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.

IEPs suck

there, i publicly said it.  and having to do them in five different states and nine different schools sucks that much more. sorry for my frankness here but i think most parents, who have gone through the process, would agree that individual education plans (IEPs) just plain 'ole suck. if you don't know what an IEP is, consider yourself lucky!! i wonder...do educators understand the anxiety that an IEP produces for parents? i mean REALLY understand? maybe only those few, who happen to have a child, with a disability, themselves. i get teary just thinking about the IEP, let alone sitting at the table...as, what's suppose to be, an equal team member.

i have made myself about crazy as i prepare for kiele's IEP tomorrow morning.  i sit here...cautiously optimistic and then that other side creeps in and says, they're going to fuck with you. be prepared -- and then i begin to freak out. yes, i've done a great job thus far. i know that. but i have three years left. and i can't let anything get screwed up. kiele's come too far. and she's doing too amazing. i've simply done what i was supposed to do and must continue to do so until she is ready to advocate for herself (and hopefully by that time, i will have taught her well).

it's just so HARD.

my advice to mommas of children with disabilities or needs, who are dealing with the special education system... know your stuff. and the laws. research. research. and more research. find other parents with children with a similar disability... kiele absolutely would not be where she is today without the knowledge and insight i gained from other parents. there can be a wealth of information in organizations and forums (check them out). stay strong. know that only YOU will truly advocate for your child... and that you know your child best. fight for what's appropriate (and know the buzz words). find that one person within the educational system who is on your side... who is willing to fight the system and risk their career if it's the right (or shall i say appropriate) thing to do. listen to others but know that your child's situation is absolutely unique.

years ago, i thought that i would pursue a career in special ed advocacy. who knows...i still might. along with photography, it's something that i'm deeply passionate about.

thank you maura and diane.  the two of you taught me everything i know and created the advocacy monster that i am today.  love you both dearly!!

as i go into my 11th IEP meeting, i can't help but reminisce...

shortly after kiele was diagnosed with a progressive hearing impairment (age 3 | may 2000)

kiele's cochlear implant surgery, post-op day two (age 6 | sep 2003)

her treasures. an image from when i first started photography (age 9 | 2006)

on her birthday (age 14 | couple weeks ago)

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.

OH MY GOSH!

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!

terrie

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!!