I am sure many of you may know, I am not a father, at least to two-legged kids. I have had many four-legged ones over the years, and many many nieces and nephews. However, being the "Go to Toymaker" in my neighborhood, I usually have a long line of clients out the door of my wood shop, and when walking my dog with my power chair, we also attract the youngsters in droves. You can imagine, I get a LOT of innocent questions about my power chair, or when I am hobbling around in my wood shop trying to work and making sure no one touches anything sharp! So I do have some experience talking to young-ins about RA.
I base my responses on a few different qualifiers. 1. How old the kid is that is making the inquiry and 2. Just what kind of question they are asking.
For No. 1, I get kids from a mere 3 yrs old asking about my chair, and these questions usually pertain to "Can I honk the horn?" or "Can I ride on it?" but I also get the occasional, "Why are you in that chair?" For these tender young souls I keep things very simple and pretty much avoid anything that may scare them of course. Usually a "yes" you can honk the horn. I added one of those twisted clown bike horns AAAOOOOOOAAAGAHHH under the arm, and the exchange usually ends in a cacophony of honks and small digital beeps from the useless built in horn. Many tunes have been tried from Mary had a Little Lamb to Row Row Row your boat. None of them recognizable, but the kids assure me that is what the tune was!
As for the ones asking about WHY I am in the chair, I usually just say "Well, I just don't walk very well." That usually ends up with the kids demonstrating how they can walk and run and giving me some tips on HOW to properly do it! I was once told that my shoes were the issue, the little girl who told me this had sneakers on that flashed when she stepped! (she demonstrated them quite convincingly) I have not tried this yet, but will let you know if it indeed works if I can find size 13 flashing light Ortho shoes!!!
For older kids, and you can really tell when they are being serious. They ask all sorts of questions! When you build and give them toys they ask for, you get a special bond, which seems to mean they can ask you anything under the sun as long as Mom or Dad doesn't hear them! If Mom or Dad does, they usually rush in in horror, and lead the inquisitor away! I really don't mind, they are just kids and I think if they learn more about these things, they may be more supportive and adjusted to seeing disabled people in public. With older kids I will usually tell them I have a form of arthritis that makes it very hard for me to walk. Usually in the summer they will notice my swollen - and usually black and blue - ankles and calves.
This is usually an easy way for me to explain it to them, as they can tell there is something wrong with my legs. Many times they will just leave it at that, but I have had a few times when they ask more, 'What is that?' or 'Why do you have it?' etc. I usually look for Mom or Dad at that point, just for permission to speak to them. Which has always been granted. I simply explain to them that the kind of arthritis I have affects my skeleton, and makes it so I don't bend very well anymore. I never go into details, or anything that I think may scare them, but I do believe that by telling them even just a little bit at their young age helps to spread awareness.
When I was young, I remember a lady down the block from where we lived that had RA, or rheumatism as it was then called. All I ever knew about it was that the lady had RA, and that her hands were severely twisted. This was in the 70s and long before biologics came into the medical arsenal to fight RA. I often wonder now how things could have been different. I don't remember ever speaking to this lady, we were always taught to be respectful, not to stare or bother people that looked different. While this may have been the ideal thing for my parents to teach us kids, I am sure it made for a much more lonely life for the lady I knew that had RA. I have thought of her many, many times since my DX of RA several years ago. I am sure that lady is long gone, she was elderly when I knew of her. I wish that I had asked a simple question as a kid... What is wrong with your hands?...... something like that in the innocent way only a child could ask. Maybe I could have befriended her and made her life just a bit happier. In any case, I would have known more about RA.
How do you explain RA to the kids in your life?
Published On: August 29, 2012