AUTISM: A GIVER AND A THIEF

As a five year old autistic, he HAS agendas. And his mom, dad, brother, sister, teachers, and pets are repeatedly throwing wrenches in them. Agendas include (but are not limited to) measuring crayons throughout the house, lining up Hot Wheels down the staircase, placing stickers in strategic locals (on mom’s rearview mirror, for example). Though the ‘novice’ might interpret David’s plans as misguided, the scheming is very calculated, methodical, and purposeful. And, (dare I say it) …weird.

People often ask me, “isn’t autism like ADHD? Or is it ADD? PDD? XYZ? Or is it PDQ?” All of those ‘medical’ acronyms begin sounding like alphabet soup. And, unless you’re in the “know” of your childhood behavioral/socio/emotional disorders, it’s easy to assume they are all similar.

I have always explained autism this way; if attention deficit disorder (ADD) is the inability to focus, autism is the polar opposite… being SO entirely focused that pulling away from an ‘agenda’ is a herculean feat. Hence, we receive a “NO THANK YOU!” from our son more often than we would care to.

And there is another downside to this “drive” (if you will). There are times I resent it. Dave can be so engrossed in an activity that a spontaneous show of affection from us is not only unreturned, but unwelcomed. At times, kisses are rebuked altogether. As a mom, it rips at my very soul. I feel rejected and forfeited for some unknown agenda. Though his verbal ability is limited, he can clearly manage a “bye-bye, mommy” and a “no thank you” when he wants to. Though David can be very affectionate, it is on his whims.

As a parent of an autistic, I’m seasoned to this. I saw Rain Man when I was fifteen. I remember Raymond leaning in to his brother, ever so slightly, and they “touched foreheads.” That’s what I remember. That image in the film was indelibly, prophetically, branded. Twenty years later, I found myself doing much the same thing... looking, working, and praying for any sign that my son is “in there.”

Though his verbal abilities are limited, we do get glimpses of who he really is. The way he crosses his legs when he sits, the way he swaggers like a young man, his tenderness to us and to things he loves… I see it. And when I see it, I want to cry with joy. But those times when he gets entirely engrossed, when I know he’s lost and words won’t pull him to me… when I hug him and he pushes me away to finish his puzzle… it can become too much to bear.

And when you crumble over your kids, you go to Him… and I do just that, a whole, whole lot.

As if parenthood were not hard enough, right? As if parenthood were NOT hard enough, my family was dealt this awful hand by God. Consequently, this is what echoed in my thoughts for several months after my beautiful boy’s ASD diagnosis:

“Father, I would have rather have had a child who was blind, deaf, ‘whatever’, than autistic. Any other disease or disability, I could have handled it… because I would have been able to communicate with him. I would have been able to learn my son’s favorite ice cream flavor… his deepest fear, his funniest joke, his favorite shirt, his favorite story, if he believes in Santa, if he is in pain, if his sock itches … I could’ve had countless conversations with a brilliant, beautiful little boy and learned so much more about him.”

Autism robs families of this. It robs parents of knowing their child’s fears…of knowing their child’s favorite ice cream flavor. Autism takes away countless conversations that would have happened. Autism took and took and took, from my beautiful son, from my beautiful family … and it took and gave nothing back to me…. IT, this monster, gave nothing back to me.

..So I hit my knees...

“SO, Father, you did this?? You GAVE MY SON ASD? YOU…you made him this way…and he is growing up and I don’t know him! He’s having a childhood, my son is HAVING his childhood and I’m MISSING IT because…of AUTISM! He only comes to me when he needs something! He spends his time doing things that might be meaningful to him, but seem ridiculous to me! He only lets me kiss him when he wants it! He might be incapable of knowing just WHAT we do for him! That my husband and I know what he needs and he seems oblivious to what we do! When will he love (or even acknowledge) who we are and how much we love him? Father, my beloved son CANNOT acknowledge me!

I love him so much!
I love him so much!
I love him…”

And I was arrested in the thought… the very words that descended into my ignorant, arrogant, selfish mind… in the midst of my wallowing, I got it…

“I LOVE YOU, TOO…and now, …you know…what this GAVE you…yes, this will ‘take’…this ‘fallen world’ will take… this is a gift from ME… the One True God…..”

Oh… Father…I know… and I think I have it….

Autism taught me to love not through words, but through gesture. It taught me to love without any expectation of reciprocation. It taught me to love unconditionally. It taught me to love without assumption. It taught me to love boundlessly, without judgment or hesitation. Autism has taught me that my paradigm of what “love” truly is could transcend and morph into something bigger… something divine. Ultimately, autism has taught me more about the nature of whom He is… that He feels the same towards us… His boundless love is often unreciprocated, unrecognized and unacknowledged (unless there is a fear, need or want).

For everything that autism has taken… for the formidable obstacle it has been… I’m glad. Not always, of course, but I accept His perfect will. As a parent, we must accept that our ‘hearts’… that our ‘little pumpkins’… will walk around in a fallen world without us always being there. I’ve come to accept that my David will possibly live his life without being able to tell me what he is most afraid of or that he loves strawberry ice cream the ‘most-est.’ As a mom, I have finally reached a peace with that notion because I know my family will never bare those struggles alone.

And for what autism might ‘take away’ from all of us, I appreciate what it does give back … and I am closer to Him, because of it.