I'm writing to you because of some things that have surfaced in my thinking after you saw my daughter last week. And I know I'm going to sound like an overly-protective mama right now. But at the risk of offending- that's my job. I'm Lily's defender and protector, and if I don't wear that title proudly, who will?
I know that you are well-versed in the things my daughter "should know." I realize you went to school to gain that knowledge, that you were educated with that goal in mind: expert. I understand that as a mother there are things I might overlook that may need attention, and that as a parent, I tend to be a bit biased when it comes to assessing my daughter.
So I hesitate to say it, but I feel it must be said...
You got it wrong.
In your eagerness to find out what Lily couldn't do- point to an object and name it, call me from the other room, crawl and stand and pull a peg upward from a board- you missed what she can do.
I tried to tell you, as you rattled off your list of milestone questions in a tone that said she was predisposed to failure.
"Does Lily ever point to what she wants and verbalize a desire for it?" you asked, clipboard in hand and a concerned look on your face.
"Well no, but she reaches for her baby and cuddles it like it's real. She can pick a cat out of ten flashcards with no prompting--"
"Does Lily offer to share her food with you?"
"Umm, no, but she loves to eat everything- oatmeal, apples, thai food, lasagna- I don't think she is interested in sharing her food---"
"Does Lily always pick up tiny objects like that- a raking motion rather than a pincer grasp?"
"No, she does typically use her index finger and thumb," - (except for when you quickly took the sugar pill off the table just as she was about to grasp it, and replaced it with another...smart girl, she knew she'd better ditch fine motor skills for swiping if she were going to beat you to the task.)
"Does Lily use any words for specific objects?"
"No, but she does sign 'all done' and 'more' on command."
I think you missed her signing those words, right on cue as I said them...you were busy making notes on Lily's chart.
We waited several hours past Lily's lunchtime for different experts to take their turns with us. And each one of you was so kind and understanding when Lily didn't want to perform anymore...(I don't know that I would feel like cooperating much if I was in her shoes; tired and hungry while being poked and prodded and examined by strangers for several hours.)
So it wasn't your graciousness or "bedside manners" that rubbed me wrong.
And maybe it is a bit of defensiveness on my part for thinking you missed the big picture. After all- you were just doing your job.
But what I wanted to say- am saying now- is that my Lily is a person.
She is not defined by checks on a piece of paper or a line on a graph or a statistic in a textbook. She amazes us every day with what she can do, and I wish that there were a blank page next to her name instead of standards and achievements someone else - an expert- decided were important.
Because we could fill that page up with what Lily can do, could write a book on all that she's done in the 16 months that she's been a part of our family, and we still wouldn't be done telling about how she's changed our lives.
And where is the chart for charming stranger's socks off with one crinkly-eyed smile in less than 5 seconds flat? Or the graph for how quickly she can wrap an entire family around her crooked little finger just by pointing to our noses when we ask? And how about the fact that she defied the odds and survived life inside the womb when so many babies with Down syndrome don't even make it that far? Or what about the people whose hearts she's touched who never knew what a blessing that extra chromosome could be before they met my girl? Who could measure the impact her life has had on children like Olga and Peter and Kareen?
But there were no charts for those accomplishments. Nothing to record the measure of Lily other than a list of milestones she hasn't reached yet.
I understand the need to educate and strive for more. I do "get" that there is a need to document and evaluate and discern what developmental steps are in need of improvement.
I just wish that somewhere in the mix there was a view of the person as a whole. Not just missing parts or gaps or lags but maybe a better look at what Lily can do, and not what she can't. Maybe somehow we could factor in that each child- typical or otherwise- has their own learning curve, and that some of that is just hardwired and no amount of therapy is going to change it. We can do everything we know to do to help Lily to learn, but at the end of the day, it really doesn't matter to me when she walked. Or how many pegs she could pull out of a board.
At the end of the day, after I've taught her all I can, and given her everything she needs to grow and learn and be, she is - in the words of a very wise man - going to be just fine. And no team of experts will be able to convince me otherwise. Even if she doesn't share her food.
Oh, and by the way- she shared her cookie with me yesterday...right after we left.
Just in case you wanted to make a note of it.