Advice from a mom of an atypical child

4 mins read

My 7-year-old son and I are sitting on the kitchen floor. I calculate how many minutes we have until we are late for school as his foot pushes into the sock my hands are holding open for him. “Mom, I don’t know what to … do at school,” he says breaking my concentration.

“Yeah, buddy, I know,” I say to him carefully. “Everyone gets confused sometimes.”

“No, mom,” my brown-eyed boy says looking up at me. “Everyone else knows what to do at school. I am the only one who doesn’t.”

I can feel my heart beating faster as the tears fill my eyes. I wrap him up in a hug buying myself a few seconds to gather my thoughts. My son is a sensory seeking kid so I know the hug will calm him. When I pull away I say, “You know, bud, you can do a lot of things that Mommy doesn’t know how to do.”

And I mean that. I remind him about the scooter he helped me assemble. The directions were too confusing for me, but he didn’t even need the directions to see how it all fit together. He’s great with puzzles, and he’s the family comedian. I joke that he’ll be a hit with the ladies because his obsessive tendencies (which make him neat) and his love of routine (which makes him dependable) are just what women want in a partner.

I wipe my eyes and send him off to brush his teeth. This is the first time my son has ever articulated to me that he feels different. I’ve known he was different since he was a baby. I knew it when he hardly slept and when he had entire events I struggled to call tantrums. (I now know those events are called sensory episodes, but I didn’t know it then.) Any time I brought up my concerns to well-meaning family or friends they assured me he was “just being a boy” or that having an older sister, who was happy to speak on his behalf, was slowing his speech development.

Eventually our son was evaluated by the school district. My 4-year-old stared blankly as the woman asked him where his mouth, eyes and ears were. She asked him a second time and he ignored her, turning to ask me for a snack. I knew he didn’t know where his nose was. He didn’t even understand what she was asking him.

Hearing that my 4-year-old had the language abilities of an 18-month-old was heartbreaking, but it was also validating. I wasn’t being dramatic, and my mother’s intuition was right. Our son began receiving speech and occupational therapy and special education services. It was a relief to me that he was receiving the services he needed. We identified the problem, and now we were working on the solution.

But my relief was short lived. For the next few years, I found myself asking his therapy providers the exact same question over and over. I wrapped the question in different packaging, added or deleted details as needed, but the core of every question was, “How long until he’s completely healed of this?”

I was pushing my son too hard, beating myself up for not doing enough and carrying around an immense amount of anxiety looking for the end of the finish line. When a trusted speech pathologist told me this was going to be a life-long marathon and not a one-year sprint, I was able to accept my son and his abilities as they are now. With that acceptance came peace.

You learn to pivot when you have an atypical child, and there are times when I’m more adept than others at pivoting. For example, I had no problem finding a new barber when our usual one grew out his beard. (An abrupt change in the familiar facial hair coupled with my son’s disdain for anything on faces made it a no-go). That was an easy pivot. I did not pivot as well when the new barber whispered to me, “My daughter works with kids who have autism, too.” My son does not have autism, but that was the first time a stranger expressed to me they could tell he was different.

When I am having a hard time pivoting, I cry. For a long time those tears came wrapped in shame. I got angry with myself for being sad because I felt it meant I was betraying him or subconsciously wanted him to be different. Now I know the tears mean I’m experiencing a moment of grief. Parenting requires grieving. Every child, no matter how typically they develop, will venture off the path his parents have neatly charted out for him. Maybe he’ll be born physically different, or maybe he’ll make a choice not quite accounted for in the perfect master plan. When our children have the audacity to be their own people making their own choices in their own lives, it hurts us. I am not grieving for my son. I’m grieving for the boy in my head, the one who doesn’t exist.

In my master plan, my imaginary son develops at a typical rate. He makes straight As, loves me more than he loves his dad and grows up to marry a kind woman, preferably one who doesn’t mind an overbearing mother-in-law. The life I envisioned for him was perfect and adversity-free. I didn’t want him to ever struggle. And while my son busted my bubble early on, I will have to grieve each of my children one day.

I’m learning (slowly and badly) that an adversity free life isn’t part of God’s plan for any of us. I know my plan for my children will never be as beautiful or complete as God’s plan for them. I’m so grateful the Lord is patient with me when he nudges me to pivot and instead I throw a hissy fit. When we pivot, struggle or suffer, we are softened, and as a result we are better suited to love the people around us.

That’s the whole point of this being-a-human thing: to love one another — imperfectly and without condition, to give of ourselves without measure or calculation, to be all-in from the beginning. We are called to a love that is self-giving, complete, too-much. My son struggles in some areas, yes, but when I stop to examine who in my life best exemplifies the sort of Christ-like love we’re called to, it’s my son.

Diana Vallette writes from Louisiana.