Autism: our mess, God’s message

The emotions of packing up and leaving have made my mind raw, and I’ve had random crying spells sprinkled in among times of profound gratitude. There’s nothing quite like loss to make you appreciate what God has gifted. And there really is a sense of loss—a counselor once explained that it’s called “Ambiguous Grief” because no one has actually died and in theory we can always come back and see people again. It’s not the same as when my dad died back in 2016. But we all know it won’t be exactly the same ever again, even when we do come back, and until then Kenya is really far away and FaceTime is not the same as face time. But I digress. 

After an amazing week in Oregon, we are now back in Central Ohio for our last hurrah, hanging out with our adult kids. And when people say adult kids are the best, they aren’t kidding! Anya and Everett are killing this adulting thing, hosting Omara and Isaac and feeding us all for the week. Anya even woke up early and made a gluten-free lunch out of nothing for Omara to be able to attend her last day of school while I slept in! I mean for real—if you don’t have adult kids yet, you gotta get yourself some! 

As if it’s that easy, right??? As if you don’t have to live the daily grind for 18 or 22 or 29 years first, birthing and feeding and bathing, responding to temper tantrums and entitled toddlers with just the right mix of firm direction and love to keep from raising brats but not squelching spirits. You have to teach generosity and grace and kindness when you don’t always feel graceful or kind, let alone generous. Battles over friends, over screens, over clothes and boyfriends and parties. And don’t even get me started on school-work and chores.

We had our first child, and she was a feisty one. I thought my head might explode one night when I had to send her to bed early and she paused at the door to look me dead in the face and say lightly, “Fine. I’ll go to bed now, but don’t expect me to be any better tomorrow!” But after many tomorrows, she did get better, and she is now every bit the strong, generous, kind woman I knew she would be if we could just survive the younger years.

We had our second child, and then our third and fourth, and we felt pretty confident in the whole parenting thing. We knew how to swaddle, and make baby-food, potty train, and not fight every battle. We knew to be consistent, and to be united as parents. We knew to love one another and to hug our kiddos and to praise and to encourage. We were good enough for numbers one and three and four-not to say they won’t someday need counseling for all we did wrong, but 6-9 months of therapy should be enough, you know? Nothing life-long. 

But that second kid- our ‘bruised reed’ as I often thought of him? He was a mystery wrapped in an enigma topped with a dollop of “what-in-the-world.” Our strategies didn’t work, and those haunted eyes told me how deeply miserable he was. I can remember the merry-go-round that didn’t feel very merry; anger, compassion, hopelessness, and then back to anger. Day in and day out. Having him come home with clothes cut up with scissors but unable to explain why. Lies and deception over silly things. Endless sneaking of devices so extreme we finally had to lock them up permanently. Destructive “investigating”, like how much sand could fit in the drain before it clogged? How many rolls of toilet paper would it take to absorb all the water in the toilet? What happens when you mix all the cleaning supplies? Nails in the side of the tires to avoid going to church, neighbor’s houses broken into to play Nintendo, melted candles and fires. Sitting in the hallway for hours to prevent sneaking out of bed, only to wake up too early to the fact that he’d just tricked us into thinking he was finally asleep and really he’d been up all night watching cartoons with no sound or subtitles—just the visual stimulus, all night long. And the homework—oh.my.word. Why did I feel the need to stick with spelling lists that would take us a literal 4-6 hours to write out 3 times each? 

I share this not to shame him. This isn’t about him and his troubled childhood, you see, but about me and my troubled motherhood. I struggled as his mother. You see, I loved him—a deeply committed, grit-my-teeth-and-swallow-the-bitter-pill sort of love that would advocate for him at school and fight for him on our mission compound. That would sit beside him for 4 hours helping him focus long enough to write out “believe” 3 times at the cost of my sanity. A love that would bake his favorite meal for his birthdays and hug and kiss him when he was hurting and would tell him I believed in him. But it was the sort of love that you don’t actually believe in when you’re 14 and are first told that love is a choice and not an emotion. I loved him, but there were many years when I didn’t like him very much. When there was no actual joy in being his mother. In the depth of the hard times, I can remember sobbing to a friend, thinking “If this all ends in suicide like it seems it will, I wish he’d just get it over with.” I don’t think I said those words exactly out-loud, because…really. What kind of mom thinks those things? I didn’t want him to die, I just thought it was inevitable, and the cost was too great for it to end that way.

A year later he was diagnosed with autism, and some of the missing pieces clicked. The behaviors were no more pleasant to parent, but we had a better framework to understand them. New language to describe them to ourselves and to others. Less judgement from the peanut gallery, perhaps. But then people started saying things like, “Kids with Asperger’s have such brilliance. What is his special gift?” as if he was Rain-man and would be winning us the lottery. Or, “special needs kids are always so loving in their own way” when in reality it felt like it was very much a one-way street with little reciprocal love coming to us.  I shared before how Chad would tell him that God was building his testimony—that the harder things were for him, the greater God’s glory would be seen in him when he made it to adulthood. All I could see as I nodded in mute agreement was him living in our basement, playing video games and talking at me about Florida-crime Reddit threads until the executor of our will made him move. 

But you guys, as he matured and found welding to give him a sense of purpose    and confidence, and as he started to sleep better and feel less anxiety, he has blossomed. He laughs at jokes. And he makes jokes that are actually funny to the rest of us as well. He takes pride in what he has to offer. He understands his neurodivergence and can talk about his challenges. He responds to advice and correction and shares appreciation and affection. And I love him! Not just the “I do because I must” kind of love, but the heart swelling with pride kind. He has moved into his own apartment and he too is killing the adulting thing. He’s running to the store because he’s out of ginger for his stir-fry, and taking his medications, and he’s found a job. He appreciates when I buy him a doughnut just to say I love you, but he fully expects to pay his own rent and gets excited when chicken goes on sale for $1.99.

His kitchen, which
contains his shower! 

So why am I sharing this? Because as much shame as I feel deep down for how I plodded through his childhood, I know that I’m not alone in those feelings that can come and go. Maybe you weren’t as bad as I was, but I know you’ve wondered if you’re going to survive this phase or that. These little bundles of joy that God gives us…they’re HARD.WORK. And you’re not a bad mom or dad to be exhausted. To wonder if it’s worth it. To some days find it easier to count the losses than the blessings, because it is both. It costs us years and tears, and I just want to say that it’s real. It’s hard. You’re not crazy. And keep plodding because it IS worth it. It DOES get easier. The blessings DO outweigh the loss in the end. You got this!

And I want to also remind you; when it comes to us and our Abba Father…we’re the ones driving Him up the wall. It’s us throwing fits when He takes away the ‘special’ rock to give us the ice cream cone. It’s us looking ridiculous when we reject what He has planned and insist on dressing ourselves. It’s me that can be too prickly to like, and it’s me that He loves anyway. You, who don’t say thank you and who act entitled to His care, that Jesus plodded to the cross for with all the love He clung to with grit and determination. Even when we weren’t likable. Even when it wasn’t fair. Even when love seemed too costly. It’s easy to think we’re easy to love and quick to mature. Parents who, like us, wrestle with kids who struggle, understand unmerited love and grace. We understand that we are the strong-willed children who stomp our little feet and want to hold our own hand across the streets of life, not rosy-cheeked angels who say, “Yes, father dearest.”

He loved us unmerited…we choose to love others who are also undeserving…and in that, our mess turns into God’s message. It took my strong, resilient, reed of a son to teach me that.

PS- posted with permission from Ethan, who said, “Ooof, I forgot it was that bad, but it sounds about right. Also, the Florida-crime thread is on YouTube, not Reddit.”