We’ve all been there. We have stacks of them in our files. They’re notes, words, numbers that are used to define our children.
We all look at those numbers on the page and – regardless of how long you have been subjected to these standards – the rawness of that definition hits you like a tidal wave. This? How can this be? This isn’t my child!
I entered our therapy clinic today, anticipating receiving yet another set of numbers – more data – on my boy. It’s a necessary evil, as insurance companies and Medicaid expect you to prove that your child is both making adequate progress and still in need of the intensive therapies that are life-changing for our children.
I remember the first time I received some numbers on my boy. Here he was, a cherub-like angel sitting on the floor of a small evaluation room in a county building, as I heard the first set of evaluation results I would ever receive for my child. It would be the first of many.
Each evaluator spoke as though I was a house of cards that might crumble under the force of their words. Each word spoken hit me with an enormous blow. Here I was, thinking my son had a speech and feeding delay, only to be told that my nearly 2-year old son was functioning at a level of a 7-month old. I looked at the sweet angel at my feet, blissfully impervious to the news. No one would meet my eyes. As I looked at the final evaluator, who informed me that my son was significantly delayed in every area of development, she lifted her eyes to meet mine and said, “I’m so sorry.”
It was at that point that my tears flowed freely.
As time has passed, I don’t recall a single evaluation in which I did not leave slightly reeling, no matter how well I was able to hold myself together through it all. I guess that – after taking enough blows – one simply grows a thicker skin. It doesn’t mean that I am immune to that slight cloud of darkness afterwards.
At this point, I think that what gets me through each evaluation is the knowledge that those numbers are only that – numbers. They don’t define my baby. Current functional status, age-equivalencies, standard scores and percentiles are important to school systems and insurance companies, but they do not make my boy.
He’s more than the 1st percentile in this area or the 2nd percentile in another. He’s more than the 2 standard deviations below the norm. He’s more than the standard scores. He’s more than the labels and diagnoses and eligibility categories.
I’ll tell you who Jack is. He is a beautiful angel of a boy who brightens the life of everyone he encounters. He inspires people with the way he works for every single little milestone – each of which is so much sweeter for the work that he did to get there. He is a ranging hurricane of a boy at times and the calm before the storm at others. He has a smile that lights up a room and a laugh that is simply infectious. One cannot help but smile at the music that is his laughter.
If I could add a few diagnoses of my own to the list of conditions that describes my child, here would be the ones I would select – Adorable and Amazing. Yes, I will self-diagnose my child as Adorable and Amazing, and I dare any expert to question it!
Ultimately, that is why the numbers don’t draw the same tears that they once did. I look upon them, but then I glance at my baby. He’s smiling. He’s actually smiling! There was a time that the smiles were so rare, but now they are much more common. He just jumped! It took a year of weekly PT and twice-weekly OT to overcome the low tone and motor planning issues to get him only a centimeter off the ground, but he’s jumping! Forget the scores that is on this report – here is your progress!
As I receive that paper today, I’ll surely feel the sting of that evaluation. Then, I’ll turn to my baby and take stock of all that I see. I’ll do my own evaluation. I look at the boy who is in a very different place now than he was 16 months ago. Is he still significantly delayed? Oh, goodness yes. We’ve got a long, long way to go still, but when I compare my baby to himself rather than his typically-developing peers, I see nothing but progress.
And progress is a wonderful thing to see.