Hoops for SPED parents

Most parents have a simple goal — to watch their children succeed in life. But when nothing’s simple, every decision carries the weight of the world.

Most parents have a simple goal — to watch their children succeed in life. But when nothing’s simple, every decision carries the weight of the world.

STOCKTON – A file folder, bursting at its seams, sits atop a table in Gorge Sanchez’s north Stockton apartment. It’s filled with Individual Education Plans for daughter Valeria, reports, printed emails and evaluations regarding the autistic 7-year-old’s behavioral analysis from the Lincoln Unified School District.

It’s not uncommon for families who have children diagnosed with autism to have so much paperwork and so many meetings with educators. It’s also not uncommon that parents such as Sanchez face a steep learning curve when it comes to understanding what it all means, and whether the result will be the best possible education for their child.

“What I want is for Valeria to receive services she has a right to and be in a class setting where she can learn normal social behaviors from her peers,” Sanchez said.

Sound easy? It’s not, for a combination of reasons.

After a child with autism turns 3, parents have a right to seek services from their local public schools. Every district has a special education department trained to help. The team includes administrators, teachers, speech pathologists and psychologists.

As comforting as it may sound to have so many people tuned in, Sanchez said it’s also as daunting, frustrating and mind-boggling as anything he’s ever encountered.

Every document from Lincoln Unified School District and the Don Riggio Elementary School is like a foreign language to Sanchez. The papers are filled with legal terminology and what the frustrated father calls “eduspeak” – fancy words educators use with purpose among themselves but can be confusing to the average Joe.

“I’m not a professional, I’m not a lawyer, and I’m not an educator. I’m just a parent that wants what is best for my child,” said Sanchez, a graduate student who has worked in the restaurant industry.

Every word on Valeria’s individual education plan is placed carefully into specific sections of the legal forms. Some of the words, Sanchez said, have dual meanings or are purposefully ambiguous.

For example, the document might say Valeria will receive “accommodation” without specifying what the service will actually be, Sanchez said.

“I certainly understand parents’ concern about some of the language on (the plans). Many of the terms used reference legal mandates. Most of the terminology is taken directly from the legal reference. Also, services and program descriptions are coded from state lists and cannot be altered,” Lincoln Unified Special Education Director Louise King said. “The best advice for parents is to ask questions. Educators are also willing to meet with families prior to (plan) meetings to explain terms and answer questions.”

Sanchez theorizes that it’s all by design to protect the Lincoln Unified School District from a civil rights lawsuit and “not to best educate” his daughter.


He’s not too shy to say it. His relationship with Lincoln Unified has become, in his words, “toxic.” He fears the district has designated him as a “difficult parent.”

And Sanchez pulled Valeria out of school for the bulk of her first-grade year in favor of in-home lessons, a $60,000 annual cost, Sanchez said. Lincoln Unified is paying half the cost of the in-home lessons, the Valley Mountain Regional Center – which also is charged with providing services for developmentally disabled people – agreed to pay the other half, Sanchez said.

“The cost of these services is why school districts don’t want to provide them,” Sanchez said.

King would not comment specifically about Sanchez nor Valeria’s education plan. She said her district, like many, has worked hard to find the best ways to serve the increasing population of children who are being diagnosed with autism. The district has 69 students with autism this year. A decade ago, there were less than 20.

There are thousands countywide, and no case is simple. All of them must be consistent with education code and federal laws that protect people with developmental disabilities, King said.

More broadly, however, King said the majority of autism services in Lincoln Unified are received well by families, and the district has been recognized regionally as a model for its autism inclusion program at Colonial Heights Elementary School. That program is expanding, she said.

Some autism education experts say it’s not uncommon for parents to butt heads with school officials, but that doesn’t mean both sides are not striving for the best possible education for the children. Sometimes the emotional ties parents have to their children are so strong, they don’t see that the district is proposing proper instruction and classroom environments, said Tara Sizemore-Hester, an autism specialist at the Valley Mountain Regional Center.

Without intimate knowledge of the Sanchez case, Sizemore-Hester said coping with autism is often a recurring form of shock and sadness, even when it is wrapped in love.

“Parents with children who have autism sometimes suffer a double grief. They suffer grief when their child is diagnosed,” Sizemore-Hester said. “Then, they go through another form of grief if the child does not make the progress that the parent anticipated (after starting intervention services). And that can be worse than the original grief.”

The result could be anger, or demands for more therapy, which might not be plausible, Sizemore-Hester said. Whether this applies to Sanchez has not been determined.

Sanchez finds little solace in any success the district has had with other autistic children. He only knows that his daughter is academically at or above grade level in most school subjects, but her social skills are lacking.

Valeria will make loud noises randomly and will have noticeable trouble staying on track during an assignment. She needs constant breaks, perhaps every 15 minutes, to hear a Katy Perry song or be provided another kind of reward.

Like any 7-year-old, the quirks are mixed in with moments of cuteness and charm. Still, a mainstream classroom poses some difficulty for her.

In the fall, she bit another student, Sanchez said. The district wanted to place her in a self-contained classroom where her behaviors are not distracting or threatening to others. The problem there is that Sanchez fears the district wants to put his daughter in a “dumping ground” where she will only regress.

He wonders aloud if a single incident requires such a dramatic move. He knows the student his daughter had bitten has rights, too, which brings a level of complexity to the situation. Being a part of the process in helping find Valeria’s rightful place is what he seeks most.

“I’ve studied up. I know the law. I know what type of education my daughter has a right to. The district doesn’t want to work with us or make us part of the decision-making process,” Sanchez said. “I’ve learned to never sign an (individual education plan) right away. I have to go back and read it over and over again. Usually, I have it all marked up with notes before we go back in.”

Sanchez bristles as he thumbs through the paperwork in the tiny breakfast nook of his apartment and peers into the living room, where Valeria works one-on-one with a teacher from a Modesto-based autism education firm who comes daily to the Sanchez home to teach Valeria her school lessons.

This is her seventh birthday, and while she whirls through the kitchen – performing a little dance with her mother, Nancy Sanchez, who puts on a pot of soup while Valeria more intently eyes a chocolate cake – Gorge Sanchez continues to lament over Valeria’s lost months of social interaction.

The Sanchezes have filed a complaint with the Office of Civil Rights. The family said Lincoln Unified has failed to work with them in presenting all the best options for Valeria – including the Colonial Heights inclusion program that King touted as a success for helping children with autism co-exist with mainstream students.

“They’ve had that program for 15 years. We found out about it two months ago,” Sanchez said.

Sanchez said the Office of Civil Rights will be reviewing his case. He said he knows it will take time. In the meantime, he’s hopeful for Valeria’s placement at Colonial Heights in the fall.

“I just want what’s best for Valeria,” he repeated.

via Trying to do what’s best | Recordnet.com.

Jimmy Kilpatrick, a national recognized professional special education advocate since 1994.

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