holland, italy, and wherever we are now.

so most parents who have children with special needs have read the poem, 'welcome to holland.'  i have written about it here, and here on my blog before.  the grand idea is that as a parent of a child with special needs, you think you are going to italy with all your friends, and they when you land you find out you are really in holland.
so with shilo we knew we sort of chose holland.  but we also would say that the part of holland we thought we had landed in is not where we are.  there was just much more that came up than anyone could have guessed ahead of time.  it is the ply of parenting.  it holds no absolutes.

however, the part of, wherever we are now, that has been the biggest 'adjustment' is (re)learning how to talk to our daughter.  you see, having a child who is deaf, and choosing to use sign, is like waking up one morning and someone telling you that your child is going to speak another language, oh, and by the way, it's your job to teach them that language.  it's a wee bit overwhelming to try to learn, speak, and teach a new language all at the same time.
we have awesome resources available to us, that we are utilizing.  the state's school for the deaf has an outreach program, and one week we have a parent advisor (who talks about language, and lots of little idiosyncrasies that one might not think of because they can hear) and the next week a deaf role model (who is deaf, and only signs, and so we fumble through trying to understand each other and learn new stuff).
but becoming fluent in a new language takes a lot of time.  and it's really hard to hold a baby, a book, and sign all at the same time.  so you have to re-learn how to read a story to your child.  and trying to sign while someone is talking at the same time, it's nearly impossible for my brain to function in both modes at once.
so right now i speak broken asl.  i sign the words i know, and just leave out the ones i don't.  and i feel self conscious, and guilty that i can't give my daughter all of the language she needs.
but there is also a really fun element to it.  an element of our family have a language that we can use, that not very many other people will pick up on.  a language that makes our little wiggle and smile every time we use it with her.  a language that our big pulls out when she is feeling shy or overwhelmed.  and it feels sort of special and intimate, like it knits our family together, as a unit, in a way lots of other families aren't.

are you interested in learning some basic signs?  we love www.aslpro.com , signing time, and then youtube you can find just about anything as well.  maybe you can learn some small part of what we are at mannchester estate, and join us, in wherever we seem to be now.

a piece of paper

last week we went on vacation.  it was fantastic.  and hopefully in the next few days i will write a little more and post some pictures.  but today's post, is once again, dedicated to the process of helping shilo hear.

i wrote a post here about the ridiculousness that has been trying to get shilo's hearing tested and get her hearing aids.
so a couple of weeks ago, jason, shilo, and i met with an audiologist.  i called their office multiple times before hand (like a crazy mom-don't judge me, you'll understand as you read on) to make certain they understood that we weren't needing regular hearing aids, but bone conduction aids.  they understood.  they could do those.  great.  because i definitely don't want to waste my time seeing someone who can't help, and for my child to have to go even longer without being able to hear.
so anyway, we meet with the audiologist.  i didn't love her.  i didn't hate her.  she would do.  i was annoyed that she obviously hadn't looked over her file until the five minutes before she called us back to talk to us.  but, she did say she thought that it might be possible for her left ear to be aided with a normal (very high power) hearing aid.  she doesn't do bone conduction hearing aids (enter a long string of horrible words for the woman who said they could do them).  so we got an ear mold and made a follow up appointment for yesterday.
so let me explain a little further before i talk about yesterday's appointment.  first of all, shilo can hear nothing.  okay, i guess, from what they tell us, that if we were at an airport, it's possible she could hear an airplane taking off.  but as far as voices, music, toys, there is nothing.  secondly, shilo's hearing aids are covered by our states early intervention program.  her insurance would cover them as well, but by being part of early intervention, and having them done, we also have had a parent advocate, and a deaf role model on board in helping our family learn sign, and things that are important for a child who is deaf  (that i, as a hearing person, had never thought of).
so yesterday, i load abigail in the car with a promise of game time on my kindle fire during the appointment.  i am feeling emotional because there is a very real possibility that my daughter will hear for the first time.  how cool is that.
we arrive at the office and walk in.  the office manager (the one who assured my they could do bone conduction hearing aids) says, 'oh didn't you get my message?'  ummm....i was on vacation, and i checked messages upon arriving home, but no, didn't get it.  apparently there is a paper that i haven't signed yet, and then our doctor needs to sign, and then we have a ten day wait period before i can get her hearing aid.
they have her hearing aid in their office.  it's sitting there, waiting on a piece of paper in order for me to be able to get it.  i held it together as we walked out the door.
abigail started crying because she didn't understand why we were leaving (and why she wasn't playing the kindle).  shilo is puking on my shoulder.  i am standing in the parking lot losing it.  i had hoped, i had longed, and i had looked forward to my daughter hearing.  and my heart felt like it had, had all the screwing with it could take.  i considered going back in, and telling them i would just write the damn check for the thing because my kid needs to hear.  yes, it's 'just a delay.'  we will eventually get the hearing aid.  but, my daughter is nine months old.  she has significant cognitive and developmental delays, and she can't hear.  we aren't even certain that this hearing aid will work for her (and are waiting on a referral to another doctor for her bone conduction aid for the other ear).
someone implied not too long ago that the reason jason and i have taken the whole deaf thing so well is because she is adopted so we aren't as disappointed, you know, because 'she's not our own.'  let me make known that as a family who loves music and books, it is extremely sad to me that MY DAUGHTER, MY OWN CHILD, can't hear.  it's hard to know that even with aids, she likely will never have full hearing.
as i laid her and abigail down for a nap today, and sang a song to them, i started crying again.  she was supposed to be able to hear me today.  i was supposed to enjoy her learning to respond to her name, watching me as i sing, and smiling at me.  instead she looked at the wall because she had no idea that there was noise coming out of my mouth.
i am not certain how to fix our system of red tape, referrals, testing, re-testing, and stupid missing signatures. i do know that there is something extremely wrong when all that is standing between my nine month old getting her hearing aid, or not, is a piece of paper.  one that i'll sign a hundred times just to make sure she gets what she needs.

my daughter is deaf.

i mentioned before that shilo is deaf.  we have been working through the details of all of this for a ridiculous amount of time, while my daughter was left without the ability to get hearing aids quite a few months now.  so i thought i would share from the beginning of when we 'knew' and where we are going with it currently.
shilo failed her newborn abr.  this isn't completely uncommon for children with down syndrome.  so we made a mental note to get that followed up, along with lots of other things.  we were in the process of getting a referral for it (because you can't just call and say, my daughter failed this and needs retested, a doctor has to tell another doctor that) when she was admitted to riley in december, for what turned out to be congenital hypothyroidism (also common with down syndrome).
by this point, jason and i were VERY suspicious that shilo really couldn't hear.  she didn't startle.  she didn't react to her very loud sister. ever.  she didn't make any noises outside of crying.  she showed all the signs of a child who can not hear.  so we got home, went through the holidays, and were working on the referral (wrong paper sent, new one for the referral, new rules, different information needed, RIDICULOUS) when shilo was readmitted in february.
an abr is most accurate on an infant when she is sedated or under anesthesia.  shilo was intubated, and sedated for nine weeks.  and so i was all, 'hey, while we are here, just waiting on her to get well enough to have surgery, maybe we could go ahead and do another abr.'  and after asking a few different doctors i finally got one who said yes.  audiologist came and results were not surprising.  right ear had severe and profound hearing loss.  left ear had moderate to severe hearing loss.
i'll do my best to be mostly factual here, and not so ranty, but i'm likely going to rant a little.  children with down syndrome also are more likely to have fluid on their ears.  so before the audiologist were willing to give me a referral to get my daughter her much needed hearing aids, they wanted to do ANOTHER abr.  i kindly explained that this was ridiculous.  so they did another test to see if the ear drum reacts.  shilo's didn't, which they explained meant she likely had fluid on her ears.  they also explained that children with fluid on their ears don't usually have the degree of hearing loss her abr was showing.
as a mother who tries to educate herself, i also knew that the majority of children who had hearing loss due to fluid still reacted to noises.  the fluid might make things sound muffled or quieter, but someone screaming would still cause them to turn their head and look.  shilo, no response.  so i tried to have this conversation with a second audiologist and an audiology extern at the hospital.  the extern finally said to me, 'well, children who have fluid on their ears could lose hearing.  if we do tubes, then we can get an accurate view of what her hearing really is.  i think we could *both* agree that you would like your daughter's ears to be healthy.  right?'  so in my equally sing songy and condescending voice i explained that my (then) seven month old had cognitive and developmental delays, and the longer she goes without being able to hear, the more of a problem that is.
thing is, in this process, i can't just take her to get hearing aids.  she has to have a referral.  so tuesday, shilo got a g-tube, ear tubes, and had a sedated abr. again.  turns out, shilo didn't have fluid in her ears.  the reason her ear drums didn't react to the test is because something in her ears doesn't work.  she can't hear.  so much so that regular hearing aids wouldn't help her.  she will have to get hearing aids called bone conduction aids that sit behind her ears on her cochlea bone to help transmit sound waves directly to it.  and even with that her hearing will likely only be at a moderate level.
her official assessment is profound hearing loss (she is completely deaf) in her right ear, and severe in the left.  the extern who talked down to me was the one who got to come tell me after surgery all about my daughter's (lack of) hearing.  i'm trying not to stay angry at her, but i do hope that since she isn't an official audiologist yet, that she walks away from this specific case learning that sometimes, parents do know what they are talking about.
it's also been hard for some of the audiologist we have worked with to wrap their heads around all of this.  multiple ones have said, this just isn't something we ever see in down syndrome.  i think, sometimes, when your kid has a label, that doctors forget that they also are people.  yes, shilo has an extra chromosome.  she ALSO has 46 normal chromosomes.  and just because her body has lots of the features that come along with down syndrome, does not mean that everything about her is down syndrome.  shilo is not down syndrome.  she HAS down syndrome.  it does not define her.
and as far as shilo's hearing, we are doing our best to expedite the process of getting her hearing aids. we have been signing with her since she was very little, and have some awesome people through early intervention who will be coming to help us become fluent in asl.  there are aspects of it all that make us sad. but right now we are trying to focus on getting shilo what she needs.


just a little end note: i know ALL of the options for hearing aids, and cochlear implants.  please don't ask me if we are going to do implants, or tell me why we should.  don't send my you tube links to the first time some little boy heard.  we will figure out what is best for shilo, and go from there. :)  however, if you have a child with bone conduction hearing aids, i would LOVE to hear from you, ask questions, get advice, etc.