November 25, 2014

Lessons in Love From Raising a Child with Asperger's

When my husband and I found out our first child would be a boy, we were thrilled. We created a magazine-worthy nursery, read What to Expect When You’re Expecting from cover to cover, and practiced putting the pack-and-play together in less than the two hours it took on our first try. 

I’d known since I was a child myself that I wanted to have kids, and lots of them. I imagined myself as the quintessential soccer mom with four boys lined up in stair-step fashion like the dutiful kids in The Sound of Music. I hoped that my coming boy would grow to be a strapping young man full of wit, sociability, and athleticism like his father, and, most of all, a gentle warrior for Christ.

Babies don’t come with manuals, and I learned soon enough that babies don’t go by the book, no matter how many we read and or how much we research or how much we plan. No, babies don’t go by the book, and neither does God. This also I learned soon enough.

When my little boy turned two, he had no words and we began to worry. By the time he turned three, we knew something was atypical, beyond a hearing issue or a developmental delay. At 3 ½, he was diagnosed with autism. That night I saw my husband cry for the first time.

When I carefully laid out the nursery and prepared my birth plan, the possibility of a disability hadn’t been even a thought in my mind. I hadn’t considered that God might have different plans for me than I had for me, for my son, and for our family. I also hadn’t considered that plans involving pain, difficulty, and uncertainty might be one of the best things to happen to me, because these very things would teach me about love and about God’s love.

But before I could understand lessons of love from pain, I had to work through my unmet expectations with God. Autism challenged everything I’d ever thought of Him. It challenged me to consider how He could allow disability or, if I had done something to cause this, why He didn’t intervene.

As I wrestled with God through tears, my little boy, only capable of repeating movie lines verbatim, walked around constantly chanting his memory verse: “Everything God made was very good” (Genesis 1:31). From the mouths of babes. Through that simple child-sized memory verse, God spoke to me over and over: “This child is not what you expected, but he is a beautiful gift to you from Me. Receive it. Receive him.”

As I released my unmet expectations and opened my hands to receive the reality of what God had given me, I began to learn about God’s love for me. For most of my Christian life, I suspected God’s love for me was based on what I could do for Him, and I performed for Him. I was the actor, He was the observer. When my plates were spinning in succession, I assumed I’d earned love. But when the plates were crashing on the stage, the condemnation assured me that God couldn’t possibly love me.

My son could not “perform” in all the socially acceptable, typically developing ways that other kids around him could. Because he struggled to communicate, he grew frustrated easily, which led to public meltdowns and awkward situations. Many, many people did not know what to do with him or with me. This was extremely difficult for me, because as a performer for love, his disability directly confronted the idea that he reflected on me and my performance as a mother. Would I love him and value him for who God created Him to be or be forever frustrated at his differences and what others perceived as failures? Of course I would love him; he is my beloved son.

This was my first lesson in God’s love, because He turned it around to my own heart. In reality, He showed me, I have a disability as well, and it’s called sin. I am unable to perform in order to earn God’s love and reflect well on His holiness. He could be forever frustrated at my failures, but He is my Father and He loves me apart from what I can or can’t do. Instead of forever frustrated, because of Christ’s sacrifice, He is forever patient and gracious with me. My son reflects back to me the depth of God’s love.

My son is now 11 and he's been more precisely diagnosed as having Asperger's. Disability has released some of its grip but not all. There are difficult moments still and, as now that he's entered the middle school years, we pray fervently for him. I so want him to have a good friend and to find a passion and to know the deep love of God.

But even in this quiet, pained sensitivity that remains, I see a picture of how God loves. As a mother, I feel things for my son perhaps deeper than what my son feels. I want the very best for him. I grieve when he hurts or doesn’t understand the social cues that everyone else understands that are causing him problems. But I carry those hurts for him even when it hurts me too, because I love him.

Just the same, God the Father grieves when we grieve and hurts when we are hurt. And perhaps most importantly, He doesn’t run from our pain. He can handle it all. We can lay it all on Him and He carries it for us, because He cares for us.

I don’t know what the future holds. I learned long ago to lay my perfectly-planned expectations aside and hold all things with open hands. But one thing I know: God was right when He whispered to me that this boy would be a gift. I received him as such, which has opened my eyes to see the complexity of God’s love. And I will continue to receive, enjoying these blessed mysteries that I have been invited in to as a parent of a child with a disability. 

Needing encouragement, Mom? Desiring God has recently published a book called Mom Enough: The Fearless Mother's Heart and Hope, to which I have contributed, alongside Gloria Furman, Trillia Newbell, Rachel Jankovic and others. You can get it for free in pdf form or purchase a paperback version. May it bless you in your mothering!