For Families With Children Who Have Special Needs, a Little Break

[Guest guest]

For Families With Children Who Have Special Needs, a Little Break

Nagle for The New York Times

Catalina , 17, gives some free time to Choi, 39, by

baby-sitting for her sons, Logan, 6, left, who has an attention disorder,

and Spencer, 3, who has a developmental disorder.

By SUSAN DOMINUS<

<http://topics.nytimes.com/top/reference/timestopics/people/d/susan_dominus/

index.html?inline=nyt-per>

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ndex.html?inline=nyt-per>

On Thursdays, Ms. Choi can feel reliably confident that her husband will

not come home to find her tense and exhausted. By bedtime, both of her

children will have eaten dinner and been bathed. The 3-year-old, Spencer,

who has a speech delay and a developmental disorder, will not have walked

around the living room in self-soothing circles the moment she turned her

attention elsewhere. Her 6-year-old, Logan, who has attention deficit

hyperactivity disorder, will have finished his homework.

Thursday is the best day because that is the day Catalina — cheerful,

well trained and all of 17 years old — comes to watch Spencer and Logan,

each for an hour, separately, and peace descends on the family’s two-bedroom

apartment in western Queens. Competent, reliable baby sitters are closely

guarded treasures for most parents; for families who have children with

special needs (but who do not qualify for state-supported respite care),

such baby sitters may exist only in the realm of fantasy. Those who need a

break the most, then, are often the least able to find someone they trust to

provide it.

Several such parents expressed that sentiment several years back to Joy

Levitt, the executive director of the Jewish Community

Center< <http://www.jccmanhattan.org/> http://www.jccmanhattan.org/>in

Manhattan. And so, since 2004,

the center has been offering,

occasionally, a six-week training

class< <http://www.jccmanhattan.org/category.aspx?catid=2579>

http://www.jccmanhattan.org/category.aspx?catid=2579>for young

people interested in caring for children with autism or other

developmental disorders. Catalina is one of 34 graduates of the class.

At the outset, Ms. Choi did not give too much detail, beyond the boys’

diagnoses, to Catalina, whom she met a year ago in the elevator of the

seven-story building where they both live. “You don’t want to scare them

away,” said Ms. Choi, 39, who is home with her children full time.

Once she started, Catalina was, at times, bewildered — like when Spencer

started jumping, over and over, on the toy kitchen set up in his parents’

bedroom. “I didn’t know what to do,” said Catalina, who earns $8 an hour. “I

felt closed off.”

After one harrowing afternoon at an ice-skating rink, when Spencer kept

running away from Catalina as his mother tried to oversee Logan’s birthday

party, Ms. Choi fully expected Catalina to quit; other sitters before her

had not worked out. “I saw on her face that she was exhausted,” Ms. Choi

said. “She looked overwhelmed and confused.”

A few days later, Ms. Choi hugged Catalina and told her it was all right,

she understood if she wanted to stop coming.

“I told her, ‘Don’t worry, I’m not going to quit — I’m just going to try

harder,’ ” Catalina recalled.

Sometimes, without training, all the trying in the world will not be enough,

which is why both jumped at the opportunity for Catalina to take the Jewish

Community Center class last spring (Ms. Choi paid the $36 fee). Catalina

roped in two friends, and on their hourlong commute back to Queens, after

the two-hour class, they all talked about what they had learned. Catalina

finally understood why, when Spencer behaved wildly, his mother hugged her

son to calm him down, rather than disciplining him. She learned to use the

simplest possible language, or pictures, to plan out the day’s events. She

began to address Spencer and Logan at eye level, on her knees. She grew

confident redirecting the boys’ energy when they felt out of control.

“Now I actually like Catalina to be in the park with Spencer even more than

my own husband, I’m sorry to say, or me,” Ms. Choi said. “Both of us are so

tired. Catalina has so much energy. And she understands what to do.”

The challenges of raising children in New York are myriad. But the

opportunity in the universe that is a New York apartment building surely

offsets those hazards: from a chance encounter with a young woman in an

elevator, Ms. Choi found a lifeline for her children, and a young high

school student found a calling. Having seen Spencer progress, Catalina now

intends to pursue a career in speech pathology.

With Catalina, Ms. Choi said, Spencer takes more risks, like going on a

swing, which he had long feared. Gently pushing that tentative, hopeful

child for the first time, Catalina said, was one of the proudest moments of

her life. “I felt like I actually took a fear away from this kid,” she said.

“And maybe he’ll think, if I can go on a swing, I could become the

president. They don’t have to see what they have as an obstacle. I thought,

O.K., I really did a good job, here.”

Ms. Choi no longer worries that Catalina will quit.

E-mail: <mailto:susan.dominus%40nytimes.com> susan.dominus@...

<bergenjewishspecialneeds/message/1369;_ylc=X3

oDMTJycmpoY3NjBF9TAzk3MzU5NzE1BGdycElkAzE0NDIxNzMzBGdycHNwSWQDMTcwNTA4MjE1NA

Rtc2dJZAMxMzY5BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyODg3OTczMTQ-> NYT: At the

Age of Peekaboo, in Therapy to Fight Autism

Posted by: " susan berger "

<mailto:alsus131@...?Subject=%20Re%3ANYT%3A%20At%20the%20Age%20of%20Pe

ekaboo%2C%20in%20Therapy%20to%20Fight%20Autism> alsus131@...

<danceema> danceema

Tue Nov 2, 2010 2:17 pm (PDT)

At the Age of Peekaboo, in Therapy to Fight Autism

DaSilva for The New York Times

By APRIL DEMBOSKY Published: November 1, 2010

Carmen and Saul Aguilar worked with Sally to help their son Emilio.

She has donated all manner of biological samples and agreed to keep journals

of everything she�s eaten, inhaled or rubbed on her skin. Researchers

attended the birth of her second son, Emilio, looking on as she pushed,

leaving with Tupperware containers full of tissue samples, the placenta and

the baby�s first stool.

Now the family is in yet another study, part of an effort by a network of

scientists across North America to look for signs of autism as early as 6

months. (Now, the condition cannot be diagnosed reliably before age 2.) And

here at the MIND Institute at the University of

California

Medical Center, researchers are watching babies like Emilio in a

pioneering effort to determine whether they can benefit from specific

treatments.

So when Emilio did show signs of autism risk at his 6-month evaluation �

not

making eye contact, not smiling at people, not babbling, showing unusual

interest in objects � his parents eagerly accepted an offer to enroll him

in

a treatment program called Infant Start.

The treatment is based on a daily therapy, the Early Start Denver Model,

that is based on games and pretend play. It has been shown in randomized

trials<

<http://pediatrics.aappublications.org/cgi/content/abstract/peds.2009-0958v1

>

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to

significantly improve I.Q., language and social skills in toddlers

with

autism, and researchers say it has even greater potential if it can be

started earlier.

�What you ultimately might be doing is preventing a certain proportion of

autism from ever emerging,� said Mandell, the associate director of

the Center for Autism Research at the Children�s Hospital of Philadelphia.

�I�m not saying you�re curing these kids, but you may be changing

their

developmental trajectory enough by intervening early enough that they never

go on to meet criteria for the disorder. And you can�t do that if you keep

waiting for the full disorder to emerge.�

Sally , a MIND Institute researcher who has been working with the

Aguilars, said she faced several challenges in adapting the toddler therapy

for infants.

Even normally developing babies cannot speak or gesture, let alone pretend.

Instead, Ms. has parents focus on babbling and simple social

interactions that occur in the normal routine of feeding, dressing, bathing

and changing the baby.

�Patty-cake and peekaboo or tickle games, those are people games,� she

explained to Carmen and Saul Aguilar during their first session with their

son Emilio at 7 months old. Ms. talked about the next 12 weeks and

how they would focus on getting Emilio to exchange smiles, to respond to his

name, to babble with them, starting with single syllables (�ma�) and

moving

on to doubles (�gaga�) and more complex combinations (�maga�).

�Most babies come into the world with a built-in magnet for people,� Ms.

said. �One thing we know about autism is that it weakens that

magnet.

It�s not that they�re not interested, they have a little less draw to

people. So how do we increase our magnetic appeal for his attention?�

Lesson 1 was eye contact. Ms. had the parents take turns playing with

Emilio, encouraging them to get face to face with the baby and stay in his

line of vision. Mrs. Aguilar leaned down on the blue blanket and rattled a

toy. �Emilio? Where�s Emilio?�

On the other side of a two-way mirror, another researcher watched the

session and an assistant monitored three video cameras in the room. Sally

Ozonoff, a researcher who first identified Emilio as a candidate for the

study, stopped by to observe.

�He�s just staring at that object even though her face is three inches

away,� she said. �He has that flat, very sober-looking face.�

Mr. Aguilar tried next. He put Emilio in a red beanbag chair and folded the

sides together over the baby. �Squish, squish, squish!� he said. No

response.

He picked Emilio up over his head and flew him like an airplane. Emilio

stared at the ceiling.

Mr. Aguilar put the baby back in the beanbag and picked up a stuffed wolf

toy. He put it on his head and let it drop into his hands. �Pschooo!

Uh-oh!�

Finally, Emilio was watching.