I am new at this – but I am not. Maybe, I just feel new to being a mom to special ability kids because I still fumble to find the right words. I don’t think quick enough on my feet to diffuse a surprising situation, and I am still shocked over how folks will treat someone they see as disabled.
I want to start by saying that I don’t intend to rant or rave. I am not complaining, and I am not sure a blog post is the place to really help anyone understand kiddos with special needs. Inspired by this post, I realize that we have to tell the stories of our amazing kids. I really think that many people have not spent time with kiddos who might be labeled in society as disabled. So, I hope this post can serve as a peek at some of the things we face, comments that are made, and what we experience.
Little Man has spent times in and out of a wheelchair leading up to and after re-amputation surgeries. We always have to find a new rhythm. During these times, I realize anew how inaccessible the world can be to those who are immobile, as well as how unaware folks can be.
For example, there is one handicapped stall in the bathroom. Four other stalls are unoccupied, but for some reason the handicapped stall is being used. The desire for extra leg room means that Little Man has to wait unnecessarily to go to the bathroom. What stall your choose in the bathroom…it matters.
At the grocery story, children point, stare and ask rude questions like, “What is wrong with you?” – and all the while the parent stands by gawking. Saying nothing. Word choice matters. Body language matters. I so wish in these situations (Yes, I did mean to make that plural. You could change the location from grocery store to park, church, beach….it happens everywhere.) I wish I could pull the child and parent aside – smile and say- “Let’s not use those words. How about you ask us about the bandage or about the wheelchair?
At times even when comments aren’t made, folks will turn away (or even run from us) hoping to avoid uncomfortable situations or words. Like one day at the park when Little Man’s leg falls off coming down a slide. A child sees his leg flying down the slide first. She screams. Cries. Instead of helping his daughter engage and understand, her dad grabs her by the arm and literally runs. Their park visit cut short because they just weren’t sure what to say or do when my son’s leg came off at a bad time.
I am not new at this. We have been learning the language to use. Preparing our children how to be kind even when those around us don’t exactly know how to handle us. I step in to explain and hopefully help those we encounter to see the world through the eyes of our kiddos….just a little bit. Our goal is for our kids to understand that they are special, loved, unique. There is nothing wrong with them.
So, I thought I was ready. A teen in a wheelchair kinda fits with my experience.
But, not really.
I wasn’t prepared for everyone who really is trying. They want to connect – to include our son in conversation and to help him experience things around him. I think folks just don’t know how to do that. They look at him and wish his life was different – that he didn’t have to be in a wheelchair – and wonder why life handed him this difficult hand. (In other words – pity.)
I truly want to believe that this all comes from a very good place in the hearts of people – but there are just a few things I wish I knew how to change…..
I am walking through the store with two teenage sons. If you wouldn’t dream of patting my other teenage son standing beside me on the head, then please do not consider doing that to my teen in a wheelchair. No head pats. It also is not appropriate to push his chair for him, to offer to help with wheelchair transfers, to ask about his medical condition, to lean down into his personal space or to hug him.
(Frankly, hugging is a big deal. No pity hugs. No. No. No. And actually while we are on the subject – not pity waves, no pity hellos, and hold all pity comments to yourself.)
Why? Why do I become tongue twisted when a woman at church leans down to my teenage son kisses him on top of the head and hugs him? My son who she had never met before. My son who is in a wheelchair and can not lean away. That, my friends, was a pity hug. A hug that says I wish life wasn’t like this for you.
I appreciate the sentiment and the effort, but I really wish I had the chance to have a redo with this woman. I would explain to her that my son has strength, perseverance, and a good attitude thru tremendously difficult situations. I’d invite her to sit with us and get to know how amazing he is…just the way God made him. I have learned so many things from him. I know this woman could too – then she would be in a place to give him a real hug.
At an airport playground a boy came up to Little Man who was wearing shorts and pointed to his leg. “That is weird.” He said. My son replied….”It isn’t weird. Let me show you.” He takes off his leg and starts to hop. “My super power is that I can hop longer than anyone else.” The little boy and his brother stood and stared. I was biting my nails wondering when I should jump in myself. Then I heard the words….”Wow! That is so cool!” Before this lion momma did anything in defense of her cub, Little Man had half of the kids in the play place hopping on one leg. He did out last them all. The next hour was filled with good play. That is how change happens. Weird turns to cool. Pity never takes root. Abilities are seen and applauded.
B won’t be having hopping contests at a play place, but you can get to know him too. He enjoys conversation. You can do this by taking a step back so you can look him in the eyes, pull up a chair next to him or even squatting down next to his chair. (Not sure if I can explain, but that is all very different than leaning down into his space.) Listen to his newest tongue twister – he loves finding new ones in Chinese and now in English too. He loves playing board games and going for walks. You could hold the door for us. Let B carry your bag. He loves helping and is awesome at teaching folks new words in Chinese if you are interested in learning.
Hopping along side my one legged wonder or sitting next to my strong teen – that is where you will find hope alive. Those are the positions that make change happen. Help us write a different story – a story of open communication and seeing things from a different perspective.