Let the Child Lead the Way

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www.drmstream.com1

Let the child lead

the wayA Remembering of

Growing Up Deaf

Clipper Press


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When You Grow Up Deaf

When you grow up deaf there are so many things you don'tknow.

The sound of rain on the roof.

The roar of waves as they crest, their agony as they crash.

The huffing sound of someone running behind you.

The scraping sound your nails make as you scratch your

neck.

The brisk snapping of gum.

The clanking ring of an old rotary phone.

How hard typewriter keys slap the paper against the

platen.

The crinkle of cellophane and the crunching of paper when

you crush them in your hand.

The rattle of branches and the flapping of leaves when thewind comes up.

The gentle whisper of your own sigh.

When you grow up deaf you worry that you'll never really

know the world, that every moment your back is turned

something irreplaceable will pass you by. When you close

your eyes, silence.

When I published this short prose poem on my web site, drmstream, Ihad several readers chastise me for offering an incomplete and unhelpful picture of a difficult experience. The assumption, given that I primarily write fiction and often share sketches of different characters, was that Ihad imagined the experience.

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I wondered where these readers had come from. This was the firsttime that I had gotten such personal, negative feedback to a sketch.Checking my log files, I discovered something sobering: When you type

how hard it is to grow up deaf into Google, my prose poem When yougrow up deafwas the first resource returned by the search engine.

Someone typing in that search string probably isnt looking forliterary-minded prose poems. They are looking, I imagine, for tangibleinformation that can help to allay the confusion and fear of raising a childthat can not hear. My piece, as vivid as it is, would only intensify thesearchers sense of what it is like inside their childs silent world, andcould increase the feeling of helplessness that afflicts the parents ofimpaired children.

I wasnt imaging when I wrote those lines. I know.

I grew up deaf.

I wasnt profoundly deaf. Just like sight or mental functioning, thereare degrees of hearing loss, and while the most profound loss most easilydefines the condition, the experience of growing up with a high degree of

impairment of one of your critical faculties is challenging and confusing.

I have one word of guidance to parents of an impaired child.

Let the child lead the way.

I did not get hearing aids until I was 18 years old and going off tocollege. I grew up in a big family of meagre circumstance, and even with80% loss of hearing, I didnt qualify as the most handicapped one of the

group. One of my sisters is profoundly retarded. She didnt learn to walkuntil she was six, she needed constant supervision and she combined themental faculties of a two-year old with the hormonal momentum of anemerging adult..

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What was it like to growup without being able to hear?

When you are given the space

to become part of the group,to hang out with kids in theneighborhood, to make your

way through school, to createthe identity that you want, youfind ways to adapt andconform.

You watch the worldclosely. You mimic what youcan. You gravitate to closerelationships. You have todominate a group conversation because you cant follow the fast back andforth. Some kids think youre weird. Some kids get it and try to watchout for you. You read. You work with your hands. You feel on theoutside. When you run track you have to compensate for starting a splitsecond after everyone else because you dont know whether the gun went

off or not.

You sit in the hearing booth and listen for the bloops and beeps andhums of the testing tones and wonder whether youre getting better. Youdrive through a neighborhood with a Caution Deaf Child road sign and

worry that youll have that put up on your street and be branded as anoutcast.

What can you do when you are this parents child? My mother had the

philosophy of maximum information and minimum intervention. When Istarted a new year at school, she would go talk to all my teachers and tellthem that I had bad hearing. She would encourage me to sit in the frontof the class. Shed ask the teachers to make sure that I got each daysassignment.

Then she would get out of the way.

I would sit in the back of the class. Thats where my friends sat. Id

start missing homework and doing poorly on tests. She would go talk towww.drmstream.com

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the teacher. And the next day, Id discover Id been moved up to thefront.

Her instinct was to let me learn myself what I needed to do to adapt.She knew that I was going to make mistakes.

There were a few times when she intervened quickly and demandedresources and attention for me. In second grade, I was so unresponsiveto verbal cues that they determined that I was mentally handicapped andmoved me out of my classroom into a remedial group. My mothermarched into school and excoriated them: hes smart, hes just deaf!She demanded speech therapy to alleviate my lisp, she insisted that the

teacher in my second grade classroom take the time that I knew what work there was to do, andshe watched them like a hawkto make sure they deliveredon their promise.

The second time sheintervened was when I wentto college. She worked withthe state rehabilitation arm inRhode Island to get me free

hearing aids. She alsoconvinced them to give me ascholarship to go study in

New York. Her reasoningwas simple: youve been ableto get through life so far

because you were able to create small situations for your interactions;when you go to college, youre going to be in large groups that are out ofyour control, so you need to have better tools.

The day I got the hearing aids was the day that I realized what youdidnt know when you grew up deaf. The doctor crumpled a sheet of

paper in his hands and my head throbbed. The phone rang and I jumpedout of the seat. My clothing made swishing noises when it brushedtogether. For the next part of my life, I learned what it meant to be a

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hearing person. I discovered what my talents were. I went through aneducation in relating to others. And I moved into life with my handicapameliorated by micro-circuitry and plastic cases that I put into my ears

each morning and took out each night. It was...and still is...a miracle.

But you never stop being deaf, even when you have the tools to help you offset it. When I take out my hearing aids, I drift into a world ofsilence. It is a familiar and comforting world, where I am not hyper-alertand vigilant. It is the world that I know from when I was a child.

This is a vivid memory. I was standing with my bike on the countryroad we lived on. Im with a couple of other kids from the neighborhood.

Were planning where we are going to go. Im watching their lips,picking up a word here and there, and piecing it all together. We climbonto our bikes, about to head off. In that moment when your bike is stilland you are balanced on the pedal starting to push off, I looked up at thetrees. They were green and full. They were waving around wildly. I sawthe motion, felt the sensation and heard nothing.

My mother gave me the space to find myself and stayed present so shecould make sure the world gave me that space back. She didnt try to

protect me. She let me take the flute and play in the school band -- badly-- without telling me that it was folly. She let me go ride my bike on the

busy town road, but only after having my friends swear they would ride infront and behind me. She let me sit close to the television so I could hearthe dialogue without telling me that I was going to go blind.

Still, she was the mother of a child who was missing great patches ofexperience. She was the mother of a mentally-retarded child. She looked

at these misfortunes and asked herself, What have I done wrong?What I wish I could have told her then is that we were all right. And

that when she saw me sitting in mute and still, reading for hours or staringout the window, or tinkering with an old radio, that I was inside therichest and most magnificent place that I could possibly experience, myimagination. Her choice to give me as much of life as I could handle may

have been painful to witness, but it was a profound gift and an act ofcourage.

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Let the Child Lead the Way

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