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.