Becoming familiar with disabilities

my oldest has turned fifteen

I have a fifteen-year-old now. He looks me in the eye when we are both standing. The month following his birth always catapults me back in time. I see the beautiful flowers across parking lot at the Home Depot and the lunch I was not eating, the parking garage at the children’s hospital, the assortment of syringes and bottles and scales we needed to mix his formula, the corner “couch” where we attempted to sleep while he breathed a few feet away.

It’s a miracle that he lived. That miracle walks in my house and runs in my yard and rides the bus to school. He loves cartoons and swimming and plastic fruit and friends. He learned to spell “school bus” this year. Just this weekend, he played gaga ball with an adult friend and his brothers. His brothers kept exclaiming at how good he was at the game.

Familiarity enhances recognition. A few weeks ago, I had the younger boys in a group setting and my twelve-year-old walked over to whisper to me. He indicated another boy and asked me if that boy also had autism. I said that I didn’t know, but he had caught my eye too. “Make space for him.” He nodded and ran back to play. His brother’s disabilities are invisible; that means they aren’t readily apparent to others. Unless you are paying attention, or have a conversation with him, or are familiar with how disabilities can present, you are not going to know that my fifteen-year-old is disabled.

That is a terrifying reality. We are better as a society at finding children with disabilities cute.¹ We fawn over them, follow their social media accounts, extol their parents as heroes.² On the other hand, most people find fifteen-year-olds boys to be a nuisance. And that’s a “normal” fifteen-year-old boy. My fifteen-year-old, on the other hand, has a rare disease, autism, ADHD, anxiety, and intellectual disabilities. He watches preschool cartoons, has no concept of time, rarely uses an inside voice. He also has an advanced vocabulary, tells very believable but totally fake stories, and is excellent at entertaining babies.

People watch us when we are in public. He often holds my hand. He needs frequent redirection. I do not give a damn what a people think about him or our parenting, but I would love for them to understand more about disabilities. I would love for people to be curious instead of jumping to conclusions, to engage with him instead of pretending he doesn’t exist. I see people watch him when I am in public with him, and I have to face my anxiety every time he is in public without me. He needs all the independence he can safely have. It is good for him and I want that good for him. He is always with appropriate supervision. It is still hard to let him go.

I want everyone to see him the way I do. I want them to feel his joy and I want them to find some extra patience. Instead, in this month of autism awareness, we have a national official standing up saying ignorant things about autistic people. I see news like this on social media. I see how intent we are at “othering” anyone that is not like us. It is frightening. My son needs support. Our family needs support as we support him. What supports are present seem unsteady now as government programs are being gutted without thought to the lives of actual people.³

I have attempted multiple times to write this post. I typically refrain from talking about my kids online. I want to protect their privacy. I want them to be known by people whom they can know in return. I do not want incomplete glimpses of our family to lead people to wrong conclusions about either children or disabilities. I certainly don’t want to pretend that I have answers. Though I often remind others that a statement of reality—parenting a disabled child is really hard—is not the same as a complaint, I struggle to let myself live that publicly.⁴ But friends, parenting a child with disabilities is hard. I’m so glad we get to do it. We are exhausted all the time.

I started writing online when he was born. I wanted to update our family on his growth and his progress. This work is downstream of the blogspot where I posted pictures and slowly started writing about what I was learning and how we were looking at life. My ideas about family have changed. I let go of dreams that I had and embrace the reality of our lives. I have grown in patience, in my ability to live in the present instead of worrying about the next five years, in resilience, in not seeking the approval of others, in speaking up even when it makes other people uncomfortable. I am a different person because of Micah’s presence in my life. You would be a different person if there were disabled people in your life. Maybe you already are. If we could all learn to inconvenience ourselves for others, to stop centering ourselves and pay attention to others, the world would be better for everyone.

At the same time, I don’t need to get something from his life for him to be valuable. He is valuable as a person for no other reason than that he exists. God proclaims that value. God delights in him. It is our work to see and to agree with what God says.

God loves my fifteen-year-old. He delights in his growth and joy and He sits with him in his anxiety and discomfort. I want to mirror God’s heart for my son. I’d love to live in a world that was willing to make some space for him to thrive as well. I am overwhelming grateful for the people who are already doing that. They are many.

1. Except when we are busy disliking children as a whole.

2. Other people say horrific things in the comments.

3. This is only one example.

4. I don’t think that’s bad either. We could use a little more wrestle with what we post online.