Labels

Ethan, our 8-year-old, had his three-year reevaluation and annual ARD meeting recently. Yes, he still qualifies for special education services and all the therapies and supports that come with his individualized plan. This meeting was different though. This time they evaluated him for a suspected intellectual disability. It was
something that I feared was coming, something I prayed he would not qualify for. But as he got older, I had been watching the gap between Ethan and other children get wider. He was not meeting developmental milestones, not able to do what other, typical children do.

I was telling myself that an intellectual disability was not a big deal. I have worked with thousands of individuals with intellectual disabilities within school districts and through my work at HEROES. Our older son, Nick, has an intellectual disability along with a cluster of other things.

I was good going into the meeting with the evaluation team, but when it came time for the licensed specialist in school psychology (LSSP) to review the cognitive and achievement portion, my stomach turned upside down. I knew what was coming. I heard the words, and tears started flowing.

It’s just a label, right?

But as a father, hearing that your second son has a cognitive disability just crushes you. It was like an eraser in my mind—as soon as I heard those words, the hopes and dreams I had for him were being wiped away. The milestones for a healthy, typical boy and then a young man will not happen now. I will never know what it is like to cheer on my son as he plays on a sports team. I may never hear either of my sons say the word “Dad.” It hurts my heart pretty good.

In the meeting, I snapped back to reality as the LSSP went into some robotic verbiage. “Were you not expecting this? You know, he is still the same boy.” Yes, I know he is the same boy. But at that time, I did not need the clinical crap. It was, and is, OK to be upset.

The most difficult thing to swallow is that no evaluation will capture the true abilities of Ethan or anyone with physical and medical disabilities like his. Not one of the standardized assessments can truly gauge the capabilities of a person who cannot speak or has neuropathy and fine motor issues. An assessment is just a tool, and it has its flaws. Yet, we still do rely on these assessments. They can identify some positive things. They can show areas of strength and areas where you can support your child. They can show you what is important to focus on—and what is OK to let go.

I may not be on the sidelines watching my sons play a sport, but I will always be their biggest fan and cheerleader in whatever they choose to do and whatever they participate in. I am blessed to be the father of a
wonderful daughter. I get to be a dance dad and watch her perform and be the best she can be. I am lucky to be able to hear her say “Daddy” and “I love you.” I do know the boys love me too—when Nick leans in (it’s not a real hug, because he hates them, but he leans his head just slightly on mine), and when Ethan cuddles and rubs his little hand on my cheek—I know the love is there.

So yes, I have two children with severe medical issues and cognitive disabilities. But labels are not what make the person. Everyone runs his or her own race. Some people may go down different paths and around different obstacles, and it may take them a little longer, but we are all aiming for the same finish line.

A label means nothing. It is just something that will secure services for your children in the future—a future you fear, but a future that cannot be undone. My family is wonderful, fantastic and perfect, whatever the assessments and labels say.

Love what has been graciously provided, love the ones you are with, as they are, and remember that a label is a tag inside your shirt.