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Monday, May 31, 2010

How to Be Realistic While Holding Out for a Miracle

Monchichi was twelve months old when he really began to babble. 

“mmmmmm”

“bababababa”

“moooooooo”

They were sweet sounds for sure, but I took them for granted, because let’s face it, all kids babble right? 

Had I known then, that just a few short months later silence would overtake him and plunge us into years of misunderstandings and grueling guess work just to figure out what it was he needed or wanted, I would have treasured each and every syllable that passed through his perfect baby lips.

It wasn’t until October 2006 that I heard the sound of his speaking voice again.  We sat on his bed, he and I, absorbed in Dr. Seuss’s “Green Eggs and Ham,” and as I read the book for the fifth time in a row that afternoon, I heard a distinct “how” coming from my non-verbal child.  It took only seconds for me to realize that he was trying to say “house,” mainly because he kept pointing at it on the page.  “Not in a house,” I said.  Sure enough, he repeated “how,” clear as day.  I read it again, and he grinned as he realized I understood what he was getting at.  I tried not to startle him with the sudden waves of joy that crashed over me;I hugged him tight, careful not to crush him, and did what any proud and hysterical mother would do in similar circumstances:  I told the whole freaking world.  I called my parents, my husband, his parents, my sister, my best friend, and probably the greater part of Los Angeles and Orange Counties because This. Was. Big. News.

It was the first time since he went silent that I allowed myself to hope, just the teensiest, tiniest bit, that he might one day talk and tell me that he loves me, and that I make the best banana pancakes in the world.  Or maybe he would tell me to go straight to hell.  I. Didn’t Care.

I just wanted him to talk, and at this point, “how” was the closest thing to a miracle we’d ever had.

Three and a half years later, my son is still considered non-verbal.  He didn’t wake up one morning and begin to speak in complete sentences.  It’s happened before, with other kids, and my mom swears it will happen with her grandson one day, but I’m not convinced that it will be that easy, especially when I see him struggle to purse his lips together and create a distinct “p” sound during speech therapy.  He has come a long way though, adding over 100 verbal approximations that can be understood by a trained ear.  You would recognize his “yeth” or “no,” and most of his color words (“ur-el, for purple and “el-ow” for yellow are my two favorites) but for the most part, it takes someone who really spends a lot of time with him to understand what he’s trying to say.  We’ve used a Picture Exchange System with him for years to supplement the approximations, but he’s outgrown the simplicity of this communication tool, and is no longer interested in giving us cards with pictures on them. 

He wants to be heard.

I want him to be understood.

Which brings us to the present.  At eight years old, Monchichi deserves to be able to express his ever-changing and developing needs.  And he has yet to wake up and tell me “I could really go for some of those banana pancakes right about now, mom.”  So we have to get realistic about the current development of our son and what we have to do, as his parents, to meet his needs; without giving up hope for that miracle my mom keeps talking about.

I know we have to buy him a communication device.  Something that will speak for him.  Something that will give him the opportunity to “talk” in a more efficient way.  Something that will take the place of the words that are meant to come out of his mouth, but that just can’t find their way. 

And this is a big deal to me.  Because, of course I will not stand in the way of my son’s ability to have language at his disposal.  Isn’t that a God-given right?  What I do struggle with is the idea that purchasing this gadget, in a way, forces me to admit that we are no where near where I allowed myself to imagine we would be at this point in his life.  And I feel that in order to accept this technological assistance, I have to sort of admit that there is a great big really possible chance that he may never actually talk. 

Crap. You know?

So here I sit, researching tools that could help Monchichi live a higher quality of life, giving him the words he cannot utter himself, because he deserves it and needs it and we’re going to do everything in our power to give him whatever he needs to have an unbelievable life filled with fair chances and real opportunities.

But I would be lying if I didn’t admit that as I mentally compare which device would potentially work best for my beautiful son, my heart dares to yearn for the day he looks me square in the eyes and says “Go to hell mom.” 

 

4 comments:

Marcy of The Glamorous Life said...

Beautiful.
Again.

Katrece said...

I L-O-V-E your blogs. Lauren, is 10 and just started using a device at school. Unfortunately, it appears that since it's introduction she "lost" her voice, depending on the device to talk for her instead of using her own words. Hopefully this is just another short-lived phase.

BTW, thanks for the links about the Apple apps. Looking into something like that never occured to me.

Burgin Construction said...

I wanted to ask you if your son goes to school? If he does you can check into them paying for a communication device. We have also found that Apple's Itouch has Sign Language programs on it similar to PECS and he can communicate that way.

I have 2 boys ages (13 & 9) both with special needs. I know where you are and remember we need to stick togeather.

4timesblessed said...

I was going to suggest the apple Ipad