Check it Out - Exceptional Family TV

Today is the premiere of Exceptional Family TV!  Go to their website to watch Episode 1, which is about an amazing boy named Jack.  If you're a softie like me, it might make you teary-eyed (in a really good way).

I'm excited about what they're doing with this new venture.  Exceptional Family TV's website has blogs and discussion groups to connect families and provide support.  Their main focus is a weekly online TV show.  It's not just for parents or families affected by special needs, though, it's for anyone who wants to learn more about the world of special needs.  So if you haven't already, go check it out.  They're doing a great thing here and I wanted to spread the word.  I, for one, am really excited to see other people's stories.

The website: www.exceptionalfamilytv.com
Become a fan on facebook: http://www.facebook.com/pages/Exceptional-Family/190913374032

 

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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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Why Feeding Your Kids Unhealthy Things is a Good Thing

This past weekend we had a bonfire in our backyard.  And Elijah ate a roasted marshmallow for the first time ever.  I know what you might be thinking...marshmallows are unhealthy.  And you'd be right. What you might not be thinking is that eating a marshmallow is a major accomplishment.  

It is.  An accomplishment, that is.

Last year Elijah wasn't able to bite off a piece of something and eat it.

But now he is.

His repertoire of foods is growing. And we're really happy about that...even if it is a marshmallow. I've also been known to rejoice over the consumption of french fries.  Because even though some foods aren't the healthiest options, they give Elijah new sensations and experiences and as a result he grows. He learns.  It might motivate him to self-feed (after he ate the marshmallow, he kept grabbing my hand and pulling it to his mouth! He's never done that before).

  Besides, this kid eats better than any two year old I know.  He doesn't ask me for cheetos or soda or pizza.  He doesn't even know those things exist.

I never knew I would be happy about the consumption of unhealthy food, but I am.  Then again, there are a lot of things I never knew.  

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Lighter

Since I wrote my last post, I've been feeling lighter.  I think it's because of all your comments and because this scripture has been on repeat in my brain since yesterday:

Come to Me, all you who labor and are heavy laden, and I will give you rest. (Matthew 11:28)

I'm putting things back into perspective, living life a day at a time, and trying to remember what things are really important to me.  My coat is still there, mind you, but I remembered I don't need to wear it all alone.

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My Winter Coat

I love this time of year.  The trees and plants are all working hard to give us the glorious green splendor that is summer.  Every day, Elijah asks (without words) to go outside and I comply.  We run and swing and play in the sandbox.  It's wonderful.

And yet, I feel like I'm still wearing my winter coat. I feel heavy, weighed down by this life.  My vision is clouded; it's hard to see the positive sometimes.

My head and my heart are trying to get on the same page.  In my head I know Elijah has major delays, but it's hard to get my heart to believe it.  I'm in a constant struggle inside myself...to stay positive and rejoice over every single milestone... and at the same time trying to accept our reality for what it is.  It's a reality that isn't what I had quite hoped it would be.

I feel so burdened and that feels heavy.  Don't get me wrong - it is not a burden to be Elijah's mom.  That is a blessing.  Trying to figure out how to teach and reach this little boy; that is hard.  It's not sunshine and roses.  It feels like winter.  And it feels that way because I believe in our son.  I believe that he is capable of learning, of doing, of becoming.  And, while that's a wonderful thought, the magnitude of trying to reach him with all of the things he has working against him is definitely heavy.  So, while you might not see me wearing my winter coat anymore, I'm still wearing it.  My heart is sporting a parka.

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My Idea of an Excellent Morning

 Watching my cup of chai tea steam...

Drinking cup of chai tea while my two men play outside in their pajamas...again

That's my idea of an excellent morning.

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This Place Looks Amazing!

There's been a lot of buzz lately about Morgan's Wonderland, the first amusement park designed with special needs individuals in mind.  The park's grand opening is tomorrow. Hopefully we can take Elijah someday; I think he would love it!

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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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A Possible Future Profession

Sometimes you have a take a few steps back to see that things are changing.  Because, things are changing.

Upon taking Elijah outside this spring, it's apparent how much better his balance is.  He runs down our little hill like it's no big deal, which is possibly the cutest thing I've ever witnessed.  Being outside fills him with such joy that it's hard not to feel it too.

Unfortunately it hasn't been all joy around here, as temper tantrums have been out of control lately.  He's getting his final two molars currently, so we're hoping that he'll be a bit more agreeable once he has his complete mouth-full of teeth (and then we won't have to worry about teeth until they start to fall out!).  There's more to his temper tantrums than just teeth, of course - we do notice that Elijah is less likely to fly off the handle when he's able to communicate with us.

Although Elijah doesn't have any words as of yet, he does definitely communicate.  He continues to direct our attention multiple times a day.  His most common request is to ask to go outside.  Sometimes I'll see him trying to open the door to our laundry room (which leads to the garage).  He'll then come touch me and walk to the door and try to open it again.  The words aren't there, but his voice is loud and clear.  I have such hopes when it comes to what he'll be able to communicate with us as he grows and develops.  There's so much I want to know about what he sees and experiences and it'd be amazing if he'd be able to tell us!

So, we're busy.  Busy playing outside.  Busy trying to communicate.  Busy attempting to curb our little man's frustrations which manifest themselves in the most unpleasant ways.  Mostly, though, we're busy watching him play.  Elijah seems to be having more fun with toys within the last few months.  He plays with his toys more appropriately.  Rolling cars on the floor, drumming his drum, dancing to music.  And while he plays, he learns. And,well, so do we.

His favorite toy these days? The drum. I'm pretty sure you'd spare some change for this little guy if you saw him playing on your street corner.  You would, wouldn't you? ;)

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