Sending a child off to school for the first time can feel daunting for any parent. When a child has cerebral palsy, parents can experience additional worries.
Will their child have the support they need? Does the school system provide assistive technology to help them reach their full potential? Will they be accepted or bullied by their peers?
Parents who start educating themselves early about issues related to school are more likely to find the resources they and their child need, and to arrive at workable solutions by the time school starts than those who leave such questions to the last minute.
One important step is to begin conversations with the local school district before your child starts school, so that teachers and other staff are prepared to best serve the needs of your child.
Get an Individualized Education Program (IEP)
An IEP, or individualized education program, is a written legal document that outlines the instruction and services a student will receive as part of their public schooling. Many children with cerebral palsy qualify for an IEP, which they can receive through their local district once they turn 3 years old.
An IEP details both the strengths and the challenges of the student and how special education services will serve these needs. It can include information about the type of instruction to be provided, assistive technology, classroom environment, and how the student’s progress will be measured.
IEPs can also include details about services like physical and occupational therapy, speech therapy, mental health support, medical support, and mobility support.
Having an IEP in place can help ease the transition into preschool or kindergarten for your child, and also give school staff time to consider how they can best serve your child. If you are planning on sending your child to a public or charter school, it’s never too early to contact them to ask about the process of evaluating your child with cerebral palsy for an IEP.
Joan Breslin Larson, an independent consultant in assistive technology based in Minnesota, recommends that families also consider connecting with their local family advocacy center to help with this process.
Some state education departments can also appoint an IEP facilitator.
“Bring an advocate to IEP meetings if needed,” Breslin Larson says. “The advocate can say things a parent cannot say, and can help the parent’s voice be heard.”
Build a School Support Team
The first step in building a support team for your child with cerebral palsy is to get to know their primary teachers.
“Befriend the teacher,” recommends Breslin Larson. “Let him or her know that you expect to partner with them to make this a successful move for them and for your child. One tool might be sending a video of how the child is at home — what he likes to do, how the family interacts, and what communication strategies work. Keeping a good line of positive interaction with the school is critical. And parents should not be afraid to go up the ladder to higher authority if things go wrong.”
In addition to teachers and administrative support, parents must consider which specialists can best meet their child’s needs. Some of the options include:
- Occupational therapists can help young children with cerebral palsy develop the functional ability to complete tasks at home and at school.
- Physical therapists can help children learn to control and coordinate body movement, improving balance and minimizing pain.
- Speech therapists can help with communication skills and oral motor functions.
- School counselors and psychologists help address issues of emotional well-being and help kids build positive coping skills.
Other support specialists might include special education teachers, school nurses, hearing specialists, social workers, and assistive technology specialists.
Find the Right Technology
Parents will also need to consider which assistive technology can best help their child with cerebral palsy succeed in school. Assistive technology includes any item or product that helps a child’s functional capacity.
Because there are so many types of assistive technologies, parents can easily feel overwhelmed when choosing the right aid for their child. Parents should ask the local school district whether assistive technology consultants are available to help assess the needs of their child, or whether there are any local organizations that provide this service.
Common assistive technology devices used to help kids with cerebral palsy can include (but are not limited to) communication devices, eye-tracking technology, writing aids, hearing devices, and mobility aids.
Parents may also benefit from connecting with a local chapter of any national organization that focuses on cerebral palsy, such as United Cerebral Palsy. These chapters can provide guidance on how to acquire aid to help with the cost of assistive technology, and what your child’s legal rights are when it comes to assistive technology in the classroom.
Plan for Friends, Play, and Social Activities
In addition to having educational concerns, parents often worry about how their child’s cerebral palsy will affect their social life at school. How will speech, hearing, or mobility differences affect how other kids treat their son or daughter?
One approach that may help is for parents to connect with teachers and school staff to learn about what social activities are available to keep their child active and help them make new friends. They can ask if there are any after-school programs that connect kids with similar challenges or are therapeutic in nature.
Parents can also take an active role in scheduling play time with other kids, so their child develops friendships outside of school.
Breslin Larson recommends that whatever fears parents have, they brainstorm approaches to address that fear. For example, “If a parent is afraid that their child will be bullied, they can develop a strategy to communicate who their child is, their interests, and their strengths,” she says. “Find some kids who will be in the new setting and invite them over before the school year starts. Build a circle of friends before entering the school system.”
For parents who aren’t sure where to start, perhaps the best first step is to simply write down their unanswered questions. Then connect with the people who can provide answers to their questions and concerns — teachers, therapists, child advocates, or others.
By building a team of support both inside and outside a school, parents will ensure that their child with cerebral palsy will thrive in their educational career and beyond.