The Cerebral Palsy Forum

Welcome to TheCPForum™! We are embarking on a new journey; one to connect individuals touched by cerebral palsy directly with one another. With this forum, it is our hope that parents of children with cerebral palsy can meet other parents with similar circumstances. Individuals that have cerebral palsy can more freely connect, share, and inspire us all. It is also a forum that welcomes members of the community that support our families – school administrators, health care providers, therapists, caregivers, government agents, home care service providers, and community support networks, to name a few – to connect with our families. Together, we can ask pressing questions, share our experiences, offer our support, and hopefully have a bit of fun along the way. Join TheCPForum™ today!

 
While on life's journey touched by cerebral palsy, it can be beneficial to have access to others who are experiencing, or have experienced, situations similar to your own. Connecting, sharing and supporting each other can be incredibly empowering. To some extent we are all students, as well as teachers, of life. Whether asking for advice, searching for ideas, pondering a change or soliciting guidance we benefit by the collective knowledge and support of others. And, by offering sage advice, sharing our experiences, dispersing words of encouragement, or simply offering listening we have the ability to empower others. This forum is designed to help families travel through various stages of life's journey.
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Do you suspect your child has cerebral palsy? Does your child show signs of developmental delay? As a parent that suspects his or her child may have cerebral palsy, the wait between that initial suspicion and an official diagnosis can be an emotional one. What is often a time of anxiety evolves into an empowering experience that leads to a journey of acceptance and unconditional love. As you anxiously await news, what questions do you have for others who have gone through the process of diagnosis? Or, if your family is touched by cerebral palsy, what words of comfort can you extend to parents who are awaiting diagnosis?
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2 Words of Comfort
by admin
02/11/2016 - 08:39
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Many parents find it difficult to explain their emotions and feelings at the time they receive their child’s diagnosis, and in the years that follow. That’s understandable. It’s a life-altering moment often filled with feelings of sadness, helplessness, shock, anxiety, disbelief, and confusion. But, that gives way to strength, joy, tolerance, and triumphs. Do you have thoughts to share, wisdom to offer, or support to extend to families who have recently received a diagnosis? Or, if you are a parent whose child was recently diagnosed, do you have questions for our members?
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2 My child was recently diagnosed
by admin
02/11/2016 - 08:43
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There’s an adage that knowledge is power. This is certainly a truism, but something a parent may not consider – information can be a source of comfort. When a child is diagnosed with cerebral palsy, there’s an immense amount of information parents must absorb. The first among these is to have a clear understanding of a child’s condition, which aids in coordinating care, applying for government assistance, seeking early intervention, and obtaining support. Do you have learnings to share, or questions for our members?
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There is evidence that children with cerebral palsy far exceed initial assessments. Children that physicians have once said would never walk have not only put one foot in front of the other, they’ve climbed mountains. Others that were never expected to communicate have spoken, written books, and inspired others with words of wisdom. Even in severe forms of cerebral palsy a child’s potential can materialize making possible the aspirations that parents have for their child’s future. What have you tried? What has worked and what hasn’t worked for you and your family?
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Transitioning a child into adulthood begins in the early stages of growth and development. Children with cerebral palsy advance into adulthood as many children do – developing confidence, learning to learn, preparing for independent living, and conquering life skills – but likely with a few more hurdles. Many of our children are seeking ways to be mobile and to communicate. As parents, we wonder if our child will have the confidence to interact, skill sets to advance a career, and the ability to live as independently as possible. Around the age of 16, special education programs work within a transition plan to evaluate and train our young adults for adulthood. The process requires our children to take the reigns while we, as parents, gain the confidence to let go. What’s worked for you? What areas of the transition do you need help with?
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1 Preparing and Letting Go
by admin
06/23/2016 - 13:37
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It’s something most adults desire. A life of independence means calling your own shots to the best of your abilities. It’s about having the confidence and ability to live on your own, unencumbered. It’s about making decisions about money, employment, daily activities, and social ties. Quality of life as an adult doesn’t necessarily mean that an adult may never need assistance. With the help of social assistance, personal care aids, housing options, and a supportive social network, people with moderate to severe forms of cerebral palsy have been able to live quality, independent lives – within their family homes, outside their family homes, with assistance, or without. Are you an adult with cerebral palsy? What’s on your mind today? What would you like to accomplish next?
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There’s never a better time to begin researching what resources might be available to a family than when a child is diagnosed with a severe form of cerebral palsy. Finding the right set of supports is often what makes possible the best outcome for a child. Children with severe forms of cerebral palsy are more likely to have cognitive impairments, quadriplegia, seizures, and can be non-verbal. Also, they are more likely to need care 24/7 and require significant support services. Sadly, severe outcomes can also mean that parents have lost a child at birth or due to a health condition. Do you have an experience you would like to share? Or, a question that can help you to locate the support you need and your child deserves? Connect with other families here and share ideas. You are not alone.
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People tend to think about disability in terms of functional limitations – emotional, intellectual, physical and social. When society is educated on disability, supports are in place to equal the playing field, and legislation is in place to protect rights, disability becomes more about a person’s accommodations and modifications than it is about not being able to complete tasks in a predictable manner. Disability advocacy is about furthering equal opportunity for inclusion, accessibility and participation for the betterment of all. What supports have been most beneficial to you?
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Government assistance originated during the Great Depression at a time when vulnerable groups – seniors and individuals with a disability – needed help to just get by. Today, programs and services abound. The challenge seems to be in understanding what types of programs are available, how and when to apply, what to expect during the process, and what to do if denied. What programs and services work for you? Do you have a question, ask. Chances are, a fellow member will come to the rescue.
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1 What government programs work for you?
by admin
02/11/2016 - 08:41
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Conquering disability involves tearing down barriers while furthering equal opportunity for inclusion, accessibility and participation for all. How can we improve the level of acceptance in society? How can we improve our child’s ability to be included at school? How can we improve participation levels within our communities? What supports are needed in housing, transportation, architecture and the workforce? What barrier would you like to knock down next? Open a topic and let’s work on this, together.
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3 Finding Accessible Places
by admin
06/05/2016 - 16:50
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People with a disability or impairment often encounter activity limitations and participation restrictions during daily acts of living. Physical, cultural, societal and architectural barriers can prevent a person with a disability from enjoying situations that are readily available to the masses. Civil rights and legislation are essential tools focused on limiting, or eliminating, barriers and obstacles so every individual can thrive, function, and contribute to their fullest in daily life and within society, side-by-side. Share your thoughts and experiences on some of the hottest disability topics from ADA to IDEA, and beyond. Where do we go from here?
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1 From ADA to IDEA, are they working?
by admin
02/11/2016 - 08:37
 
A person’s education is the springboard for many things: the aptitude to perceive and function at home and in public, the capability to pursue employment or college, and the confidence to socialize. Some believe education is an important investment that a country makes in its people and for their future. For students with a disability, the ability to have a free and appropriate education may require supports and services to level the learning playing field, making the ability to learn equal amongst peers. This forum is designed to be a melting pot of ideas and experiences and support and inspiration for parents and school administrators, alike. How can we help a child achieve their highest learning potential? What’s working? What’s not?
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Is your child persisting or thriving at school? Have you ever wondered whether your child is getting the most from his or her educational environment? Or, if you are new to the special education scene, do you know the difference between an IFSP and an IEP? Has your child had an IEE yet? Will he or she need an IHP or an ITP? Sound confusing? You are not alone. Let’s chat and figure this out, together.
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Babies typically develop basic skills in the first three years of life. For children with developmental delay or cerebral palsy – whether formally diagnosed or being evaluated – early intervention is the first of many educational opportunities aimed at preventing educational and developmental setbacks. Was your child involved in an early intervention program? Do you have helpful tips for others? Or, are you considering enrolling your child and need some parental insight?
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1 Early Intervention Advice and Concerns
by admin
05/26/2016 - 09:49
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The term ‘going to school’ is fundamentally different from ‘receiving a meaningful education.’ Being educated means that a person can take what they have learned and apply it in the marketplace to support their ambitions, pursue their interests, live amongst others, and generally abide by the rules of the society in which they live. Education instills shared understanding, awareness and respect among citizens. So important it is that every person deserves an equal opportunity to learn and thrive within the educational setting. Do you feel your child is able to learn and thrive in their educational environment? What is working? What needs improvement?
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1 Special Education and Your Child
by admin
07/26/2016 - 08:01
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When a child turns 18, or graduates from high school (by age 21), the IEP ends. Ideally, children with disabilities should have a comprehensive plan in place to help them to make a smooth transition into adulthood, complete with a plan to live as independently as possible. For some, this transition will involve plans to attend college, university, trade school, vocational programs, day programs or respite facilities. Are you a parent with questions on how best to prepare your child? Or, are you a young adult who is either pondering your options or willing to share your post-secondary education experience with parents? Share your thoughts, experiences and concerns here.
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Under the law, every child in the United States is entitled to a free and appropriate education, or FAPE. Generally, parents work with various school administrators on reaching an agreement on how their child will achieve a meaningful education. From time-to-time, there may be disagreement among parties involved on how best to achieve that goal. The dispute resolution process is designed to help everyone involved reach a consensus. Have you had experience with the dispute resolution process? Do you have advice – or questions – for other parents with similar experiences? Here is an opportunity for school administrators, parents and students to share their ideas and concerns.
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Children with cerebral palsy and other disabilities may require supports and services to reach their highest learning potential. Learning ability, physical challenges, transportation issues and personal finances along with the quality of available programs – both publicly and privately – can impact your child’s education and future. Homeschooling, private tutoring and home school services are available. What works best for you? Looking back, what would you like to have done differently?
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1 Is homeschooling right for your child?
by admin
04/28/2016 - 11:22
 
Health, by its own definition, is the ability to participate – emotionally, intellectually, mentally, physically, socially, and spiritually – in life. For individuals with a disability, there are barriers or obstacles that can hinder a person’s ability to function. The key seems to be in addressing barriers that prohibit proper ability to function. To assist, there are treatments, therapies, medications and surgeries, as well as modifications, accommodations, and work-a-rounds. The focus is on discovering ways to improve function. The reward is quality of life and an overpowering sense of wellbeing. How are you able to maintain health? What opportunity are you going to embrace next? What do you need help overcoming?
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Every individual has a need to communicate. Through communication we express our needs, desires, knowledge and welfare. We share our preferences, perceptions and our feelings. We reject, refuse, decline and respond. We offer feedback and exchange information. And, during emergencies we ask for help, or indicate what’s wrong. Many individuals with cerebral palsy have oral motor dysfunction which hinders their ability to communicate. In these instances, the goal is to provide acceptable forms of augmentative and alternative communication – in good working order – that allows the individual to interact and participate with others as full communication partners. What technology do you find most beneficial?
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2 Devices and Tools for Communicating
by admin
06/05/2016 - 16:09
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The majority of individuals who have cerebral palsy experience difficulty swallowing and significant gastrointestinal symptoms in part due to impairment in their facial and neck muscles known as oral motor dysfunction. To maintain healthy nutrition levels, treatment focuses on preventing undernourishment while improving oral motor skills. Is your child on a nutrition and diet plan? Have you consulted with a speech and language pathologist or registered dietician? Does your child require a feeding tube? How do you handle lengthy feeding times? What works for your child? What concerns do you have?
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2 Cooking with a Child with Special Needs
by admin
02/17/2016 - 12:02
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Fitness and health impact a person’s overall wellbeing. The decision to be fit is a personal choice that can have long-term ramifications. For individuals with cerebral palsy, exercise and fitness may require accommodation, modification, inclusion or therapeutic supports. Participating in organized group activity or maintaining a solitary exercise regimen brings feelings of being fit and the pleasure of recreation. The failure to adhere to a fitness regimen could exacerbate a person’s disability when secondary health conditions develop or premature aging occurs. How do you maintain fitness and health? What type of fitness routine do you find rewarding? Challenging? What are you going to try next?
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1 Yoga for Children with Special Needs
by admin
04/26/2016 - 15:38
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Respiratory health depends on the ability to breath properly, cough correctly, swallow appropriately, and digest efficiently which is not always easy if the musculoskeletal system isn’t cooperating. Oral motor dysfunction and digestive difficulties in individuals with cerebral palsy can lead to aspiration, pneumonia, bronchiolitis and respiratory distress that demands immediate and proper management. How do you monitor your child’s respiratory health or prevent infections? Has your experience with respiratory supports, speech therapy, prophylactic antibiotics or gastrostomy intervention been helpful?
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Not all individuals with cerebral palsy experience seizures, but for those that do medications and treatments are sought to limit the frequency and severity. During a seizure, individuals may lose consciousness, convulse or have difficulty breathing. After a seizure they may be exhausted, weak, and emotionally affected. Seizures are random, night and day. What treatments have you tried, and what treatments have you found effective? How do you monitor seizure activity at night? What measures are in place during school?
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1 Cerebral Palsy and Seizures
by admin
06/01/2016 - 08:17
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Surgical intervention is not a procedure to be taken lightly, nor is it appropriate for every person in every situation. Surgery can provide comfort, relief from pain, greater ambulation, improved appearance, and higher levels of function when appropriate and successful. It is not unusual for individuals with cerebral palsy to have surgery on their upper extremities (spine, shoulder, arms and wrists) or lower extremities (hips, legs, ankles or feet), depending on treatment goals. Surgery can also improve hearing, supplement digestion and correct vision. What type of surgery did your child, or you, have? Did you experience complications? Would you do it again? If your child is scheduled for surgery, what would you like to ask other parents?
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Treating cerebral palsy is almost as complex as the condition is, and there’s no cookie-cutter approach because each individual is affected differently. Physical impairment can be managed with a wide range of treatments and therapies. Although there is no universal protocol developed for all cases, a person’s form of cerebral palsy, extent of impairment, and severity level help to determine their care. This forum is a sounding board for parents of a child with cerebral palsy and individuals that have cerebral palsy to discuss experiences with – or curiosity about – treatment options. What worked? What didn’t?
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2 Aqua Therapy
by admin
08/22/2016 - 06:32
 
It is uncovered in the simplest of actions and the grandest of gestures; inspiration abounds. If we look closely it can be found in a few words, tall accomplishments and simple kindness. It can be found before feats, during a performance and after words of encouragement. Inspiration rejuvenates the mind and empowers the soul. With inspiration we find presence, renewed vitality, worth, pride, joy, laughter and even tears. What inspires you? Who influenced you? Share your truly amazing stories.
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1 Inspirational Stories
by admin
08/09/2016 - 17:48
 
Let’s face it, life is more fulfilling when we are happy and pursuing our interests. It’s more meaningful when we are with those we love and care about. This forum is for everyone that is attempting to pursue their dreams, find their purpose, overcome their hurdles and intent on enjoying the journey. What interests you?
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When the needs of your child become emotionally or physically complex, there are a surprising number of individuals who are willing and able to provide assistance. For some, a housecleaning service and a weekly visit from the traveling nurse may be sufficient while others may require in-home, round-the-clock nursing care. For adults, certain forms of assistance can serve as a lifeline towards independence, whether helping with personal care, providing transportation, or offering companionship. What type of assistance have you found most helpful?
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1 Looking for Help for a Child with CP?
by admin
02/17/2016 - 11:53
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Productive and gainful employment is a fundamental human right, yet individuals with disabilities are far more likely to be unemployed than their able-bodied counterparts. When employed, workers with disabilities are more likely to be underpaid. It’s a maddening situation when skills and abilities go unappreciated by potential employers. What do you believe prevents individuals with disabilities from becoming gainfully employed and fairly compensated? Are the obstacles on the path to gainful employment fixable? Is enough being done to eradicate the employment gap? Share your experiences and suggestions here.
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Being able to participate in the kinds of activities that you want to, when you want to, is something that can only happen if you have a chance to explore hobbies, activities and interests. The benefits of developing interests and participating in activities are far-reaching, including social interaction, mental health, self-actualization, and a sense of accomplishment, enjoyment and belonging. What do you do for fun?
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2 Family Activities
by admin
09/18/2016 - 09:14
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It is the intent of universal design standards and accessible housing advocates to build and modify architectural structures that provide barrier-free accessibility for any individual, with or without disability. Not only do people with disabilities have a functional need to live in a space unencumbered by obstruction or dysfunction, but the elderly deserve to age in place. Housing and home modifications are hot topics to families that have a member with a disability. Are you content with your housing arrangement? Is your home accessible? Is accessible housing affordable? Available? Share your opinions and advice here.
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1 Modifying Your Home
by admin
05/13/2016 - 17:04
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Motor skills are often impaired to varying degrees in individuals who have cerebral palsy. The benefits of being as independently mobile as possible are far reaching, from muscle strength and dexterity to quality of life and mental wellbeing. Children with motor dysfunction greatly benefit by early interventions and therapies and adults are encouraged to maintain health and fitness. In the process of managing orthopedic health, there are many questions and concerns about treatments, therapies, motion and gait analysis, orthotics, medications and surgery. This is a forum to share your questions and concerns; your experience and success.
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1 Does your child wear AFOs?
by admin
05/17/2016 - 15:04
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By our very nature we are social creatures who value human interaction, acceptance and support. Friends and family are among our closest confidants and trusted allies. The ability to develop socially requires self-esteem, the ability to communicate, and opportunity. This forum is designed to discuss ways in which persons with cerebral palsy can promote and engage in activities with others, network, maintain working relationships, form supportive friendship circles, date, marry and parent.
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4 Pokemon GO!
by admin
07/12/2016 - 13:25
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There was a day when participating in competitive sports and extracurricular athletic activities were inconceivable for individuals with special needs. Thankfully, those days are over. Individuals with cerebral palsy are competing in triathlons, scaling mountain peaks, competing in the Paralympics and joining local gyms. Nowadays, for every form of play and recreation, there is a modified version that makes participation and inclusion possible. Whether participating in organized sports or solitary endeavors, the key lies in developing interest levels, ascertaining abilities, identifying adaptive approaches, and modifying a process, or two. At times, a little creativity is all that’s required. What do you like to participate in? How does it make you feel?
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1 Staying Active
by admin
05/13/2016 - 17:21
 
Not a day goes by without a story in the news that can inspire or enhance the lives of our families touched by cerebral palsy. Many of our CP Miracles and CP VIP’s have announcements to make and events to share. For example, Dan Keplinger likely has an upcoming art fair, John Quinn has a motivational speaking tour, Josh Blue’s comedy routine may be coming to a comedy house near you, and Abbey Curran’s “Miss You Can Do It!” pageant date may be announced. This forum is to share the news, views, research and developments that impact the lives of our CP families and friends.
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The birth of a child represents a new journey that parents are eager to embrace. Some journeys, however, can lead us in directions we never imagined. When a parent receives their child’s diagnosis of cerebral palsy, a parent’s vision of the future changes, and they learn to cope with circumstances they were unprepared for. The journey has its fair share of challenges and tough moments. But, it also has a basketful of rewards and accomplishments. The more parents learn about cerebral palsy – and make connections with others – they learn the road they’re traveling offers tremendous joy, personal fulfillment, and soulful purpose. This forum is for helping parents to connect and share.
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1 Handling Poor Behavior
by admin
07/19/2016 - 12:00
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1 Deciding on Child Care
by admin
04/03/2016 - 12:15
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1 Handling Grief
by admin
06/01/2016 - 12:50
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1 Parenting Advice
by admin
07/09/2016 - 09:56
 
A common bond between mothers is the fact that we all have stories about pregnancy and childbirth. For most, the experience is quite joyous, but what about those raging hormones? How severe was morning sickness? How did pregnancy affect your relationships? How come nobody told you about the flatulence or episiotomies? Looking back, what would you have done differently? Would you have handled your doctor’s visits differently? How would you better prepare for delivery or complications? This forum is for open dialogue between parents – what went right, and what we wish we had known in advance.
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1 Morning Sickness
by admin
07/09/2016 - 10:12
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1 Preparing a Hospital Bag
by admin
07/19/2016 - 11:25
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