As I sit down to type what is likely my last blog of the year, I find myself enveloped in a contemplative mood. It’s not the triumphant conclusion I envisioned, where I would announce the imminent release of my book on cerebral palsy. Instead, it’s a moment of candid introspection, a recognition that the path to achieving our goals is often a winding and unpredictable journey.

The Unraveling Journey:

My initial goal was clear—to educate and prepare readers for the narrative of my book on cerebral palsy. A fusion of memoir and self-help, I embarked on a mission that, in hindsight, I wish I had approached differently. The intersection of personal reflection and practical guidance proved to be a more intricate dance than I initially perceived.

The Wisdom of Realization:

In this moment of reflection, I acknowledge a truth I’ve come to understand: the wisdom to recognize a mistake is as valuable as the courage to embark on a goal. It’s okay to reassess, to acknowledge the need for recalibration. Years of combining the personal with the instructive have taught me the importance of clarity in storytelling.

A New Chapter Beckons:

The next step on this journey involves a professional editor—an unbiased guide who will dissect my work from start to finish. It’s a prospect that excites me. The idea of refining, redefining, and allowing the narrative to find its true voice is both daunting and invigorating. This pause is not an end but a necessary breath before the sprint towards a more polished manuscript.

Gratitude for the Readers:

To you, the readers who have journeyed with me through these blogs, I extend my deepest gratitude. Your support, understanding, and encouragement have been the pillars that held me upright through the peaks and valleys of this creative pursuit. While the finish line may be momentarily out of sight, the journey continues, and I invite you to stay tuned for the chapters yet to unfold.

Closing Words:

In the spirit of transparency and authenticity, I share this pause in the journey with you. It’s a reminder that the path to creation is seldom linear but is, nonetheless, an integral part of the creative process. So here’s to embracing the unexpected, to learning from detours, and to the beauty that resides in the unraveling of our stories.

Thank you for being a part of this journey. I look forward to sharing the next chapter with you, refined and resolute. Until then, take care, and may your own journeys be filled with revelations, growth, and moments of profound joy.

I am so grateful for all of the miracles that happened throughout my life, especially the day of my birth. 

Miracle #1 – One crisp morning in early spring, Mom couldn’t shake the feeling that something wasn’t right. My pregnancy had progressed quite normally, but with only one week until his due date, she sensed an unease. After a call to the doctor, unable to pinpoint any specific issue, the doctor suggested heading to the hospital for monitoring.

Miracle #2 – Trusting Mom’s gut feeling, the doctor didn’t dismiss her concerns as typical expectant mother worries. Mom and Jeff headed to the hospital, finding themselves placed on a regular floor due to the busy labor & delivery unit. After a few hours, with my heart rate appearing low, the doctor decided to induce Mom.

Miracle #3 – Amidst the hospital’s bustling activity, a potentially dire situation unfolded. In the time it took for Mom to transition from a regular room to labor & delivery, my heartbeat was lost entirely. Initially attributing it to difficulties attaching the heart monitor, a realization struck—the baby had no heartbeat. A calm panic, known only to hospitals, ensued, leading to an emergency c-section.

Miracle #4 – Miraculously, the hospital was prepared for another c-section, swiftly rolling Mom into the room. Jeff, barred from entering, witnessed Mom going under anesthesia, praying for Michael’s well-being. She later woke up in a room, and I was brought in—a naked little body in an incubator, but alive!

Miracle #5 – Grateful for the chance to see him before whisking him away, Mom could only cry tears of joy, knowing her little boy had survived the harrowing ordeal. Meanwhile, back in college, I faced the challenges of university life with a determination fueled by the incredible journey that marked his entrance into the world.

Challenge: Watch for miracles in your life 

Halloween, a holiday filled with costumes, candies, and festivities, has a special place in the hearts of many. However, for someone like me, who faces the challenges of cerebral palsy, Halloween can present a unique set of difficulties. In this blog, I’d like to share my personal experience of why Halloween was often hard for me.

Costumes and Cerebral Palsy

One of the most exciting aspects of Halloween is choosing and putting on a costume. However, this seemingly simple task posed more challenges than one might expect. The dexterity and fine motor skills required to put on costumes can be challenging for individuals with motor disabilities. Many years, I didn’t dress up because the effort it took to put on a costume outweighed the enjoyment I would get from wearing it. The frustration of trying to participate in the costume aspect of Halloween sometimes made me want to avoid it altogether.

The Decision Dilemma

Another challenge I faced during Halloween was the difficulty of deciding on a costume. With so many possibilities, it was overwhelming. I would often find myself torn between various ideas, unable to settle on one. Making choices can be complex for anyone, but for me, it was compounded by my cerebral palsy, which sometimes affects my ability to express my preferences clearly.

Halloween, like any other holiday, is experienced uniquely by each individual. While it’s often associated with joy and excitement, it can also bring challenges for people like me who have cerebral palsy. Despite the difficulties, I’ve come to appreciate the holiday in my own way, focusing on the aspects I can enjoy and celebrating the creativity and festivities that Halloween represents.

Communication boards are vital tools for individuals with speech and communication disabilities, like those with cerebral palsy. These devices empower users to express themselves, connect with others, and engage with the world. However, like any piece of technology, communication boards can encounter issues over time. That’s where warranties come in. In this blog, we’ll explore the pros and cons of having a yearly warranty for a communication board, drawing from personal experiences and insights.

The Pros of Having a Yearly Warranty

1. Peace of Mind: Perhaps the most significant advantage of having a yearly warranty is the peace of mind it provides. Knowing that your communication board is covered for repairs or replacements can alleviate worries about unexpected costs if something goes wrong.
2. Timely Repairs: Warranties often include provisions for prompt repairs. In the event of a malfunction, you can usually get your device fixed more quickly than if you had to navigate the repair process independently.
3. Loaner Devices: Some manufacturers, like PRC-Saltillo, offer loaner devices while your communication board is being repaired. This is a crucial benefit, as it ensures uninterrupted communication, especially for individuals who heavily rely on these devices in their daily lives.
4. Cost Savings: Over the long term, a yearly warranty can save you money. Without a warranty, you might have to cover repair costs out of pocket, which can be substantial. With a warranty, these expenses are typically covered.
5. Continued Independence: For individuals with disabilities like cerebral palsy, a communication board is a lifeline to independence. A warranty helps ensure that this independence isn’t compromised due to device issues.

The Cons of Having a Yearly Warranty

1. Additional Cost: Yearly warranties aren’t free. They add to the initial cost of the communication board. If the device rarely encounters issues, you might end up spending more on warranties than on necessary repairs.
2. Limited Duration: Yearly warranties have a set duration, typically one year. Once the warranty period expires, you’ll need to renew it or be without coverage, potentially facing high repair costs.
3. Not All Issues Covered: Warranties usually cover specific types of issues, often excluding accidental damage. If your device experiences problems that fall outside the warranty’s coverage, you may still have to pay for repairs.
4. Dependency: Relying on a warranty for repairs can create a sense of dependency. Users might not proactively seek solutions to minor issues or explore ways to maintain their devices, assuming that the warranty will always provide a safety net.
5. Manufacturer Limitations: Warranties are subject to the manufacturer’s terms and conditions, which can change over time. You may find that coverage becomes more limited or expensive as the years go by.

Navigating life with cerebral palsy can present a unique set of challenges, but the silver lining is the multitude of resources and support services available to individuals like me. These services not only help us overcome obstacles but also empower us to lead fulfilling lives and reach our full potential. Let’s dive into some of the key resources and support services that have been invaluable to me on my journey with cerebral palsy.

Early Intervention Programs: The journey often begins with early intervention programs. These programs, like the one I went through, provide crucial support during the early years of life. They offer therapies tailored to the child’s needs, focusing on areas such as physical, speech, and occupational therapy. These interventions not only aid in development but also equip families with the knowledge and tools to support their child’s growth.

Special Education Services: As children with cerebral palsy transition to school age, special education services play a pivotal role. These services create individualized education plans (IEPs) that cater to the child’s specific needs. With accommodations ranging from assistive technology to modified curriculum, special education ensures that every child can access education in a way that suits their abilities.

Therapies and Rehabilitation: Continual therapy and rehabilitation are essential components of managing cerebral palsy. Physical therapy helps improve mobility and motor skills, while speech therapy enhances communication abilities. Occupational therapy focuses on developing skills needed for daily living. These therapies work hand in hand to maximize independence and quality of life.

Assistive Technology: In today’s digital age, assistive technology is a game-changer. Communication devices, like the one I use, give a voice to those who struggle to speak. Mobility aids such as power wheelchairs enable independent movement. These technologies level the playing field, allowing individuals with cerebral palsy to express themselves and participate fully in various activities.

Support Groups and Advocacy: Connecting with others who understand the challenges of cerebral palsy can be immensely reassuring. Support groups provide a space to share experiences, seek advice, and find a sense of belonging. Additionally, advocacy organizations work tirelessly to raise awareness, promote inclusivity, and push for policy changes that benefit individuals with disabilities.

Medical Care and Specialists: Regular medical care from specialists who understand cerebral palsy is crucial. Orthopedists, neurologists, and physiatrists can offer tailored treatment plans to manage symptoms and prevent complications. Access to quality healthcare ensures the best possible outcomes.

In conclusion, the journey with cerebral palsy is not one traveled alone. A vast array of resources and support services exists to guide individuals and their families through the challenges, fostering growth, independence, and empowerment. Early intervention programs, special education services, therapies, assistive technology, support groups, advocacy, and medical care form a comprehensive network that makes a significant difference in the lives of those with cerebral palsy. By utilizing these resources, we can shape a future that celebrates our abilities and embraces our potential.

Attending concerts has been a powerful experience for me, allowing me to escape the negatives and immerse myself in the beauty of the music. I have gone to a concert twice this summer. There’s something magical about being in a crowd of like-minded individuals, all united by a shared love for music. In those moments, all the worries and troubles fade away, and I am completely present, swept away by the melodies and rhythms.

The energy and passion that fill the air during live concerts are indescribable. It’s a feeling of connection, both with the music and with the people around me. The power of live performances transcends barriers and brings people together in a way that is truly extraordinary.

I am grateful for the opportunity to witness talented musicians pour their hearts out on stage, pouring their emotions into their craft. Their dedication and talent inspire me to pursue my own passions, despite any limitations I may face.

So, to all the bands and musicians out there, thank you for sharing your gift with the world and going on tour. Your music has the power to heal, uplift, and transform lives. It provides a much-needed escape and reminds us of the beauty and joy that exists in the world.

Let’s continue to support live music and cherish the moments we have at concerts. They serve as reminders of the power of music and its ability to transcend boundaries and touch our souls. Keep spreading the magic, and I’ll keep being grateful for the escape and joy you bring into my life.

Living with severe cerebral palsy and writing a book about my experiences. While Christy Brown’s autobiography, “My Left Foot,” is widely known, there are two other remarkable authors who have made significant contributions to literature, capturing the attention of readers with their unique perspectives.

One such author is Sheila Hollins, a British psychiatrist and writer. She has written several books focused on mental health and disability, including “Learning Disability: A Life Cycle Approach” and “Mental Health in Intellectual Disabilities.” Sheila Hollins’ work dives into the complex intersection of disability and mental health, providing valuable insights and guidance for individuals and families navigating these challenges.

Another notable author is Josh Blue, a comedian and writer from the United States. Known for his sharp wit and humor, Josh has written a memoir called “The Disabled List: My Disability and the Comedy of It All.” In his book, he shares his personal experiences of living with cerebral palsy and how he uses comedy as a means of empowerment and breaking down barriers.

Both Sheila Hollins and Josh Blue have found their unique voices and shared their stories with the world, shedding light on the realities of living with cerebral palsy and challenging societal perceptions. As I continue my own writing journey, their work serves as a powerful reminder of the impact that personal stories can have in capturing people’s attention and fostering understanding and empathy.

In my own book, I strive to share the challenges, triumphs, and everyday experiences of living with severe cerebral palsy. Through my words, I hope to not only catch people’s attention but also to create a deeper understanding of the realities faced by individuals with disabilities. By providing a glimpse into my world and sharing my perspective, I aim to break down barriers, promote inclusivity, and inspire others to embrace diversity.

Writing a book about living with severe cerebral palsy requires finding the right balance of captivating storytelling and thought-provoking insights. By drawing inspiration from authors like Sheila Hollins and Josh Blue, I am encouraged to continue honing my craft and using my unique voice to make a meaningful impact. Together, let us tell our stories, challenge perceptions, and create a more inclusive world.

Challenge: Share how certain books catch your attention and what elements in the introduction make you want to read the book.

I want to shine a spotlight on two remarkable individuals who have cerebral palsy and show us that with determination and support, anything is possible. Living with cerebral palsy can present its own set of challenges, but these two individuals have defied the odds and achieved great success in their lives.

The first person I want to talk about is Maysoon Zayid, a well-known comedian, actress, and advocate. Maysoon has used her incredible sense of humor and talent to break down barriers and challenge stereotypes about people with disabilities. Despite her physical limitations, she has made a name for herself in the entertainment industry and has become a powerful voice for inclusivity and disability rights.

Another inspiring individual is Zach Anner, an author, comedian, and television host. Zach’s positive attitude and infectious humor have won the hearts of many. Despite his cerebral palsy, he has embraced life’s challenges and turned them into opportunities for personal growth and success. His determination and resilience serve as a shining example of what can be achieved when we believe in ourselves and pursue our passions.

Both Maysoon Zayid and Zach Anner have shown us that having cerebral palsy does not define who they are or limit their potential. They have used their platforms to raise awareness, inspire others, and advocate for a more inclusive world. They remind us that we are all capable of achieving our dreams, regardless of our physical abilities.

Their stories serve as a reminder that having a strong support system and access to personal assistance is crucial for individuals with cerebral palsy. Personal assistants play a vital role in helping individuals with disabilities navigate their daily lives, providing the necessary support and assistance needed to overcome challenges and pursue their goals.

The stories of Maysoon Zayid and Zach Anner are a testament to the power of resilience, determination, and support. They have shown us that living with cerebral palsy does not define us or limit our potential. By breaking down barriers, challenging stereotypes, and pursuing their passions, they have become true inspirations for us all.

Challenge: Search other famous people who have cp

I realized that a staycation can be just as fun. My family did all kinds of activities that we wouldn’t normally do.

One of my favorite days was when we went to the space center. We had to complete a mission, and it was so cool to see all the character roles and tacks everyone had. I loved learning about teamwork and all the things that we had to do in order to survive.

Another highlight of our staycation was going to Dreamscapes. It’s a visual art display made out of old stuff like VCRs and computers. The details were incredible and I couldn’t believe all the cool things they could make out of old junk. It was such a unique experience that I’ll never forget.

Overall, I’m really grateful for our staycation. It was a great opportunity to spend time with my family and try new things. I realized that you don’t have to go somewhere far away to have a fun vacation. Sometimes the best adventures are right in your own backyard.

As a person with severe cerebral palsy, I understand firsthand the importance of inclusion and accessibility. It is essential for individuals with disabilities to have equal opportunities to participate in all aspects of life. Inclusion is not just about physical access, but it also means creating an environment where individuals with disabilities can interact with others and feel included. When we are included, we can better participate in society, develop meaningful relationships, and achieve our full potential.

Accessibility is another critical aspect of inclusion. It is important to ensure that public spaces, transportation, and buildings are accessible to people with disabilities. In my case, I depend on my power chair to move around, so it is essential to have accessible pathways and ramps. Without access, people with disabilities may be isolated, unable to attend events, or participate in everyday activities. By ensuring accessibility, we can create a world that is more inclusive and welcoming to everyone.

Inclusion and accessibility are essential for people with cerebral palsy, but they also benefit society as a whole. When we include people with disabilities, we open ourselves up to new perspectives and experiences. We also promote empathy, understanding, and diversity. By making our communities more accessible, we create a world that is more equitable, inclusive, and just for all. As someone who depends on accessibility and inclusion to participate in everyday life, I can say without a doubt that these values are critical for building a better world for everyone.

Challenge: Watch out for things that may isolate people with disabilities from participating.