February 2, 2009
Posted: 03:21 PM ET
This week for CNN American Morning, I’m sharing the story of the Bilson family, whose 13-year-old daughter, Marissa, has autism. The Bilsons have had a tough time with Marissa; she often pitches fits, and the entire family suffers. Not knowing what to do next, the Bilsons called in a therapist who spent the week with them, teaching them skills for making life better for Marissa and for the rest of the family. You can read more about Marissa here, and see a video about the therapy here.
Here’s the problem: the therapy costs about $20,000 for the week. The Bilsons received it for free, because our cameras were videotaping it, but that price tag is out of reach for most families with autistic children. So what are some affordable approaches for these families? There are many affordable programs out there, but it’s not always clear how parents can access them. Here, from mothers of children with autism, are ways parents can advocate for their children with autism, from babyhood through the school years.
1. Trouble getting a diagnosis? Bring in a video, letters.
The first step towards getting assistance for your child is to get a diagnosis of autism. Some parents have had difficulty with this, since a child doesn’t always display the worrisome behavior during a doctor’s appointment. If this is the case, Alison Singer, executive vice president of Autism Speaks, an awareness and advocacy organization, suggests videotaping your child's behavior and showing it to the doctor. "You could play it on your laptop, or even just bring in the video camera," she says.
Getting a letter of support from your child's day-care provider or preschool teacher might also help. "Teachers are seen as other professionals, and a letter saying, 'In 20 years of teaching, this behavior is really unusual,' can go far," says Singer, who has a 10-year-old daughter with autism. If your child isn't in day care or school, even a letter from a neighbor who knows your child could help, she says.
Educating yourself about autism will also help you have a discussion with your pediatrician. Autism Speaks, First Signs, and the American Academy of Pediatrics all give excellent overviews. Autism Speaks' Video Glossary has more than 100 video clips comparing the behavior of children with autism spectrum disorders with the behavior of a typical child.
2. Sign up for early intervention
Any child younger than age 3 with a developmental delay qualifies to receive services through Early Intervention, a government-mandated program that provides services to eligible children. Services are free of charge, and vary from state to state; they may include speech and language instruction, and/or occupational and physical therapy.
To learn how to apply for Early Intervention, click on this state-by-state directory from the National Dissemination Center for Children with Disabilities and scroll down.
Early Intervention is invaluable because it links parents to services in the community, but Lisa Goring, mother of a child with autism and director of family services at Autism Speaks, warns that parents may also have to search on their own, since it can be hard to find services without a long waiting list. "There just aren't enough service providers for the kids who need them," Goring says. To find services on your own, wrightslaw.com, which offers information about special education law and advocacy, has a Yellow Pages for Kids that lists providers.
Long waits are so prevalent that Nancy Wiseman, founder and president of the advocacy group First Signs, whose 12-year-old daughter has autism, has a few suggestions for how to get in quicker. First, parents should stress the age of their child (many clinics will give priority to children under 3), and should ask the pediatrician to make a call to the specialist. More suggestions are in her book "Could it be Autism? A Parent's Guide to the First Signs and Next Steps."
3. Know your child's rights in school
When your child enters public school, he or she has rights under federal and state laws. The U.S. Department of Education has information about federal laws and state laws. The National Association of Parents with Children in Special Education has information about children's legal rights as well.
Wiseman says that even with these protections, you'll still have to work to get what's best for your child. For example, Wiseman moved to get into a different school district, and then a few years later, when that district no longer worked well for her daughter, she twice fought to place her child out of the district. "It's very frustrating to battle a school, and you really have to do your homework," she says.
You and the district will have to come up with an Individual Education Plan (IEP). To prepare, Wiseman recommends "The Complete IEP Guide: How to Advocate for Your Special Ed Child" by attorney Lawrence Siegel.
Also, school districts often have a Special Education Parent Teacher Association. Member parents often give good advice on how to work with the school district.
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