Delayed Milestones Hurt, But They Won’t Get Us Down

Gigi is two and a half and is not yet walking. Two and a half and still carried from here to there. Still carried up the stairs every night to bed. Still lifted in and out of the car seat. It’s getting hard to carry her 24 pounds of low muscle tone.

About a month or so ago she only began crawling although she still prefers her method of scooting around on her butt. Beginning to crawl at two and a half is late as most babies are crawling by their first birthday and then walking shortly after. When she was evaluated a couple of months ago by her early intervention team she ranked a disappointing 1 out of 10 on gross motor skills.

When we attend playgroups it’s obvious that she’s well behind her peers. It’s hard to see that she can’t keep up as they all run around while she usually stays in one place. It’s said that where they lack in some areas they make up for it in other areas. I think that’s true with Gigi as her fine motor skills seem to be good. She knows dozens of words in sign language and her speech is coming along too, but she’s really not close to walking.

I can’t walk but I’ll take a ride!

In less than six months she will start school and then what? The hope is that she will at least be able to use a walker independently so that her teachers will not have to carry her. The good news is that she is showing increased strength and progress, slow progress but it’s progress. That’s what I need to remember, she will progress, but it will be at her own pace and not mine. 

Gigi wants to walk and I can see her trying but she just doesn’t have enough strength or confidence yet. She likes when we hold her hands and she’s able to walk with us for a minute, then she gets tired. Many kids with Down syndrome get tired easily and Gigi is definitely one of them. She’s not frustrated though. It’s me who realizes that all of this is happening while she’s blissfully unaware. I’m the one that would sometimes get sad when I saw her younger peers with Down Syndrome walking and climbing. As a result I’ve decided to be indifferent to any of the milestones whether it’s the ones she’s behind or the ones that she’s ahead of. I’m no more excited that she sometimes can repeat words I say as I am sad that she isn’t yet walking because in the end what does it all mean? What difference does it make? She’s thriving in many other areas. She’s not suffering. Whether or not she is able to walk right now doesn’t change her significance. She certainly doesn’t make us any less happy than any other child of ours would just because she doesn’t walk. So I’ve realized that there is no reason to be sad. We haven’t enjoyed her any less. And just because she’s not doing certain things that may be expected of her, it doesn’t devalue the impact that she has made on the lives of those that have come in contact with her during her short life so far. In fact her not walking has likely played a role in the teaching of others that just because she may be considered delayed in some aspects, it doesn’t mean she will bring less joy to those who meet her.

Coincidentally, Gigi climbed up our basement stairs for the first time while I wrote this article.