…But I Can Change That

No, you DON’T know me…but I can change that.

I may look familiar, but you don’t know me.  You don’t know my kid. You may see us, and think you can judge, based on appearances, but things aren’t always what they seem.

Instead of getting angry, instead of feeling defeated, I can change that, or at least I can try.

Let me share some background and  the incident that started my two day rant.

Things have been rough around our camp. My older son has been in a full-blown flare, with high pain levels, rash, eye-inflammation, high fever, redness and joint swelling. He had been doing pretty well, and was weaning off his medications over the course of the last year. The recent turn of events had us feeling like we had run full-speed into a brick wall.

Before we enlisted the help of the “big-guns,” the serious medications (like chemo drugs- a standard course of treatment for many pediatric rheumatology patients) we wanted to make sure we were doing everything else that we could to make his situation better, and to calm the disease. We tweaked and increased his current medications. We agreed to a couple of rounds of steroids, and we added more physical therapy treatments, including aqua therapy.

Aqua therapy is pretty popular with the over 70 crowd at the location we attend. The warm water therapy pool (heated to 93 degrees) is attached to the indoor water park pool and lap pool for one of our suburban park districts. The university health care system leases the therapy pool and spa during business hours for physical therapy, and there is a strict policy of no patrons under the age of 16 allowed, unless accompanied by a therapist. I have never seen anyone younger than my own mom in that pool, except for my own child, and the physical therapists.

The park district pool- not open during therapy sessions.

The park district pool- not open during therapy sessions.

As usual, we arrived about 10 minutes early to our appointment. We went inside the therapy pool room, and tried to find a seat. The locker area outside was filled to the gills with kids and parents waiting to enter the lap pool area for swim lessons, so the only place we had to wait was the hot pool area. Problem is, there are only two small benches (that can seat 2, maybe three people) and most of the time, they are strewn with the “stuff” (towels, shoes, purses, etc) of the people in the pool.

I learned NOT to touch anyone’s stuff early on, or risk being read the riot act poolside! Even just a small brush aside to make room to sit can elicit stare so icy that you can feel the chill, despite the stifling 90 degree air temp they maintain in that room.

This day, there was exactly ONE place to sit. I gave it to my son. He was the one who has increased pain if he stands more than 5 minutes. He was the one wearing pool shoes (with no support, instead of the ones with his orthotics) he was the one exhausted from fever, and fatigued from his overall ordeal. He was being a trooper just by showing up. I wasn’t going to add to his misery by taking the seat. He needed it more than I did.

A few minutes later, he got in the pool with his therapist.

Working in the therapy pool

Working in the therapy pool

And that’s when it happened.

A gentleman, about my grandmother’s age came over to me and told me what a disgrace my son was. He went on to tell me that my generation was doing a horrible job with the next. I was raising a bad kid, and that was my fault. He obviously had no manners, since he took my seat. He was a disgrace, and I was just as bad for letting it happen. In HIS day….

I stopped him  there.

Excuse me, sir, but do you realize that we are at the therapy pool?  Do you see my son is in a session with the physical therapist? Did you ever consider that I am the only able-bodied one out of the two of us? Do you know anything about his condition? Did you know that he started new medications that are making him dizzy and faint? Did you know he may start chemo next week, that we weren’t sure if he was even well enough to attend a half hour session? Did you know that despite having a pain level of 8 in Washington D.C. this spring, he DID give up his seat to a pregnant woman on the train, because he felt that he was the more able-bodied of the two in THAT situation? Why do you think you know me, that you know him, or that you know our situation so well that you can assume we are “bad” people… especially for something like letting my son sit down for 5 minutes AT A PHYSICAL THERAPY OFFICE? We are on THIS side of the glass- not the fun side. Did that cross your mind, when you were making judgements?

No, you don’t know me….but I can change that. I told him all of those things. Sweetly, politely. I started by telling him that I understood his concern, but he obviously did not think through very much before he approached me. I also said that I appreciated that he waited for my son to be in the pool, out of earshot before approaching me, since it would have hurt his feelings. My son DID say, “no, you sit down, mom,” but since I knew his situation, I insisted. Do you still think I am such a bad mother, and he is such a disgrace now?

Because I was nice (but firm) he heard me. He flushed a bit, and apologized. The next session, he was there again, but had a hard time meeting my eyes. Grant was standing up at the side of the pool. He did hear.

Not all handicaps are visible. Not all situations are as they seem. My story is not unique in the JA community. I have heard from others who recount notes on their  car windows for parking in a handicapped spot (when they didn’t need the wheelchair that day, but would be unable to walk across the parking lot) I was with a friend who was subject to a tirade of cursing for parking in the handicapped spot, until he lifted his pants leg to show his prosthetic leg. We have heard the comments at church including “Its been three years- why haven’t you moved on yet, its only JA,” yet systemic JA has been known to take lives. People may not have the right perception, but I can change that. One person at a time, one incident at a time. They say you catch more flies with honey than vinegar, and I try to remember that too. People are a lot more receptive when I don’t treat them the way they just treated us. It makes them more open to my message, and more apologetic for the wrongs that they have committed. Not always, but mostly.

That is how I am  changing things. I WANT you to know me.

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Comments:

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  3. Good post! Hope this reminds us to see through that person’s perspective before we make judgement. Better yet, let’s not be quick to judge.
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  4. This is a good lesson for everyone. Never judge anyone’s situation. He deserved much less kindness than you showed him, but your patience made him hear, and maybe reading this will make others think.

    • It’s easy to judge, and if I had not “checked myself” and treated him with kindness, I would have been doing the same thing! I had no idea what had happened to him, to make him feel as though the youth today (my generation included) were so bad. This could have been the straw that broke the camel’s back for him. If I had been mean, I would have been no different. I know he heard me, and letting him know the real situation *might* make a difference, even if its just one person at a time.

  5. You know, I came across a quote this week from Mark Twain that said something to the effect of “the more I get to know about people, the more I love my dog.” I am so tired of people making judgements without really KNOWING. It’s easy to assume to know your situation, but only you wake up in your shoes each morning and I hate that some people just have to let you know their ill-informed, unsolicited advice.

    I have a friend who has a son with Down’s Syndrome. Just last week she was approached by her daughter’s teacher because her 7 y/o daughter made a comment about how she only gets to spend time with her parents when her brother is sick or away. The teacher asked my friend why she doesn’t spend more time with her daughter. My friend was understandably hurt. She gives EVERYTHING she has to raise her children and this woman assumed my friend was an unfit mother, without knowing the entire situation.

    You handled yourself so well in this situation and I applaud you for that. It’s difficult to keep your cool when you know what you have struggled with and what your son has been living with. But in doing so, you have opened up his eyes to the possibility that maybe “your generation” is doing just the right thing.

    XOXO and stay strong 🙂
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  6. Your comments in this piece really touched me Kim. I commend you for not going for the reaction that must have immediately welled up inside you. It would have been hard to exhibit patience with this man who stuck his nose in. I once read a post by a mom about not judging her in the grocery store when her child misbehaved. He had autism and she talked about seeing the judgmental stares from other shoppers. I’ve really tried since then to be sure I am not one of those staring. Great for you to help this man with the same realization about walking in someone else’s shoes.

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