Cerebral palsy (CP), the most common mobility or motor-related disability in children, affects a person’s ability to control their muscles. Whether your child has a new diagnosis of CP or it has been a co-occurring diagnosis for years, we’ve gathered resources to help you support your child at school, at home, and in the community because kids with CP can still engage within their communities, participate in fun activities with peers, and live meaningful lives. As parents, we can learn how to encourage, advocate for, and support them as they do just that, and more.
For insights, we spoke with Dr. Lekha Rao, an Associate Professor of Pediatric Neurology at UCLA’s David Geffen School of Medicine and Dr. Andrew Collins, a pediatric rehabilitation medicine physician at Stanford Medicine Children’s Health, to gain insight into what cerebral palsy is and the best ways to help individuals with CP thrive. We also spoke with Ali Steers, owner of Steers AAC Language & Speech and a speech-language pathologist who specializes in Augmentative and Alternative Communication (AAC); Dr. Sarah Pelangka, special education advocate and owner of Know IEPs; and registered nurse Lelah Coppedge, whose son has CP and is now in high school.
School-aged children with CP may not be getting adequate educational support to develop academic and social skills needed to excel at school. Even though an abundance of services are available, parents are often unaware of those services. To help us tackle this topic, we turned to special education advocate Dr. Sarah Pelangka about school-based supports and services and how to ensure that parents get the appropriate help for their kids, since each child has different needs.
A child with CP may be eligible for an IEP or a 504 plan under the eligibility category of orthopedic impairment. Dr. Pelangka reminds us that not everyone diagnosed with CP requires the same services and levels of support. Where some students may only require accommodations and related services via a 504 Plan, other students may require more intensive supports through an IEP. Some students with CP may also qualify under additional eligibilities, such as intellectual disability, speech language impairment, or other health impairment. Examples of needs that can be met via either a 504 Plan or an IEP include feeding, mobility, and health and nursing needs. An IEP is required and recommended whenever the student’s needs encompass intensive goal areas to be supported and progress measured, and/or whenever a student requires low incidence equipment, for example.
In this clip, Dr. Pelangka discusses some common IEP and 504 accommodations for CP:
Another support and service provider that Dr. Pelangka recommends for anyone with CP or another orthopedic impairment is an orthopedic impairment specialist (OI). They look at “accessibility as a whole,” Dr. Pelangka says, “whether it’s for feeding, accessing the campus, ambulation.” They even evaluate whether kids need a stool for handwashing or toileting, Dr. Pelangka says. Parents often aren’t aware that this service is supposed to be on an IEP for students identified as OI. Orthopedic impairment specialists are an additional layer of support to help your child maneuver around campus. These specialists can serve on a consult basis for the staff supporting and working with the student, Dr. Pelangka says.
Occupational and speech language therapies are additional services that may be added to your child’s IEP. Adaptive physical education (PE) is another useful service for children with CP or other mobility issues. Sometimes there are group adaptive PE classes that you might want to look into for your child. Both the OI specialist as well as the APE specialist can consult to look at modified equipment for students to perform and participate in various motor activities. If the student requires the support of a communication device, an AAC assessment may be warranted. If the student qualifies, parents want to ensure the AAC device specifications are clearly written into the IEP, in addition to the AAC consultation and collaboration for training purposes. “I always ensure my clients have it written in such that anytime there is a new staff whom is a direct service provider, they are required to receive the AAC training within a two-week timeframe,” Dr. Pelangka says. Lastly, assistive technology supports and services may be warranted, to allow access to curriculum and education. This is an additional assessment that can be requested by the family, when such needs are suspected.
Dr. Pelangka says that orientation and mobility assessment and consultation is a service that is in conjunction with vision services. “You can only access orientation and mobility if you already qualify for vision services,” Dr. Pelangka says, “as the purpose of O&M services is to support the student in ambulating throughout the campus community safely as it relates to their vision impairment. If a student requires support for ambulating across the campus community and they do not have a visions impairment, the appropriate service for them would be physical therapy services.”
School supports for a child with CP may also include health and nursing services. If the student has medical needs (e.g. suctioning, g-tube, etc.), school personnel need to know how to properly support the student. Should the student require an emergency health care plan, ensure this is on file, is current and up to date and has been reviewed and approved by the family. It is also imperative that all required members (teacher, aide, direct service providers, administration), have been fully trained on the health care plan by the nurse, prior to the student’s attending school.
Dr. Rao encourages parents to speak up for what their child needs in the classroom to ensure their successful because, sometimes, even the little things can help tremendously. But the schools need to know how they can help. For example, since schools are using more digital- and technology-based education than before, children who are hemiplegic and might have difficulty using their hands might need accommodations built into their IEP.
In an ever-changing landscape of technology in the classroom, both parents and educators need to look out for areas like this where some children may need more support. Dr. Rao states, "I think that we need… to move into the mainstream the idea that everybody comes in different shapes, sizes, colors, and abilities. And we should all just try to make everybody successful, no matter what." Since children in their developing years spend most of their time at school, finding supportive services is necessary to ensure they are comfortable and their needs are met in that educational environment.
Dr. Pelangka says that often, kids at school don't know what to do when they see someone with a disability. "If we did a better job of just educating and making that more normalized, that would be a huge help. And to the same extent, educating administration and teachers on how to have just a more inclusive campus culture.”
Dr. Rao agrees and says it's essential for kids with CP to maintain their peer connection and inclusion, which helps typically developing peers, too. "That way, they're around peers that don't have a disability and are at their same social level," Dr. Rao says. "Modeling and that interaction is also really important for the kids who don't have a disability, to look and say, 'Wow, that kid's doing all the same things that I'm doing.' And so that way, it just becomes more accepted. And that's just part of who we are. And there's a broad range of abilities in people. And disability doesn't necessarily mean that you can't do all the things that everybody else does."
Dr. Collins concurs that integration with the community is important.
At home, you can help your child by communicating consistently and making sure the home is accessible and safe for your child to move around. It’s easy to focus on a child with CP’s immediate needs, but an important piece of development is the psychosocial aspect. Coppedge, Steers, and Dr. Rao agree that tending to the mental well-being of individuals with CP is hugely important.
Coppedge says we tend to get so focused on what we must do to support our child’s physical and intellectual development, such as what therapies to take kids to, that we forget to instill qualities like confidence and persistence that will empower them for a lifetime. "They're going to be the ones who have to take themselves further than you can take them," Coppedge says. "It has to come from within." Instilling these fundamental values helps individuals with CP develop the self-esteem needed to thrive in the world. Teaching children — those with and without CP — how to effectively navigate their internal world when challenging circumstances arise will help them develop a strong emotional core.
Communication support is key, according to Steers. What parents must do, she says, is to always focus on agency and autonomy. It is important to educate children with CP that, while their parents might understand them, people outside of the family like teachers or peers may not. Children need to be taught ways to make their messages clear so that others understand them.
Steers also points out that we need to get out of the habit of speaking for someone. It’s easy to fall into the pattern of interpreting or speaking for your child when spoken communication is a challenge for them. However, Steers says, children with CP will find confidence in their ability to navigate communication challenges on their own. "Modeling and co-correcting communication breakdowns with the child early on will later lead to the child feeling empowered to repair that communication breakdown when a familiar partner is not around….The last thing I would want is for a child is to develop a belief that the only people with whom they can converse are mom or dad or to have a child develop anxiety when mom and dad aren’t around because they don’t feel able to express themself to others outside of the immediate family.”
Coppedge started her son on AAC at 18 months old. "I know a lot of families get the PT piece, the OT piece, and you're really just focused on that," Coppedge says. "Don't forget the communication piece, because these kids are kind of trapped and we want to make sure that they have a way to express themselves. And that's going to save a lot of heartache later on.”
We asked Undivided parent Lelah Coppedge what she has learned about raising a son with cerebral palsy (CP) over the last 14 years. She shares tips, knowledge, and wisdom about what parents need and how to best support their child with CP.
First, parents should believe that life can still be filled with joy. Receiving an unexpected diagnosis of any kind is scary — all sorts of emotions surface. Our sympathetic nervous system goes into overdrive. We are ready to fight, yet, at the same time, we aren’t. Most of us aren’t prepared for what’s to come when we’re told our child will have a lifelong condition that has no cure. It can be frightening or disheartening.
In the beginning, when Coppedge received her son Jack’s CP diagnosis, she says she felt a lot of “panic and loss.” She went into mourning and couldn’t look ahead. But what helped her move out of that phase was believing that things would get better for her son. “I think that you can still have a happy, good life,” Coppedge says, “and that it can be filled with incredible experiences and joy.”
Even if what you had envisioned for your child may look different moving forward, refocusing and adopting a new vision of the current reality can help tremendously. And remember that it's okay if it takes time to sit with this unexpected diagnosis and see promise in the future.
Some people find great help in support groups; for others, support groups can cause more stress. For Coppedge, being a part of parent support groups was too "upsetting and stressful." She wanted information, not emotional support. At the time, she wanted to know what was going on with her son, and it was difficult to process and absorb other parents' pain simultaneously. What helped her was finding like-minded friends and other parents, even if they had kids with different disabilities, whom she could lean on. She says one of the most priceless gifts of the friendships was "fumbling through everything together." Moreover, they were and still are her most important allies and support.
"The most useful resources you're going to have are other parents and finding those people that really guide you through it and go through it with you together," Coppedge says. "Because you're going to find therapists that way, you're going to find different treatments you've never heard of before, but someone else tried it; those are your best resources." Coppedge says the journey while parenting a child with a disability can be lonely, so finding someone you can relate to is critical. She found great connections early in Jack’s journey at his early intervention program and in the waiting rooms of his various therapies. At the end of the day, she says, we need someone we can be "upset with." We need to be able to pick up the phone and call someone who will listen. It's "trying to find joy together so that [a] different diagnosis doesn't matter," Coppedge says. "We're all going through the same thing."
Coppedge was in denial for a while but has made peace with the fact that her son will not have the "same firsts" as other kids. She has found that the mourning continues with each milestone that her son doesn't hit, like other parents shuffling their kids to soccer games while she drives her son to therapies. She doesn't know if her son will have a full high school diploma or if he will go to college. That mourning and grief process doesn't go away. However, Coppedge has learned to cope with it better. "Now I'm just like, 'Okay, well, we're not doing that. But guess what we are going to do?' Now, my goal is this. And, adjusting your expectations all the time," she says. One thing Coppedge has learned is to learn from parents who have older kids with disabilities. They have walked the path before, and parents have deep knowledge to share. For a while, Coppedge didn’t want to believe what those parents were telling her about how she would need certain things and would need to adjust her life. She said to herself, “That’s not going to be mine. Now, that’s not true.” And then, Coppedge says, “100%, it was true.”
While it’s important for people to have a community made up of people from all backgrounds and walks of life, it’s also important that one have mirrors in their community — people who look or act like them. Through years of experience, Coppedge has found helping her son surround himself with a community of people similar to him has helped him feel empowered. She has found a few older mentors for Jack, adults living with CP. They serve as role models and show kids going through similar experiences that "life is possible" while instilling an "I can” attitude, even if they look a certain way or use a wheelchair, Coppedge says. This helps the kids who look up to them have a more accurate self-concept and self-perception of themselves.
More importantly, it allows individuals to find meaning in their actions, even if it is as simple as pulling their hands through a shirt hole, Coppedge says. If parents and caregivers continue to do things without allowing their children to attempt the actions themselves, the kids will not learn how to do things and will not know their goals and what they need to achieve. Coppedge wishes she had known this earlier. As parents, it's easy to skim past these things in the name of efficiency or ease, but Coppedge says to seize these opportunities whenever they present themselves to help build kids' self-esteem and confidence." This helps them "see that there is a world out there that will include me, as I am, and I can still do things," Coppedge says.
Up next, read our articles about Common Cerebral Palsy Therapies and Specialists and Cerebral Palsy (CP) 101.
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