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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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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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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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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