Raising a child with both epilepsy and cerebral palsy presents unique challenges that require comprehensive medical care, daily management strategies, and a coordinated team approach. While the dual diagnosis can feel overwhelming, understanding how to manage both conditions together, knowing what resources are available, and building a strong support system can make a meaningful difference in your child’s development, safety, and quality of life.

This guide provides practical, evidence-based information to help you navigate medical care, therapy, education, emergency planning, and daily life with a child who has both conditions.

Understanding the Connection Between Cerebral Palsy and Epilepsy

Cerebral palsy and epilepsy often occur together because they can both result from similar brain injuries or abnormalities that happen before, during, or shortly after birth.

Cerebral palsy is the most common motor disability in childhood, affecting approximately 1 in 345 children in the United States. Roughly 1 million Americans live with cerebral palsy. The condition affects movement, posture, and muscle coordination due to damage to the developing brain.

Epilepsy is one of the most frequent additional conditions that children with CP experience. About 35-45% of children with cerebral palsy also have epilepsy, making seizure management a critical component of care for nearly half of all children with CP.

The co-occurrence is not random. Both conditions often stem from the same underlying causes, such as:

Brain injury from lack of oxygen during birth
Bleeding in the brain
Infections affecting the brain
Structural brain abnormalities
Premature birth complications

Children with both conditions typically have more severe motor impairments and cognitive challenges compared to children with CP alone, which is why coordinated, multidisciplinary care becomes especially important.

When Seizures Typically Begin in Children With CP

Understanding the timeline for seizure onset helps parents know what to watch for and when to seek evaluation.

Seizures typically begin early in children who have both cerebral palsy and epilepsy. Up to 70% of affected children will experience their first seizure before one year of age. This early onset means that parents often recognize seizure activity during infancy or toddlerhood.

However, seizures can also develop later in childhood. Some children with CP don’t experience their first seizure until they’re several years old. This means that even if your child hasn’t had seizures yet, remaining vigilant for signs and maintaining regular neurological follow-up is important.

Early identification of seizures matters because prompt treatment can help control seizure activity, potentially reducing the risk of further brain injury and supporting better developmental outcomes.

Recognizing Different Types of Seizures in Your Child

Seizures can look very different from one child to another, and even the same child may experience different types of seizures. Understanding what seizures can look like helps you recognize them and respond appropriately.

Common Seizure Types in Children With CP

Generalized tonic-clonic seizures (formerly called grand mal seizures) are often what people picture when they think of seizures:

Loss of consciousness
Stiffening of the body (tonic phase)
Jerking movements of the arms and legs (clonic phase)
Possible loss of bladder or bowel control
Confusion or sleepiness after the seizure

Focal seizures (also called partial seizures) affect only one area of the brain and may cause:

Twitching or jerking of one part of the body
Unusual sensations like tingling or strange smells
Staring episodes with some awareness
Automatisms like lip smacking or hand movements
Changes in emotions or perception

Absence seizures involve brief episodes of staring or loss of awareness:

Sudden stopping of activity and staring
Lasting typically 10-20 seconds
No memory of the episode
Immediate return to activity afterward
May be mistaken for daydreaming or inattention

Atonic seizures (drop seizures) cause sudden loss of muscle tone:

Sudden collapse or falling
Head dropping forward
Brief loss of consciousness
Particular risk for injury from falls

Infantile spasms occur primarily in babies and involve:

Sudden stiffening and jerking
Often occur in clusters upon waking
Arms may extend or flex suddenly
Require urgent medical evaluation

What Seizures Might Look Like in Children With Severe CP

In children with significant physical disabilities, recognizing seizures can be more challenging because:

Baseline muscle tone abnormalities can mask seizure-related movements
Limited movement abilities may make seizure activity less obvious
Communication difficulties prevent the child from describing unusual sensations
Some seizure types may present subtly as changes in awareness or behavior

Parents of children with severe CP should watch for:

Any change from the child’s baseline behavior or muscle tone
Staring episodes or periods of unresponsiveness
Unusual eye movements or sustained eye deviation
Changes in breathing patterns
Increased irritability or crying without clear cause

When in doubt, describe the concerning behavior to your child’s neurologist. Video recording suspected seizures on your phone can be incredibly helpful for physicians trying to determine whether events are seizures.

Building Your Child’s Medical Care Team

Managing both epilepsy and cerebral palsy requires coordination among multiple specialists and healthcare professionals.

Essential Specialists for Dual Diagnosis Care

Your child’s care team should typically include:

Pediatric neurologist or epileptologist: Manages seizure treatment, monitors medication effectiveness, and adjusts treatment plans. An epileptologist specializes specifically in epilepsy and may be recommended for difficult-to-control seizures.

Developmental pediatrician: Oversees overall development, coordinates care among specialists, and addresses developmental delays and behavioral concerns.

Physical therapist: Works on gross motor skills, mobility, preventing contractures, and maximizing physical function within your child’s abilities.

Occupational therapist: Focuses on fine motor skills, daily living activities like feeding and dressing, and adaptive equipment needs.

Speech-language pathologist: Addresses communication challenges, feeding and swallowing difficulties, and alternative communication methods when needed.

Orthopedic surgeon: Manages musculoskeletal issues common in CP, such as hip displacement, scoliosis, or contractures requiring intervention.

Nutritionist or dietitian: Particularly important if your child follows a special diet for seizure control (like the ketogenic diet) or has feeding difficulties.

Social worker or care coordinator: Helps navigate insurance, connect with community resources, coordinate services, and provide family support.

How to Coordinate Care Among Multiple Providers

Managing appointments, recommendations, and communication from multiple specialists can feel overwhelming. Strategies that help include:

Keeping a medical binder with test results, medication lists, specialist reports, and care plans
Asking for copies of all reports and bringing them to appointments with other specialists
Requesting that specialists copy each other on reports and recommendations
Designating one provider (often the developmental pediatrician or primary care physician) as the care coordinator
Preparing a one-page summary of your child’s conditions, medications, and key contacts to share with new providers
Asking questions when recommendations from different specialists seem to conflict

You are the constant in your child’s care and the expert on your child. Don’t hesitate to advocate for better communication among your child’s providers.

Managing Your Child’s Seizures With Medication

Seizure control is a primary goal of epilepsy treatment and typically involves anticonvulsant medications.

How Anticonvulsant Medications Work

Anticonvulsant medications (also called antiepileptic drugs or AEDs) work by stabilizing electrical activity in the brain to prevent seizures. Different medications work through different mechanisms, which is why one medication may work for a child when another doesn’t.

Common anticonvulsant medications used in children include:

Levetiracetam (Keppra)
Valproic acid (Depakote)
Oxcarbazepine (Trileptal)
Lamotrigine (Lamictal)
Phenobarbital
Topiramate (Topamax)
Carbamazepine (Tegretol)

Many children need only one medication to control seizures, but some require multiple medications working together.

Finding the Right Medication and Dosage

Finding the right seizure medication often involves trial and adjustment:

Starting with one medication at a low dose
Gradually increasing the dose while monitoring for seizure control and side effects
Allowing adequate time (often several weeks) to assess effectiveness
Adjusting dosage as your child grows and gains weight
Sometimes trying different medications if the first choice doesn’t work well
Occasionally adding a second medication if one alone isn’t sufficient

This process requires patience. It may take time to find the right medication or combination that provides good seizure control with manageable side effects.

Possible Side Effects and How to Manage Them

All medications can cause side effects, though many children tolerate anticonvulsants well. Common side effects may include:

Drowsiness or fatigue
Dizziness or balance problems
Mood changes or irritability
Decreased appetite
Nausea or stomach upset
Cognitive effects like difficulty concentrating

More serious but less common side effects can include:

Rash (which can sometimes be serious)
Liver problems
Blood cell abnormalities
Severe behavioral changes

Regular monitoring through blood tests and careful observation helps catch problems early. Never stop or change seizure medications without consulting your child’s neurologist, as sudden changes can trigger more seizures or even status epilepticus, a dangerous condition of prolonged seizures.

Importance of Medication Adherence

Giving seizure medications consistently and exactly as prescribed is crucial for:

Maintaining steady medication levels in the blood
Preventing breakthrough seizures
Reducing risk of status epilepticus
Allowing accurate assessment of medication effectiveness

Strategies for remembering medications include:

Using a daily pill organizer
Setting phone alarms for medication times
Giving medications with meals or other routine activities
Keeping a medication log
Preparing medications the night before busy mornings

If you miss a dose, contact your neurologist’s office for guidance rather than guessing what to do.

Alternative Treatments for Difficult-to-Control Seizures

When medications alone don’t adequately control seizures, other treatment options may be considered.

The Ketogenic Diet for Seizure Control

The ketogenic diet is a high-fat, low-carbohydrate diet that can help reduce seizures in some children. The diet changes how the body produces energy, which can affect brain activity and reduce seizure frequency.

The ketogenic diet:

Requires careful planning and monitoring by a specialized dietitian
Involves precise measurement of all food intake
Must be started under medical supervision, often in the hospital
Requires regular blood and urine monitoring
Can be challenging to maintain but may significantly reduce seizures when effective

Variations like the modified Atkins diet or low glycemic index diet may be easier to follow while still providing some seizure control benefits.

Vagus Nerve Stimulation (VNS)

VNS involves surgically implanting a device that sends regular electrical pulses to the brain via the vagus nerve in the neck. This can reduce seizure frequency in some children who don’t respond well to medications.

The VNS device:

Delivers stimulation automatically at programmed intervals
Can also be activated manually with a magnet during seizure warning signs
Often reduces seizure frequency and severity rather than eliminating seizures completely
Has relatively few side effects, most commonly voice changes during stimulation
Continues working along with medications

Epilepsy Surgery Considerations

For some children, surgery to remove the area of brain causing seizures may be an option. This is typically considered when:

Seizures originate from a specific, identifiable brain region
That region can be safely removed without causing unacceptable deficits
Seizures are severely impacting quality of life and development
Medications have not provided adequate control

Epilepsy surgery evaluation is complex and involves extensive testing to determine whether surgery is appropriate and safe for a particular child.

Physical, Occupational, and Speech Therapy Needs

Therapy is foundational for children with cerebral palsy and remains important even when epilepsy is also present.

Why Early Intervention Makes a Difference

Early intervention services, typically provided from birth through age three, lead to improved long-term outcomes by:

Taking advantage of young brains’ neuroplasticity
Preventing secondary complications like contractures
Teaching families strategies to support development at home
Addressing delays before they compound
Supporting school readiness

Research consistently shows that earlier and more intensive intervention produces better functional outcomes for children with CP.

Adapting Therapy to Your Child’s Physical Abilities

Therapists must consider both your child’s motor limitations from CP and seizure safety when designing interventions:

Physical therapy focuses on maximizing mobility, whether that means independent walking, assisted walking, or wheelchair mobility
Occupational therapy adapts daily activities to your child’s abilities and recommends equipment that increases independence
Speech therapy addresses both communication needs and feeding difficulties, which are common in children with moderate to severe CP

Therapy goals should be individualized, functional, and meaningful to your family’s daily life.

Preventing Contractures and Maintaining Mobility

Contractures, where muscles and tendons become permanently shortened, are a significant concern in CP. Prevention strategies include:

Regular stretching exercises performed daily
Appropriate positioning throughout the day
Use of orthotic devices like ankle-foot orthoses (AFOs)
Serial casting in some cases
Muscle relaxant medications when spasticity is severe
Sometimes surgical lengthening procedures if contractures develop despite prevention efforts

Maintaining range of motion prevents pain and preserves whatever mobility your child has.

Communication Support and Alternative Methods

Many children with both CP and epilepsy face communication challenges. Support may include:

Speech therapy targeting articulation and language skills
Augmentative and alternative communication (AAC) devices for children who cannot speak or whose speech is difficult to understand
Sign language or picture exchange systems
Eye-gaze technology for children with severe physical limitations
Communication apps on tablets

Having a way to communicate, even if not through speech, dramatically affects quality of life, learning, and behavior.

Creating a Seizure Action Plan

A seizure action plan is a written document that tells everyone who cares for your child exactly what to do if a seizure occurs.

What to Include in Your Seizure Action Plan

An effective seizure action plan includes:

Child’s identifying information: Name, date of birth, photo, and emergency contacts

Description of your child’s typical seizures: What they look like, how long they usually last, and what normally happens afterward

Seizure first aid steps: Specific instructions for staying calm, ensuring safety, timing the seizure, and providing comfort

When to give emergency medication: If prescribed, clear instructions about when and how to administer rescue medications like rectal diazepam or nasal midazolam

When to call 911: Specific criteria such as seizures lasting longer than five minutes, multiple seizures without recovery between them, difficulty breathing, or injury during the seizure

Medication list: Current seizure medications with doses and timing

Special considerations: Any specific positioning needs, communication challenges, or other relevant information

Seizure First Aid Basics Everyone Should Know

Basic seizure first aid includes:

During the seizure:

Stay calm and time the seizure
Keep the child safe by moving hard or sharp objects away
Turn the child on their side if possible to keep airways clear
Place something soft under the head
Stay with the child until the seizure ends
Never put anything in the mouth
Don’t restrain the child

After the seizure:

Allow the child to rest and recover
Check for injuries
Provide comfort and reassurance
Document what happened
Monitor for additional seizures

Most seizures stop on their own within a minute or two and don’t require emergency medical care.

When to Administer Emergency Seizure Medication

Some children are prescribed emergency seizure medication (rescue medication) to stop prolonged seizures. Common rescue medications include:

Rectal diazepam (Diastat)
Nasal midazolam (Nayzilam)
Buccal midazolam (Epistatus)

Your neurologist will provide specific instructions about:

When to give the medication (typically if a seizure lasts longer than a certain time, often 5 minutes)
How to administer it correctly
What to expect after giving it
Whether to call 911 after administering it

All caregivers should be trained on how to give emergency medication before they’re responsible for caring for your child alone.

When to Call 911 for Seizure Emergencies

Call 911 if:

A seizure lasts longer than 5 minutes
Multiple seizures occur without full recovery between them
The child has trouble breathing or turns blue
The child is injured during the seizure
The seizure occurs in water
You’ve given emergency medication and the seizure hasn’t stopped
This is the child’s first known seizure
Something seems different or wrong even if you’re not sure what

When in doubt, it’s better to seek emergency care. Healthcare providers would rather see a child who turns out to be fine than miss a dangerous situation.

Making Your Home Safe for a Child With Seizures

Home modifications can significantly reduce injury risk during seizures.

Bedroom Safety Modifications

The bedroom requires special attention since many seizures occur during sleep:

Use a low bed or mattress on the floor to prevent falls
Install padded bed rails if the bed is raised
Remove hard furniture with sharp corners from near the bed
Use a seizure monitoring device that alerts you to seizure activity
Consider video monitoring so you can check on your child without disturbing them
Keep the room clutter-free to reduce tripping hazards
Use soft bedding but avoid excessive pillows that could obstruct breathing

Bathroom Safety Measures

Bathrooms pose particular risks:

Never leave a child with seizures alone in the bathtub
Use a shower instead of baths when possible, with a shower chair for stability
Install grab bars and non-slip mats
Keep the bathroom door unlocked so you can access it in an emergency
Consider a toilet seat with arms for support
Keep water temperature regulated to prevent burns if a seizure occurs during water use

Kitchen and Living Area Considerations

Throughout your home:

Use protective padding on sharp furniture corners and edges
Choose soft flooring where possible, or use rugs to cushion falls
Use microwave instead of stovetop when your child is cooking (for older children with some independence)
Store breakable items safely away from areas where your child spends time
Ensure adequate space for safe movement if your child uses mobility equipment
Install safety gates on stairs if needed

Helmet Use for Fall Protection

Some children with frequent drop seizures or atonic seizures benefit from wearing a protective helmet:

Lightweight helmets designed for seizure protection
Custom-fitted for comfort and proper protection
Worn during times of highest seizure risk
Can significantly reduce head injury risk

Discuss with your neurologist whether a helmet is appropriate for your child.

Supporting Your Child’s Education and Development

Children with both CP and epilepsy are entitled to educational support and accommodations.

Understanding Special Education Rights Under IDEA

The Individuals with Disabilities Education Act (IDEA) is a federal law ensuring that children with disabilities receive appropriate educational services. Under IDEA:

Children are entitled to a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE)
An Individualized Education Program (IEP) must be developed outlining goals, services, and accommodations
Parents are essential members of the IEP team
Schools must provide necessary related services like physical therapy, occupational therapy, and speech therapy
Transportation must be provided if needed
Services begin at age 3 (or earlier in some states through early intervention)

Understanding your rights helps you advocate effectively for your child.

Developing an Effective IEP for Your Child

An IEP should include:

Present levels of performance: Detailed description of your child’s current abilities and challenges

Measurable annual goals: Specific, achievable goals in areas like academics, motor skills, communication, and social skills

Special education and related services: Which services your child will receive, how often, and for how long

Accommodations and modifications: Changes to instruction, materials, or environment that help your child learn

Participation in general education: Extent to which your child will be in regular classrooms

Progress monitoring: How and when progress toward goals will be measured and reported

Transition planning: For older children, planning for life after school

Come to IEP meetings prepared with your observations, concerns, and priorities. Bring documentation of your child’s abilities and needs.

Educating School Staff About Seizures

School personnel who work with your child must understand their seizure disorder:

Provide your seizure action plan to the school nurse and all staff working with your child
Request training for staff on recognizing and responding to your child’s seizures
Ensure the school nurse has emergency medication and staff are trained to assist
Discuss any seizure triggers or warning signs specific to your child
Address any activity restrictions necessary for safety
Plan for how seizures will be handled during school activities, field trips, and transportation

Some schools are hesitant about accommodating children with complex medical needs. Know that under federal law, they must provide appropriate accommodations.

Classroom Accommodations for Seizures and CP

Helpful accommodations may include:

Preferential seating near the teacher for better supervision
Extra time for assignments and tests if seizures or medications affect processing speed
Use of assistive technology for writing or communication
Modified physical education adapted to your child’s abilities
Break time for medication or rest if needed
Note-taking assistance if fine motor difficulties make writing challenging
Testing in a separate location if needed for focus or privacy
Access to elevator and accessible facilities

Accommodations should address both the motor challenges of CP and the impact of epilepsy on attention and learning.

Balancing Safety With Independence and Social Inclusion

Finding the right balance between keeping your child safe and allowing them to participate fully in school life is challenging:

Focus on what your child can do, with appropriate supports, rather than automatically excluding them
Work with the school to find creative solutions that allow participation
Encourage peer relationships and social inclusion
Allow age-appropriate independence with safety measures in place
Celebrate abilities and achievements alongside addressing challenges

Children need opportunities to learn, grow, and belong, even when that requires extra planning and support.

Managing Co-Occurring Medical Issues

Children with both CP and epilepsy frequently face additional medical challenges that require attention.

Feeding Difficulties and Nutritional Support

Many children with moderate to severe CP have feeding and swallowing challenges:

Difficulty coordinating suck, swallow, and breathe as infants
Trouble chewing and moving food around the mouth
Risk of aspiration (food or liquid entering the airway)
Increased energy needs due to muscle tone and movement differences
Growth challenges and low weight

Management may include:

Modified food textures and thickened liquids
Specialized feeding techniques and positioning
Extended feeding times to ensure adequate nutrition
Sometimes enteral feeding through a gastrostomy tube (G-tube) when oral feeding is unsafe or insufficient
Regular monitoring of growth and nutrition status

Sleep Problems and Management Strategies

Sleep disturbances are common and can include:

Difficulty falling or staying asleep
Frequent nighttime seizures disrupting sleep
Sleep apnea, particularly in children with more severe CP
Medication side effects affecting sleep
Discomfort from spasticity or positioning issues

Improving sleep might involve:

Consistent bedtime routines
Appropriate positioning and supportive equipment
Addressing pain or discomfort
Sometimes medication to support sleep
Treatment of sleep apnea if present
Seizure monitoring to understand nighttime seizure patterns

Better sleep improves both seizure control and daytime functioning.

Respiratory Issues and When to Worry

Respiratory problems can occur due to:

Weak respiratory muscles affecting cough and secretion clearance
Aspiration of food, liquid, or saliva
Scoliosis restricting lung expansion
Seizures affecting breathing during and after the event

Watch for signs like:

Frequent respiratory infections
Noisy breathing or increased congestion
Coughing during or after eating or drinking
Increased work of breathing or use of accessory muscles
Oxygen saturation drops
Blue or pale color

Respiratory issues require prompt medical attention and may necessitate interventions like chest physiotherapy, cough assist devices, or sometimes breathing support.

Managing Pain and Discomfort

Children with CP can experience pain from:

Muscle spasticity and tight muscles
Joint problems
Surgical procedures
Reflux or gastrointestinal issues
Positioning and pressure areas

Pain management is important but can be complicated by communication difficulties that make it hard for children to express discomfort. Watch for behavioral signs like:

Increased irritability or crying
Changes in sleep or eating patterns
Facial grimacing
Resistance to positioning or movement
Changes in tone or posture

Pain should be treated with appropriate medications, positioning, stretching, and addressing underlying causes.

Planning for Emergencies and Hospital Visits

Preparation makes emergency situations less stressful and ensures better care.

Creating a Medical Information Sheet

Keep an updated one-page document with:

Your child’s name, date of birth, and photo
Diagnoses and medical history
Current medications with exact doses and timing
Allergies
Equipment your child uses
Recent surgeries or hospitalizations
Names and contact information for your child’s specialists
Insurance information
Emergency contacts

Keep copies in your car, your child’s school backpack, and with regular caregivers. Take a copy to every medical appointment and emergency room visit.

What to Bring to Emergency Room Visits

When seeking emergency care, bring:

Your medical information sheet
Current medications in their bottles
Your seizure action plan if relevant
Feeding supplies if your child uses specialized equipment
Communication device if your child uses AAC
Comfort items that help your child feel secure
Any recent medical records relevant to the current problem

Communicating Your Child’s Complex Needs to New Providers

Emergency room staff may not be familiar with your child or complex medical conditions. Be prepared to:

Clearly explain both CP and epilepsy and how they affect your child
Describe your child’s baseline abilities so providers understand what’s normal
Explain how your child communicates pain or distress
Mention any medications that should be avoided
Describe any atypical presentations or responses your child has
Advocate firmly but respectfully when you know something is wrong

You are the expert on your child. Trust your instincts when something doesn’t seem right.

Planning for Planned Hospitalizations

When your child needs scheduled surgery or procedures:

Meet with the surgical and anesthesia teams beforehand to discuss your child’s specific needs
Ensure the hospital understands medication schedules, particularly for seizure control
Bring familiar items for comfort
Discuss pain management plans appropriate for your child
Arrange for family to stay with your child if possible
Plan for post-operative care needs at home

Good preparation reduces complications and anxiety for everyone.

Building Your Support System

Caring for a child with complex medical needs affects the whole family and requires strong support.

Connecting With Other Families

Finding other families who understand your experience provides invaluable support:

Local support groups for parents of children with CP or epilepsy
Online communities and forums
Parent-to-parent matching programs
Support groups through hospitals or rehabilitation centers
Condition-specific organizations that connect families

These connections offer:

Practical advice from those who’ve faced similar challenges
Emotional support from people who truly understand
Information about resources and providers
Reduced isolation
Hope from seeing other families thrive

Finding Respite Care Services

Respite care gives family members breaks from caregiving demands. Options include:

In-home respite providers who care for your child while you rest or attend to other needs
Out-of-home respite at specialized facilities
Programs through state developmental disability services
Voucher programs that help pay for respite
Sometimes extended family or friends who are trained to care for your child

Regular respite prevents burnout and helps you sustain long-term caregiving.

Counseling and Mental Health Support for Families

The stress of raising a child with complex needs affects mental health:

Individual counseling helps process emotions and develop coping strategies
Couples therapy supports relationships strained by caregiving stress
Family therapy helps siblings and the whole family adapt
Support groups specifically for parents or siblings
Psychiatric care if depression or anxiety become significant

Taking care of your own mental health isn’t selfish; it’s necessary for your ability to care for your child.

Advocating for Your Child’s Needs

Effective advocacy involves:

Learning about your child’s conditions and rights
Clearly communicating your child’s needs and your priorities
Documenting concerns and keeping records
Building collaborative relationships with providers and educators when possible
Knowing when to push harder or seek second opinions
Connecting with advocacy organizations for support
Sometimes involving advocates or attorneys for complex situations

Your voice is powerful. You know your child best and are their primary advocate.

Fostering Independence and Quality of Life

Even with significant challenges, children can have meaningful, joyful lives.

Encouraging Participation in Age-Appropriate Activities

Look for ways your child can participate in activities their peers enjoy:

Adapted sports and recreation programs
Inclusive community activities
Modified versions of games and play
Arts, music, and other creative outlets accessible to various ability levels
Social opportunities with peers

Participation supports emotional wellbeing, builds skills, and provides joy beyond the medical aspects of your child’s life.

Celebrating Small Achievements and Progress

With complex disabilities, progress may be slower and look different than for typically developing children:

Set individualized, realistic goals based on your child’s abilities
Celebrate all progress, even small steps
Focus on your child’s strengths alongside addressing challenges
Document achievements to see progress over time
Share successes with your child’s care team
Help your child feel proud of their efforts and accomplishments

Every achievement matters and deserves recognition.

Promoting Self-Advocacy as Your Child Grows

As your child develops, involve them in decisions about their care:

Explain medical procedures in age-appropriate ways
Ask for their input on therapies and goals when possible
Teach them about their conditions at a level they can understand
Encourage them to express preferences and concerns
Support their growing independence in whatever areas possible
Help them develop self-advocacy skills they’ll need as adults

Children who are included in decisions about their own lives develop greater autonomy and self-determination.

Maintaining Family Balance and Sibling Needs

Siblings of children with complex needs deserve attention too:

One-on-one time with each parent
Activities and interests of their own
Age-appropriate understanding of their sibling’s conditions
Support for their own feelings, which may include worry, resentment, or pressure
Opportunities to be kids without excessive caregiving responsibility
Connection with other siblings of children with disabilities

Family balance is challenging but important for everyone’s wellbeing.

Planning for Your Child’s Future

As your child grows, planning for transitions and long-term needs becomes important.

Transition Planning for Adult Services

Transition planning should begin in the early teen years:

Shift from pediatric to adult healthcare providers
Transition from school-based services to adult day programs or employment
Plan for residential options if appropriate
Establish adult disability services and supports
Set up guardianship or supported decision-making as needed
Plan for financial security through benefits, trusts, and other tools

The transition to adulthood is complex and benefits from early, thoughtful planning.

Maximizing Your Child’s Potential for Independence

Focus on building skills that increase independence:

Self-care abilities appropriate to your child’s capabilities
Communication skills and use of assistive technology
Social skills and relationship building
Academic and vocational skills
Community navigation and safety
Self-advocacy and expressing preferences

Even children with significant disabilities can develop independence in some areas with appropriate support and expectations.

Legal and Financial Planning Considerations

Important planning includes:

Special needs trusts to preserve eligibility for needs-based benefits
Guardianship or alternatives for adult children who cannot make independent decisions
Life care planning estimating lifetime costs and needs
Estate planning ensuring your child will be cared for throughout their life
Connecting with benefits programs like SSI, Medicaid, and state disability services

Work with attorneys and financial planners experienced in disability planning.

Finding Hope in the Journey

Raising a child with both epilepsy and cerebral palsy involves challenges that can feel overwhelming. Medical appointments, therapy schedules, medication management, emergency planning, and daily care demands are real and significant.

But amid the challenges, there is also love, joy, growth, and connection. Your child is more than their diagnoses. They have personality, preferences, strengths, and the capacity to bring meaning to your life and the lives of others. Progress may look different than you initially imagined, but it is still progress worth celebrating.

You are not alone in this journey. Resources exist, communities of other families understand, healthcare providers want to help, and your child can thrive with your support and advocacy.

Take things one day at a time, celebrate the victories, seek help when you need it, and remember that providing loving care for your child while also caring for yourself and your family is enough. You are doing important work, and your child is lucky to have you as their advocate and parent.

Complete Care Guide for Children With Both Epilepsy and Cerebral Palsy