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See me, not cerebral palsy – Madison’s Story

Madison, a young adult with cerebral palsy, shares her story of overcoming challenges in her life and encouraging others to embrace their differences At 22, Madison Heady’s life has been anything but ordinary. Madison has faced numerous challenges as a person with cerebral palsy but has transformed those hurdles into a powerful story of resilience and advocacy. The message of her webinar for My CP Guide is simple: "See me, not cerebral palsy."

https://www.mycpguide.org.au/blog/independence-and-inclusion/see-me-not-cerebral-palsy-madisons-story

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See me, not cerebral palsy – Madison’s Story

Madison, a young adult with cerebral palsy, shares her story of overcoming challenges in her life and encouraging others to embrace their differences

At 22, Madison Heady’s life has been anything but ordinary. Madison has faced numerous challenges as a person with cerebral palsy but has transformed those hurdles into a powerful story of resilience and advocacy. The message of her webinar for My CP Guide is simple: “See me, not cerebral palsy.”

Madison’s birth and infancy were difficult times, she shares, “I struggled to take my first breath and didn���t reach any of my baby milestones.” It wasn’t until the age of two that Madison was finally diagnosed with Ataxic Cerebral Palsy, a form that can affect the entire body. “I have spasms, shake uncontrollably, and my movements can be jerky and stiff,” she explains. These symptoms can impact everyday activities like walking, writing, and even sleeping.

Growing up with cerebral palsy was a unique experience for Madison and her family, but they learned how to support Madison in the best ways possible, particularly through physical activities that helped build her muscle and core strength. Madison recalls,

I was thrown from a very young age into everything from bike riding and swimming to physio, speech therapy, and specialised playgroups. It was extremely busy, challenging, and tiring.

Her early school years were a time of discovery, both for Madison and her classmates. Though she didn’t walk or talk until she was six years old, the students around her were curious about her disability. “They were fascinated by the tools I had to use, like a walking frame or sign language cards,” she says. With the support of her teachers, who incorporated disability education into the classroom, Madison found an environment of understanding and friendship. “The other kids grew up with me from pre-primary, and they learned about my disability and over time, they began to see me, not cerebral palsy.”

However, the transition to high school was not as smooth. Madison faced a shift in social dynamics, with students being less curious and more uncomfortable with her differences. “This time around, they weren’t curious to find out. They were just scared of what they didn’t know,” Madison recalls. The isolation she experienced was painful, compounded by the casual cruelty of some peers. She remembers overhearing a student asking a teacher, “Did she really have to be in my dance group?”

Determined to change the way others saw disability, Madison convinced her school principal to allow her to give a lesson on the topic. The impact of that single class was immediate.

For further details, check out the complete article cerebralpalsyAustralia

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Cerebral Palsy Australia | My CP Guide

Join our inclusive community in Australia! Connect with fellow individuals, families, and caregivers affected by cerebral palsy. Gain knowledge, support, and resources. Together, we empower each other.

Visit mycpguide.org.au or call us at 02 8259 7725 to access our resources and connect with our supportive community for Cerebral Palsy in Australia.

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Transitioning from Childhood to Adult Healthcare — Sophie’s Story

Sophie, an adult with cerebral palsy, shares her story about the emotional journey and practical challenges of ongoing healthcare

Has there ever been a place in your life that would overwhelm you with anxiety because of its association with painful procedures? Procedures that will dramatically improve your quality of life. But on the flip side of this, you also feel a strange sense of comfort, familiarity, and acceptance.

Growing up with cerebral palsy, this was my relationship with the Children’s Hospital at Westmead. Where car journeys were often filled with tantrums as I would cling so hard onto the car seat, using all my weight to push back into the seat, making it near impossible for Mum and Dad to pull me out of the car to attend my appointments.

Whilst this place terrified me, it also brought a feeling of being accepted and included for who I was because it would be one of the few settings where I would see another kid just like me, with the same walking frame and we would be able to compare stickers that we had plastered all over our frames to make it ‘cool’. We would be having running races up and down the corridor to entertain ourselves whilst our parents talked to one another about the latest treatment for cerebral palsy. I’m sure at times, they were talking about some of the challenges that they faced bringing up children with disabilities. But for me, at the time, this was more than just about winning a running race, it was about being on an equal playing field as I knew that the person next to me experienced similar if not the same challenges.

Once I became more aware of my condition into my early teenage years, this clinic became much more than just a place to belong and connect with others, it was a place that I felt confident in the staff and doctors that I was under the care of. Because they had watched me grow over many years, but more importantly, they had the experience, knowledge, and training in cerebral palsy. This brought me a great sense of comfort and confidence to know that even if I didn’t have all the answers, I could go to them and ask for advice.

I’m sure you’re probably asking yourself: “What’s the fear all about?”, given that many people have made this transition before and seeing that cerebral palsy is a life-long disability, it would make sense that I would receive the same level of care from a different group of specialists. But you’d be wrong. Where the Children’s Hospital at Westmead referred me to is a geriatric rehabilitation unit filled with patients who were in their senior years and were there because of a medical episode such as a stroke rather than something that they were born with.

Nine years later, as a 26-year-old, I am still yet to find a specialist who treats adults with cerebral palsy and has this as their main focus.

For more information about treatments and health management as a person with cerebral palsy, My CP Guide hosts a variety of information resources that can be applicable for people of all ages. Browse the Managing CP and Health and wellbeing sections to learn more.

Read the full article to know more about Transitioning from Childhood to Adult Healthcare — Sophie’s Story

Originally published at https://www.mycpguide.org.au.

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The Crucial Role of Early Intervention in Managing Cerebral Palsy in Australia

Cerebral palsy (CP) is a neurological condition that impairs an individual’s capacity to control movement and sustain balance and posture. The significance of early intervention is crucial in the management of cerebral palsy, particularly in the Australian context. This condition, often caused by damage to the developing brain before or during birth, requires a keen understanding of the early signs of cerebral palsy for timely detection and intervention.

Understanding Cerebral Palsy

Cerebral palsy presents itself in diverse manifestations, influencing aspects such as muscle tone, movement, and motor skills. Cerebral palsy can be categorized into distinct types, such as spastic, dyskinetic, ataxic, and mixed types, each posing unique challenges for individuals who experience them. Recognizing the early signs of cerebral palsy is crucial, especially in the context of managing this condition in Australia.

Read full article to know more about Crucial Role of Early Intervention in Managing Cerebral Palsy.

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The Connection between Birth Complications and Cerebral Palsy: What Parents Should Know

bral palsy (CP) is a complex neurological disorder that impacts a person’s ability to control movement, balance, and posture. Cerebral palsy typically emerges during the early stages of childhood as a result of damage to the developing brain. While the exact cerebral palsy causes is multifaceted, birth complications are widely recognized as a potential contributing factor. In this article, we will explore the link between birth complications and cerebral palsy, shedding light on vital information for parents, including signs of cerebral palsy in babies and resources available in countries like Australia.

Understanding Cerebral Palsy

Before delving into the connection with birth complications, it’s essential to grasp the basics of cerebral palsy. This condition can manifest in various ways, affecting muscle control, coordination, and posture. Its severity ranges from mild to severe, often accompanied by additional challenges such as intellectual disabilities, seizures, and sensory impairments.

Read the full article to know more about The Connection between Birth Complications and Cerebral Palsy.

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Cerebral Palsy Australia - Your Guide to Understanding and Managing Cerebral Palsy - My CP Guide

We provides a variety of resources for people living with cerebral palsy in Australia, including articles, videos, webinars, and support groups. We also offer information on assistive technologies, educational resources, and advocacy efforts to help individuals with cerebral palsy live full and fulfilling lives. Whether you are a parent of a child with cerebral palsy, a caregiver, or someone living with the condition. Visit mycpguide.org.au today to access our resources and connect with our supportive community.

[jackwhiteaustralia]

Cerebral Palsy and Inclusion

Growing up with a disability, you may sometimes feel like you are different from your peers. Briar, an adult with cerebral palsy, writes about how she grew to understand that others around her may perceive her differently, and how she handled those perceptions.

As I sat on the bus on my way home from school the reality that I was ‘different’ to everyone else became apparent. I sat with another girl at the front of the bus in the area normally reserved for people with disabilities. She commented, “It was fine for me to sit here because of my hips”. I smiled confused as to what she meant, but then it dawned on me that I was ‘different’; I had a disability. It wasn’t until I became an adult that I realised just how much having a disability made you ‘different’ to others, and that life would be spent fighting to be included.

My cerebral palsy was so mild to begin with that it didn’t really register with me that I was ‘different’ to my peers. I knew that I had a lot more medical appointments and that all the physical therapy hurt a lot. I knew that my handwriting was terrible, and that I must be slightly ‘different’ to others as I got to type all my work at school. I still ran around and played just like everyone else and participated in things I could do, but it wasn’t until that moment on the bus that I realised that I was a person with a disability.

Read the full article to know more about Cerebral Palsy and Inclusion.

#cp #mycpguide #cerebralpalsyaustralia #cerebralpalsysupport

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Cerebral Palsy and Inclusion

The moment I knew I was different: A story for the fight for inclusion

Growing up with a disability, you may sometimes feel like you are different from your peers. Briar, an adult with cerebral palsy, writes about how she grew to understand that others around her may perceive her differently, and how she handled those perceptions.

As I sat on the bus on my way home from school the reality that I was ‘different’ to everyone else became apparent. I sat with another girl at the front of the bus in the area normally reserved for people with disabilities. She commented, “It was fine for me to sit here because of my hips”. I smiled confused as to what she meant, but then it dawned on me that I was ‘different’; I had a disability. It wasn’t until I became an adult that I realised just how much having a disability made you ‘different’ to others, and that life would be spent fighting to be included.

My cerebral palsy was so mild to begin with that it didn’t really register with me that I was ‘different’ to my peers. I knew that I had a lot more medical appointments and that all the physical therapy hurt a lot. I knew that my handwriting was terrible, and that I must be slightly ‘different’ to others as I got to type all my work at school. I still ran around and played just like everyone else and participated in things I could do, but it wasn’t until that moment on the bus that I realised that I was a person with a disability.

At that moment, I was determined that I wasn’t going to define myself by my disability. What I didn’t realise was how the world would define me by my disability. I was going to study hard, do my best at school, go to university and start a career, all of which I achieved, despite many people telling me I wouldn’t be able to do so. However, as I grew older, I developed more chronic health conditions. With every passing year and new diagnosis, my hopes and dreams of having a ‘normal life’ seemed to disappear.

My cerebral palsy was so mild to begin with that it didn’t really register with me that I was ‘different’ to my peers.

I have found myself in and out of employment, as I’ve struggled to find suitable jobs for a person with multiple health conditions. The barriers to employment come from some employers not being willing to provide flexible employment. It can also come from health professionals believing that I’ll never be in a position to work. I’ve seen that community attitudes towards people with disabilities, no matter how mild the disability, has left me on the outside unable to ever feel fully part of a community.

I have tried my best to show people that despite having cerebral palsy, I think, feel and experience the ups and downs of life just like everyone else. Having cerebral palsy automatically makes you ‘different’ in the eyes of some people. It can leave you on the outside looking in, wearied by the fight to be included. I have experienced the hardships and discrimination that come with being a person with a disability, yet been robbed of developing relationships with people like me because my disability is so mild. At times it has left me feeling isolated and lonely, but it has also given me a reason to get up each morning and continue the fight for change to occur so that people with disabilities can be included in the world in which we all live.

If you need help with managing your mental health and wellbeing, we have a number of information resources available on our site. Visit the Mental Health section for more information on the tools and resources available to support you. We also have a section dedicated specifically to work on our website, so if you are looking for more resources around work and employment, you can find them here.

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Read the full article to know more about Cerebral Palsy

[willtay]

Essential Support for People with Cerebral Palsy: A Complete Guide to Care and Resources

Cerebral palsy (CP) is a lifelong condition that affects movement, muscle tone, and posture, resulting from damage to the developing brain either during pregnancy or shortly after birth. While there is no cure for CP, individuals can greatly benefit from a variety of support systems that enhance their physical, emotional, and social well-being. Here’s a look at the different types of support people with cerebral palsy often need.

1. Medical and Healthcare Support

People with cerebral palsy typically require ongoing medical care to manage their symptoms and improve their quality of life. A multidisciplinary healthcare team, including neurologists, pediatricians, and therapists, often works together to provide individualized care. Medications may be prescribed to control muscle spasms, pain, or seizures, which are common in individuals with CP.

In some cases, surgical interventions may be recommended to correct muscle stiffness or improve mobility. For instance, orthopedic surgery can help address deformities or improve the functionality of limbs, making everyday activities easier.

2. Therapeutic Support

Therapies are a cornerstone of managing cerebral palsy, and different types of therapy address various challenges posed by the condition:

Physical Therapy (PT): This focuses on improving motor skills, balance, and muscle strength. Customized exercise routines help individuals enhance their mobility, whether through walking or using assistive devices like walkers or wheelchairs.

Occupational Therapy (OT): OT helps individuals develop essential life skills, such as dressing, eating, and using everyday tools. Therapists often introduce adaptive equipment to foster greater independence.

Speech Therapy: Many people with CP experience difficulties with speech and communication. Speech therapy helps enhance speaking abilities, or in some cases, introduces alternative communication methods such as sign language or communication devices.

3. Educational Support

Children with cerebral palsy often require specialized education plans tailored to their cognitive and physical abilities. Schools typically create Individualized Education Programs (IEPs) that outline the support a child needs to succeed academically.

These programs can include access to adaptive learning tools, such as specialized seating, technology aids, or modified teaching strategies. Ensuring that educational environments are inclusive and accessible allows children with CP to reach their full potential.

4. Emotional and Social Support

Emotional well-being is crucial for individuals with cerebral palsy. CP can sometimes lead to social isolation, which is why it’s important for individuals to have emotional and social support systems in place. Counseling and therapy can help individuals cope with the emotional challenges of living with CP, while support groups provide families and individuals the opportunity to connect with others who share similar experiences.

Participating in community activities or recreational programs designed for people with disabilities is another way to build social connections and foster a sense of belonging.

Explore the complete article on Cerebral Palsy Support to get all the information.

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See me, not cerebral palsy – Madison’s Story Madison, a young adult with cerebral palsy, shares her story of overcoming challenges in her life and encouraging others to embrace their differences At 22, Madison Heady’s life has been anything but ordinary. Madison has faced numerous challenges as a person with cerebral palsy but has transformed those hurdles into a powerful story of resilience and advocacy. The message of her webinar for My CP Guide is simple: "See me, not cerebral palsy."

[clairebenblog]

Cerebral Palsy Australia | My CP Guide

Join our inclusive community in Australia! Connect with fellow individuals, families, and caregivers affected by cerebral palsy. Gain knowledge, support, and resources. Together, we empower each other. Visit mycpguide.org.au today to access our resources and connect with our supportive community for Cerebral Palsy in Australia.

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Cerebral Palsy Support-My CP Guide

The content on this page has been sourced from third parties. We decided they were useful and valuable pieces of information at the time we published them.

Visit the website to know more about Cerebral Palsy Support.

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Five Helpful Tips for Parents after a Cerebral Palsy Diagnosis

Cerebral palsy (CP) is a neurological disorder that impacts motor function, muscle management, and coordination. If someone in your family has been diagnosed with cerebral palsy, it’s important to provide them with the right support and understanding. Educating your family about cerebral palsy not only fosters empathy and inclusion but also helps break down stereotypes and misconceptions.

Receiving news of your child’s cerebral palsy diagnosis can be a moment filled with a mix of emotions and challenges. Acknowledge the importance of understanding that you’re not on this journey by yourself. With the right support and information, you can navigate the challenges and provide your child with the best possible care.

Read the full article to know more about Five Helpful Tips for Parents after a Cerebral Palsy Diagnosis.

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Understanding Cerebral Palsy: A Guide to Classification and Treatment Options

Cerebral Palsy (CP) is a group of neurological disorders that affect movement, muscle tone, and coordination. It can be caused by damage to the developing brain before, during, or after birth. Although cerebral palsy is a non-progressive disorder, it can affect a person’s mobility, communication, and daily living activities .

According to Northern Territory Government information and services, Cerebral Palsy in Australia is the most common physical disability in children, with an estimated 34,000 people affected. Early intervention and therapy can improve outcomes and quality of life for those with CP.

Classification of CP

There are five main types of cerebral palsy and each type of CP is characterised by specific symptoms and affects different areas of the body.

Ataxic Cerebral Palsy

Ataxic CP is less common, affecting around 5–10% of people with CP. It is caused by damage to the cerebellum, which is responsible for coordinating movement and balance. People with ataxic CP have poor balance and coordination, and they may have difficulty with fine motor skills, such as writing or buttoning clothes. They may also have a wide-based gait and may sway or stumble when walking.

Athetoid Cerebral Palsy

Athetoid CP, also known as dyskinetic CP, affects around 10–20% of people with CP. It is caused by damage to the basal ganglia, which is responsible for controlling movement. People with athetoid CP have involuntary movements that can be slow and writhing or fast and jerky. They may also have difficulty controlling their posture and may have trouble sitting upright or holding their head steady.

Hypotonic Cerebral Palsy

Hypotonic CP is a rare form of CP, affecting less than 5% of people with CP. It is caused by damage to the cerebellum or the brainstem, which can affect muscle tone and coordination. People with hypotonic CP have low muscle tone, which means their muscles are floppy and weak. They may also have difficulty with posture and may have trouble sitting upright or holding their head steady.

Spastic Cerebral Palsy

Spastic CP is th e most common type, affecting around 70–80% of people with CP. It is caused by damage to the motor cortex of the brain, which controls voluntary movement. People with spastic CP have increased muscle tone, which means their muscles are constantly contracted and can be stiff and difficult to move. They may also experience muscle spasms, especially when trying to move quickly. Spastic CP can affect one or both sides of the body, and it can also affect the legs, arms, or both.

Mixed Cerebral Palsy

Mixed type CP is a combination of two or more types of CP. For example, a person may have spastic and athetoid CP, or ataxic and hypotonic CP. The symptoms and severity of mixed type CP can vary depending on the types of CP involved.

Explore the comprehensive article for deeper insights into Understanding Cerebral Palsy Treatments

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NDIS goal setting for adults with cerebral palsy

This new resource created in partnership with CP-Achieve provides guidance around setting NDIS goals

Setting goals is a key part of the NDIS planning process and clearly expressed goals can help maximize the outcomes of your NDIS plan. Whether it’s increasing your independence, building relationships or improving your physical function, clear goals can help achieve the NDIS funding you need for your supports and services.

This new resource NDIS goal setting for adults with cerebral palsy can be used by people with CP, their families, and other people in their support networks to help inform their decision-making when it comes to setting NDIS goals. Taking an informed approach to setting goals will empower you make the most of the potential supports that are available to you as an NDIS participant.

Your goals:

are the things you want to achieve with the support of the NDIS

should be related to your disability needs and future aspirations

help the NDIS to better understand your disability and how it affects your life

Read the full article to know more about NDIS goal setting for adults with cerebral palsy

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