When Beverly (not her real name) was concerned that her two-year-old daughter still wasn't speaking, she took her to Children's Hospital in Oakland. There Beverly was told that her daughter had a developmental disability. She left the hospital feeling "completely lost"-but then she heard about Parents Helping Parents (PHP).

"The day I went to PHP, it changed my life forever," Beverly says. At PHP, Beverly found information on special education laws and got training on how to participate in school meetings to prepare an "individualized educational program" (IEP) for her daughter.

Parents and experts agree: to get the best education for a child with special needs, the most important thing a parent can do is to get support.

Contact parent organizations

When you find other parents whose children have special needs, "you feel more confident, that you're not alone," says Lourdes Ocampo, who belongs to a parent support group in Los Angeles.

Parent groups, adds Vicki Benson of Exceptional Parents Unlimited in Fresno, offer "unbiased advice." School districts, she says, "have a vested interest in keeping costs down." She adds, "If parents know what their rights are, they usually get a lot more services."

Exceptional Parents Unlimited is one of a statewide network of organizations run by and for parents whose children have special needs (see below: Resources), with financial support from the California Department of Education. Parent centers provide libraries, support groups, coaching, and advocacy.

Trust your gut instincts

Sometimes children are falsely labeled with learning disabilities just because they don't speak English, says Blanca Brown of Fiesta Educativa, a Southern California group formed to educate Latino parents about special education.

Other parents, Brown says, have to struggle to get schools to recognize their children's disabilities. "There was one parent here today," says Brown, "whose second-grader was on suspension for the third time this year." The school was refusing to test her son for Attention Deficit Hyperactivity Disorder, saying he just had a behavior problem. If parents feel their child may have a disability, they should insist on a professional assessment. "Our experience is that if parents keep pushing, they do it," says Brown.

"If something doesn't feel appropriate, speak up!" says Marti (not her real name), mother of a 14-year-old boy with autism. She recalls one classroom where her son, overwhelmed by too much stimulation, just sat under a desk. Marti pushed for a transfer to a small, specialized school, where her son blossomed.

"Stay on top of things"

Benson, whose son has cerebral palsy, says the most important point is to "stay on top of things-going to the school, talking with the teacher on a regular basis."

Ocampo had little opportunity to visit school until an illness kept her out of work. "I went to visit my child's class and found out there were many things that should have been done," such as providing physical education adapted to his needs.

Document everything

When a principal claimed, at an IEP meeting, that Marti had never expressed concerns about her son's placement, Marti was able to show a series of notebooks with correspondence between her and her son's teacher. The notebooks clearly showed she had expressed many concerns.

"Make detailed notes and get copies of everything you sign," Marti advises.

Start with a positive approach

Dawn Walsh, regional administrator of Greater Anaheim SELPA, a regional special education organization, advises families to use the "three-strikes rule":

1. Always try to work things out informally with the person working with your child. If that doesn't work,
   
2. Speak to the supervisor. If that doesn't work,
   
3. "Take formal steps."
   

Recently the mother of a child with Tourette's syndrome contacted Joan Tellefsen at Team of Advocates for Special Kids (TASK) in Anaheim. The mom disagreed with the school's assessment of her child. Tellefsen went with the mother to meet informally with the school psychologist. They realized that they really disagreed about only two paragraphs. The next day at the IEP meeting, the psychologist said, "I slept on this and you're right."

Be persistent

If you and your child's school still disagree, you can file a formal complaint. "If families take it beyond the local level," says Benson, "they almost always prevail."

Tips on the IEP meeting

• "We tell parents never to go to an IEP meeting by themselves," says Joan Tellefsen of TASK. Bring another parent, a relative, or a professional advocate.
  
• "It's important for parents to have a copy of their child's assessment before the meeting. "If the summary doesn't feel accurate to you, something's wrong," Tellefsen adds.
  
• Before the meeting, jot down points you want to raise, says lawyer Stephen Rosenbaum of Protection and Advocacy.
  
• "Never leave a meeting without a follow-up list:
  1) What will be done,
  2) Who will be responsible, and
  3) By when,"
  advises Dawn Walsh, regional administrator of Greater Anaheim SELPA.

Special education rights

Your child has the right to receive a "free and appropriate" public education, based on

• an assessment without cultural bias
• an "individualized educational program" (IEP).

As a parent, you have the right to:

• Participate in the development of the IEP
• Receive written notice in your native language if the school plans a change in your child's program
• Get an independent assessment, paid for by the school district, if you disagree with the school's assessment
• Give informed, written consent before your child receives any assessment or services-or refuse to consent
• Keep your child in his/her current program if there's a disagreement about placement
• To take your complaint to a "due process hearing"-but you're encouraged to try mediation first.

From Special Education Parents' Rights, available from the California Department of Education in English, Chinese, Spanish, and Vietnamese.

Resources

Parent Training, Information, and Resource Centers:

• Disability Rights Education and Defense Fund (Oakland), 800-446-4232
  
• Exceptional Parents Unlimited (Fresno), 559-229-2000
  
• Loving Your Disabled Child (Los Angeles), 323-299-2925
  
• Matrix Parent Network and Resource Center (Marin Co.), 415-884-3535
  
• Parents Helping Parents (Santa Clara), 408-727-5775
  
• Parents Helping Parents San Francisco, 415-841-8820
  
• Parents of Watts (Los Angeles), 323-566-7556
  
• SEA Center (Paradise), 530-876-8321
  
• Support for Families of Children with Disabilities (San Francisco), 415-282-7494
  
• Team of Advocates for Special Kids (Anaheim), 714-533-8275
  
• Team of Advocates for Special Kids (San Diego), 858-874-2386
  
• Vietnamese Parents of Disabled Children (Carson), 310-370-6704

Nonprofit advocacy organizations:

• Fiesta Educativa, 800-281-8252
• Protection and Advocacy, 800-776-5746

Extra resources from the Children’s Advocate bulletin (updated 10-06)

• Parent Center, from the National Center for Learning Disabilities, offers a guide for parents to the Individuals with Disabilities Education Act, as well as parent perspectives, advocacy tools, and resources in California. Online at http://www.ncld.org/content/view/827/527

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