Love: The Challenges of Raising a Child with Disabilities 8 of 9

Uploaded by PSB1829 on 24.03.2010

Okay, so I'm going to tell you where Rachel is now,
and then I'd be very happy to take questions.
This is... I'm going to read this.
People hate readings, but this is only 820 words,
so it's not long.
This was a little "Lives" piece in the "New York Times,"
and it ran in October 2007, so not so long ago.
It's called "Independent Means."
I didn't name it.
"My daughter Rachel, who is developmentally disabled,
"lives in a community-living arrangement with two... tru..."
I'm going to start this again.
"My daughter Rachel, who is developmentally disabled,
"lives in a community-living arrangement with two roommates
"and 24-hour staff.
"It's only a half-hour from my house in Pittsburgh,
"so I stop by about once a week.
"Rachel calls me a dozen times a night, but is unenthusiastic
"about my visits.
"My feelings aren't hurt.
"Even though two years have passed since her move,
"it's still thrilling to see her happy and relaxed
"in her spacious town house apartment,
"and her roommate, Le Ann, loves to see me.
"One May afternoon, I arrived just as the ladies
"were coming home from work.
"Le Ann, who does housekeeping for one of the downtown hotels
"wears a navy blue uniform with her name tag
"pinned perfectly straight.
"Even before I ask how many rooms she cleaned that day,
"she holds up seven fingers, flashing
"those digits with pride.
"'Wow,' I say, and she wraps her arms around me
"and squeezes hard.
"I'm still in her embrace when Lisa walks past,
"swinging her Exceptional-Adventures lunch box
"and then Rachel in a graying 2004 Mitzvah Day
"t-shirt and shorts.
"'Hi ma,' she says.
"It doesn't matter if a day or a month has passed,
"she always greets me in the same matter-of-fact way.
"While Rachel's emptying her backpack, Le Ann takes me
"into her bedroom to show me the card her boyfriend gave her.
"The room is pleasantly crammed with pillows, shelves of CDs
"and videotapes, Pittsburgh Stealers memorabilia,
"dolls that cry when their bellies are pressed,
"and smartly-outfitted teddy bears.
"Inside the greeting card, below the store-bought sentiments,
"her boyfriend has written, in shaky block print,
"'I care for you a lot.'
"Le Ann says he's nice to her.
"In the kitchen, Rachel is calling her sister
"or someone from work-- the first of scores of phone calls
"she'll make that night.
"When I ask Le Ann how Rachel has been, she says,
"with a hint of delight, 'She's been torturing me.'
( laughter )
"It's what Rachel always says of Le Ann--
"'She's torturing me!'
"Sometimes one tortures the other by collecting
"too many cards during an Uno game.
"Sometimes torture happens when the name calling game
"has gathered steam and they've passed from 'dork'
"and 'turkey head' and 'walrus nose' to 'monkey butt.'
"As far as I can tell, torture ensues any time
"the word 'butt' is uttered.
"Alas, Rachel wakes at dawn and barges into people's rooms,
"then she really does torture them.
"I think she tortures her boyfriend Peter, too.
"Rachel and Peter do packaging and assembly work
"at a supported work site.
"They used to sit together at lunch,
"but they're no longer allowed.
"'Too much hugging and kissing,' Rachel said.
( laughter )
"Peter buys Rachel gifts.
"Rachel never reciprocates unless her roommates
"or staff intervenes.
"She's a torturer, my daughter.
"A heartbreaker too.
"I wish she were kind, but she's never seemed capable of empathy.
"Not that any of us have given it up.
"Sometimes I think she has it in her.
"Since moving here, she's shown herself capable of many things
"that once seemed out of her grasp--
"like dialing a phone number, something I could never
"teach her to do.
"Often, it's hard to know what Rachel thinks or comprehends
"because woven through her abundant conversation
"are other people's expressions, their gripes, and their desires.
"Since adolescence, though, she's been very clear
"about wanting to move out of my house.
"When asked where she wanted to live, she'd point to me and say,
"'Far away from her.'
( laughter )
"'I hate this house,' she often screamed.
"In her 2002 yearbook, students were asked to name
"their fondest wish.
"One classmate wished she could walk on her own.
"A second wished he could be a famous rap artist.
"A third wanted to be a millionaire.
"Rachel wished for, 'an apartment all my own.'
"For so long, it seemed she'd never get off the waiting list
"for a residential placement, and her wish
"would never come true.
"I began to fear that my once-cheerful daughter
"would end up miserable and out of control, unable to find
"a place where she could fit, and that
"caring for her would break me.
"The day she moved into this apartment,
"everything began to change.
"Rachel's room was also nice.
"Her sister and I brought her beautiful sheets and pillows.
"On moving day, we hung posters, set out family photos,
"and assembled the red computer desk where she now sits,
"playing computer solitaire.
"I nose through the closet and ask if there's
"anything she needs.
"'Batteries,' she says,
"I get her to show me the album from the Florida vacation
"the apartment took last fall, never tired of seeing
"pictures of my daughter and her roommates
"sipping fancy drinks and dancing.
"Before I go, I offer to take her to dinner.
"As always, she turns me down.
"She'd rather eat here with her friends.
"Le Ann hears Rachel walk me to the door
"and races to hug me goodbye.
"'I love you,' she murmurs.
"'Love you too,' I say, then open my arms wide and wait
"for Rachel to fall in them.
"'Love you, Rachel,' I prompt in a teasing voice.
"'Love you, ma,' she says at last.
"The yearning to feel that she does love me wells up
"the way it so often did before she moved--
"when it seemed as if I meant nothing to her.
"I run my fingers through her curls and remind myself
"that it's enough.
"It's more than enough to see her in this life
"that makes sense.
"This is what happy looks like.
This is her life."
Thank you.
( applause )