Cavernous Malformation and School

Finding out that your child has a medical condition can be very difficult for a family, particularly if that child is faced with surgery or a long recovery. It may be helpful to know that there are many school programs in place to assist your child through this difficult time.

A child may be entitled to special education services under the 1997 Individuals with Disabilities Education Act (IDEA) or Section 504 of the Rehabilitation Act of 1973 (Section 504). Below is a brief outline of services that may be available for your child and the steps needed to request these services. Keep in mind that each state may have different requirements for a child to receive special education services.

Age Range

Three children sitting smiling

Students from ages 5 through 21 are entitled to special education services if they qualify. Some states provide services to infants and toddlers and to children ages 3 to 5. Your local school should be able to tell you if they provide services for children under age 5.

Request for Referral

A parent has a right to request a referral to a special education program. This can be accomplished by requesting a referral from your child’s teacher or school principal. What a “referral” means is that your child will be evaluated for special education services. A multidisciplinary team (meaning more than one person and professionals of various specialties) will test and evaluate your child for specific educational needs such as speech, writing, reading, or motor skills. Each state has different requirements for a child to receive special education services and each school will evaluate a student according to their state’s guidelines. If a parent believes that their child should be receiving special education services but has been denied, there are legal and procedural steps in place for a parent to try and resolve the issue.

Individualized Education Program (IEP)

Once a student has been accepted into a special education program, they will be placed on an individualized Education Program or IEP. The IEP is an individualized educational program designed to fit each student’s specific educational needs. The process of creating an IEP should involve collaboration between the school, teachers, and the parents or family of the student. The school will schedule an IEP meeting with the parents and family. During this meeting, specific goals and objectives for the student for the upcoming year will be discussed. These goals and objectives as well as related services, if needed, will be put into a written plan. Throughout the year, the school will give the parents or family progress reports on how well the student is progressing towards their goals or objectives. The IEP meeting is a perfect time for the parents or family to voice their concerns and share with the teachers and school what goals and objectives they feel are important for their child.

Section 504

If a student does not qualify for special education, they might qualify for services under Section 504. Section 504 is a Civil Rights Act that protects the disabled from discrimination, including discrimination in education. A disabled student might qualify under Section 504 but NOT qualify for special education, particularly if they are working at grade level. In this case, a student would be put on a Section 504 Plan. A Section 504 Plan would allow for modifications and accommodations to the student’s education. If a student does not qualify for special education, ask the school or teachers about the possibility of a Section 504 Plan.

Depending on deficits and challenges, under Section 504, parents of students with cavernous malformation students have requested accommodations such as:

  • extra time to complete assignments or tests
  • participating orally, rather than in writing, possibly with a scribe
  • a specific seating assignment – one side of the room to accommodate hearing or vision deficits or in front to accommodate attention deficits
  • quiet time to reduce sensory overload
  • shortened days to address fatigue
  • physician education with adapted activities

The Alliance to Cure Cavernous Malformation Parents Facebook group is an excellent place to ask about accommodations other students with cavernous malformation are receiving.

Collaboration

While educators might be the experts on curriculum and teaching techniques, parents are the experts on their children. It is important to remember that parents and school personnel both want what’s best for the student. The best possible outcome can be reached if the parents and the school collaborate to reach the student’s goals. Parents should not be intimidated by the school or teachers and should feel free to express their concerns. At the same time, parents should be open to the techniques or suggestions made by the teacher for the benefit of the student. It is in the child’s best interest to have the school, teachers, and parents working together.

Parent Advocates

If a student’s parents or family are uncomfortable meeting with the school or teachers or feel that they are not being heard, Parent Advocates are available. These advocates will explain special education procedures and even attend meetings with the family if needed. Advocates can often be found through disability or special education organizations and websites.

Related Services

If a child qualifies for special education, they may also qualify for related services. These related services may include occupational therapy, orientation and mobility services, physical therapy, counseling, and speech pathology. These services will need to be approved by the school and written into the student’s educational plan.

Confidentiality of Information

Your child has a right to privacy and only school personnel with a legitimate need to know the information in a student’s record may have access. Third parties (non-school personnel) cannot access a student’s records unless the parent gives consent.

Special Considerations for Brain Surgery

Teen looking in the distance
Brain surgery is stressful and disruptive and our Alliance to Cure Cavernous Malformation Parents Facebook group often includes discussions about managing school after surgery. Students may be homebound for weeks or months, depending on the surgery.

In general, our parents who have helped their children through this time offer the following advice:

  • If it’s possible to schedule a brain surgery over vacation, request a date as early in a vacation period as possible. Parents report that, even with the easiest brain surgery, their children had less energy and/or were more irritable for weeks.
  • Take it slow. Your child is healing and, while they may look like they’ve returned to normal after a week or two, it likely will require more time before it’s actually true. In the big picture, academics are not as important as health, both physical and emotional.
  • It’s likely there will be times that your child will feel overwhelmed, and this may exhibit itself in behaviors that you are not used to. Surgery can make emotions stronger and make behavioral control more difficult. Patience and planning for frequent quiet times to reduce stimulation is so important now. As your child transitions back to school, their teachers must be made aware of the probability of neuro-fatigue and overstimulation so they can contextualize any change in behavior they see.
  • Make time for your child’s anxiety and grief. This may be the most difficult experience your child will ever have. In addition to anxiety about the surgery and recovery, there will be grief about separation from peers and regular activities. Listen to their words and behaviors, and find professional support if needed.
  • Homebound instruction requires less time and energy than in-school instruction; catching up at home is easier than in school. Don’t rush going back if the primary concern is falling behind academically.
  • There are germs in school. After surgery, your child may be more vulnerable to contagious illnesses for a period of time. Recovering from brain surgery while fighting a cold or other infectious illness only makes a tough situation harder.
  • It’s not unusual for children who have hemorrhages or surgeries that require lengthy recovery times to repeat a year or more of school. This is a very difficult decision, but over the long term, we’ve never heard a parent regret holding a child back. Every child facing a major health challenge deserves to be on their own timetable. Think about it – when you are 40, it will not matter if you graduated from high school at 17 or 19, but it can make all the difference in reducing stress on a child who is ill and helping them to be successful.
  • Some children with ongoing health challenges find homeschooling to be a better long-term solution because of the flexibility. While this is not possible in many families, for those who can, most communities around the United States have collectives of homeschooling families who support each other and often create and attend classes together. Homeschooling does not have to be lonely.

Internet Resources

The following federal government and non-profit sites provide a great deal of additional information about the special education process and parent resources.

 

Updated 4.17.22

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