Day 2: of “Advent Stories“
In this written piece, Emily Billings spills her heart to share the joys and pains of raising a son with autism. She reflects on God’s promises, inviting us to let go of the lives we wish we had to embrace the God who is with us.
His Promises Hold True
“Well, he doesn’t look autistic.”
“Yeah, I thought something was wrong when he would sit completely still to watch a full length movie. He just likes TV too much.”
“He’s going to do so great! He’ll be fine! I had a dream the other night that he went to college.”
“My cousin’s friend had a kid diagnosed with autism, he’s completely non-functional at 14. Have you looked into vaccines? You should really research that.”
“So is he like….high functioning? Or low functioning?”
“I’m so sorry.”
“Abe had a great day today! He said ‘mommy’ and park’!”
I nodded and smiled at the teacher in excitement, put Abe’s backpack on my back, and picked him up like I do each day because he will whine and cry if I don’t carry him out of preschool to the car (although he loves sprinting in all by himself–not as much a fan of the leaving). My eyes fill with tears as I carry him, ashamed at my pessimistic heart-but full well knowing my boy didn’t say “mommy” or “park” but was vocalizing some favorite stims while he was building blocks. I think back on the day he was diagnosed a year and a half ago. The developmental pediatrician officially diagnosed Abe as having “level 2” autism (he wasn’t showing good enough signs to be a level 1 but also wasn’t bad enough to be considered level 3) and she said that Abe had so much potential, and that we simply had to give him time to show us what that looked like. Now I know kids diagnosed early at level 2 are “wild cards” and there is simply no way of knowing the trajectory of their development. His previous pediatrician said to me in a cold sterile exam room:
He didn’t look at me when I said his name, and he can’t say “mama” or “dada”. He definitely seems autistic. He may speak, but don’t get your hopes up. He may have cognitive impairment, keep an eye on that. I can’t promise you anything. You’re looking at years of therapy. Here’s a brochure for nationwide children’s behavioral psych department for an official diagnosis. I’ll see you in six months.
She shut the door tersely as tears filled my eyes and I watched Abe line up a small stack of children’s books on the floor.
Since then, Abe has worked incredibly hard and made amazing progress. I remember getting him to say the number 3, as my husband held him on his shoulders ready to run and counting “one, two…” and hearing a little voice “fwee”! We screamed and ran and tickled and celebrated like he had won a gold medal. Each small milestone a result of hours of labor and love.
Yet, I still cry in the car after preschool pickup, because even though I know he can count to 10 if I prompt him, he has very little spontaneous language at 4 years old. In the last six months he has started biting himself and others out of frustration. He has severe food allergies so diet is constantly discussed. Questions about his future are at the forefront as I battle to sit in the moment and see him for who he is. We are tired. Our desire is so strong to communicate and meet his needs, and he is getting more frustrated that he can’t always tell us.
I need to be ready for the fact that he may never have independent language. Just accept it.
But he says phrases like “extraordinary!”from his favorite Planet Earth episode and sings “You’ll be in my heart” from Tarzan as he paces around carrying his beloved Bluetooth speaker.
Watching him learn and grow is one of the greatest delights of my life; it is hard to put words to the feeling of seeing your son do something you really wondered if he would ever be able to do.
But it’s also hard to put words to the feeling of longing for something he might never do.
Those are the two lanes that special needs parents travel this journey in: sheer joy and complete uncertainty. One has the scenic view of patience and hope and gratitude for the littlest things – and all of those sentiments are so real and genuine, you never want to leave that lane. But it’s so easy to drift, too easy; and often without warning you can find yourself traveling down the road littered with potholes of bitterness and unending questions – there are just so many questions– and your journey goes from pointing out the beauty around you to gripping the wheel in silent anger. It’s usually when my hands are clenched tight that I start to wonder again why we are on this road at all, and that’s when I wish it was different. This certainly wasn’t how I envisioned motherhood and parenting.
I can’t promise you anything.
When I reflect on this season of Advent, I think about how God wove so intricate a plan filled with promises that all led to the incarnation of Jesus. Although when the promises were received they often are not what anyone expected. Sarah wanted children in her youth, God gave her Isaac when she was 100 years old. Jeremiah wanted anything but the work of a prophet, God gave him words that would be cherished and studied by believers for the rest of earthly history. Zechariah wanted a son, but doubted God’s ability to do so. God fulfilled his promise in giving him John the Baptist, who would prepare a way for the coming Christ. As a woman I cannot help but identify with Mary, who was the vessel of the incarnate Promise himself, Jesus, her son. How did Mary envision his life, what were her hopes for him, for his future? God promised a Messiah, a deliverer to save broken people in a broken world. But this Promise came in the form of an infant instead of a political conqueror-one who would know our every sorrow and joy, pain and pleasure.
If I am learning anything from God’s narrative and history of redeeming a broken people in a broken world, it is that what we want or expect is not always a great indicator of God’s perfect plan, for our lives and for His glory. And at some point we have to decide what gets our time, our energy, and our prayers: what we want, or what God is actually doing.
How we answer that with our lives will change everything – perhaps most importantly it will change how you see your day to day life in relationship with Christ. It may be impossible to see right now, but one day at a time, regardless of what you are carrying and even when it is so hard the tears far outweigh hope, you’ll still be so thankful God chose you for something you could never do on your own. His promises held true then, and they hold true now.
When I focus on what is in front of me, what God is actually doing, I am able to see the beautiful miracle that is Abe. I am able to see a sliver of how God created his incredible mind and unique perspective of the world. God never promised to give me a child who looks and acts like everyone else. Instead He is chipping away at my sinful heart and making me more like Jesus through the process of raising my son.
I don’t know what Abe will be like on his fifth birthday, or tenth. I dream of one day celebrating the incredible progress that every special needs mom holds a sliver of a vision of, but I live mostly in the day to day, because there’s enough to both celebrate and cry over on any given one. But I do know this, on the days I want something different, I remember that one day, everything will be different. We live with the promise of Heaven, sealed by the one thing God did not take from his son.
Until then, I’ll keep counting the ways that being Abe’s mom became one of the best things that ever happened to me.
by Emily Billings