When They Say, “Very Delayed”

To the parents reading the school test scores that will get their child special education services at school, I see you.

My daughter is fourteen years old and has been in the public school system since she was three years old. 

Every year Olivia has an IEP meeting. Her IEP team goes over all of her strengths and weaknesses and then we create goals based off of data collected from previous goals and testing. 

Every three years they do extensive testing to figure out what range she falls under cognitively, her sensory motor skills, social skills, and emotional maturity. 

Those scores help decide if she still falls under the “educational” diagnosis of autism. Even with a “medical” diagnosis of autism if Olivia were to score within a certain range on some of these tests it may take away her “educational” diagnosis. 

The educational diagnosis is what drives all of her school services and accommodations to help her succeed and reach goals. 

As I read over this 13 page document that was originally created in 2012, the same words pop out over and over again, “very delayed” “severe delay”. 

I spend every single day with this child, I know that she is delayed and that it is a significant delay. The tests are only reflecting what I know deep down. 

I also know that without these tests she wouldn’t get all the support she needs throughout her day. I know this, my brain fully comprehends the magnitude of the situation. 

But, my heart… My heart aches and the tears flow as I read each score and explanation. Those damned words hit me like a train running full speed ahead “VERY DELAYED”

I go through this every time. It is one of the reasons I get the scores BEFORE our big IEP/MET meeting. I can let it all sink in and let the emotions wash over me at home and not in a room full of people. 

Once I let that all out, I can begin to prepare for the meeting. Her father and I are full partners in her IEP team. Our thoughts and assessments are just as valid as the schools part of the team. 

After all, I am her voice and advocate so she needs me to pull myself together and to think clearly and concisely. 

The emotions have to come first for me and I need to grieve. Grieve the original picture I had in my head of what her life would look like. Through the process of grieving I find acceptance and growth. 

Every three years as I stare at the words “Very Delayed”, I need a moment to grieve and process those words. Once that is complete, I am ready to work out all the details with her team. 

I will go to the ends of the Earth to get her every accommodation and opportunity available to her. “Very delayed” does not encapsulate her whole self worth. It’s just a description to drive her educational services.  

Here are some other words: “charismatic, loving, observant, hardworking… EXTRAORDINARY”…

Written by Laura Simzyk of Olivia’s Extraordinary Journey