he is the one percent

So today I had a meeting with the speech therapists at the clinic Bentley attends through Wayne State. He has been going here for a few years now, but this year he is on the other side of the building with the older kids. He receives one on one speech therapy for 45 minutes 2 times a week now.

At this speech clinic they have a one way mirror so I can watch Bentley during his therapy. The first week I declined, but the next few weeks the littles and I went to watch. 

So for kids with communication disorders they have a special standardized test to figure out what a child needs. This test comes in the form of a book with pictures and a set of toys. The therapist proceeds to flip through her manual to figure out what picture she needs or which set of toys. Like standardized tests it is most efficiently used if you move quickly. 

"Bentley, point to the boy on the bike. Bentley, where is the girl that is sleeping?" Each of those scenarios will have several pictures of kids on, next to, looking at bikes or... awake, laying down, girl sleeping, boy sleeping... etc...." 

So Bentley points to the wrong picture and the therapist might say Good job! or Good try! and then move on. I think deep down inside Bentley knows he is wrong, but doesn't know what is right- and the look on his face is painful to watch. 

So then the therapist will pull out a set of dishes... Bentley- give the bear a drink. Bentley give me a drink. 

You can see his face light up--- Oh you want to play with me!?!!? 

Which is then quickly replaced with a look of disappointment when it's time to clean up before he had a chance to really play with the toys. 

So I stopped going to the one way mirror. To be honest, it's mostly because Clayton and Lily get bored. But they like to watch him for a couple minutes... but it's also because it was difficult to watch him struggle and not intervene in a way I knew could be helpful.

So he's been going to speech for a few weeks and it was conferences this week. She hands me a piece of paper and on it says: 

Diagnosis: severe receptive and expressive language impairment, and severe articulation impairment. 

Test results: standard score of 50, 1st percentile. 

She reads the diagnosis and then says, "But you already knew that." 

Then she goes on.... so when they test 100 kids, 99 will be answer the questions accurately, but Bentley does not. 

We then proceed to talk about goals. 

Before I go on.... this is a young college student. She is very sweet. This is not about her. 

But can I just say it breaks my heart... I know that things are true, she's right about that. But when I see them on a piece of paper it literally breaks my heart every time. Not like a soft break, like a physical pain I can feel piercing through my body. And I understand that standardized tests are useful- but they do not define my child. He is not severely impaired. He is fully alive and fully communicative and fully receptive- it's just not by your terms.

So let me tell you about the one percent that is my son, Bentley. 

We drove to speech and I told Lily and Clayton they could ride bikes for a 20 min while Bentley was inside. We park and Bentley says, "You- (Lily) Speech. You (Clayton) Speech. Me. Bikes. With a huge smile on his face in hopes that I could actually make this happen. 

The boy runs with arms wide open to greet those he loves, flying into your arms and wrapping his body around you- fully appreciating your role in his life. 

He laughs so loud and so long that it could make the flowers laugh if they heard him. 

How about when we walked into our local super cool pizza restaurant tonight and he opens the door after I coaxed them to be calm and quiet and yells at the top of his lungs, "I AM HERE!!!!" 

Or the sweet way he rubs our backs. And the way he manages to roll underneath us every time we are in downward dog doing yoga. Or the sweet kisses he delights us with all day long. 

Bentley loves his therapy horse Bobbie more than any other toy or activity or place in the world. 

Those who know this sweet child are left touched by his sweet spirit. 

Whether he's deceivingly stealing apples from the refrigerator, or dumping baby powder on the floor, creating a mound of bubbles in the sink, cracking eggs for breakfast at 5:30 AM in a pan, or jumping off the slide he will leave you smiling. 

He will leave you knowing that he is much smarter than your test. 

He is not so severely impaired- He is severely changing lives. 

He has and is continuing to severely change ours-changing us into people who look beyond the 99- who don't value those standardized tests- though heartbreaking they can be when they catch you off center- but who value the love, the depth, and the warmth that is a child with Down syndrome. 

He is the one percent.