Our annual reality check

      5 Comments on Our annual reality check

It takes some getting used to, and in all honesty, I am still working on it: coordinating my expectations with Kyle’s developmental timeline.

As Kyle is the third of four kids, I have a general idea of when to expect skills to emerge for a typical kid. Up until about 5 months, Kyle seemed to be right on track. But then his curve leveled out while a typical kid’s would keep going up. Here’s my crude, unscientific illustration:

development

It’s not that he won’t learn the skills, and it doesn’t mean that he can’t end up at the same place as many typically developing children, but it’s a different rate of skills acquisition. And boy, don’t we parents know how much stock people place in milestones?

Kyle learned to walk at 27 months. Yet when you have a 1 year old, Down syndrome or no, the question after “how old is your son?” and the answer “he’s one” is, “is he walking yet?” Let me tell you, that question got really old for over a year, no matter how many times I reminded the frequent inquirers that kids with Ds usually take longer to learn to walk than typical kids.

The top-ranked most irritating question I have endured (after explaining to this person that Kyle’s developmental level at that time was around 24 months) was, “so then will he always be around the cognitive level of a 2-year-old?” I suppose it was an innocent enough question, but I was incredulous.

No, of course he won’t always be at the developmental level of a two-year-old. Do you see toddlers going to college, learning to drive, landing jobs, and getting married? No, but people with Down syndrome do those things every day. Because their brains and bodies develop continuously just like the brains of their peers.

The difference is that people with Down syndrome usually develop at a slower rate, sometimes due to brain function and sometimes due to other factors such as muscle tone or motor planning difficulties. For example, my 2 year old can run, but Kyle can’t. Kyle has had setbacks such as foot surgery and clubfoot, plus he has loose joints that don’t yet support his body in a running posture.

Sometimes these differences between Kyle’s skills and the skills of kids his age are more evident, especially in the clinical setting where we are given a developmental age equivalency for Kyle. Now that we have a few years of evaluations under our belt, I feel like his patterns are emerging and settling into place.

clinic

Consistently for the past few years Kyle has averaged about 3-4 months developmental progress over the course of each year. It was alarming in the beginning, especially as a mother of four accustomed to a year’s worth of development each year.

The good news after attending Kyle’s annual clinic visit (i.e. reality check) is how much progress he is making. It might be gradual, but he is making definite gains.

What I have had to learn is that Kyle’s year is not the same length as his siblings’ year or his peers’ year. And it most likely means that over the next decade, the gap between Kyle and his peers will widen. That discrepancy is something I can try to mentally prepare for, but acceptance will get me further than preparation.

The numbers should not be my focus. After all, consider what St. Peter wrote:

2 Peter verse
Besides the verse’s connection to Kyle’s timeline, it is fresh in my mind and will forever remain significant to me because of a little girl who was taken to heaven too soon. My husband and I attended her memorial service recently. She was a 3-month-old sweetheart with Down syndrome, and this verse was one the minister read to signify how her three months on the earth fulfilled God’s purpose for her. Even though it felt like a short time to her family and friends, it was three months on God’s timeline, not ours.

God has his own plan for Kyle’s development too, and it follows a schedule that is unique to Kyle. In the words of Daniel Tiger, “It helps me to remember that.”

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

5 thoughts on “Our annual reality check

  1. Sruthi

    Hey Katie,

    I got to your blog from your comment on the babycenter DS group. My son is 14 weeks old, and not showing big delays yet. But I know he will, and I find myself accepting that some days, and hoping against hope that he won’t on other days.

    I am planning to print and save this post in my journal, to return to on the tougher days. Thanks a lot for writing this.

    Reply

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