have been there and done that have so much to offer and share with others.  you are NOT alone!! one day, i hope to share on a greater level (national conference) but for now, my blog will have to do. if you know of anyone that might benefit from my IEP thoughts, please forward this to them.

as always, feel free to post questions in the comment section and i'll be happy to answer.

i close with this, because this is how i feel at this moment.

or maybe this because i'm so giddy with relief, i almost feel like i could go outside and do a cartwheel right now.

the deaf girl sings

i had to register kiele for school before she returned from her dad's (she spends the summer with him).  kiele has three electives this year and i had to choose them for her.  art was a no-brainer.  then i selected yearbook and theater, after discussing all the options with her.  since she participated in the no limits theater group for deaf | hard of hearing children for three years, i thought theater would be a breeze for kiele. OH MY GOSH!

coleman middle school theater is musical theater.  they just happened to forget the musical part of it when they told me about it and kiele found out on the first day of school.  ummm...yea...musical...like...yea...similar to glee.  their first song, to learn and sing, is jump by van halen.  the glee version.


prior to school starting, kiele said,

i hope i don't have to sing in theater.  i'm so not singing.

she's singing alright!  and the girl can't keep a tune if you paid her (lots of money). but in all seriousness, her dad has a great singing voice so maybe kiele just needs a bit of training...on listening to the tune. and singing.  just maybe...she has a wonderful singing voice like her daddy (and not like her mommy). ;-)

and as her theater teacher said to kiele,

don't worry.  it's going to be great.

when i picked kiele up from school today, one of the first things she shared was,

i think theater is going to be my favorite class this year.

and my heart melted.  i can't help but think about all kiele has and continues to accomplish.  she inspires me beyond words. and pretty much inspires everyone she meets.

all in all, things have gone pretty great.  kiele's school services are in place, including CART.  we (the IEP team) are meeting again in three months to "evaluate how kiele is doing" -- whatever that really means.  hopefully by then, the school staff will fully realize how very much kiele utilizes and needs CART to have equal access to communication.

and there's always something to open my eyes that much more, in regards to what kiele does and does not hear in the classroom...

yesterday, kiele's CART provider told me that kiele was sitting at a table with a few other girls.  the girls were chatting with one another (a conversation that a normal-hearing person would clearly hear).  the CART provider noticed that kiele didn't seem to be hearing them and sent kiele a message (through CART), asking her if she was hearing what the girls were saying.  kiele wasn't and so the CART provider asked kiele if she wanted her to type what they were saying (gossiping).  kiele said no.

the way CART works is...if it's something kiele would hear if she was a normal-hearing child, the transcriber will type it.

it blew me away that kiele couldn't hear the kids talking at her own table--right next to her.  made me a bit sad too, thinking about all the casual conversation that kiele might be missing out on, at school.  but then i refocus and am just so overwhelming grateful that kiele can hear...period. A-MA-ZING!!

so here's to kiele having a most amazing school year and...singing!!  singing proudly, no matter what the tune.  :-)

in closing, sharing a quick snap from yesterday, their first day of school... p.s. none of them were happy about having their picture taken. go figure.

a gift from an angel

do you remember her?  my great friend and an amazing photographer, terrie kellmeyer.  while on vacation the past few days, terrie emailed me how her profoundly hearing impaired baby, poppy, just received a gift from an angel (literally!!) -- sam's loaner hearing aids.  poppy (like her brother and my daughter) will be implanted with a cochlear implant in the the next year and until then, she will wear hearing aids, in case there is any chance of her having access to sound between now and then.  here is what terrie shared --

i took poppy to her audiology appointment yesterday to be fitted for her hearing aids.   after talking with joan and laurie and also the audiologist at children's hospital that did poppy's BAER test, i wasn't too optimistic that she would get any benefit from the aids, as her hearing loss is so profound.  but, my friend that has a son that also has a profound loss was over at the beginning of the week and she said that her son had a huge benefit from the aids, and was able to distinguish some words by the time he was 12 months and received his implants.
joan and laurie had arranged for a pair of loaner aids for me, but now that i was more hopeful that there might be a benefit, i asked joan if they were good quality aids, because i wanted poppy to have every chance to hear as much as possible while we're waiting for her implants.  she looked at me and said "these are VERY good aids" with a funny look on her face and i actually felt silly about even having asked the question...
she was fitted with the aids, and as i was getting ready to leave, joan looks at me and says "these were donated by sam's family........"  both our eyes instantly filled with uncontrollable tears and i was completely and totally overcome with emotion.  there was another family in the room waiting for their appointment who had no idea what was going on other than joan and i were crying over a pair of hearing aids...
i can't tell you how much the aids mean to me and to poppy.  her presence in our lives continues to bring blessings to our family, and now i have a renewed sense of peace that a little piece of sam will live on through her and that she now has her own little angel up in heaven watching over her.....
laurie gave me some covers for the implants that are a little more "girly" than the black and white strips, but i won't have her wear them- she will wear her black and white aids proudly in honor of sam.
i took some photos to share with sam's family.
thank you deb for introducing me to sam through your blog and for all the blessings that have come my way simply through your friendship and your beautiful soul that loves to give to others.
lots of love to you!

here is sam, wearing his new hearing aids (in sep 09).  i saw margot and sam at the audiologist's office, the day sam was fitted with his new hearing aids and i  remember (like it was yesterday) margot sharing with me how excited sam was to have his new hearing aids with zebra covers.

and sam and one of his brothers, in nov 09...our last photo shoot together.

thank you sam for the gifts you continue to share with us -- each and every day.  we miss you but know that you are watching over us from Heaven!

and here are a few photos that terrie took of poppy, wearing sam's gift to her.

love you neil and margot.  and think of you and the boys daily!!  thank you for coming into my life.  xo!!

sometimes i really wish i was a superhero

we can't really relate to a superhero, but we can all identify with the person, who in times of crisis, draws forth some extraordinary quality from within himself and triumphs, but only after a struggle.- adapted from timothy dalton

yesterday, i confirmed to steve that we [the kids and i] were staying here in san diego, while he attended CGSC in KS.  and while not saying much, he nodded with agreement.  this morning, i awoke to a few more blog comments and by 6:30 AM, confirmed that we should go with him to KS and i will make things work for kiele.  i feverishly and passionately completely switched gears and contacted the leavenworth school district, forwarded kiele's IEP, researched houses for sale in KS and ended up in contact with the KS deaf itinerant teacher, who is supposed to be calling kiele's CA deaf itinerant teacher today.  it all seemed to happen in an instant.  without my thinking.  in a blur.

it just happened. just. like. that.

and now, the only thing that is certain is that my husband must think i'm nuts and beyond frustrated with me and my confirmed wishy-washiness.  i've pretty much been in tears every day.  a lump in my throat.  completely sick to my stomach.  this decision sucks.  moving for one year isn't easy for a 7th grader period.  moving for a year is that much more challenging, with a 7th grader with special needs.  i say that and then simultaneously remind myself that i've NEVER made excuses for kiele and her disability...and have always taught her that she is just like everyone else and anything and everything is possible for her.  and well, i guess that should include a one-year move to KS, right?!  damn it...if it were only that easy.  but maybe it is. this, my friends, is what i battle with minute-by-minute, day-by-day.

and then this afternoon, i went to my google reader and read this, by boho girl (one of my favorite blogs)--

Yesterday I walked around quietly and in mindfulness that all of the hard work. All the pain. All of the weeping. All of the tear soaked pillows. All of the confusion. The unanswered questions. The fear. The longing. The aching of a wounded heart. All of it has purpose in my life now. The idea that our pain, our trials are present in our life not only to help mold us into our most beautiful and true selves but to help others do the same, is humbling me to the core.

Sometimes in our pain or in our stories, we feel so isolated and alone. But our stories aren't just about us. Our stories are happening for others to learn from, love from, grow from and with this knowledge, it gives us more purpose. And with this purpose, we have more reason to keep going.

I'm going to keep it simple today and just say that...because that is enough to move mountains in our lives. In my life. Truly.

Today I marinate in the serenade of life purpose.


maybe this is exactly the path i'm supposed to be on--the path i'm meant to pave. could it be that my journey is to open doors in other states for DHH children? am i just scared to knock those doors down and follow that rocky path? am i just preferring to continue down the path that has become comfortable versus taking the rocky road i'm truly meant to be on?

and i do believe that this story goes beyond me, which is why i continue to share, through my own personal struggles and frustrations.  i know that there's others (military families, families with special needs children and who knows who else) that can benefit from these struggles.  and frankly, while i like to sometimes think that i'm supermom and can do it all...i'm not and i can't.  i'm just me...trying to get through life and be the best i can be.

no matter what happens, i promise you this...i will stay strong and i will keep going.  whether in CA or KS, i will draw from within, use my own personal superhero(ish) qualities and be triumphant in the end. i promise you...i will!

thanks boho girl... i thank you for saying exactly what i've been thinking...and trying to say myself (even though our stories are so very different).   love you. let us marinate!

questions...and answers

first i wanted to thank everyone for all the support and encouragement that has come our way. thank you.  thank you.  along with this support, a number of questions have been asked, so i thought i'd answer them below.   ++++++

all in all, this whole thing just fucking sucks. i'm constantly trying to convince myself that this decision is the right one. but it's hard. so very hard. and ultimately, this decision...it ends up being my decision and that weighs very heavy on my shoulders. while steve and i discuss everything, i'm the one that does kiele's educational advocating, etc...steve says that whatever i decide, he fully supports. but in the end, he would really love our family to be together. and i know that. and that makes me very, very sad :-(

often while fighting back tears, these questions flood my mind over an over again-- how does one child's educational needs trump everything else? what about the little one's emotional needs? and their need to be with their daddy? and his need to be with us? am i doing a good enough job as a temporary single mother? what am i doing to steve? is he going to resent me for this decision? is it fair to our family? am i letting my own fear get the best of me? am i letting the system beat me? am i giving up and breaking up my family? what the hell is happening here? what have i done?

i'm still numb. and in denial. every now and then things surface and i well up in tears. but things probably won't really hit me until we pack steve up and head for KS.

this just fucking sucks! and damn it...i hate this!


some questions that have been asked through blog comments and facebook--

What if you home schooled Kiele? Would she still need D-HOH services? this is one question we asked the lawyer: what if i home-schooled kiele. after a lot of information shared by her, she said that she thinks if i home-schooled for that one year, i'd be shooting myself in the foot. there's a lot to this, but she said, ultimately it comes down to...does kiele need the service or not? i shared that the situations are totally different--home-schooling in a quiet, non-distracting environment versus a noisy classroom. she acknowledged that but said that that is not what the district will be looking at--does kiele need the service or not and if home-schooled, kiele would not be using that service.  in the end, i trust the fact that if i home-schooled kiele for that year, i could be hurting the situation for the following move.   how long will he have to stay in KS? steve will be in KS for one year (june to june). he's attending command and general staff college. there's three similar programs and this is the army's version. we were originally supposed to be in RI (the navy's version) and the detailer (assignment person) changed steve's orders to KS because of kiele's education needs, which obviously didn't work out either. the one frustrating thing for me is that this program could be done in correspondence, but there's a certain number of 'in-residence' slots that need to be filled every year, directed by the chief naval officer. steve just happened to get one of these slots.

will you and the kids or steve be able to make trips back and forth on weekends? steve will try and come home every long weekend. the kids and i will probably not travel to KS for weekends, due to the expense of flying the four of us there. we've already concluded...this year is going to be an expensive one for us.

what about the summer? will you be able to spend it together? kiele is going to be spending this summer with her dad. the little ones and i will drive to KS with steve and spend 2-3 weeks with him and then fly back home. after that, we'll probably see him one weekend a month (steve traveling here) unless he happens to have more time off.

'if the military had wanted him to have a family they would have issued him one' is rearing its ugly head. Kansas is close enough to see each other often though, right? obviously, being apart a year on top of the 7 months apart that we just did, is NOT what i wanted. but it's the reality of the military right now. a friend just emailed me words of encouragement and also told me that when her husband gets back from his 6-month deployment, he'll be home for 3 months and then gone again for a year in afghanistan. this is another thing that could possibly happen--steve could get to his next assignment after kansas and have to deploy right away. we just never know. steve has nine years left in the military, which means we could be looking at another four or so deployments (and that's being optimistic). that is the reality of a military family.

What happens after KS? this november, steve will go in front of a board (well his paperwork will), with the potential of making executive officer (XO). this will be the second time he is up for this. the first time, about five guys got screwed--steve was one of them. if steve doesn't make XO this november, my heart will break because i feel like we will have done this all for nothing. all his boxes are checked and he's done everything possible to get selected for XO. i share this because, steve's next assignment greatly depends on whether he is selected for XO or not. so we will know whether steve made XO in december and probably get his next assignment a few months after that.

Where will you go after KS? we really have no idea. we do know that it will be in the US and that it will be near a major medical facility. but where in the US, we really have no idea.

If the school didn't give kiele the service, could you just pay for it yourself? no, we couldn't afford to pay for transcription ourselves. the service is around $30,000 for the one year. but it really boils down to the fact that it's more than the monetary issue--i don't want to give the following location any additional ammunition for keeping transcription from kiele. if we paid for transcription for kiele, i would be giving the following district (after KS) double the ammunition: 1) another state didn't think it was appropriate and 2) the parents are willing to pay for the service themselves.

Can Steve get out of his orders and do something else? i asked steve this question and he doesn't think he can. it's just too late. and like i said before, there is a directed amount of slots that navy EOD must fill and steve just happened to be one of the chosen ones. he also doesn't want to screw himself for XO selection and promotion. this all comes at the sacrifice of our family being together.


kiele's educational needs are complicated to explain, but let me try just a bit.  deaf/hard-of hearing (DHH) is a low incidence disability, meaning that out of the school-aged population, generally less than 1% are DHH children. due to the rarity of DHH, the schools typically struggle to meet the needs of these children in general. they also often lack the knowledge, to make appropriate decisions (although they would never admit to this). this is especially true with the progressiveness of an oral-deaf child. they just don't know what to do with these kids and what is appropriate.

also, kiele is pretty invisible.  most see her and do not even know she is deaf.  and they don't think she needs anything special (beyond the FM system) in the classroom.  they just see it as she hears... and she talks...and she's just like everyone else. but while she does hear, she hears very differently than us and greatly struggles in the classroom setting. the reality is that without the appropriate services in the classroom, kiele cannot hear a single thing, due to how noisy the classroom is.  we don't realize how very noisy a classroom is because we have the ability to filter the background noise, which kiele lacks. kiele's GATE teacher actually put this to a test one day, when he didn't use the FM or transcription and kiele didn't hear a single thing.  scary, huh?  this also was tested and proven in the sound booth.

so let's play out a possible (and probable) KS scenario:

we move to KS and kiele is enrolled in 7th grade.  i meet with the IEP team and they say, we have oral DHH kids and not a single one in KS has transcription.  why is your child any different?  we think another service is comparable and could be provided to kiele instead.  we're going to give that service to kiele, as we believe that is most appropriate (most likely note-taking, which is not comparable to transcription in any way). i would disagree with their decision and we would proceed to mediation, where a third party person sits in with us, while we try to hash things out. i continue to disagree, advocating that transcription is appropriate for kiele, and we move to due process. at that point, we would meet again, this time with our lawyers. if the disagreement continues, we would then proceed to federal court.

i'm not afraid to do this at all; however, the lawyer informed me that if we went to court, it would take well over a year. and 'well over a year' is something that i just will not have in KS.

if we then move to the next assignment (wherever that may be), they would see that KS did not agree with transcription and that very well could possibly provide them additional ammunition for doing the same. and that is what i cannot have happen, as this whole fighting the system thing would start all over again from scratch...in another state.  


as i type this, i again think... what am i doing? i need to just fight!  i can't let them win, before even trying.   i need to advocate. not only for kiele, but for all oral-deaf kids. but it's done. we've told the kids and it's done. i can waffle no more. it just fucking sucks. sorry to keep saying it, but it's the one and only thing that i know is true right now.