Ten years ago, at my son James’s three-year well visit, I decided to be honest with his pediatrician about the delays we saw and the concerns we had. I wrote this at the time: “He doesn’t talk, but he used to. He doesn’t play with other kids. He doesn’t react when his dad gets home from work. Sometimes, even though he’s in the room, it’s like he’s not really with us.” At that appointment, she checked for skills he should have had at that point. She asked him to draw a circle. He couldn’t. He couldn’t even hold the crayon. She asked him if he was a boy or a girl. He said nothing. She asked me if he could dress himself. He couldn’t, but he did love to undress himself (a problem since he was not even close to being potty trained). At the end of that appointment, she gave me a number to call at the school district to set up an appointment for more testing.
A couple months later, my husband Lee told James to do his “best worst” as we walked into the elementary school where James would go through an official evaluation. Our prayer was that they would get an accurate picture of what he could do and not do. We met with a speech therapist, occupational therapist, and psychologist. After an hour of playing with James and asking us questions, they left the room. When they returned, the psychiatrist sat down with us while the SLP and OT went back to playing with James. She said, “Based on his testing today and our observations, we believe James has autism.”
It’s been 10 years since that diagnosis day. Ten years of therapy, special education, nights with very little sleep, diet changes, trying new medicines, and adjusting our expectations for what life should look like as we parent our 13-year-old son with level 3, profound autism.
There have been many, many days I have echoed the prayer of Habakkuk, “How long, Lord, must I call for help and you do not listen ?” (v. 2a, CSB). And although Habakkuk was praying very different prayers from what I pray now, God’s answer to him brings me hope as well: “Look at the nations and observe—be utterly astounded! For I am doing something in your days that you will not believe when you hear about it” (v. 5b).
Look and observe.
The progress James has made may not seem like progress to most. But when I really look and observe, I see miracles. Just this week we walked into our church’s sanctuary, James wearing his noise-reducing headphones to block out some of the sensory input, and his anxiety stayed low enough for us to say hi to friends before it was time for him to go to his class (where, because of the disability ministry our church offers, he’s able to hear the gospel message week after week in an environment where he’s comfortable). Every time he answers yes or no, every time he skips out the backdoor to swing independently, every time he practices and practices a new skill like using a spoon or drying off with a towel, I “look and observe” what God is doing in his life.
Be utterly astounded.
As thankful as we are every time we see him gain a new skill, if James never progresses beyond where he is now, God is still at work. He’s at work not only in James’ life, but in my life, our family, and my ministry to other special-needs families. James teaches me more about God’s love for me than anyone else I’ve known. I love him because he’s my son, not because of anything he accomplishes or goals he meets. God loves me because when he sees me, he sees his Son. Even all my accomplishments fade away when compared to what Christ has done on my behalf. As Paul wrote, “Because of him I have suffered the loss of all things and consider them as dung, so that I may gain Christ and be found in him” (Phil. 3:8b-9a). I am “utterly astounded” by God’s love and care over us day after day.
When I look ahead
As we sat in that room at the elementary school 10 years ago, we couldn’t have imagined where we’d be now. Even getting an autism diagnosis only helps so much, because every autistic person is so different. There was no way to know then where we’d be today. But as I look ahead at the decades to come, I take strength from all God has done in the last 10 years.
A refrain I see in the Old Testament is to remember and tell—remember what God has done and tell others about it—reflecting and reminding, observing and articulating. These practices, over and over again, point me to the hope I have in God through Christ. I know he will give me strength to face our next big challenge because he hasn’t failed us yet. I know he will give me wisdom to make future decisions because he’s been guiding me each day. I know he will provide for James even when I can’t because I’ve seen him do it all along.
I turn again to Habakkuk as I reflect, and like the woman in Proverbs 31, I can “laugh at the time to come” not because I have everything figured out, but because I don’t have to. I can “take joy” because He is my strength.
. . . yet I will rejoice in the Lord;
I will take joy in the God of my salvation.
God, the Lord, is my strength; (Hab. 3:18-19a)