Tuesday, October 11, 2016

Measuring growth

I think that probably the number one question I get asked is whether or not Mildred is doing whatever-the-developmental-thing-it-seems-like-would-be-age-appropriate-to-be-doing.

Is she walking yet?
I'm sure she's crawling all over the place!
She doesn't sit up yet?
When will she start crawling?
Is she talking?
What words does she say?
She's probably running all over and keeping you busy!

Now let me start by saying: I get it.
I find myself (still) asking these questions to mamas that I know, and even to some in the Down Syndrome community. I think it is important to acknowledge first that, in my own personal (and very limited) experience, these questions come from a place of absolute total love and caring. We ask these questions because what we really want to say is:

How is he/she doing? What is going on in their little world? Your child is beautiful and I want to share in your joy.

We tend to use milestones or other markers as measurements of health, happiness, and sometimes even projected success. This seems no big deal to the parent who's child is meeting all those markers within the "normal" range... but when delays begin to occur... what does that mean? Is my child ill? Does my child have delays? Do delays mean future struggles in life? If my child doesn't meet these rubrics, will he/she ever have a successful, fulfilling life?

Down Syndrome has helped me to try to separate things and accomplishment from intrinsic value and worth. If I'm completely honest, this is super challenging for me. I have spent my own life trying to be perfect, and do all the things and do them well, all while getting people to like me. Down Syndrome has shown me how ability/accomplishment oriented I still am in my heart of hearts. I have had to confront my "doing" instinct which wants to crowd out my "being." As the lyrics to one of my favorite songs go: "I'm Mary and I'm Martha all at the same time. I'm sitting at His feet and yet I'm dying to be recognized." ("Lament" -Audrey Assad)

Mildred helps me to just love, and not measure.
I was talking to another mom of a child with Down Syndrome after one of my posts last week and reflecting on this experience of comparison. Comparison is not just to other children and what they are accomplishing, but it is also to the rubric of "normal" development. And I am aware that this is not a phenomenon that is specific to DS. This is a parenting thing, not a Down Syndrome thing - comparison. I think the difference is that there is more weight behind the question of when these things will happen when you're a parent with Down Syndrome. It occurred to me in that conversation with another mom why that is...

Underlying everything, in the back of the mind of a parent of a child with Down syndrome, is the question: Will my child ever be able to do that?

This is important. It's scary to admit that I do have an underlying fear of how capable my daughter will be! Does that make me a bad mom? No. Does that mean I have failed Mildred because I have those flickers of doubt or concern? No. I think it comes from a deeply rooted societal question about the capability of people with Down syndrome. What I mean is this: as a society, we still don't KNOW that people with Down syndrome ARE CAPABLE. There is still a question mark hanging in the back of our minds as to whether or not that milestone is going to be achieved.

We have to make this stop. We have to change the questions in the back of our minds.
If I had known then what I know now...
there would be NO question in the back of my mind.

M holding my hand while we walk
So this is what I have to say for any parent of a child with Down syndrome (or facing a diagnosis of Ds), just as my brother-in-law so poignantly said to me:

Raising a child with Down syndrome is just like raising a typical child. They may not get to all the phases at the same time as other kids, but they
WILL get there.

When I'm at my best, I can see that clearly and confidently, and I have no fear. Mildred CAN. She has shown me that. And sometimes it looks different, and sometimes we have to work and work and work for things that come easily to others, but that doesn't mean she won't do it, because she WILL.

I have more to say, but Millie is awake, so I must go. :)




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