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Parenting through special education

Posted Sep 25 2009 10:33pm
from Forbes :

It's a typical summer morning for Maureen Blasko, an associate director at Ernst & Young's Washington, D.C., office. While she helps her 8-year-old twins get ready for the day, her husband makes their lunches and shuffles them out the door--one is off to golf camp; the other to figure skating.

Katie, her eldest, is 15. From birth, she's suffered a host of medical issues and now attends a special education school for her epilepsy, learning disabilities and ADD. Blasko still gets her dressed, ties her shoes and reminds her to brush her teeth and hair after she finishes breakfast. She will stay and see that Katie gets safely on the summer school bus (at 7:30 a.m., it's late again), but her mind is already jumping ahead to her packed work schedule. When the bus rumbles in, it's one kiss on Katie's cheek and she's off to the office.

Working moms are expert jugglers. While many are putting in long hours to grow their careers, they are also striving to get their kids in the best schools or classrooms, and watching over homework and after-school activities. Having children with special needs complicates things exponentially. And it's not just a small few dealing with disabilities. According to the U.S. Department of Education, 13.6% of students have disabilities and 6.5 million children are enrolled in special education.

There are federal laws in place to help parents and their special needs kids, but the education system can be difficult to navigate. Parents have to be constant advocates, adding a whole other layer to the familiar working mother balancing act.

The Basics

The Individuals with Disabilities Education Act (IDEA) is a federal requirement, enacted in 1975 and still evolving, that ensures children with disabilities receive a "free appropriate public education" from ages 3 to 22. Each state must provide the minimum requirements, though some provide more, and all interpret the law differently and on a child-by-child basis.

Every child confirmed to have one of 13 disabilities--ranging from autism or learning disabilities like dyslexia to physical or sensory impairments--is administered an Individualized Education Plan (IEP) catered to his or her specific needs. An IEP team that includes the child's parent, a general education teacher, a special education teacher, a school representative and others with special knowledge of the child or disability creates the plan and meets annually (or more, if needed) to discuss the student's progress.

What The Laws Lack

Taking care of her now 23-year-old son, who has several physical and learning disabilities, consumed much of Carol Berman's time--so much so that the former market researcher at a large brokerage firm had to give up her job. His disabilities, and the attendant physical therapy, fights with health insurance companies and "the maze of education laws" had to take precedent. It was a financial blow to her family on top of everything else.

"The basic tenet of the law, that each child is entitled to a 'free appropriate education in the least restrictive environment' becomes tricky," she says. "To a parent, 'appropriate' means 'best,' which is not necessarily the case for the school districts."

She hit several roadblocks. The general policy of inclusion, when special needs children and mainstream kids share a classroom, made it difficult for her son to keep up with the advancing curriculum. She also felt that the advisers who recommended services did so based more on funding and statistics than to the specific strengths and weaknesses of her son.

Ellen Notbohm, author of the best-selling Ten Things Every Child with Autism Wishes You Knew, agrees that there are "100,000 interpretations of the law." She tells parents that constant communication with the school is their best bet and suggests they "look for a school that will see the child as a whole child and not as a baggie of broken parts." But the power--and ultimate responsibility--lies with the parent.

A Second Job

Marilyn Haese, mother of two sons, ages 19 and 17, both diagnosed with dyslexia and AD/HD, runs her own PR agency, Haese & Wood, in Century City, Calif. She is the first to admit a working mom with special needs kids must devote a Herculean amount of time to their education. It becomes a second job.

Every school year she has had to reintroduce her children's ever-changing needs to the school--classroom teachers, yes, but also the librarian, gym teacher and even the principal. Their report cards had measurements that changed and became harder to decipher as the boys aged. But her biggest obstacle has been her battles against her children's IEP teams.

Haese discovered that she had to champion what she knew was in the best interests of her boys. When her older son was in elementary school, for example, he was moved from a mainstream school to a special ed school. Concerned about the social and educational ramifications of extracting him from a "normal" setting, she moved him back to public school--after much ado and against adviser recommendations. He's now in college and she believes the transfer made all the difference. She now tells other parents to be proactive, address problems early and to be the voice your child doesn't have.

Early on Chantai Snellgrove of Vero Beach, Fla., realized she was naïve to blindly trust the school system and has been battling it ever since. "It's very frustrating," she says. "If you don't know the right questions, you won't get very far." As the mother of a 12-year-old daughter with language and learning disabilities, she's had to immerse herself in the research, keep meticulous records and negotiate fervently with an "intimidating" team of professionals to ensure her daughter gets what she needs.

Advocating for her child was so complicated and time consuming that, once Snellgrove learned the ropes, she found a new career--helping others embarking on the same path. Last year, she founded the online magazine, Parenting Special Needs , a resource she says she wished she had from the start.

Ernst & Young's Blasko admits that she has also applied her business acumen to IEP meetings. "Everything is a negotiation, just like work," she says. She got into a boardroom-style broil recently. When Katie, her 15-year-old, was placed in three job skills training classes and had no time in her schedule for science, Blasko refused. Katie will be taking biology in the fall.

What's Next

Rich Robinson, executive director of the Federation for Children with Special Needs, a services and support organization for parents, says he keeps an eye on the controversial issues surrounding special education. Full federal funding, he says, is the "politically hot debate."

This year, it seems that special ed will be granted its fair share. Programs falling under the Individuals with Disabilities Education Act (IDEA) are set to receive $12.2 billion as part of the American Recovery and Reinvestment Act (ARRA). Half was given out in April and the other $6.1 billion will be released in September. The funds, in part, will go toward retraining displaced teachers to specialize in special education.

In other words, it appears that the federal government is looking at special education to help stimulate the economy. To many of these working mothers, shifting funds sounds like a sigh of relief.

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