Thursday, October 23, 2014

hearing, language, choices.

it seems that I've had about thirty conversations in the last month about shilo's hearing, and our choice to not use hearing aids (for now), as well as using ASL as her first language.  some of the conversation has been because we had another sedated abr, and there was a new audiologist who delivered the results.  some was a result of going to a conference for parents of children who are deaf or hard of hearing.  and, some are because shilo will be three in a few weeks, so she ages out of early intervention and into the school system.

so here's some more information for those who are interested.  first of all, there is a whole community that some know exist, and some don't.  it's the deaf community.  in this community, being deaf or hard of hearing is not seen as something that needs fixed.  the adults in this community are just like the adults in any other community.  some went to college.  most of them have jobs.  they raise their children, go to soccer games, and have hobbies.  they might use apps on their phones to help make doctors appointments or to help with ordering in a restaurant.  but, they are perfectly capable of functioning in the world, just like everyone else.  some of them choose to use hearing aids for themselves or children.  some don't.

most hearing parents who find out that their child is deaf or hard of hearing choose to use hearing aids, have cochlear implants, and to work hard to make certain their child speaks.  the view is often that being deaf or hard or hearing is something that needs fixed.  for people who are hearing, it's hard to imagine functioning in a world where hearing, and speaking are the norm, and not having those things.

our personal view lines up more with the deaf community.  while shilo has some hearing, and we have hearing aids for her, she doesn't like to wear them.  matter of fact, without them on, if their is a loud noise, she puts both of her hands on her head and makes a whiny noise, or sometimes cries.  she is completely overwhelmed by loud noises.  hearing aids just amplify this.  so for her, her hearing aids cause her to feel overwhelmed.  she stops playing or interacting.  most of the professionals we have worked with have pushed us to have her wear them as much as possible so she will get used to them.  we have followed her lead and decided that if they are overwhelming for her, we aren't using them for now.  some day, she might change her mind. 
also, while this isn't always true, because people with Down syndrome are individuals, and there is no one thing that describes everyone with Ds, often times, people with Ds can be hard to understand.  they have low muscle tone, and it's harder for them to move their mouth and tongue in the ways needed.  people who are deaf or hard of hearing also, often times, have trouble with speech because they don't hear certain sounds.  for us, this meant that it was possible that shilo would have extremely hard to understand speech as a result of her Down syndrome and being hard of hearing.  our goal for her was communication.  we wanted her to be able to communicate her wants and needs easily.  so it made sense to us to have ASL be her first language.
at this point, we are not working on speech with her. I don't foresee it being something we do in the future, either.  we still talk to her while we are signing.  she still hears music, and watches signing time that is both signing, speaking, and music.  we are not preventing her from learning oral language.  however, we are also not willing to spend hours of therapy every week trying to make her imitate sounds.  i'd much rather we use that time for motor skills.
so at this point, shilo's communication is almost all through ASL.  (she verbally says, mama, papa, go, and Abigail sometimes.  however, she signs those things more often than saying them).  she actually has a vocabulary on par with that of other three year olds, and uses two and three word sentences.  she uses feeling words, and blows us away all the time by signing something we had no idea she knew.  just like all toddlers, she has some words that are the same, and we have to figure out in context what she is saying. 

we know that everyone makes the choice for their child that they think is best.  I am not saying that people who choose to use hearing aids, implants, and/or oral language are wrong.  but, for whatever reason, every conversation we have about hearing, language, and the choices we have made based on what we are doing for Shilo, I have to defend it.
here's our defense:  we love our daughter.  we are the ones who spend more time with her than anyone else out there.  we know her.  we have tried to do what is best based on what we have observed from her.  it's working for her, and our family.  i'm going to assume that the majority of people I meet are doing the same, whether it has to do with hearing, schooling, or the millions of other things, we, as parents, have to make decisions about.  if you could make the same assumption about us, we would appreciate it.

Wednesday, October 22, 2014

the weaning of the tube: part 2.

a while back, I shared that we were doing a somewhat aggressive tube wean to attempt to get shilo to eat food by mouth.
the wean began on june 15th.  in the beginning we did weekly weight checks.  she lost weight.  also, once all daytime calories were gone through the tube, we would attempt to get some extra calories in by pushing a blend through the tube once she was asleep.
on august 9th, we got the official clearance from the dietician to stop the night time calories.  in a little under two months, shilo went from every sustainable calorie being through a tube, to everything she eats being by mouth.  (she still has not figured out how to drink so the tube is still in use for all liquids and meds).
I can't even share how well this went.  there are families who spend months, and even years attempting to get their kids to eat enough to not use the tube.  our only magic potion was working hard to follow shilo's lead-which meant, 'don't try to feed me.  i'll do it myself.'  we still have to cut everything up, and give her one bite at a time, but none of this seems like that big of a deal.  six months ago, shilo didn't know how to swallow.  at all.  and now, we have to buy her, her own meal when we go out to eat.
there are days where it feels like life has always been like this.  but, most days, I am in absolute awe of the fact that my child is eating by mouth.  she has no true texture aversions.  she doesn't like cold, and we are working hard on getting her to eat fruit.  so no ice cream (unless you warm it a bit in the microwave first.  weirdo.), and we are continually offering her different fruits over and over again with the knowledge that lots of children have to try things multiple times before the decide they like it.  we're making progress as we started out with no fruits, and she will now eat all types of melon, banana, and grapes, and is willing to humor me with a few bites of plum, kiwi, and strawberries before she refuses them.
she has favorites, like most toddlers.  (pasta of any sort, as you will see in the photo below). and there are meals where I have to remind myself not to get upset or panic that she didn't eat much, because all toddlers do this.  she puts food in her hair, and gets it all over herself.  her weight is more than it was before we started, and she's grown 1/2 an inch.  she tells us when she's hungry.  if she sees someone else eating, she asks for some (or attempts to grab it out of their hand or off of their plate).
I really hope this gives others some hope that their child will likely eat some day.  it may not go as easily or as quickly as it did for shilo, but it's possible!!

Sunday, September 28, 2014

skills, suckers, and being defined.

this is our youngest daughter, shilo.  she is two, almost three.  she has one of the best smiles in the world.  she has trisomy 21, otherwise known as Down syndrome.
she can crawl (fast), pull up, and walk (run) in her gait trainer, and loves music and dancing.

a lot of the world sees her and can't see anything besides those almond shaped eyes that lets them know that she has Down syndrome.  there are lots of stereotypes that come with that:  always happy, doesn't understand what's going on around her, easy going, compliant, and the list goes on.
shilo's personality is pretty easy going.  she is an overall happy kid.  but anyone who spends much time with her will quickly realize something, shilo is NOT Down syndrome.  she is a two year old. 

here is a list of things that shilo did today that are pretty typical for her:
-threw food on the floor at breakfast
-wiped yogurt and banana in her hair
-got every toy she could reach, out
-attempted to take her dress off as i put it on her
-threw her shoes while i was putting her socks on, then took her socks off while i was getting her shoes again
-turned around and stood up in her car seat while i tried to buckle her in
-walked to the nursery door and signed, 'play' over and over until it was time to go to nursery
-when i picked her up, the mom who was working nursery told me that she was the unsuspecting food thief: she crawled around stealing everyone else's cheerios
-attempted to get into, and take things from a stranger's purse
-threw food on the floor during lunch
-tried taking a chip out of an adults hand while they were talking to me
-grabbed a friend's boob while she was talking to  me
-refused her snack because she wanted French fries
-dumped trash all over
-ripped her bib off and threw it

i'm assuming there are some other moms of two year olds who can relate to this.  and, i'm betting, that they don't all have kids with an extra chromosome.  it turns out that her Down syndrome doesn't define her.  her personality isn't shaped by that chromosome.  she is an individual, who is capable of obeying, and disobeying.  being happy, or sad.  and if you think she doesn't understand you, she will figure it out quickly.  that sweet smile up there with a sideways head tilt is the go to move whenever she does something she knows she shouldn't.  she has skills, and she will play you for the sucker you are, if you underestimate her.

Wednesday, September 24, 2014

discovering grief.

a little over six years ago I became a mother for the first time.  I watched an amazing woman give birth to my oldest daughter.  I fell in love.  instant and deep. 
almost three years ago I became a mother for the second time.  I don't even know what all emotions I felt because it was a whirlwind that when remembered, seems a little like a fuzzy version of hell.  surgery, home, hospital stay, home, hospital stay, surgery, home, surgery again, home, seizures, hospital stay, home.  you get the point.  and to be honest, home wasn't any easier than the hospital most of the time.  lots of puking.  exhaustion form getting up every three hours to give meds and do feeds through a tube.  it was hard.
as we prepare for the arrival of number three, I have been overwhelmed with a rush of emotions I didn't know were lurking below the surface.  I have grieved the fact that I never got to see an ultrasound picture of shilo (I have some of both Abigail and our little guy due in January).  I grieve not being there when she was born, or the first few days of her life.  her family missed her first few days of life.
and then, I feel like her whole first year was missed.  not because I wasn't there, but because it was spent in survival mode.  we were caregivers.  we didn't give bottles, and warm baths, and snuggles.  we didn't comfort tears, or help our daughter learn to sleep at night time.  we gave meds, and sat in waiting rooms, and wondered if our lives would ever be the same.  we never got to experience shilo as a 'baby.'  I have very few memories from her first year of life, likely because I tried so hard to forget.

and now, we prepare for another little.  a boy.  and I'm not even sure what having a baby looks like anymore.  i'm petrified of germs, and am considering not letting anyone near him for the whole first year (this might be a little bit of an exaggeration).  I have no idea what it's like to have a kid without a genetic disorder, and doctor appointments, and so I just prepare for another diagnoses.
perhaps this all sounds a little crazy.  I can't say that between the last six years of our lives, and pregnancy hormones, that I might not be just a little over the edge when it comes to my thinking being rational or sane.
at the same time, I've learned that when confronted with grief, it's often best to put on your boots, and wade into it.  splash around a little.  get a feel for what all is around, and make your way to the other side.  you can likely find a bridge, or a boat, or even a path around.  and, you are welcome to try that.  but, you'll find yourself right back there, at the edge, staring into the deep dark pain of it all, and wondering how you ended up back in that same spot.
so i'm some where in the mucky waters of pain, trying to figure out how to look forward to our upcoming life changes without fear.  I am hoping that as the day of his arrival draws nearer, the other side will come into view, and we will get to meet this child with nothing but exuberant joy.
for now, if you see me, and say something about how excited I must be, don't be alarmed if my response seems less than.  I am thankful for this child.  his life.  what he will add to our family.  it's just that this whole experience is being filtered through past.

Tuesday, September 9, 2014 long as the baby is healthy.

anyone who has ever been pregnant has had this conversation:
'do you know what you are having?'
'not yet?'
'do you want a boy or a girl?'
'it doesn't matter to me.'
'as long as it's healthy....'

the last line actually makes me cringe.  now, of course I don't want there to be something that causes my child to be unhealthy.  but, when I hear 'as long as it's healthy' it feels a little bit like I would accept either gender, but not if they had any sort of disorder, or birth defect, or whatever any of the other millions of things are that can go wrong in pregnancy.
in our house, we will be thankful that we have the opportunity to parent another child.  if it's a boy, well hooray for a whole new adventure.  if it's a girl, *sigh of relief* I already feel equipped to navigate this boat (plus I have lots of clothes).  if the baby is anything less than 100% healthy, we will be just as thankful for his or her life.
I know that when people say this, they mean well.  they are not being rude.  I'm not angry at them.  but, honestly, it still makes me feel like my other two girls are seen as less desirable.  too many of my friends have buried their children.  some of them gave birth to children who were born sleeping.  some of them only got to spend minutes or hours with their children.   and, if you ask them, most of them would tell you that they wouldn't have been upset about dealing with a disorder.  they just want their child.  not a boy.  not a girl.  not a healthy baby.  just their child.
as we near the time period when we would be able to find out what gender our baby will be, we do it knowing full well that we have not been given any sort of guarantees about this child, and the health of it.  neither of our daughter's genetic disorders were 'caused' by anything more than a sperm or egg that had a chromosome on it that was a little wonky. it was nothing that either of their parents did.  and, as a result, we have just as much of a chance of wonky chromosomes as their parents did. 
so, what do we want?  we want to get to parent this child.  but, we make no big plans about who he or she will be.  we will wait, and rejoice in the child we end up with.  boy.  girl.  typical.  just as weird as the rest of us.  we will love our third child.

Wednesday, July 16, 2014

and then there were three.

mostly, I've felt like I just can't do it.  i'm already tired.  i'm already stretched.  how could I ever add another kid to this mix?  will I ever sleep?  will my other kids end up getting the short end of the stick for a while?  I just can't imagine adding more to what already feels like chaos.

and, then, I look up and the sunlight and shadows take turns dancing across her beads and face.  she concentrates on getting the next Lincoln log in just the right spot.  she adds chairs and beds, a fireplace, and a table.  she shares the details of the little world she has made. it seems impossible that she hasn't always been this age.  she was once a very little, little.  i soak up the moment and look forward to sharing these things with another child.

all the while, little is snuggled under a blanket, in the crook of my right elbow, sleeping.  she just couldn't make it until nap time, and i have not the heart to wake her.  i sit quietly feeling each breath she takes in and lets back out. i think of how much closer she is to walking, and how she will no longer feel like a baby to me when that happens.  i brush the hairs out of her face, and become thankful that soon, i'll have another little to sleep in my arms.

and, i remember how with each child, God has given me a verse.  and, they have fit perfectly into what His plans are for our lives, for our children's lives, and for our family.  so i try hard to focus on the verses He gave me for this little instead of the exhaustion and sickness i am experiencing.  i remember that while i will likely deal with the same struggles with tiny, of learning boundaries, and respect, and kindness, that it won't be in the first day, or week, or even month of life.  i'll have time to settle into the role of mother of three.
and, so to celebrate, and look forward to the joy that looms ahead, i buy a onesie.  a teeny tiny one that seems like it could never fit a real live person.  and i lay it out, and look at it, reminding me of days to come filled with toothless smiles, first times for all sorts of new things, and a sleeping baby on my chest.

Wednesday, July 9, 2014

clearing a few things up.

as I suspected, I have already heard quite a few cringe worthy things about being pregnant, and how it relates to our two other girls being adopted.  i'm barely showing folks.  I can't help but fear for what lies ahead, and what my two amazing girls are going to hear.  so i'm going to start by clearing the air a little bit, here.

first, and foremost, the sentence:  if you had only waited.....
you may follow that sentiment with, I wouldn't have my two daughters.  no regrets.  nothing but thankfulness for the children we have.  and had we known we were going to get pregnant ten years later, we still would have adopted first.  there's not a whole lot I can think of that would be sadder than not having my two daughters.


second, I didn't get it easier the first two times.  yes, carrying a child is much different than adoption.  and my first trimester has been fairly miserable in all honesty.  but so was the three year wait for Abigail.  and so was being stuck in another state with my daughter waiting on the powers that be to send paperwork from point a to point b so I could cross state lines.  so yes, pregnancy is hard. and I know there are some harder things to come.  but, adoption has it's pains as well. 

and last, my pregnancy is NOT a reward.  it's not what I get for adopting 'those kids.'  the gift I got for adopting these two, is getting to be their mother, and them getting to be my daughters.  make no mistake that the child growing inside of me is NOT more of a blessing than the first two who listened to someone else's heart beat for the first nine months.  my love for this child is NOT  more than my two daughters. 

God has given me three babies.  three children.  three gifts.  none of them are a reward for what I have done, lest I would never have been a mother.  they are, all three, my children.  in the end, it turns out that the person who's uterus the child grew in has no affect for the love I feel for them.