what really matters

Today we had a triennial evaluation for Grey. Parker's is tomorrow. 

I want to cry or throw up or run until the road doesn’t exist. Writing seems a little more healing and productive than any of those things, (and I already cried as soon as I got in my car.) 

For those not in the know, a Triennial Review involves the complete reevaluation of a child classified with a disability every 3 years in order to determine whether or not the conditions upon which the original classification was determined are still evident. It’s a pretty hard core process and takes a lot of work for students and the passionate assessors that work with our kids. A triennial also helps determine the content of a student’s IEP- Individualized Education Program. Spoiler alert: Grey’s still super autistic. He is perfectly and wonderfully made. He reminds me that God doesn’t make mistakes. 

I always say I don’t give a rat’s ass about the test scores and evaluations for the boys. And I don’t, except for when I do- usually in conjunction with reading and discussing the reports. Then I do so big. To see words like severe, lower extreme, below average when all he does is work is gutting. 

The older kids get and the more profound their disability, the less options are available to them in school and life. We are limited by what already exists, and what most likely has existed in the exact same way for the past 100 years. 
My brain spins after these meetings. I think of the groups of young adults with Disabilities I see wandering the aisles at Target and it feels me with profound sadness. And then flooded with guilt for feeling so sad. Is that the only available options for these children in Special Education who grow into adults who live on the world’s periphery? Who am I to judge- I love roaming the aisles at Target. So why do these encounters seem to pause my soul for a moment? Do they have money to spend? I wonder. Are they happy? Do they feel that emptiness I sometimes experience when I feel disconnected from the world?

We are in the figuring out stages for the boys next steps. Next year Grey will be eligible for high school. A huge transition for any student and their family. But for us feels like running uphill while carrying weights. I turn my brain inside out trying to figure out the perfect plan and necessary accommodations when most things are completely out of my control. I’m trying to learn the new acronyms and rules. After almost 14 years of parenting, sometimes I still feel like a rookie.

In a day or so, the sting from words on reports and ideal placements will wear off and I will remember my why. My boys have shown me that you don’t give up when it’s hard. You give up when the task is completed. The pain from these experiences always transforms me after the sting wears off. 

My life’s work: Making sure my boys are understood and supported in a way that helps them thrive. It’s never easy and always worth it. 

And as I sit and write I remember, if we are only trying to catch up to the assessments and evaluations, we will only be left out of breath and feeling broken. 

My boys and kids like them aren’t broken. Our evaluations don’t know how to access the information their unique brain holds. We don’t know the language or the rules of Spectrumville, so my boys must survive in the land of the typical. Can you imagine how hard that would be to constantly navigate the unfamiliar? Translating from a foreign language to the best of your ability? 

I looked over at Parker today and just soaked him in. His tiny soft ears. The tuft of hair that always sticks up in the back of his head, glowing gold in the sunlight. I was as just in awe of him as I was when he was a newborn. 

(Big Exhale). No one is a sum of their deficits. But instead we are the sum of what we overcome. We are bright and brilliant spiritual beings. We aren’t what knocks us down- we are if and how we choose to get back up. We are transformed by the hard parts. We aren’t how the world looks at us, we are how we look at the world. 

My boys remind me to look at the world with curiosity and awe. Greyson and Parker remind me to celebrate the differences instead of mourning over the deficits. Until then, I’ll write my own assessment.

Greyson Michael Kelly

Age 13 and 11 months

Eyes so blue they make the sea jealous. Great hair (seriously, above average). Effortlessly cool. Creative as heck. Resilient as hell. Detail oriented. Calming to be around. Skillfully observant. As resourceful as an engineer. Visually excels. Brilliant. Incredible memory. And no matter how hard, how complicated, how painful life can feel- he never ever gives up. (Resilience- Upper Extreme).