What Milestones Mean When Your Child Has Special Needs
How one mother's perspective on developmental milestones has changed since her son's autism diagnosis.
Milestones mark a path through childhood. They offer a guided course through the chaos of growing up and are meant to reassure anxious parents (like me). You look at those charts, and read the articles, and think, "If my child is doing thing X by age Y, he's doing okay. I'm doing okay."
But what if he's not?
I've sat with this question ever since the e-mails started to pour in from the parenting newsletters I signed up for before my first child, Liam, who's now 7, was born. I cried over it when he got an autism diagnosis at age 3 and wasn't hitting most of his developmental milestones. I still struggle with it every time I see a kid his age playing catch in the front yard or reading a book quietly in the library.
Milestones are important. I know this; I get it. I know because I'm not just Liam's mom -- I'm also Eliot's mom. And I feel a surge of pride every time Eliot, my 5-year-old son, reaches a new milestone. I post on Facebook about his brilliance, compassion, and creativity every time he does something ahead of his age range. (He's reading already! He can talk all things Legos with 10-year-olds! He writes stories just for fun!)
But things are different for Liam. If I look to traditional milestones to chart Liam's progress, I'm left only with lack. When I try to map his path along typical development, failure -- Liam's, my husband's, mine -- emerges.
It's not that we haven't tried. My boy's been in 30-plus hours of therapy a week for the last four years. And he's making progress -- every day and in a thousand different ways. But if I pick and choose through the developmental milestones charts, I'm left with a grim picture of my very smart, nonverbal child with autism: his expressive language is in the toddler range, his social interaction is years behind his peers, his motor skills fail to measure up.
But ... does this describe the totality of him? Does he fail childhood because he's not meeting these milestones? Of course not.
Instead, I ponder different questions: What if there's not just one path? What if there's not just one set of milestones? There are many, many paths on the road to adulthood, and Liam is taking the road less traveled. It's a road with bumpier, less familiar milestones, but it's still a road.
These days, my 7-year-old is still learning to dress, toilet, feed, and express himself. Are these typical 7-year-old milestones? No. But these are 7-year-old things for Liam. And, so, these are 7-year-old things -- at least in our house.
By choosing to reframe Liam's development on a different trajectory, much is gained. He's no longer an aberration. He's no longer so far outside the curve he can't be charted. He's no longer defined by everything he can't do.
And that -- as any parent of a child with special needs will tell you -- is incredibly important.
The other day, Eliot said: "I wish Liam could talk, like me..." Statements like that hurt my heart a little, because I wish that, too. But -- and this is a radical notion -- what if Liam doesn't wish that? What if he's okay with the communication he has? With his difference? What if he's okay being on a different path?
That question boggles my mind, but Liam made me consider it the other day when I asked him a similar question. We'd been playing in a sprinkler at my in-laws' house. Liam was muddy, soaked, and ready to change clothes. He babbled at me at high speed while I helped him get dressed, and I asked him, using a simple version of RPM-type [Rapid Prompting Method] communication, "Do you wish you could talk?"
I held up one finger for "yes" on my right hand and two fingers for "no" on my left hand.
He picked "no." Twice.
I thought it was an error. His wires were crossed. Surely he wanted to be like the rest of us? Surely he wanted to talk and express himself in the way his milestones told me he should be doing?
He picked "no" two more times. And that made me pause. And think.
And here's what I came up with: My boy gets almost everything he wants. If he wants a lollipop, he finds the YouTube video I made of me asking him if he wants a lollipop and shows it to me. Or he climbs a cabinet or he pulls someone toward what he wants. Or he problem-solves and communicates with us in some other way.
And so, I am left challenged -- especially when faced with the monolith of normal developmental milestones -- not only to embrace the fact that my son might be on a different path, but also to wrap my brain around the fact that he might be okay with it. That he accepts who he is and how he moves through the world. That he's not failing at childhood because he's not meeting every milestone, but rather, he's succeeding at being Liam.
There's no guidebook for this path, but it's a path. We're making our map as we go along. And for this mama, that's okay, too.
Copyright © 2015 Meredith Corporation.