in 1997, i had my first child. she was beautiful. my treasure. my everything. at four months, i thought kiele was deaf (she didn't respond to sounds) so i requested to have her hearing tested (in 1997, they didn't have the newborn screen; it was implemented six months after kiele was born). they did an ABR on her and she failed. she failed because she wasn't completely asleep, they told me. in the following months, she seemed to respond like any other baby and kiele was never tested again. even today, i live with the guilt of this. i was a nurse. i should have known better. she should have been followed up.

at six months, kiele was diagnosed with plagiocephaly (flattening of her head) and had to wear a DOC band (helmet) for four months. no big deal...just a little bump in the road and lots of trips from tucson to phoenix. and quite a few stares (DOC bands weren't as common in 1997).

as a toddler, she did great. her developmental and speech/language skills progressed normally, according to *my books*. i thought it was so cute how instead of saying "shhh", kiele would blow on her finger. and she loved to play with the volume of the TV. she would turn it blasting. i would turn it to regular volume. we'd go back and forth until kiele eventually turned the volume all the way off. just the normal toddler stuff...so i thought.

it wasn't until kiele had a terrible virus and couldn't stop vomitting. my friend, laurie valdez (a pediatric nurse practitioner that i worked with in the davis-monthan family practice clinic), offered to come in on the weekend (when the clinic was closed) to hydrate kiele. we sat there for hours. she, kiele and i, just talked and talked (well, we talked; kiele laid there). then she said, do you think kiele's talking okay? i remember the words like it was yesterday. but it's not; it was seven years ago. yea, i think she's talking fine. she's hitting all the landmarks. laurie replied, why don't we send her for a speech eval anyways. okay, i said. shoot, i didn't care. it wouldn't hurt, right? so the evening went on, casual conversation between friends. that night, kiele ended up being admitted to the hospital with severe dehydration and a bilateral ear infection.

a few weeks later, kiele (age 2 1/2), had her speech evaluation and she passed. she's not fully annunciating her words; she's dropping some end consanants but she'll catch up with that on her own, that's what the speech therapist told me at the end of the evaluation. as part of the formal evaluation, they did a hearing test and that's when it all began. kiele failed. and she failed again. and again. it was march 30, 2000, kiele (2 3/4) was diagnosed with "a moderate degree of hearing loss". what? what do you mean? how bad is it? she needs hearing aids? do we need to learn sign language? what? what? what?

my world was rocked that day. i went from a parent of a "normal", hearing child to a parent of a special needs, hearing-impaired child. things went quickly. it's a blur, really. kiele was immediately enrolled in the AZ school for the deaf and the blind, attending an all day, every day program. she received loaner hearing aids until insurance approved a pair that kiele could call her own. kiele put her very first pair of hearing aids on right around her third birthday. yes, my world was rocked but i wasn't scared. it didn't matter. she was my child and i was going to do and give her whatever she needed. i didn't love her any less. maybe i even loved her a bit more (if that was possible). over the months, kiele had test after test. she was officially diagnosed with a moderate to severe hearing loss and a severe to profound speech-language delay. kiele was in a classroom with other hard-of-hearing and deaf oral kids, taught by a teacher of the deaf. she saw an audiologist, an auditory-verbal therapist and a speech therapist on a daily basis.

time went on and kiele's hearing loss progressed. she kept getting tested, as any newly hearing impaired child would and her hearing aids kept getting adjusted. i began to wonder, will my child eventually be deaf? will she lose all her hearing one day? later that year, i went through a divorce and then in december 2000, we moved to fort walton beach, florida (i was an active duty air force nurse and they sent me to eglin air force base). they didn't have the programs that tucson had. kiele was enrolled in an early intervention preschool programs (half the kids were special needs and half were "normal"). i wasn't really sure what to expect, being relatively new to the whole special needs thing. it went rather well. kiele got what i thought she needed, although if i knew then what i know now, she would have gotten a lot more there. luckily, kiele had a great audiologist in florida (she, too, was hearing impaired). we stayed in florida through the middle of kiele's first grade. at the end of our stay in florida, kiele's hearing got bad enough that i started inquiring about a cochlear implant and what the device was all about. i discussed it with kiele's audiologist and she thought that kiele's hearing wasn't bad enough and her speech/language was too good; she wouldn't qualify. i still kept it in the back of my mind. kiele, at age five, also got diagnosed as being far-sighted with strabismus (her eye crossed), while we were in florida.

in march 2003, now married to steve, i left the air force and moved to whidbey island, WA, where steve was stationed. immediately, i began pursuing a cochlear implant for kiele. now with a severe to profound hearing loss, the WA audiologist that kiele saw still didn't think that she would qualify. it didn't matter to me. i was determined. by this time, i knew it was the right thing for kiele. kiele still had lots of educational delays but there was also a lot of social impact, e.g. kiele would only play with one friend; if another friend or friends came along, kiele would come running home b/c she could read one person's lips but she couldn't read everyone's lips, while playing.

so, this is where the story really begins. the cochlear implant process is intense. they don't just evaluate the child's hearing; they evaluate speech, social, etc. the parents and home situation are also evaluated. i was prepared. i had kiele's audiograms all graphed out (seperately and all on one page), to visually document progression. i also had a three page document, where i shared my thoughts about kiele's hearing loss, the impact it had on her, and what i thought the cochlear implant would do for kiele. the first audiologist said that kiele, now age six, didn't qualify. i was immediately saddened. i knew kiele had so much potential. i knew she was a great hearing aid user (most audiologists couldn't believe how kiele did as well as she did with her amount of hearing loss). i knew that kiele was so smart and b/c of that, i felt she was being punished. she wouldn't get a cochlear implant b/c she excelled with her hearing aids. but they weren't with kiele day to day. they didn't see her struggle in the classroom. they didn't see her run home b/c more than one friend was playing. i just didn't get it. and then...i'm not exactly sure how it happened...the head of the audiology department decided to evaluate kiele and basically made her fail. she tested kiele with adult words, instead of child words. speech/language comprehension is a huge part of the cochlear implant evaluation. so, it happened, kiele was going to receive a cochlear implant. her surgery was in september 30, 2003. i didn't doubt my decision to have her implanted for a second. not one second. find out more information on cochlear implants here.

living on whidbey island was tough. the school had not only never had a child with a cochlear implant, they had never heard of a cochlear implant. kiele's first grade teacher was great but rather old school and resistant to change. and, my job as kiele's parent was to ensure that kiele had everything that she needed (that was appropriate for her needs), while in the mainstream classroom. the teacher wasn't happy because that involved implementing things like an FM system. kiele's case manager, who was also her speech therapist, just didn't get it and basically fought me with everything. we were like oil and water and butted heads with everything. she thought i was a crazy parent, requesting things that were unnecessary. but, i thought different and i had every special education law researched and documented to prove that what i was requesting was "appropriate" (huge buzz word in special ed). the breaking point was when kiele's first grade teacher said that she thought kiele would be better off at the deaf school, which was 40 minutes away (they had a total communication program, where they did signing and talked but only sign for two hours of every day). i was upset and frustrated but knew i had to keep fighting for kiele. she was mainstreamed in her zoned school and that's where she belonged. i ended up contacting the WA state deaf/hard of hearing representative to consult with. she not only said i was requesting the appropriate things, but also said that she would come to kiele's next IEP and advocate for kiele. she told me that she would be fair and if i was requesting things that weren't appropriate, she wouldn't be able to bat for me. i didn't care, fair is what i wanted. all of a sudden, i wasn't the crazy parent asking for absurd things; i got everything that i requested because it was appropriate. it was fair. it was right. while at whidbey island, i travelled 2-3 times per week to seattle, which was a two-hour one way trip for kiele's appointments and therapy. it didn't matter. i would have driven 10 hours, if i had to. i would have done anything for kiele.

in january 2004, the navy moved us to san diego (because of kiele's needs). wow, what a difference. the school district has been amazing. i have to say that it's largely due to carol (i can't remember her last name), who was my very initial contact; she attached kiele to diane levy, who became kiele's deaf itinerant teacher. diane is one of the most amazing people i have ever met. she got kiele. she understood kiele's potential. she does things because it's what is right for the child. kiele has also had the most amazing, supportive teachers, while here--ms. gage, ms. hill and ms. o'donavan. while each one is different, the one thing that they are the same is that they each fully believed in kiele. all of a sudden, i didn't have to fight for everything. if it was appropriate, kiele got it.

fast forward to today. every year, the kids go through a standardized state test, the STAR test. last year, kiele scored basic in english-language arts and proficient in math. while some said, "that's great', i felt differently. i knew kiele had so much more potential. well, i got her this year's STAR report today (from the end of year 4th grade testing) and her results blew me away. my eyes immediately filled with tears as i read her results. i just thought to myself. i knew it. i knew it. i was the most proud mommy on earth at that very moment and i immediately went in her room to tell her how very proud i am of her.

kiele scored advanced for english-language and proficient (almost advanced) for math. Specifically, she scored the following percentages:
word analysis and vocabulary development: 94%
reading comprehension: 80%
literary response and analysis: 100%
written conventions: 72%
writing strategies: 67%
writing applications: 50%

decimals, fractions and negative numbers: 82%
operations and factoring: 93%
algebra and functions: 89%
measurement and geometry: 92%
statistics, data analysis and probability 50%

so here is the girl that struggled with reading and school in general, in first grade. here is the girl that some so didn't believe in; they were willing to send her off to the deaf program in another school because they thought she couldn't handle the mainstream program. here is the girl whose new principal recently said, have you considered sending her to the hearing impaired program at the other school; it's a really good program. well, no i haven't considered it? why not? because why should i? kiele's kicking ass at this school; that's why. here is the girl who works her butt off each and every day. here is the girl who reads an entire book in a day simply because she just truly loves to read. here is the girl who is passionate about life and doesn't know she's any different than anyone else. and you know why...because she's not. kiele's cochlear implant is no different than her glasses. she wears glasses to help her see. she wears a cochlear implant to help her hear. does her glasses make her different? nope. does her cochlear implant make her different? nope. she is just like everyone else. and man, i'm so dang proud. i almost can't stand it. i knew it. i knew it.

so i say to anyone and everyone. don't stop believing and don't stop fighting. do your research. learn as much as you can about any condition, disability, etc. your child might have. fight till you can fight no more. but, also know your limits. there's some things that would be nice but are they really necessary?...probably not. i'd rather fight my ass off for what kiele truly needs and will help her learn and excel. know who you're working with. find your ally or allies. they are key.

one of these days, i'm going to begin my next fight, for research on borderline candidates and how cochlear implants benefit these children. sure, there's tons of research on the benefits of implanting a deaf babies and children. but there's not much research on the benefits of implanting borderline children. and let me tell you, it's HUGE! not only academically but socially. HUGE! i would love to present some time or maybe publish an article. with two little ones, i haven't been able to tackle this but i know that time will come. it will come and hopefully in the near future.

if you know anyone that might benefit from my post, please, please pass on the link and encourage them to read.

i want to thank all those who have helped, encouraged, educated and believed in kiele and our family. thank you from the bottom of my heart (you know who you are!). we couldn't have done it without you. kiele couldn't have done it without you.

and lastly, to kiele because i know that you will read this someday: know that i would fight for you until i had not a single ounce of strength left to fight. you are one special little girl. you have taught me more about life than i ever imagined. words cannot describe how proud i am of you. you have a goodness about you that exceeds anything a parent could instill or teach you. you are my hero. i have no doubt that you will grow up to do amazing things in this world. thank you for being you. i love you!

the photo is from today. kiele was in her room, working hard on her menu for tomorrow's lemonade stand that she's doing with her friends. on the menu: lemonade, chocolate chip cookies and pokeman cards :-)

(please note that this is in no way meant to be a deaf versus hearing post. we all make our decisions and mine was to implant kiele. but that doesn't mean i think anything less of those who make a different decision or those who are deaf.)