Craaaaaah

Elijah is standing behind me. Blowing air past his lips, Elijah makes a "craaahhh" noise.

"You're copying me aren't you, Elijah?" I ask.

Elijah smirks at me and laughs a little. He is copying me.

You see, I've had a bit of a cold lately. One of those annoying ones that causes you to be congested for a very long time and subsequently causes you to cough and blow your nose several times a day, even though you feel otherwise healthy (I'm already feeling much better, thank you).

I'll head to the bathroom to blow my nose and soon I hear the pitter-patter of Elijah-feet in my direction. He follows me to mimic the sound I make when blowing my nose.

This is pretty cool for our kiddo who's never mimicked much of anything we do (pretty cool indeed!). Elijah will sometimes imitate gross motor activities, but I really can't think of much that he has mimicked verbally. Even cooler is that he's been doing it all week. It's not just a one day thing or a one person thing (he's mimicked Andy too). Often when we've heard verbalization from Elijah we won't hear it again for six months, a year, or longer. It's a long time to wait.

So, when Elijah comes up to me and copies a noise I'm making? I'm beyond thrilled. He's really copying a sound with his mouth. I hope you all realize how profound it really is. Is it a word? Nope, but in my book it might as well be. That's how cool it is. Just tonight, I pretended to make the sound and Elijah did it too. "Craaaaah," he said, a smirk on his face. This back and forth verbalization is the beginning of speech, so yeah, it's pretty exciting.

Oh, and who cares if it's something gross? It's like a kid repeating that one thing you didn't want them to in an embarrassing setting. A parental rite of passage, don't you think?

{Also, how in the world am I supposed to spell this sound? Craaaah will have to do, I guess.}

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He's Getting It

Elijah's communication skills have really been coming along.  We've been working with augmentative and alternative communication (AAC) devices for awhile now and he's getting it.  He's really getting it.

A huge motivator for our boy is going outside.  He LOVES to go outside.  I'm pretty sure he'd live out there if I let him.  He'd probably be raised by deer or a red fox or squirrels or rabbits or that other weird creature that I saw in our backyard (an otter, beaver, badger...apparently I need to go back to elementary school).  But, I'd miss him too much, so I make him live with us.  I'm mean like that. ;)

Anyway, what was I saying? Oh yeah... Elijah constantly wants to go outside.  Awhile ago he started to ask us for things by directing us to what he wanted.  A huge step to be sure!  But now, Elijah is taking his communication to the next level.  He's using words.  No, not with his own voice, but with "talkers" we have placed in key areas of the house.

All of the talkers in our house have been loaned to us from the school district.  It's given Elijah a voice, where he was once silent.  We've seen a reduction in negative behaviors, which makes our life so much more pleasant.  And, yes, that might be a major understatement.

The following photos are a good illustration of his thought process.  We have a talker by our door that is connected to the laundry room which leads to the garage....which obviously leads to the glorious outdoors. First, he needs to locate his talker.

Then, he needs to ask his desired question by pushing his talker.  With this talker he says, "Can you open the door for me please?"

Then he immediately moves to the doorknob to show us what he desires.  It's pretty obvious he knows what he is saying. 

Next, he moves to the door that leads to the garage, grabs the doorknob and looks expectantly back at us (because we can't have talkers by every door of the house!).  He speaks a whole lot in that little glance: "Mom, can you open this door next?  Because I want to go OUTSIDE!!! Pleeeeeaaasseee?!"  It's quite the feat for a little dude who has had such a hard time looking at us throughout his life. And so, we put on our shoes and play to our hearts content because he asked so nicely.

His communication is so clear.  Do I wish he were able to verbalize these desires with his own mouth?  Absolutely.  It'd be so much easier not to have to figure out what the little guy wants to say so that we can give him the opportunities to say it.  Do I hope that he will one day be able to talk to us? Yep.  And I'm not giving up on that goal.  More importantly, though, is that Elijah is communicating.  It's a big deal.  It's like watching him take his first steps or hearing his first words.  They are his first words in a lot of ways.  He's quite articulate and polite don't you think? "Can you open the door for me please?" That's our boy. :)

He's getting it and I'm getting it too.   We're communicating and he knows it.  He's starting to expect that we hear him, even when he's not saying anything at all.  It's a glance, a tiny gesture, or the push of a talker.  It's a beautiful, wonderful, spectacular thing.

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The Director of Awesome

I've been in a deep funk lately. I have about 15 partial posts written, saved and ready to be finished and posted. But I get distracted - sometimes by Elijah and sometimes I just have to keep writing the posts that keep popping in my head before finishing another. Mostly it's hard to post about the harder things and when you're in a funk you're going to be writing about the harder things. It feels like ripping my chest open and saying to the world, "Okay, here's my insides everybody. Take your best stab." I want to share it, though, and I will in my due time.

But not today. Today, I'm going to talk once again about how awesome our little man is. Because he is awesome.

In order to fully understand why today's events were so awesome, I think I need to give some background info. Awhile ago, I wrote one of those 'ripping open my chest' posts about Elijah's difficulty communicating and my frustration. And at the end of the post I mentioned a short seminar I went to given by Teri Kaminski-Peterson, author of The Big Book of Exclamations. She talked a lot about the pre-symbolic stage of development and a lot of the stuff she said has stuck with me. In my own way and the best I know how, I've been trying to teach Elijah some of the things I learned that night.

You see, words (and gestures) are symbols...they are a representation of something else. Before we start to talk when we're wee ones (yep, I just said wee ones), we have all sorts of precursors to speech that need to occur first. To my delight, Elijah has a lot of the precursors to speech. For example, he has some reciprocal interaction. If you tickle him, he might laugh, run away, and then come back for more. In his own way, he's asking for you to tickle him again, reciprocating. Sometimes, he will imitate you (another precursor to speech). That night I listened to Ms. Kaminski-Peterson's talk, I realized that the ares of communication Elijah struggles with the most are directly related to his vision.

One thing babies do before they ever utter a word is to direct your attention to something. Babies will see something they want, get your attention perhaps by babbling, and then they will point at the thing they want. They direct you towards their desired object. I wondered how Elijah would be able do that. How can he direct our attention to something if he can't even see it?

I started thinking of ways to teach him how to direct me. He loves his Elmo toy and we put it on the counter out of his reach. He'd whine for his toy, I'd grab his hand, walk him over to where I was standing and model what I wanted him to do. I'd take his hands and pretend to have him pull on my pant leg while saying, "Mama mama." And then I'd respond to myself "What do you want Elijah?"while grabbing his hand. I'd walk him over to Elmo, placing Elijah's hands on the counter. "Oh, you want Elmo! I can turn him on for you." And repeat this scenario over and over and over. Yes, it's kind of awkward having a conversation with myself, but I was teaching him how he could direct my attention.

Are you still with me? We're getting to the good part.

Lately, Elijah has been reaching up to Andy and me to be picked up. It's the sweetest thing ever. He never used to do that and we've been enjoying the hugs he gives. Today, Elijah was reaching on my leg. I was about to pick him up when and a light bulb went off. This is what I've been trying to teach him. Maybe he doesn't want to be picked up, maybe he's trying to tell me something. So I grabbed his little hand and asked him, "What do you want Elijah?" To my surprise, he started to walk through our kitchen. "Where are we going Elijah?" Elijah walked me into our family room and laid down on the floor. Can you hear the shouts of joy and amazement?! No? Well, we change Elijah's diaper in our family room. He wanted to have his dirty diaper changed! He communicated his desire to have his diaper changed. Um, if you're not with me yet, that's HUGE for a multitude of reasons. He knew that he needed a diaper change for one thing (which is kind of important for potty training) and he told me about it by getting me and bringing me to where he gets changed. He directed my attention to a need of his. Now do you hear the shouts of joy?

And later, Elijah directed my attention to Elmo by clawing at my leg and walking me to his toy. Two times in one day; it's not a fluke. He's getting it. And yes, he is awesome. Not that you didn't already know that.

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He's a Big Boy

Elijah has been - how shall I put this - challenging lately.

It's kind of difficult to put our finger on what is wrong. We know Elijah is teething, but he has been for months. Two of his two year molars are poking through, but those suckers are taking forever. And to think there are two more to go. Sigh.

At the age of two our little man finally started to sleep through the night fairly consistently... and then it all changed. Teething, perhaps.

The thing is, though, that there are a lot of changes taking place in Elijahland. There might be more to it than just some teeth. Little man seems to be trying to assert his independence in whatever ways be can. He seems to be having the typical two-year-old "me do" mentality. Problem is, he isn't able to tell us verbally what he wants - which is frustrating to all of us.

His receptive language, however, is coming along. He's showing us that he is indeed understanding some phrases that we say. For example, if I say it's time to eat, he will walk to the table (usually laughing as he goes).

And, diaper changes. Elijah has hated having his diaper changed for the longest time. I'd explain what was going to happen, lay him down and he'd absolutely freak out. We finally figured out that he didn't like to be laid down. He wanted to do it himself. We tell him that he needs his diaper changed and he very compliantly lays down on the floor to have it changed. He'll even lift up his bum sometimes to help out! I know it might not sound like much, but to us...it's a big deal. Not only does he understand, he has a preference to how his diaper is changed, and he wants to do it all by himself. He's a big boy and he's desperately trying to let us know.

Speaking of being a big boy, we're making the transition to a toddler/day bed. We've been thinking about this for awhile now, since Elijah's getting scarily tall for his crib. We turned his crib backwards (because the back of his crib is taller than the front), but then I needed a stool just to reach him! Not ideal. We've been apprehensive to make the change, wondering if he's ready developmentally. And guess what? Elijah seems to be sleeping better with just having his mattress on the floor (we're doing it this way first to make sure he doesn't take a big tumble out of bed). It's going to take some training to teach him how to stay in bed (and it would with any kid), but he seems to be so much happier. He's a big boy. He wants freedom and independence - just like any other two year old. And just like any other first time parents, we're trying to figure it all out. We'll get there.

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We Could Use Some Prayers

Tomorrow morning we will be taking Elijah in to have an ABR hearing test, also known as a BAER. ABR stands for Auditory Brainstem Response and BAER stands for Brainstem Auditory Evoked Response, because I know you were totally wondering and are completely riveted with this information. ;)

In order to perform this test, Elijah will need to be sedated. SEDATED. Okay, so sedation completely freaks us out. You see, the one time Elijah was sedated he had some issues with it. I know Elijah was really young at the time and it should be easier this time around, but it's still scary. It's not something we take lightly. And, if I'm going to be completely open and honest with you all, in a lot of ways I know it's going to be psychologically trying for us. It'll bring us back (emotionally) to Eli's NICU days and I don't want to go there. I can hardly even think about watching him passed out tomorrow morning. It makes my heart hurt.

Andy and I have gone back and forth several times as to if we were even going to do this test. We've spent a lot of time weighing the pros and cons, discussing it, praying about it. We certainly don't want to put Elijah through a procedure unless it's absolutely necessary.

And here's where it gets confusing - we know Elijah can hear. So why, then, would we be doing a hearing test? The thing we're trying to rule out is something called auditory neuropathy. Supposedly, with auditory neuropathy, hearing can come and go, it can be mild to severe, and it could cause a person to have a hard time understanding speech. Basically, it would mean that the brain isn't receiving all of the messages it should be. Considering Elijah's history, it's quite possible that he might have some sort of hearing problems.

So, that's how we came to decide to do the test. There are possibly things we could do to help Elijah if he indeed had some hearing loss (such as hearing aids or cochlear implants). With that in mind, we are going ahead with the test. We really think it needs to be done to make sure we're doing everything we possibly can be doing for him.

We could certainly use some prayers. Prayers for a safe and uneventful sedation experience and for the test to show that Elijah doesn't have auditory neuropathy. Thank you to each and every one of you who care about our little Elijah. It means so much to us.

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A Man of Few Words

The hardest thing for Andy and I is to yearn for speech. Something, anything, any words at all, please-just-let-him-talk-to-me speech.

It's not that Elijah hasn't said anything. He has. There have been times when I've walked in a room, Elijah has given me direct eye contact and he's said, "Mom."

"Yes!" I say, "that's ME! I'm Mom. Mmmmomm, that's right, Elijah, Mmmmooooommm."

Most of the time, Elijah doesn't refer to me at all, but once in awhile, I'll hear an "Ahm" and I know he's saying my name.

And then nothing. I won't hear it again for a long time. For the most part, Elijah communicates in crying, whining, screeching, laughing, growling, and "dolphin-boy" squealing. He does babble occasionally and if he's feeling really cooperative, he will even mimic some noises (that, however, is exceptionally rare).

And then something amazing will happen. These moments are few and far between. I don't really mention them because, well, it doesn't happen very often and I usually chalk them up to my imagination.

Flashback to this morning...Elijah has just woken up and Andy brings him into our bedroom. Elijah sees me and leans his body towards me, which indicates his desire to be held by me.

"I love you, Elijah," I say when he's nestled in my arms.

And then comes a distinct, "Ahh-vooo." from Elijah.

"I heard it," Andy says and we both smile. Our boy said, "I love you" and we know it.

This isn't the first time. In fact, the first time Elijah said his version of "I love you" he was less than a year old. Andy was saying love you - love you - love you -over and over to Elijah. And Elijah said, "laboo" a couple of times...and then nothing for a really long time.

A little over a week ago Elijah said a version of "I love you" to Andy at the dinner table... and now this morning and I'm starting to let myself believe that it's real. Elijah is trying to say, "I love you."

It's not like he's never heard it before. The poor kid is probably going to move out when he's a teenager...that's how much he's heard it. He probably won't let me touch him once he's three, I've used up my allotment of hugs and kisses (Nah, there's no such thing as too many hugs or kisses). Let's just say he gets a lot of lovin' (can you really blame us?).

If there is one thing I want Elijah to know, it's that we love him...no matter what. He may be a man of few words, but he certainly chose the right ones to say. Because, when I think about Elijah's speech, "I love you," is all I really want to hear and I don't doubt that he is trying to tell us. And let's be honest, he doesn't really need words to tell us how he feels. We know.

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In Their PJs

One morning this weekend, Elijah sidestepped around his shoes very carefully to get to our back door.

He touched the door, looked down at his shoes, and walked a few feet over to me. He backed up into me like he was going to sit on my lap, but missed and sat on the floor next to me - his feet kicking, his face looking expectantly up at me.

It was clear what he wanted. "Mommy I'd like to go outside please. Could you help me get my shoes on?" he said without moving his lips. I looked down at our pajamas and the temperature gauge which read 30 degrees fehrenheit. What to do?...he'd asked so nicely.

So, Andy grabbed his coat and Elijah's coat and they got all bundled up. They went outside to play while still in their pajamas. I watched from inside making breakfast with a smile on my face thinking that life is good.

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He Can't Tell Me

At times, a blind rage overtakes our boy. He screams and he cries and he bites his hand until it's red. Welts and scabs form from his continual abuse. I hold his hands and urge him to calm down. But his anger is in control now. He arches backwards to hit his head on his highchair because he can no longer bite his hands and mine are out of reach. He must get the anger out.

"What do you want?" I ask. But he doesn't answer. He can't tell me. And he doesn't know why I can't understand.

My insides grow cold and I want to cry, but I've used up all of my tears and have none to spare. I'm dead inside at this moment, my eyes drifting out the window so that I can pretend that I'm somewhere else. Anywhere, but here in this moment, watching my child hurt himself.

I try to understand, solve the puzzle of his anger. "This isn't what you wanted for lunch?" I ask. And yet, I know how he feels. I want to punch holes in the walls and slam my head against the table. The rage visits me too. Because he can't tell me. And I can't understand.

***

I wrote this this afternoon after a really difficult lunch with Elijah. Tonight, I went to a local event featuring a speech pathologist named Teri Kaminski-Peterson, author of The Big Book of Exclamations. She said some things I've heard before, gave me some new ideas, and most of all, reminded me that there's no such thing as false hope. There's just hope.

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