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How to get the best education for your child, whether he or she has autism, epilepsy, Tourette's, or ADHD.
Caring for a young child with a neurological disorder is a challenge, even when a safe home, warm surroundings, and supportive family members are a given. It's not surprising that parents' anxiety levels soar once they need to navigate placing their children into school.
The good news is that many services are available to turn that transition into a positive experience. The Individuals with Disabilities Education Act (IDEA) is a law that mandates that public schools must identify students that may have disabilities. If the disability has an impact on the education process, then there's a provision for services for those children in a regular elementary school setting. The goal is to find the least restrictive environment for the child that provides the necessary support and accommodation.
“The biggest obstacle keeping parents from seeking or accepting help for their child is this notion that special education means your child is removed from a regular education classroom or building,” says Leslie E. Packer, Ph.D., a psychologist in private practice in North Bellmore, NY, who has expertise in Tourette's and its associated disorders. In reality, she says, most special education programs are provided in a regular classroom setting, and parents should not be afraid to seek help for their child's problem.
After children are evaluated and determined to be eligible, they receive an Individualized Education Program (IEP). “Elementary schools have made progress in creating environments in which students with disabilities are not stigmatized, as they were years ago,” says Dr. Packer.
Families must take the lead, however, and educate themselves about their children's rights under both federal and state law and about research-validated educational interventions that are appropriate for their child's condition.
“Sometimes parents don't even understand that this is a law that all schools must follow,” says Lucia Ortiz, M.S. Ortiz has a master's degree in special education and is an information specialist at the National Dissemination Center for Children with Disabilities (nichy.org ), an information center that specializes in helping parents understand the special education law and find resources within their state.
Too often parents defer to the child's school as the expert in these matters, says Matt Tincani, Ph.D., director of the Center for Autism Spectrum Disorders at the University of Nevada, Las Vegas.
What's important for parents to understand is that each neurological disorder, depending on severity, tends to manifest differently in the classroom. Strategies that work for a behavior resulting from one neurological condition may not be appropriate for another condition, even when the behavior appears to be the same, Dr. Packer says. For example, subjecting a student to a brief “time out” for a specific behavior might work in some cases but could back fire if the behavior was actually a tic. “Schools need to be especially cautious when applying any sort of aversive consequences to what appears to be misbehavior when there are neurological challenges,” says Dr. Packer, “because they might be inadvertently punishing the child for symptoms not able to be controlled.”
More importantly, a delicate, harmonious interplay—among the affected student, the teacher, the rest of the students, and the paraprofessional (if one has been assigned to the child)—is critical to a gratifying education experience for everyone inside the classroom, and for parents, as well.
Children with autism typically manifest traits that have a large impact on the learning process, says Dr. Tincani, who is also assistant professor of special education at UNLV and the author of Autism Spectrum Disorders Handouts: What Parents Need to Know (2006, Pro-Ed Inc.). Their speech development tends to be delayed, making it difficult for them to respond to a teacher's questions. Because their language skills are impaired, these students often fall behind in other subjects that involve explanation.
They also tend not to do much socializing and show little interest in approaching their fellow students or even making eye contact. “Social interaction is a big part of being successful at school,” says Dr. Tincani, noting students with autism often want to interact but lack the skills to do so. Consequently they can seem aloof to those around them and have difficulty making friends. Children with autism also have a proclivity towards repetitive motor movements, such as waving or rocking back and forth, which can be a distraction to other students. “These movements are incompatible with paying attention,” he says. In addition, autistic students often focus intently on narrow interests, such as a specific toy or a favorite movie, a behavior other students might consider off-putting.
In most instances, a paraprofessional can help make a teacher's instructions comprehensible and assist the student in the completion of assignments. It's essential, says Dr. Tincani, that the paraprofessional acts as only as the facilitator in the learning process, not as the teacher.
Epileptic syndromes can involve more than three dozen types of seizure activity; the big myth is that they're solely about falling to the ground and shaking, says Pat Robinson, R.N., executive director of Epilepsy Foundation of Southeast Wisconsin. Those larger seizures—they used to be called “grand mal” and are now referred to as generalized tonic clonic—still occur. But the subtle ones can be more problematic in a classroom because they're easier to overlook.
For example, during absence (pronounced ab –SAHNS) seizures, which tend to last about 8 seconds, children will often stare into space. “These students can look either engrossed or as though they're daydreaming,” says Robinson. “Teachers who are untrained in recognizing the symptoms may think the child is ignoring the teacher.” Another type of subtle seizure is the simple partial (occasionally this can be the beginning of a generalized tonic clonic), where the child experiences symptoms involving the senses, such as hearing noises or feeling something crawling on the skin. Fortunately, says Robinson, treatment can control more than 50 percent of epileptic cases.
Because children with epilepsy can experience as many as 100 or more of these 8-second absence seizures in a school day, service to these students is less about paraprofessionals and more about teachers and students being observant and educated about what to do when they see a seizure occur. Robinson describes one situation in which a teacher, untrained in these matters, fainted when a student experienced a seizure. “The students were fine,” she says. “The child was having a generalized tonic clonic, and the other students knew what to do. They knew to keep the child safe, to turn him on his side, and to time the seizure. They would have also known to call on the teacher for help.”
With educating teachers and students being such a critical factor—recently Robinson's organization even trained a number of custodians from various schools—it's not surprising that she regularly sends out letters to schools for permission to visit and instruct, for free, on the premises. The instruction, she says, is based on age levels, and for younger students the content of the presentation is much more basic. “Seizure first-aid is something that should be taught as readily as CPR,” she says, adding that parents are her organization's best advocates in getting into the schools.
Training school nurses is also high on Robinson's priority list. Unfortunately, because the current medication to control a generalized tonic clonic is diazepam (Diastat), which is administered through the rectum, some school districts are reluctant to pursue this training for privacy reasons.
Elimination of fear in the classroom is paramount, says Robinson, and her description of one presentation made by her staff is especially poignant. “A girl in the class revealed that, up to that point, only her mother and teacher knew she had epilepsy,” Robinson says. “But after the presentation the girl felt safe enough to reveal her condition. The students then told her, ‘We're not afraid. We can help you.’”
Tourette's is characterized by involuntary, repeated neurologically based movements and sounds. Typically these tics—motor tics, such as eye-blinking, and vocal tics, such as throat-clearing—emerge in the pre-school years and become full blown when a child is 6- or 7-years-old. Mild tics are often scarcely noticeable in the classroom, says Dr. Packer. In more severe cases, where the child constantly makes sounds or movements noticed by other students, a teacher who is not properly trained might interpret these involuntary symptoms as willful misbehavior.
When Dr. Packer conducts teacher training at her local and other school districts, she has participants experience tics by having them blink rapidly. “If you're trying to read something, and your eyes are constantly blinking, could you read as quickly?” she asks.
“I may also have teachers jerk their heads as they write,” Dr. Packer adds. “That's part of the awareness, giving them a taste of what the child is experiencing.” Paraprofessionals, she says, can be helpful when the child can't concentrate or write.
But generally, tics are not the only problem. The majority of children with Tourette's have associated disorders, most commonly either attention deficit hyperactivity disorder (ADHD) and/or obsessive-compulsive disorder, as well as significant visual-motor integration, such as hand-writing problems, Dr. Packer says. All these issues will affect the child's ability to perform in the classroom.
Children with ADHD can manifest the condition in a couple of ways, either by hyperactivity and being unable to stay in one's seat, or by exhibiting a lack of focus that makes it seem as though they're daydreaming and not paying attention.
Increasingly concerned about the side effects and risks of medication, parents of ADHD children often seek non-medication support and intervention and prefer to pressure schools to help address ADHD in other ways, says Dr. Packer. Paraprofessionals can often help these students refocus and assist them with handwriting problems.
Parents often ignore the significance of ADHD during their children's younger years, notes Dr. Packer, unaware of the havoc it can wreak by the time students get to middle school. Schools are now more aware that another manifestation of ADHD is a problem with organization. Also referred to as executive dysfunction, organizational difficulties can make it hard for students to break work assignments down into doable portions. “They need to be taught these strategies,” Dr. Packer says, noting that paraprofessionals can facilitate the development of this important skill.
Although every school district has an obligation to provide a student with a free and appropriate public education, a mainstream classroom setting may not appropriate for every student 100 percent of the time. “Sometimes, despite everyone's best efforts, a student may need more support than they can get in a regular education classroom or even a regular school building.” says Dr. Packer.
The next step for parents is to explore a continuum of services. The more that families are aware of what each tier can offer, the better prepared they'll be to develop an appropriate program in the least restrictive environment as possible.
Sometimes a related service provider—such as an occupational, speech, or vision therapist (a paraprofessional is not a related service provider)—will come into a classroom to work with the student or small group of students, according to each child's IEP. Once a week, for example, a student's program might include the opportunity to work on handwriting skills in his regular classroom, in addition to seeing that service provider for a second time in another setting, such as the provider's office.
Students in a pull-out program may spend one or more class periods a day getting support. These services are determined by the student's team IEP team, comprised of the regular teacher, the special education teacher, and an administrator, along with the parents and other required participants. Pull-out support is provided according to each student's need either on an individual basis or within a small group setting within the regular school building.
Many times, says Dr. Packer, it is pull-out support that allows the child to be maintained within a regular classroom setting. For example, students with ADHD often have learning disabilities, most commonly in the area of math calculation and written expression. Providing them with extra academic help in the resource room (with a special ed teacher) may help them keep up with classwork and homework. Students who require a behavior-intervention plan to address symptoms that interfere with their ability to function in school may also need one-to-one counseling in a school setting.
If students' symptoms are so severe that they cannot benefit from their program, or other students' ability to learn is being significantly disrupted, the team will need to consider whether the placement and the program are appropriate. For example, says Dr. Packer, some children who experience meltdowns in the classroom throughout the school day may need a smaller more supportive environment.
Self-contained classes are special education classes that constitute a student's everyday program. These classes tend to group students according to their needs, age, and functional level—they may all be autistic, for example—and may be available in a regular or separate school building, ideally one located close to home.
On the one hand, says Ortiz, some parents who want their children to have more attention in smaller classes aggressively work to have their children placed in this type of setting. But other parents may be concerned about the prospect of isolating their child from social interactions with non-disabled peers.
“Some parents don't realize that special education is a service, not a place,” says Ortiz. Because nothing can be done without parental approval, it's at this point, she says, that parents may opt to take steps to resolve the issue through negotiation. The outcome is never clear cut, Ortiz says, but adds that “savvy parents can win.”
Making a decision about a self-contained classroom is not easy, especially when these classes will sometimes take their children out of a regular school building. “It's a very painful and difficult decision for some parents,” Dr. Packer says, adding that before making such a decision, parents consult with their child's doctors and ask them to help advocate for the child within the district. “One size does not fit all,” she stresses. “What is right for one student may not be right for another.”
DON'T TAKE “NO” FOR AN ANSWER. If you're dissatisfied with your child's IEP program, or don't believe your child is progressing, speak up, says Matt Tincani, Ph.D., director of the Center for Autism Spectrum Disorders at University of Nevada, Las Vegas. If parents are unable to plead their case, he advises them to find an advocate in a parent-support group to go to bat for them. “Strong programs sometimes come as a result of parents who disagree [with the way things are being done],” he says.
COORDINATE TEACHING EFFORTS. In situations where a child is primarily in a regular classroom but attends one or two special education classes, make sure the regular teacher and the special education teacher are on the same page and communicate with each other about the child's progress, says Dr. Tincani.
ADVOCATE FOR PEER EDUCATION. Other students who understand your child's condition can be a tremendous support system, says Leslie E. Packer, Ph.D., a psychologist in North Bellmore, NY and an expert in Tourette's Syndrome. It makes a world of difference in how your child interacts with classmates and contributes to their social success.
CONNECT WITH YOUR SCHOOL DISTRICT. A progressive school district is the best ally for parents when it comes to putting in place innovative programs that address your child's neurological disorder, notes Dr. Packer. It's the school district, she says, that oversees teacher training and sometimes offers free workshops for teachers. Unlike many parents of newly diagnosed children, a school district knows their resources and what they can access to help the student.
THINK LOCAL. Connect with the parent-training information center in your state and other resource groups, advises Lucia Ortiz, M.S., an information specialist at NICHCY (contact nichy.org/states for a list of these resources). Dr. Packer also points out that local organizations associated with a particular disability can give parents access to families in their area who have amassed considerable practical expertise and may be willing to share their knowledge. “Turn to people who have been doing it,” she says. Pat Robinson, R.N., the executive director of the Epilepsy Foundation of Southeast Wisconsin, also suggests taking advantage of the free literature provided by local affiliates of national organizations that address neurological conditions.
If your child is not doing well in the local school, the IEP team might consider sending him or her to another school in the same district or to a fully self-contained school. However, most parents want their children to be in the local school and in as many mainstream classes as possible.
GET OUT OF TOWN, IF THAT'S WHAT IT TAKES. If parents can't get the results they want where they live, Dr. Packer suggests moving to another state that's more amenable to their types of needs. It's an extreme measure, but Packer has occasionally advised people to take this step. “Don't give up,” she says. “You're child is counting on you.”