The Cerebral Palsy Forum

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?

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?

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?

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.

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.

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?

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.

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?

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.

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?

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?

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?

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?

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?

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?

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.

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?