Wednesday, January 23, 2008

Invisible Challenges

Have you ever wished for a helping hand, maybe loading groceries into your vehicle, but you look just fine on the outside?

Do you imagine receiving suspicious looks after you've just parked in a handicapped parking space and walk into the store without obvious difficulty walking?

Or do you find yourself keeping personal concerns or challenges to yourself out of a desire to appear as close to 'normal' as possible?

Sorry, I don't have any great words of wisdom. But I do have a brief story, I'll share with you. Maybe you can relate.

Some of you may know that I teach piano lessons to students of various ages and abilities. Often when an older child in a family begins lessons, younger siblings also begin after they've developed an interest. One family I teach has four children who all take lessons and their mom has told me that I'm not allowed to: 1) move, 2) stop teaching, 3) or otherwise be unable to teach her children until the youngest reaches the age of 18. Now that's loyalty.

A couple of years ago, a new family joined the music studio when the older of two girls began lessons. After one year, the younger sister (we'll call her K.) wanted to start lessons, too. So that summer, K. began playing piano. Now over the years, I've developed some rather effective ways to engage new students and like to establish a natural flow in communication from the very beginning. However during that summer, K. was hard to read and would often not respond directly to questions or tasks being asked of her. I just chalked this up to the process of establishing mutual expectations and trust in each other.

After the school year began, K. and I were having a particularly difficult lesson and seemed to be unable to relate. Afterwards, K.'s mother asked her if she understood what I was asking her to do. K. responded that she did, but I took the opportunity to ask the mom a question.

"Is there anything I should know?"

I asked this because I have had parents who didn't think it important enough to share that their child was dyslexic or experienced some other type of learning difficulty. But this mom's response surprised me.

"Oh, K.'s deaf...didn't you know?"

Whoa....deaf. "No, I didn't."

"You can't tell, can you?" Well, obviously not.

"She's still learning to distinguish between background and foreground sounds. I suspect K. is having a hard time understanding what you are saying while you or she is playing at the same time. That's why I asked her..."

Ok, note to self. Do not talk and play at the same time. Easy enough.

To K., "please, if you don't understand something, stop me and ask. I often have to ask people to repeat themselves because I don't always understand them the first time either."

It took a little while for this message to truly sink in. But getting past the barriers to communication has afforded us a much richer relationship.

Also, K. no longer hides her earpiece under her hair, nor turns away when she needs to change the battery which allows sound to stimulate her brain through her cochlear implant. Now she can be more herself around me and I can be respectful her needs, both without either of us making a big deal about it.

I found it interesting that K. was so very self-conscious of her earpiece, especially when her father is deaf and has a cochlear implant as well. Wanting to appear absolutely 'normal' and devoid of special needs, K. was often trying to 'show' how very smart she is and not focusing on actually learning to approach the task at hand. Being willing to look me in the face and say, "what did you say?," K. demonstrates her intelligence and true desire to communicate. To understand and be understood.

Each of us face invisible challenges which others rarely are aware of. Ask yourself, "is there something which if I shared with those around me I could be understood better and in turn understand myself better?"

Are you trying to appear 'normal' and in doing so cutting yourself off from those around you? Are you loath to ask for a helping hand when needed? Are you suspicious of yourself when you park in the handicapped space?

Please, do yourself a favor and let those trusted individuals in your life know when you are faced by an invisible challenge. The solution might be as simple as talking after playing a passage on the piano, not during.

5 comments:

  1. Boy, I can relate. When I was younger, I took piano lessons at the Boston School for the Deaf and then when I was in middle and high schools, I played in the band. I played the trumpet.

    I wanted to be part the "hearing world". I am legally deaf but can hear almost normal with the help of technology called hearing-aids.

    Anyway, my wife recently convinced me not to hide my hearing aids by keeping my hair SHORT.

    I know I am qualified to have a disability card for handicapped spots but I declined because I know there are worst disabled people out there who needs them more than I do. Besides, I needed a good walking exercise so I often park way out.

    We do have a handicapped card for our daughter who has major cerebral palsy.

    Thanks for the good post. Jim :)

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  2. Jim, I'm so glad you stopped by and if you (and your wife) like the hair short...keep the hair short.

    Although, I'm laughing at the mention of high school band. When I student-taught during the final semesters of my music education degree, I had moments that I wished I could "turn my ears off." There was something quite overpowering about arming 70-80 kids with VERY LOUD instruments. In fact, that's one experience which prompted me to go to graduate school and not go into teaching band fulltime. One-on-one is so much more doable.

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  3. There were a few times I turned off my hearing aids while playing. I could hear without them because they are LOUD as you say. :)

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  4. what a great post lisa! and such good advice...it would make things so much better if everyone felt comfortable asking for the help they need. oh and i am so glad that jim has found your blog. we are becoming a nice little community here indeed.

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  5. Hi Lisa. I call this one synchronicity and our mutual friend merelyme will like that!

    I completely follow your meaning here and enjoyed the analogy. Though quite why the mother did not tell you K is deaf, I cannot fathom!

    I have just posted on my blog about sleep and fatigue, which you will know are not related in anyway for us PWMS.

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