Living in the Special Needs Spotlight

When our son Rory came into the world, I knew right away he was different. By the time he was one-year-old, doctors agreed with me. By two-years-old, most family and close friends were aware of it. However, it wasn’t until last November, when Rory acquired his first wheelchair, that the private reality we had been living as a “special needs family” was suddenly revealed to the world.

Prior to having a wheelchair, Rory could pass for a pretty typical baby.

He is small for his age. We would carry him propped on our hips or plop him into a stroller when we went out. Unless someone asked his age, we rarely had to explain about his global developmental delays. We did not realize it at the time, but we were living our lives in a short-lived stealth mode. Everything would change when we suddenly had a big, shiny sign on wheels that announced our child’s disability wherever we went.

The first time Rory used a wheelchair was at Universal Studios last year.

We hoped that the freedom of the chair would keep him happy during the long days in the park and would keep people from thinking he was a baby. We had no idea how effectively that strategy would work. Upon entering the park, we were suddenly ushered to the front of every line and regularly handed free stuff. Characters would chase us down for photo ops and hugs. Rory often looked stunned by the attention. We chuckled a bit about our “ little express pass,” but did not put a lot of thought into it. I don’t think we realized that this was our new reality.

After we returned home, we swapped the stroller for the wheelchair permanently. Suddenly, the way the world approached our family changed forever.

I have learned a lot from the interactions we have experienced in public over the last nine months. Around 19% of the U.S. population is living with a disability. If you leave your house, chances are you are likely to, at some point, run into a family like mine. I thought I would share some tips that may be helpful if you plan to interact with a special needs family while out and about.

Keep in mind that I am one parent to one child with visible disabilities and I really cannot speak for anyone beside myself. I am also not one to tell people what to do, so please just take these as kindly suggestions.

1. DO assume that whatever you are going to say has definitely been said before.

I know we all like to think that we are the most original people on the planet, but we rarely are. There is not a single remark, no matter how bizarre or personal, that has not been said before. I suppose, once upon a time, that clever comment about having my hands full or deeply personal question about my son’s chances of having children was new to me, but that time passed long ago. These days, there is literally nothing that would surprise me.

This does not mean that you should not strike up a conversation! I mean, please don’t ask questions about stranger’s reproductive systems, but if your question or comment is kind and respectful, I do not mind at all. I like talking about my kids! Please just go into it knowing that it has been said before, and if someone (Not me! Never me! I am always a saint!) responds in a short or exasperated way, it may just be that they have answered that question fifteen times since walking into Whole Foods and are over it that day.

2. DO NOT give strangers medical advice.

As I mentioned before, the disability community is a large one. This means most people know someone with special needs. If something has worked for someone you know, it makes sense to want to pass that information on! But there are just too many variables that could render the advice obsolete.

I cannot tell you how many times I have heard about something that might benefit my son through a chance encounter, only to discover it was inaccessible to us for one reason or another. I spend so much time feeling like I am failing him already. Even well-meaning advice can put additional pressure on a family that is already under stress. This does not mean you should never share treatment options that you learn about! Just maybe not in a check out line at the department store to someone you have known for 22 seconds.

3. DO give families their privacy. 

Rory’s disabilities have enriched our world in unexpected ways. One of these ways is by all the interesting people we meet. However, there are times when being in the “spotlight” begins to feel invasive.

On a family vacation recently, we took our boys out for ice cream. Rory caught the eye of the cashier. We chatted with her for a bit and then headed to our table. She followed us. We ended up talking with her about Rory until we finished our ice cream and left. She was incredibly sweet. However, the conversation hijacked our outing with our children. This happens a lot.

We spend a large portion of our life thinking, talking and strategizing about our son’s needs with doctors, specialists, therapists, family and friends. Sometimes, we just want to go to a movie in the park, or a holiday parade, or out for ice cream as a family. If you see a family enjoying an event or experience together, please consider if you would like to spend your evening at that event discussing your medical history before approaching another person with your questions about theirs.

4. DO NOT worry about anything your kids say or do.

I can assure you I have experienced that distinct mortification that comes from your offspring saying something horrifically rude about another person. When a child says something about my child and I see another parent’s face turn that familiar shade of purple, I just want to give them a hug. Please remember tip #1: no one is as clever or original as they think they are. That includes your five-year-old, wondering loudly why the baby has “noodle legs.” I do not mind. I am happy to answer their questions. I am not at all judging you as raising an ableist jerk either, I promise.

Also, do not feel you have to yank a child away from touching a wheelchair as if it is on fire. If you are not sure how someone feels about it, just ask! It is good etiquette to approach a mobility aid as an extension of the person using it. It is inappropriate for a person to touch an adult’s wheelchair without permission. However, kids are forever becoming fast friends and hugging or holding hands within five seconds of meeting. Rory loves making friends! He doesn’t speak and he doesn’t play in an age-appropriate way; his chair is what makes him approachable. We personally are fine with other children exploring Rory’s chair. He will let them know if they cross a line, just like any other toddler.

5. DO be kind. 

Almost every interaction we have had since getting Rory’s wheelchair has been a positive one. While sometimes it can feel a little inconvenient, I can honestly say that having a front row seat to how considerate humans can be has been a life-changing experience. 

Sometimes, I do not know that I would be able to manage in public if it were not for the kindness of strangers. People often go out of their way to help us. Kind words or a well-timed smile have turned my entire day around. It makes my life when someone stoops down to make eye contact with my son and talk to him or accept his hugs. Please never be afraid to be kind.

 

If I could only share one tip, it would be this: Please be kind. Wheelchair or no wheelchair, kindness makes all the difference in the world.

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