Autism · Chronic Illness · Lupus

Seen and Unseen Disabilities (what I learned when my son used a wheelchair)

The day I ordered my son’s wheelchair was not a good one.

Just pressing the “ship now” button made my heart hurt.

After years of autism therapies and anxiety medications.

After years of doctor’s appointments and educational evaluations.

After years of learning everything possible about his sensory system and urgent need for tactile input.

After what felt like years of so much, he was also diagnosed with two chronic autoimmune illnesses.

Sjogren’s Syndrome (extremely rare in males much less twelve-year-old boys) and Lupus created a totally different set of needs.

Crippling joint pain, extreme fatigue, constant swelling and difficulty breathing became part of my son’s everyday life.

A wheelchair was our only option for any extended time away from home. It was my son’s only option for independence and being able to keep up.  So, with what felt like defeat, I ordered my son his wheelchair.

autism, mental illness, learning differences, autoimmune illness

The first time we used the chair, it was to attend a field trip with our friends to a museum.

I was nervous and so was my son.

It took twenty minutes for me to figure out how to collapse the dang thing to get it into our car.

It took twenty more to figure out where all the wheelchair accessible ramps were to meet-up with our group.

Surrounded by friends, the trip was a wonderful success. One of the boys my son’s age offered to push the chair so that he could hang out with his friends (and not me) the entire day. My friends loved on us and told me he was doing great. I knew they would be amazing.

What I didn’t count on was how much nicer everyone else was to us.

When we couldn’t find the ramp we needed to get into a building, one museum visitor walked us over to it.

When my son needed something to drink (excessive dry mouth is a constant symptom of Sjogren’s) a gal allowed us to go in front of her to order at the snack bar.

It felt so much easier to get what we needed when we needed it.

autism, mental illness, learning differences, autoimmune illness

Seen and Unseen Disabilities

A few weeks later, we were waiting at the airport for a flight.

Again, I was nervous.

Our last trip had not gone well. My son had melted down in the airport’s overwhelming crowds, blaring announcements and incessant waiting.  As he grew more and more dysregulated, a man had come up to him, shot me a “you need to parent your own kid” look and told my son, “Just stop it! You are too old for this. Now stop it!” I started to step in, to say, “My son is on the autism spectrum and this is very difficult for him. If you have any questions, please let me know when he is calmer,” (my new standard line for just this type of incident) but he left in a huff without giving me the chance.

A year later, waiting at the same gate, with the same crowds, listening to the same blaring announcements over the speakers, my son started to meltdown again.

This time, he was sitting in a wheelchair.

As he grew more and more dysregluated, I grew more and more tense.

A man sitting next to us said, “Oh man. I feel you, buddy. Airports suck.”

Another lady, across the way said, “Poor baby.” She smiled at me and asked my youngest son what he was playing on the iPad so that I could focus on his older brother.

When it was time to board, no one glared at us for taking advantage of early boarding.

They nodded. They smiled. They moved aside. It was surreal.

Same child, same circumstances, one difference – the wheelchair made his needs more visible. 

autism, mental illness, learning differences, autoimmune illness

Please hear me when I say, I do not think it is somehow easier to have a physical, “seen” disability. I am quite certain that people can be cruel no matter what the circumstances.

Nor do I think being in a wheel chair is somehow convenient. It’s not. Our limited experience taught us that no matter how far we have come in creating inclusive, accommodated environments, navigating the world in a chair is extremely challenging.

I am sharing our experience in the hopes that maybe, just maybe, it will help us consider our reactions and responses to those who are struggling – for any reason.

Because of my experience, I find I think differently about the homeless man on the corner, clearly deep in throes of mental illness.

He could be my youngest son.

Or the little boy throwing his shoe at Costco.

I am certain my oldest son did that more than once as a child.

Or the struggling to catch her breath, overweight woman fighting to push her grocery cart.

I see her and I see what could be my son.

The unseen requires that we set aside judgment first, and respond to the individuals before us.

The unseen requires that we move towards both awareness and response.

 

I am asking for the benefit of the doubt that the wheelchair gave us.

I am asking for compassion.

I am asking for grace.

6 thoughts on “Seen and Unseen Disabilities (what I learned when my son used a wheelchair)

  1. So far, there isn’t anything you write about I don’t agree with or identify with. Your blog is awesome ! The way you write is beautiful ! Thank You !

  2. This is so beautiful, and a reminder that a person’s *story* always matters, no matter how appalling their current behavior, choices, life situation may be.

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