Jarring.

I sat in Olivia’s IEP meeting with Brian, surrounded by people who love our girl.  We talked about goals for the coming year, even though we are leaving this school in just a few weeks.  The school only has a self-contained K-2 class, and the 3-5 class is at another school.  (Don’t get me started on how that could be easily resolved by using an empty classroom at the K-2 school, or how the answer to one parent who shared this concern with district administration was, “All kids have to go through transitions.”)

I completed a parent survey a few weeks ago as part of Olivia’s every-third-year evaluation.  I had to rate Olivia’s level of skill in areas of gross/fine motor, social, self-help, and more.  I circled more zeros (meaning ‘never’) than any other number. I was supposed to begin completing each section starting in Olivia’s age range (she’ll be 8 in May).  The assessment was sent back to me twice to complete sections for younger ages, because there was no baseline to score.  In other words, there were so many zeros circled, they couldn’t score it.   I can’t articulate the ache I felt while completing that survey.  And after the IEP meeting, after listening to the team share her test results and her progress and goals, I found myself in that place that I try so desperately to avoid.  The place where the world makes us fit, makes her fit. The place where she’s squeezed into a defined box of typical, and what’s left at the end is only a glaring statement that she doesn’t belong.  

There’s a father whose journey has led him and his family from the death of a child to the birth of two more and the adoption of a special-needs child.  His words inspire me, and often they speak my heart.  He wrote recently that his daughter had been through developmental evaluations, and that it was so jarring, because he and his wife don’t see her through that lens. 

Jarring.  Yes.  That’s it.  Because we don’t see her through that lens.

All of Olivia’s goals for her IEP must relate to grade-level standards in reading, math, and writing.  There are extension standards available for students like Olivia, but essentially, it all ties back to the grade-level standards.  So, they have to take a third grade math standard and make a goal for Olivia.  I’m sure there are many folks smarter than me who have created this system of extension standards, but I just can’t wrap my brain around the purpose of trying to make her fit in the box.  

Starting in third grade, Olivia has to take the state/federal-mandated assessments in reading and math.  Olivia qualifies for the “extend 2” version of the assessment, which looks very different than the typical multiple-choice test most other students take.  I was reminded that all third graders must pass the assessment before being promoted to fourth grade, unless there are extenuating circumstances.  I was also told, though I already knew, that because Olivia will be taking the “extend 2” tests, she will not be eligible to graduate high school with a diploma.  

Did you hear that?  The path we’re on, this journey of unknowns, this mysterious miracle of a life with our girl, is so different from most of her peers.  Yet, we still must fit in the box.  Since we don’t, since she doesn’t, we’re writing down on paper, and signing it, to say that our child will not graduate.  It seems all I see around me are reminders of what she can’t do.

Today, I read an editorial by a school board chairperson (don’t remember what state/district).  He passionately shared his concerns about budget cuts and special education mandates.  He isn’t advocating for special-needs children.  He is stating that a huge chunk of state/local funding goes to the special-needs population, at the expense of our “best and brightest.”  He even stated that most special needs children who are labeled with emotional disabilities are because of our "crumbling family structure."  He said that districts should have the flexibility to spend the money how they see fit, but that special ed mandates keep them from cutting into special ed.  He said the responsibility for the needs of special needs children should be met through social welfare, not education. 

My child.  He’s talking about my child.  He’s saying my daughter is worth less. Worthless. 

I came home from the IEP meeting last week and cried.  Many times.  The tears just appeared every so often, the aching of my heart causing them to spill over. 

Dear God, You made my daughter, just as you made my son.  Fearfully and wonderfully made. Her life is different than most, yes.  But, You know the purpose for her life is just as meaningful as her peers who are making straight A’s on their report cards and are able to dress themselves in the morning.  Heal my heart, Lord, because it aches with pain and anger and isolation and sadness.  This world is so broken, just as my heart.

Somehow, some way, please teach others what You’ve taught me through Olivia.  Help us all to see what You see. Help us to truly love, the way You intend.

Show me how to bring glory to You through our precious daughter and to help others know her incredible worth. 

And dear Lord, come quickly.