The Decision to Pursue AAC

I got a new car in April that came with 3 months free of XM radio which I’ve been listening to exclusively as I have a guilty pleasure sort of love for bad pop songs. King of guilty pleasure pop songs? Justin Bieber. Duh.

I’ve read enough Buzz Feed pop culture lists to know he’s turned out to be kind of a punk. (Did I just lose some die hard Beliebers as followers? It’s a blog. I say what I want). BUT….ever since “Baby, baby, baby, oh” came out I’ve been hooked on the kid, I’m not gonna lie.

So he’s got this song out called “Despacito.” I don’t know what that means but I know I’m obsessed with the song anyways (please don’t hold it against me as I would like to give the disclaimer that I have NOT looked up the English translation to the lyrics but DO know I can get down with that beat down). I’m listening to it and because I’m a mom and everything in one twisted way or another makes me think of my kids…I automatically start bawling on the way to work and crying out loud that “Caleb is never going to speak Spanish.”

What? What WAS that? Who DOES that? For whatever reason, when The Biebs started singing Despacito in Spanish, I became so incredibly sad because I had this defeat flash before me that Caleb would never sing whatever inappropriate lyrics he was singing in a foreign language. Ok, ok, I know my meltdown is clearly representative of a bigger picture- a picture that when painted looks something like I don’t feel as confident about our verbal prognosis as I did this time last year. Because now we’re almost four…..and we do not have language that is functional enough to be utilized without any other communication modality in conjunction. And if we barely have English, and I don’t know when we’ll get it, is there the potential for us to ever have anything else with it?

I remember when I was pregnant with Caleb I was visiting my best friend in Alabama who was pregnant at the same time with her daughter. There was a very distinct conversation I remember having at this fair trade coffee shop over bagels and lattes about how I wanted Caleb to learn Mandarin because no matter what life and educational decisions he made, he could always make bank being hired as a consultant to business firms, banks, etc. interpreting for Hong Kong businessmen affiliates. She called me out on my Tiger Mom moment, told me I was cray- cause I was- and I hadn’t thought about it in years.

Until Despacito. I think what has been happening lately is that I’ve become resentful. Not towards Autism- I found acceptance awhile ago with that. But I maybe have been having a pity party about the fact that this incredibly intelligent, affectionate child not only has a developmental disorder that severely impairs his verbal communication but he ALSO has a neurologically based motor planning speech disorder so even when Autism wants to stand down sometimes and give this child his voice, Apraxia pops up all “Hold my beer- I’ll see about this…” and makes it almost physically impossible for my child to speak.

The pediatric speech pathologist who has the quietest kid on the block. The irony is painful.

Ok….even after that angry outburst and “woe is me” moment…I still have a good handle on optimism and acknowledgement of the fact that he is too young for me to know what he’ll be doing a decade from now. My highest of hopes is that he’ll be reading this and say “Mom, you’ve always been a spaz, haven’t you?” and that he’ll say it in whatever language he dang well chooses. But, until we get there- until we reach the point of crooning to young ladies on the other side of the mountain by singing an acoustic cover of Despacito (which will be on the oldies station)- we’re going to let a communication app help us tell our story. Because this kid has too much to say to not have functional access to a voice- even if it’s a modulated one for now. And he can’t be denied the right to that because I’m a crazy lady who cries about if he’s gonna be conducting international business deals in China or not. Like…really, Erin?

But, there it is for you. An open and honest (and partially irrational) Autism fear laid out for you. I know you have them too. And I promise you- whatever it is- you’ll get zero judgement here about it.

And Justin- if all the moons and stars collide and the universe sends this your way and you one day find yourself reading this, know that you helped me help my son find his way in the world for now. Because that day your song came on my trial XM, during a peaceful morning drive into Patrick County where I was the only one on the road, my heart opened up enough to realize the decision I needed to make for my son. 3 minutes and 49 seconds of your pop hit made me certain that it was time for AAC. And helped me remember to take my own advice and remember that there is no defeat when we redefine our expectations.

Caleb- if it’s 10 years from now, I hope you’re reading this in whatever communication modality you’ve found works best for you and that you’ve grown up to be whatever you want. Except for Justin Bieber. If you’re gonna be a Justin, Timberlake is 100% the way to go. 😉

Love and Autism,

Erin