Wednesday, June 30, 2010

I'm Not Used to Talking to Children

When I hear kids talk, I'm kind of blown away.  Obviously, my only experience in parenting has been of a child who doesn't talk at all.  He's noisy. And he's said my name before.  He's even said "I love you"!  But mostly, our home is pretty quiet.  In my reality, almost-three-year-olds don't talk.  So when I hear small children talking, I almost want to stare at them in disbelief, like they're some sort of phenomenon.  I want to point at them and say to the person standing next to me, "Woah, did you just hear that?  That kid just said something! We should alert the media; they're going to want to know about this!"  It's amazing to me.  The more I learn about speech, the more I am amazed that any of us are able to talk.  Truly.  It's a miracle any of us are able to speak.

I've been noticing that other kids are noticing Elijah's differences now.  When he was smaller, they didn't pay as much attention to the drool or how he doesn't always respond when they try to engage him.  But, now, they notice.  I see kids looking at him, wondering.

They're starting to ask questions.

Not too long ago the neighbor kids started to ask me questions about Elijah.

Neighbor girl, "He drools a lot."
Me, "Yes, he does."
Neighbor girl, "Why?"
Before I could answer, she asked another question.  I was relieved; it was an easier question to answer.
Girl: "What's that on his bike?"
Me, "That's something to help Elijah keep his feet on the pedals.  He doesn't really need it anymore because he keeps his feet on all by himself.  He's just learning how to push the pedals by himself, isn't that great?!"

A little later, Elijah tried to get in one of the neighbor's swimming pools, again.
Girl, "Why don't you just let him get in?"
Me: "It's almost lunch and I don't want him to get wet right now."
Girl: "You could just change his clothes you know."
Me: "I know, but right now just isn't the right time to go swimming. And Elijah can't always get his way just because he wants something."
Why, oh why, am I arguing with a six year old?

Soon, Elijah spits up some of his morning snack.

Me: "Whoops!" as I wipe off his face with his shirt since I have nothing else.
Girl: "What's that?"
Me: "He just spit-up a little."
Girl: "What is spit-up?"
Me: "Oh, it's uh, throw-up." (How do you put that nicely, so that they understand?)
Girls: All react disgusted in different ways.
Me: "It's okay, Elijah's tummy just doesn't keep his food down as other kids.  Here, we'll just take some water from the pool to wash it away."
The girls seem satisfied. Thinking that they might associate throwing-up with being sick, I tell them Elijah's not sick or anything.  It's just that sometimes his food just comes back up. No big deal.
Girl: "Oh, you should take him to the hospital."
Sigh.  I am just not used to talking to kids.

I'm glad the kids are asking questions.  Really, I am.  We live in a fantastic neighborhood, with respectful children.  Elijah likes to be with them, so they're going to have questions.  I'd like them to get to know him, be protecting of him as he gets older.  It's just that kids ask "why?" a lot...and sometimes that's a hard question for me to even have the answer.  I don't know why Elijah behaves the way he does at times.  I'm going to have to get used to answering these questions.  I so want to have the right answers, to be able to explain things in a way that they can understand.

I ache for them to accept Elijah as one of their peers.  For the most part, they do.  I just need to wrap my mind around children and their questions.  And I need to be ready with an answer, as hard as the answers may be sometimes.  The way I respond has a big impact.  My answers are what will enable them to accept Elijah and will educate them about kids with disabilities.  It's important that I remain positive in my responses.  Having the right answers does stress me out a little.   I am just not used to talking to children!

Sunday, June 27, 2010

How to be a Superhero

I think Aqua Man, er, I mean Elijah, likes our sprinkler. Want to appreciate a sprinkler like a Superhero?
First, you must test the water.
Then, you can jump right in.
Next, stick your face right in the water.  Trust him, just do it!
Finally, run around with glee.  Don't worry if your swim pants start falling happens to the best of us.
Start thinking about your next adventure.
Job Well Done.  Maybe you can be an Aqua Man too!

Friday, June 25, 2010

Our Weird Collection

It seems we've been collecting things ever since Elijah was born.  It's really not the type of collection you'd want to have, believe me.

You see, in our family we collect diagnoses.  I can't tell you how many times Andy and I have wished...if only it were just one thing.  I used to think disabilities were more straightforward; a person might be blind or deaf or paralyzed, but they wouldn't be all three.  At least not in my mind; multiple disabilities just wasn't something that ever crossed my mind.  Of course, there was Helen Keller, but she was a rarity, right?  I saw disability as an a la carte kind of thing.  You'd pick one item and that would be it.  Your tab was full.  Turns out, the world of disability is more like a buffet.

"Let's see how much more we can fit on that plate!"

I know a lot of my blogging pals are in the same boat because a lot of your kiddos have brain injuries too.  And, well, brain injuries aren't exactly a one diagnosis kind of injury.  I know this is true for a lot of other medical conditions too. Elijah has at least seven diagnoses at this point.  Seven.  Now...I'm more aware that when it comes to disability, it's rarely just one thing.

It can be overwhelming and frustrating to keep getting diagnoses piled onto your child.  Truly.  Nothing will ever compare to the day when we were told that Elijah had severe global brain damage.  But, it can't be ignored that diagnoses that would be shattering to most parents have be tacked onto Elijah's list throughout the last almost three years and we hardly blink.  Does it still affect us?  Of course it does; sometimes it's really hard.  Sometimes it feels like starting all over again.

It's a really weird collection we have started.  Started.  Oh, there is definitely a part of me that knows we're not done yet.  And that's what can be so hard.  You deal with one thing, only to have another obstacle to climb next.   Is it worth it?  Yes, because he is worth it.
No, we haven't gotten any new diagnoses recently.  Well, not too recent.  It's just that sometimes it seems no one knows how to help our beautiful boy because of his collection.  And that can wear on us at times.

When I was a kid, I collected a lot of things.  At one point it was cow figurines, then little Volkswagen Bug cars.  Inevitably, however, I'd not want to collect those things anymore and I'd give my entire collection away as I outgrew it.  Sometimes I just want to give our diagnosis collection away and replace it with a new one.  It'd be a list containing words like joyful, wonderful, amazing, and inspiring.  This would be the list I'd rattle off when someone asked me about our child's history.  There would be no diagnoses to list, no unique story to tell.  I know that we already have this collection too and it coexists with our other list (quite beautifully, actually).  No matter how hard I try, I just can't seem to get rid of our weird collection. I'd rather we didn't have it, but it's okay.  Really.  If we didn't have our weird collection, we wouldn't have him.  And that wouldn't be okay at all.

Tuesday, June 22, 2010

Return of Aqua Man!

I know, I know, I haven't been the greatest updater lately.  It doesn't make you want to cry like this does it?...

I should hope not.  However, having to come inside after swimming might make you cry. One day last week, little man ran to the neighbors house and decided to climb in their pool before I could stop him. Do you know how fast this kid is?! I tried to prevent him from getting completely wet since he wasn't exactly dressed for swimming.  The neighbor (not the one who owns the pool, but who's keeping track?) said I should just let him get in, so I did (we have really nice neighbors).

When it was time to come inside, Elijah was just a LITTLE bit upset.  Who needs to eat lunch, when there's a swimming pool just across the street? Hmmm?  He is drenched in these photos.  His diaper was huge.  Like I said, he wasn't exactly dressed for swimming.

I think it's time to set up Elijah's pool in our yard.  Let's be honest, I haven't set it up yet because I know he'll want to get in it every time we go outside.  Every.single.time.  Seriously.  There would be no playing with anything else.  Just swimming all the time...which is probably what most kids are doing during the summer, right?  I'd better suck it up and be prepared to be wet for the rest of the season.  Not that we haven't been playing in the water a lot anyway....or 'sneaking' over to the neighbor's house to try to get in their pool.
So, Aqua Man has officially returned (wow, that link gives me some major nostalgia). This week, I'll try to write out a few updates that are floating around in my head.  Oh, and I have awesome pictures of Aqua Man playing in the water that I'll post sometime soon.  Seriously, I will.  You'll hold me to it, won't you? ;)

Monday, June 14, 2010

What Am I Doing Here?

Sometimes I wonder how I got here.  I mean, unlike most people, I never really made the conscious decision to start a blog. No, I wasn't struck over the head only to wake up and discover that I was the author of Elijahland. For us, it started with Caringbridge.  Elijah was a only a couple days old when Andy started Elijah's Caringbridge site and encouraged me to start writing updates about our son.

Never before had I blogged and even then I didn't consider it a blog, but a journal.

Caringbridge seemed like a great way to communicate with family and friends.  After all, I was really too exhausted to call anyone and I certainly didn't feel like saying the same thing over and over again to multiple people.  I was hardly surviving as it was...I was recovering from surgery (and labor) and my heart was slowly breaking.  I wanted our boy home and I wanted him to be okay.  Making a phone call to anyone was like suggesting I take another bite when I was already way too full.  It was just too much  Andy was in the same boat as me.  Besides we knew we could use each and every prayer we could get - and I know we got a lot through sharing Elijah's story online.  So I wrote about our days with Elijah in the NICU and ICC while we drove home from the hospital every night (um, well, while Andy drove and I rode).  We kept everyone updated this way and writing through our experiences was cathartic for me - a win-win.

Eventually, we switched to blogger and named our site Elijahland, mostly to be able to add more pictures to my postings.  Because I wanted to keep everything in one place, we copied everything over from Caringbridge to here, which is why my postings go back to 2007.  Yes, I'll admit I'm a bit of a (recovering) perfectionist. ;)

And, well, that's how we got here.  I started writing about Elijah to ask for prayers and I haven't been able to stop writing about him since.  What can I say?...Our little man is a topic I'm definitely passionate about. 

I have to ask myself, though, why do I keep writing?  Do I share too much of our little lives?  You might not know this about me, but I'm actually a pretty reserved person.  I try to pretend that I'm not, but I am.

So why do I do continue blogging? For a lot of reasons...
-to glorify God in what He's done for Elijah
-to get my thoughts out so that I can move forward
-so that other parents of kids with special needs can relate (and not feel alone in times of struggle/triumph)
-to change public opinion in some small way in reference to people with disabilities (Elijah has special needs and he's also awesome and perfect)
-to show parents of typically developing kids that we have more in common that you'd think
-because when Elijah accomplishes something, I want to shout it from the rooftop...and well, I can't climb on our roof (or at least it wouldn't be a good idea)
-it's pretty awesome having a record of Elijah's entire life
-because I love to write
-for other reasons I'm not really cognizant of
-because that dangling preposition above is bothering me (okay, maybe that's not a reason, but still.  Did I mention I'm a (recovering) perfectionist?)

I've barely touched my computer in the last two weeks because Andy had two work related trips that took him to both ends of the country (this really isn't the norm for him at all).  That also essentially left me as a single parent for a couple of weeks.  It made me think about a few things: 1-Single parents rock.  I look up to parents who solo parent full-time; it isn't easy. 2-Andy helps me A LOT.  I felt kind of lost without him.  3-I like blogging.  I miss it when I don't have the time for it.

So while sometimes I look around and wonder how I got here, I'm really glad to be here. To read all our your important stories means so much to me.  To write, well I love it. I quite literally can't stop writing.  It's like starting Elijah's Caringbridge site we started rolling down a hill and we never stopped.  Good thing we're laughing as we go.  And while I sometimes take time away from the internet, luckily for Elijah-fans everywhere, I'm not going anywhere. :)

Thursday, June 3, 2010

The Quest for Sleep

Ahh, Sleep.

Elijah has never really been a good sleeper.  Not bad, but definitely not good.  When he was an infant, I would spend forever trying to get him to sleep to only have him nap for a half hour.  I read the books.  I followed the directions.  I wrote down all of his sleeping and eating and...other (wink wink nod nod) habits.  He still didn't sleep didn't really matter what we did.  Or how much I tried to figure out his patterns.

We'd go through phases.  For awhile, we'd be able to lay him down in bed and he'd go to sleep on his own.  Then it'd stop and I'd end up rocking him to sleep.  He'd wake in the middle of the night and I'd end up spending half of the night sleeping in a rocking chair because I was so tired.

Once in awhile, he'd sleep through the night.  We'd think it was a new pattern.  "What did we do last night?" we'd ask ourselves in the morning.  We'd try to replicate the exact same no avail.  There just didn't seem to be any rhyme or reason to his sleep patterns.  Sometimes he sleeps, sometimes he doesn't. (It's still pretty much like this).

Right now, Elijah is probably the best sleeper he's ever been.  He takes a solid nap every afternoon after lunch, which is consistently an hour and a half.  It's glorious, he never slept like that when he was a baby (45 minutes was good back in babyhood days).

Remember how we moved Elijah to a toddler bed?  It was the right decision -he used to cry every night when he had to go to bed and he'd hit his head on the crib railings. We've switched things up a bit...A few months ago we decided to buy a twin mattress as he was falling out of the toddler bed.  He wasn't getting hurt.  (In fact, one night we heard him fall out of bed onto the pillows we had piled below.  Andy went in to check on him to find him still asleep on the pillows). Regardless, we knew we needed to find a different sleeping solution. It wasn't working.  So, now we have a mattress on the floor with a small toddler railing to help him feel a little more contained.

Having the mattress on the floor was really just meant to be temporary, but we haven't found a bed that we've been satisfied with just yet. Well, not one within our price range anyway.  I found a special needs bed that I've drooled over, but it's a bit out of our price range. $3800 I didn't care, I was still admiring it. $3800 I could just zipper Elijah in and he'd jump around (safely) and eventually go to sleep. $3800.  He couldn't bang his head on the floor. $3800.  Wouldn't it be glorious? $3800.  I think it'd be a good thing if we can teach Elijah how to sleep in a standard bed. $3800  I'm pretty sure we will get there. $3800 Right? $3800 Yes, yes, we will. $3800.  Not having that bed is a good thing. $3800. We don't need it. $3800.  In all seriousness, though, we don't need it.  Not just because it's $3800, but because I'm sure we'll be able to teach him how to sleep in a standard ol' bed...maybe with some padding on the walls if needed. I hope.

The only problem with not being in a crib is that Elijah can get out of bed. Um, yeah.  Every night either Andy or I sit by Elijah's bed until he falls asleep.  He'll sit up and we'll lie him back down.  It's not that big of a deal, really, but it's getting old.  Fed up, two nights ago I decided we needed to do something about it.

So, I decided to let him get out of bed instead of sitting right next to him.  When he got out, I'd tell him it was bedtime and put him back in bed. Then with each subsequent escape, I silently put him back in bed.  The first night, I didn't count how many times Elijah got out of bed.  It felt like a hundred times.  Last night he got out 36 times.  Tonight, 15.  I'm hoping that at some point we can lie him in his bed, tell him we love him and leave the room and he'll sleep.  That's the goal anyway - if I don't go insane in the meantime.  I know that the only way this is going to work is if we're consistent.

It's interesting to me how he reacted tonight verses last night.  Elijah would wait longer in-between his escape attempts.  Sometimes, he'd get to the edge of the bed, sit there for a few moments and then get out, knowing full well what was going to happen once he got out.  He goofed around in his bed more.  He decided to add standing on the bed and mouthing the wall in his repertoire ("Look, I'm not getting out of bed, mom. You didn't say anything about not mouthing the walls!").  He's a resourceful guy.  So, I had to add not letting him stand on his bed or mouth his wall to my repertoire of behaviors to stop.  To me, these things show what a smart guy he is, though.  Just like any other kid, he's trying to get out of going to bed.  If he could he'd be asking for "just one more glass of water.pleeeeeaaase?"

He's still getting up in the middle of the night.  But, last night, all I had to do was place him back in bed and he went back to sleep (instead of him needing me to stay in the room for anywhere from 30 minutes to an hour).  And, drum roll....he's not hitting his head on the floor in the middle of the night anymore! Well, it hasn't stopped completely (he did it just last night), but it's rare now instead of being an every night guarantee.

I know some of my blogging friends deal with much more sleeping issues than we do.  Hugs to you!  I think interrupted sleep is probably one of the hardest parts of being a parent.  And that goes for all of don't have to have a kid with special needs to know what this is like.  In fact, I know this is an issue than many parents have to work through.

I just have to add, I really have no idea what I'm doing.  I remember reading some advice once on a support group on how to get your kid to sleep in their bed and this is what I think the advice was - to keep putting them back in bed.  Makes sense to me.  Elijah definitely learns by repetition and he's already showing that he's understanding what's going on.  Someday, he'll sleep through the night every night.  And someday I will too. Um, I think I'm going to bed now.

Wow, this was a long rambling post.  Um, goodnight? I hope.
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