What It's Like to Be Him - Part One

I often wonder what it's like for Elijah to live in his body.  The older he gets the more obvious it is to me that he doesn't experience life the same way I do, the same way most of us do.  It's just different to live in his skin.  He sees things differently than I do.  As a result, I'm constantly trying to understand what it's like to be him.

One afternoon, I was trying to teach Elijah how to ride his trike.  He was interested for a short amount of time, but soon he got off the trike, ran to the garage and started to circle our vehicles...over and over and over again. He wasn't interested in riding his trike anymore...or anything else for that matter.

Let's be honest; I was annoyed.  Watching him get stuck on doing one thing that isn't really "play" is disheartening, especially since I was trying to teach him something fun. And then I realized...our vehicles provided some really amazing reflections.  I didn't notice it at first because I wasn't really looking.  I wasn't seeing things the way Elijah saw them.  I saw two cars.  He saw the coolest mirrors ever.

Elijah causes me to look more, to try and see the world through his eyes.  Stepping in his shoes helps me understand why some things are difficult for our little man.

Our boy has a hard time with curbs.  He doesn't really see them.  But open your eyes.  Can you see them?  This is the end of our yard and the beginning of the culdasac in front of our house...Do you see a curb there?...

If I didn't know that there was a curb there, I wouldn't be able to see it.  Now imagine you're a little boy who loves to run and has a visual impairment, would you be able to see that curb?  Even for me (an adult with no visual impairment), it's more a matter of me knowing that the curb is there than actually seeing it.  It looks flat in real life too, not just in this picture.

Sometimes stepping back and picturing what it's like to be Elijah is beneficial.  It makes me open my eyes a little more, it helps me understand the obstacles Elijah faces, and makes me appreciate the things I can see around me.

Speaking of appreciating, did you see my German Irises in the above photo?  I'm madly in love with my flowers around my mailbox. Take a closer look...

The guy at the greenhouse said they smell like grape jelly.  And he was right.  Mmm, grape jelly flowers. Look even closer...now go smell some grape jelly at the same time and you'll have the full experience. :)

We all benefit from opening our eyes a little more and seeing things differently, don't we?

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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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Eavesdropping

I think it must be humorous listening to me while I play with Elijah outside...

Elijah, slow down.
Elijah, watch out!
Look out, Elijah, there are roots in the ground. Don't trip.
Elijah, TREE!
Hey, Elijah, look at this...
That's a curb, little man. Step.

The truth is, taking Elijah outside can sometimes be stressful.  But, less so than it was last fall.  As he continues to learn his way around our yard, I become less stressed.  This is the reality of parenting a visually-impaired, fast, cute, curious little boy.

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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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No One Told Him He Wasn't Born in the 80's

Elijah has been grabbing his refrigerater toy off of the fridge and carrying it around the house. It's quite the feat for a kiddo who has a difficult time using his hands. And quite impressive that he can find the white handle since our fridge is white. Take that cortical visual impairment!

Usually, he will carry the toy by the handle and joyfully run off listening to the music. When he drops it, he'll often have to use two hands (woohoo!) to pick it back up. Once he has it in his grasp, he just might rest it on his shoulder (most likely to avoid using his left hand). This always reminds me of those "cool" guys who used to carry their boomboxes on their shoulders in the 80's. Let's just hope Elijah doesn't start begging us for some parachute pants! On second thought, if he were able to ask for parachute pants you'd better believe he'd own about ten pairs by tomorrow.

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Another Day – Another Doctor - Another Diagnosis

I think I'm becoming numb to doctors at this point. We've seen so many of them that we definitely know what to expect. Elijah knows what to expect. I'm sad to think that this is Elijah's normal. He doesn't know a different life - a life without clinics and nurses and height and weight checks.

Elijah met a new doctor today – a developmental pediatrician. We wanted to talk to a guy who specifically works with kids who have developmental disabilities. We also wanted to know if this doctor had any more advice for us in terms of what we can do for our little guy. We're happy we went to see this doctor. He was really nice, he knows his stuff, and I think the visit proved to be beneficial.

The doctor went over Elijah's history with us and showed us charts correlating to his development (based on worksheets we'd filled out ahead of time). The doc told us what he was going to write in his report – that Elijah has cerebral palsy, that he has global developmental delays (meaning he's delayed in every single area of his development), and that if he were to give Elijah a median age it would be about 14 months...Some areas of his development (gross motor – walking, running) are much higher and closer to his actual age of 26 months and some areas (such as his speech) are severely delayed. Yes, these are things we mostly already knew, but it's still hard to hear it from an expert. It's still hard to see your child's development charted so far below his peers.

The doctor also mentioned that he thought Elijah is exhibiting signs of Pervasive Developmental Disorder – Not Otherwise Specified (or PPD-NOS), which means that Elijah exhibits some of the behaviors of autism, but not all of them. Honestly, this one took me a little by surprise. We weren't expecting to walk away from this appointment with another suggested diagnosis. Does that mean Elijah has autism? Nope. Does Elijah officially have this PDD-NOS diagnosis? Not yet, but the doctor recommended filling out some pretty extensive paperwork to determine if PDD-NOS fits Elijah's behaviors. Am I shocked? Nope. When you've already been told that your child has brain damage and that the damage is severe, well, not much can sound as bad as that. The doctor also mentioned that about 3/4 of the kiddos he sees - that have a history like Elijah's - show signs of PDD-NOS.

Other recommendations:

The doctor mentioned re-doing an MRI. Elijah's last MRI was performed when he was 8 days old. An MRI at two years would look much different and might give us some more insight into how Elijah's injury has affected his brain and how his brain has developed. Would it change Elijah's therapies and interventions? Probably not. Might it help us understand him better? Maybe. We'd have to sedate Elijah for this study, so we don't take this decision lightly. It's something we're definitely going to think seriously about before having it performed.

The doctor also mentioned testing Elijah's hearing. Elijah's hearing was tested when he was still in the NICU (and he passed), but this doc wants to know if Elijah's brain is receiving and interpreting the sounds. Just as Elijah has an issue processing what he sees (and has been diagnosed with CVI), it could be possible that he has an issue processing what he hears. We'll definitely be performing a test called Auditory Brainstem evoked Response (ABR) (also known as a BAER), which tests both the ear and the brain. We know that Elijah hears as he's very sensitive to sound. But, is he able to understand what he is hearing? Is his brain receiving the information? That's a hard one. We don't know and hopefully this test will give us some answers.

I know it may not seem like it, but overall it was a really good appointment. We liked the doctor and feel like he's already giving us some answers and help instead of just saying, "You're doing great!" or "Just keep up what you're already doing." While those things are nice to hear, it's helpful to get the most information we can about our little dude. And while we certainly don't want any more diagnoses, they simply are labels that explain what our child is experiening based on the injury that's already happened. It's never anything new. The doctor was sweet to Elijah and he mentioned more than once how well Elijah is doing. He just stopped at one point and said, "Wow, he is doing really well." And Elijah is doing really well. Adding more diagnoses to his list won't change anything. It certainly won't change how much we love this little guy. All we can do is keep on trying to see the world how he sees it...not only so we can understand him a little better, but because I think if we could we'd make the world a happier place.

Try to look at this picture and not smile. I dare you.

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