It takes a mir­a­cle worker

Autis­tic stu­dents who are black or Latino tend to get help later. So an L.A. mom teaches other par­ents how to ad­vo­cate for their chil­dren.

Los Angeles Times - - Front Page - By Susan Brink

In a tiny apart­ment just west of Fair­fax Av­enue, Shi­ane Sim­mons shouted for juice. Just the first sound came out: “Ju. Ju. Ju.” Her mother held firm. “No,” she said. “Wa­ter.” Shi­ane spat at her, then ran into her bed­room.

Shi­ane is 15 and autis­tic. When she was di­ag­nosed at age 4, she was deemed “high­func­tion­ing,” which meant she was not re­tarded and could be taught to com­mu­ni­cate. But she has never re­ceived what is now con­sid­ered the gold stan­dard of care: 20 to 30 hours a week of in­tense be­hav­ioral, oc­cu­pa­tional and speech ther­apy for as long as nec­es­sary dur­ing the school years. “No one would call her high-func­tion­ing any­more. She’s re­gress­ing,” says her mother, Diane Mur­phy. “I feel like I’m in a tun­nel, scream­ing for help.”

Barely three miles away, Marty Martin, age 8 and also di­ag­nosed as high-func­tion­ing autis­tic, sat qui­etly in the front of his class at 3rd Street El­e­men­tary School. “Pick up your yel­low high­lighters,” said his teacher. Al­most as though a con­duc­tor had raised a wand, there was an ensem­ble swoosh as the arms of 19 of the 20 sec­ond-graders si­mul­ta­ne­ously reached to­ward their desk­top pen­cil cups.

Marty was the lone stu­dent who didn’t re­spond.

Then Emil­lia The­mad­jaja, a full-time aide for the boy, whis­pered qui­etly in Marty’s ear and pointed to the pen­cil cup. Marty picked up the high­lighter. He doesn’t al­ways par­tic­i­pate with the class, but with The­mad­jaja’s help, he’s at least work­ing


[ par­al­lel to his class­mates.

He has been sit­ting still for more than two hours, some­thing his mother, lawyer Areva Martin, once could hardly have imag­ined. “Even a year ago, for him to sit for an hour was not pos­si­ble,” she says.

Ac­cord­ing to the state De­part­ment of Ed­u­ca­tion, Marty and Shi­ane are two of more than 34,000 chil­dren in Cal­i­for­nia pub­lic or spe­cial­ized schools with autism, a de­vel­op­men­tal dis­abil­ity that af­fects a per­son’s abil­ity to com­mu­ni­cate and so­cial­ize. Lo­cal pub­lic school dis­tricts are re­spon­si­ble for ed­u­ca­tion costs even for chil­dren who can­not be main­streamed, or placed in reg­u­lar classes. Since the 2000-01 school year, over­all en­roll­ment in the state’s pub­lic schools has gone up by about 2%, while the num­ber of en­rolled chil­dren with autism has more than dou­bled.

To­gether, Marty and Shi­ane rep­re­sent a so­cioe­co­nomic di­vide that no equal-op­por­tu­nity law has been able to bridge.

Poor and mi­nor­ity kids with par­ents who don’t know how or whom to pres­sure get fewer ser­vices — and get them later — than mid­dle­class and wealthy kids with as­sertive par­ents. African Amer­i­can and Latino chil­dren with autism are one to two years older than white chil­dren be­fore they’re di­ag­nosed.

In Los An­ge­les, it took white kids an av­er­age of four vis­its to spe­cial­ists over four months to be di­ag­nosed with autism; black chil­dren re­quired 13 such vis­its over 10 months, ac­cord­ing to 2005 leg­isla­tive tes­ti­mony of Robert Hen­dren, ex­ec­u­tive di­rec­tor of the UC Davis MIND In­sti­tute.

“It’s like deal­ing with in­sur­ance com­pa­nies ev­ery day of your life,” Areva Martin says. “If you’re a sin­gle mother, how do you do that? The chil­dren in those worlds are lost.”

So she has put her­self smack in the mid­dle of the spe­cial-ed­u­ca­tion fra­cas, fight­ing on two fronts. One is for her own child. And for the last two years, she also has been teach­ing some of the poor­est fam­i­lies in Los An­ge­les how to be just as pushy for their kids as she has been for hers.

She and Donna Ross, also a mother of an autis­tic child, co-founded the Spe­cial Needs Net­work. They take their spiel to churches, au­di­to­ri­ums and li­braries in the city’s need­i­est neigh­bor­hoods. They’ve talked to more than 1,000 fam­ily mem­bers, mostly African Amer­i­can and Latino, about their rights, and how to make sure their chil­dren get an ap­pro­pri­ate ed­u­ca­tion.

“Learn to say, ‘I’m pre­pared to launch a le­gal bat­tle over this,’ ” Martin told a group of par­ents at the Faith­ful Cen­tral Bi­ble Church in In­gle­wood.

“I still meet fam­i­lies whose kids are 5 or 6, and they don’t have any ser­vices yet,” she says. “On a mi­cro level, there’s still a lot of de­spair and help­less­ness. But on a macro level, things are start­ing to hap­pen.”

It was at just such a meet­ing, af­ter cross­ing her fin­gers and say­ing a prayer that her sal­vaged Pontiac wouldn’t break down on the way, that Diane Mur­phy met Martin.

For close to a year, Shi­ane has been out of school. When she at­tended, she was spend­ing nearly two hours each way on a school bus and, af­ter mul­ti­ple stops, of­ten be­came too ag­i­tated to settle down. In­stead of be­ing in classes, she has spent her days ca­reen­ing from bed­room to gal­ley kitchen and back in her mother’s two-bed­room apart­ment.

Shi­ane’s hair has grown from a nearcrew cut to an Afro since she snipped her braids be­cause she hated the way wash­ing, comb­ing and brush­ing felt. Chil­dren with autism can have mul­ti­ple sen­sory prob­lems, balk­ing at touch or sound.

Mur­phy’s tiny apart­ment barely con­tains the teenager’s en­ergy — and 260-pound, 5-foot-2 size.

“She’s started spit­ting,” says Mur­phy, her calm more a mea­sure of hope­less­ness than of peace. “When I’m out at the gro­cery store, I can see it com­ing.” Shi­ane spits at strangers. At home, she spits at the television set, her stuffed mon­key, her pic­ture book dic­tionary or her mother. “She can’t com­mu­ni­cate, and she’s frus­trated,” says Mur­phy.

Early and con­sis­tent ther­apy might have im­proved Shi­ane’s be­hav­ior.

Though ex­perts say that it’s never too late for treat­ment to have some ef­fect, learn­ing be­comes harder as chil­dren get older. The in­fant brain is, in a way, over­loaded with po­ten­tial learn­ing cir­cuits, says Sally J. Rogers, pro­fes­sor of psy­chol­ogy and be­hav­ioral sci­ences at the MIND In­sti­tute. The brain prunes away po­ten­tial cir­cuits that don’t get used. For chil­dren like Shi­ane, it is the lan­guage and com­mu­ni­ca­tion cir­cuits that get pruned.

John Nolte, an at­tor­ney with the Cal­i­for­nia Assn. for Par­ent-Child Advo-


Bryan Chan Los An­ge­les Times

UP­HILL FIGHT: Shi­ane Sim­mons, 15, at re­cre­ation time at Sun­rise School in Sher­man Oaks. Once con­sid­ered a “high-func­tion­ing” autis­tic, she didn’t get con­sis­tent ther­apy in her early years, and still strug­gles to com­mu­ni­cate.

Béatrice de Géa Los An­ge­les Times

MAIN­STREAMED: Marty Martin, 8, at­tends reg­u­lar classes at 3rd Street El­e­men­tary School with the help of an aide. His mother, Areva Martin, teaches poor lo­cal fam­i­lies how to get ap­pro­pri­ate in­struc­tion for their chil­dren.

Newspapers in English

Newspapers from USA

© PressReader. All rights reserved.