“Monday and Wednesday mornings are out for us,” I tell my friends as we stare at our calendars, hoping to find a little time for a play-date. “Jackson will be in speech therapy.” Old friends know this already. They’ve experienced my son’s limited ability to express himself and often celebrate each new word or sound with me. New friends look a little confused.
“He has a speech disorder,” I tell them. I then give my boilerplate rundown of apraxia. My son understands what you say, and he knows what he wants to say. But his brain has a difficult time telling his tongue what to do. While other kids innately make those connections between tongue placement and sounds, Jackson must practice quite a bit. And even when he masters a consonant in one position, he still wrestles with the added difficulty of pairing that consonant with clear vowel sounds. We haven’t even thought about blends.
At age 3, he entered the school system’s special education program. I have folders upon folders containing his various evaluations, exercises, current and former IEPs, and about 15 million signed understandings of his rights.
I am a special needs mom. Sort of.
Our weeks are filled with speech drills and appointments. On many late nights I battle wth insomnia as I wonder how his disorder will impact his future friendships and education. I take a mental note about every peculiar behavior, wondering if this could be a sign of a co-existing diagnosis—or if he’s simply a 3-year-old being silly or temperamental. In these ways, I relate to our special needs community. I feel solidarity with the women in our apraxia-related online support group. We share our victories and struggles—both small and large.
But my son’s struggle may not be forever. Many apraxic children do eventually catch up to their peers after intense therapy, and only the more moderate to severe cases may face true hardship or discrimination as they enter adulthood. We are thankful that Jackson’s case seems to be relatively mild. I once wept in my kitchen wondering if his thoughts and feelings and special ideas would remain a mystery to me forever. Begging God to let me hear that sweet little voice singing “Jesus Loves Me” at bedtime happened on the regular. I don’t have those fears anymore. Jackson sings his own rendition of every song imaginable, including “Jesus Love Me” and “Amazing Grace” and “Old McDonald” —all mashed up with “BINGO.” Very few people would understand the words like I do, but his clarity gets better with time. And I feel confident that one day, the world will understand him too.
People love to tell me, “It could be worse.”
To be fair, that’s true. But it often leaves me feeling guilty for the times I worry. Jackson has the best kind of special need you could ask for—one that doesn’t have to be permanent. One that develops our character and faith, but doesn’t present us with too many daily hardships. I feel guilty for skipping speech therapy for vacation or because my younger child isn’t feeling well and needs a morning nap. I feel guilty that I can choose that option, knowing this poses no huge setback for us. And then I feel guilty for running parenting advice through the filter of, “That’s for typically developing children.” Or for wondering if well-meaning advice givers could possibly know the struggle watching their child fight to do what comes naturally to most everyone else. I walk between two worlds. I often enjoy the day-to-day life of “typical.” But I know my son doesn’t actually qualify as one.
While we wait and work, unsure of how long apraxia will be a major factor in our lives, I try to focus on the positive. I love to encourage the moms who are just starting out. Recently, I learned that the woman who cuts Jackson’s hair is beginning her journey as a speech therapy mom. We laughed over some of the crazy things our kids do. We found comfort in each other’s stories. And as she looked at me with hope, I remembered asking other moms the same questions she was asking me. “How long did it take for you to see progress? Did he really not say anything a year ago? When did you hear ‘Mommy’ for the first time? I bet you never get tired of hearing it. I can’t wait until my son calls me mom.”
It took nearly half a year to see real progress.
Jackson really didn’t say anything besides “Dat” until he was almost two. I didn’t hear “mama” regularly until he was nearly two-and-a-half, and I didn’t hear “mommy” until he was three. I do get tired of “mamamamamama.” But I never tire of “Mommy.” My husband and I still haven’t heard, “I love you.” We do hear a lot of backseat driving and demands for more food. I now know things. His favorite color—red. His heart is kind. He is happy I’m his mommy. I didn’t need words to know those things. But it’s nice that he can tell me now.
Did you catch that last part? Because that’s what I want new speech moms to know.
The words are nice, but you don’t need them.
I didn’t need words to know my son. Words aren’t required to meet his needs. I didn’t need words to see his unique form of goodness. It is hard when your child can’t tell you what they want. And sometimes I didn’t know (and still don’t) if he wanted applesauce or just his blue plate. Sometimes that left us both in tears. But I knew all the important things. And you will too.
Mommy?” A little voice often asks me now. “You happy, mommy? You happy at me?”
“I am so happy, my baby,” I tell him. “So happy to be your mommy. So happy to be here in the middle with you.”