My Baby is Not a Percentage Point

My baby is not a percentage point. Not dividable by parts and pieces.

For the past eight years, Nick and I have sat around tables with well-meaning professionals dissecting our son. Their laser-eyes focus on the details of their particular speciality while my Mama heart clings to the whole child, disabilities and all.

Yesterday, we participated in  Elias's annual review for his I.E.P. (Individualized Education Plan)--and it doesn't matter how organized the process or how caring the specialists, I always leave these meetings deflated. And over-exposed. And I always want to climb under my covers and cry.

Even when he's made progress on his goals. Even when it is obvious that the people working with Elias truly care for him. Even when we all agree on where his issues lie.

I just want to hide.

Maybe its the abundance of words. The letters forming deficits. The goals that seem both obvious and unreachable, like the moon hanging so low it seems like your head may bump into it but when you stretch your arms it remains miles from your fingertips.

Like peeing in the toilet.

Oh, how I wish this were easy for Elias or even that the way was clear to lead him there. And there is nothing comfortable about sitting in small chairs, with your co-workers, discussing your child's incontinence.

You feel inadequate. Like there is more you should be doing. And you feel righteous. Like, do you even know how hard this is? Do you have a child with multiple disabilities? And yet you are so grateful for the work that they do.

You are a storm brewing and you just need to run. Or ski. Or play hockey.

And of course Elias has a zillion goals, from toileting to reading to coin recognition to understanding personal space to recognizing emotions and on and on into the wee hours of paperwork.  And the enormity of it all feels like a roof of snow, collapsing. A thirty degree angle where even a slight change makes everything slide.

The interplay of visual impairment, cerebral palsy and autism spectrum disorder acts as an avalanche, pinning me underneath feet of snow.

I swim towards the surface hoping to breathe.

"Elias only recognizes happy and excited," someone said. And we all nodded. We were struggling with the wording for a new goal adressing empathy. How can we expect him to respond to sadness or frustration if he doesn't yet acknowledge these feelings in others? Maybe the goal should just be for him to recognize these emotions with no expectation (yet) for a response?

I shared how the night before I leaned my face close to his and said, "Do I look happy?" He had just pulled his sister down from a chair by her hair.

"Yes," he said, with a smile.

And oh it's so hard not to expect him to know better. To expect him to understand the cause and affect of emotional response. I'm an elementary counselor for christ's sake. At my son's school. And yet I can't make him feel. Can't make him understand.

Can't fix the part of his brain that is so slow to process feelings, thoughts, and pain.

Hours after the IEP meeting, I sit next to Elias at the kitchen table as we work on his homework. We read about the Postal Service. "What does this box say?" Elias points to an extension box that I purposefully avoided because I'm still not sure what he understands about death.

I place my finger by the words and read: "It says: Only persons who are no longer alive are shown on stamps. Name someone you think deserves this honor. Tell why you feel as you do." As I'm reading I'm thinking that we haven't lost anyone he's been connected to yet. And he's not a TV watcher. Or video game player. What does he understand about death? I don't expect him to answer the question.

"Didn't J's baby brother die?" he asks, referring to a boy in his class.

My skin stands at attention. "Yes, yes he did."  My mind flashes on the baby that couldn't be saved.

"Well, there should be a stamp of him." Elias peers at the picture of stamps, his nose two inches from the page and says,  "Its sad that there isn't a stamp of him."

I blink back tears. "Did J talk to you about his brother dying?"

"No. Is this page 177?"

"How do you know his baby brother died?" And even as I ask, I can hear this boy telling a noon duty, a teacher in the hall, kids at lunch.

Elias focuses on the page numbers, not able or willing to discuss this deeper, not even for his counselor Mom. "I don't know how I know."

But he knows. And he made the connection.

All on his own.

This child of mine who can't be divided into parts and pieces.

Not even if we try.

 

Comments

[danielle in zurich]

That's amazing...maybe he figured it out because J was sad ;)
Keep trusting your mama instincts and looking at the whole person. We are all more than the sum of our parts, anyway. And when it gets tough, have yourself that cry. God knows you've earned it.
It sounds like your IEP team really means well...and human nature being what it is, the fact that you can't dislike them makes it all the harder because you have to acknowledge the rightness of the path you're on, which means acknowledging (as you do) where Elias is at right now. But what is great is that you can also acknowledge his strengths--as you just did.
Hang in there.

[Laurie]

powerful

[fleming]

It doesn't matter how many problems Elias may have or anyone else's kids because the fact remains that they will always surprise us. We are so blessed to have these little people in our lives even when we want to pull the covers up over our heads sometimes and pretend they aren't ours. The way I see it, Elias has so many other things that he is working on that empathy may have to wait. It may also be that he is trying hard to read peoples expressions/reactions but hasn't made sense of it all yet. I find that sometimes amazing progress is being made but in an unmeasurable way for us parents to recognize....do you see? Sometimes we don't recognize what is in front of us either.

[Jojo]

Hang in there. You are doing your best. Your best is phenomenal. Inspirational. Of course you're overwhelmed thinking of all the goals and must dos and tasks broken down into bits and pieces that comprise parenting. Learning to be from scratch. More mountains to climb- more summits to cheer on! GO TEAM ELIAS!

[Christy]

I always feel better after writing. And having such wise and compassionate readers sure helps my soul.

[Ginny]

As the mother of a baby who died, living in a world full of people, family included, who refuse to acknowledge my son was ever alive, I say "thank you" to Elias. You're doing many things right, Christy. This proves it.

[Lisa in Elijahland]

Christy, this is so beautiful and so heartbreaking...and I can relate to it so, so much. Thank you for sharing.

[Christy]

Ginny,your son was alive and I too wish there were a stamp to honor him. I'm sorry that our society doesn't do better at supporting grief, and death, and allowing us to talk openly with family and friends about the people we have lost. Especially babies. People seem to think you can just move on b/c you "didn't know your son for long." As if you didn't start loving him and making space for him and changing your life for him the moment you knew you were pregnant. And you cant go back to who you were before.

Thank you Lisa for writing.

[Kate]

Another beauty of a post here, Christy. I'm sure it does often seem overwhelming when you think of all this stuff that Elias needs to work on, but then he just sneaks something like that comment in and you remember how far he has come. Even if some days the progress feels glacial with one step forward and two steps back, it's still progress. Hang in there and keep writing!