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So Cerebral Palsy has dealt a child a set of boundaries that he or she will never be able to transcend, right? For advocating parents, nothing could be further from the truth.

It’s true that Cerebral Palsy is a condition that does not progress, and currently there is no cure. These fixed factors, however, do not change the fact that people have innate potential that can be tapped any number of ways. Individuals with Cerebral Palsy have met enormous challenges, and achieved incredible odds because they learned how to optimize their abilities, and maximize their potential.

It’s not often that a child is born with Cerebral Palsy, and their parents can envision their child climbing a mountain, yet some do. Parents that are told their child will never walk are finding a way. And, gone are the days of non-verbal meaning non-communicative.

More so than ever, there are ways to accommodate, modify and adapt in order to participate in hobbies, interests, activities, work, recreation and conversations. Occupational therapists help children and adults find workarounds to achieve their goals. Speech and Language Pathologists are helping non-verbal individuals find the means to communicate. Laws and regulations are ensuring accessibility, and inclusion isn’t just a far-off dream, it’s assumed to be a human right. And, when someone tells a child they “can’t,” parents are putting on their advocacy hat.

Families aren’t just meeting their child’s basic care needs they are looking for ways to assist their child in pursuing interests, socializing with others, and mastering basic living skills that will eventually lead to greater independence and accomplishment which are corner stones to quality of life. There are opportunities to seize, interests to pursue, and interventions that help, sometimes with the help of advocacy.

This isn’t to insinuate that there aren’t some severe forms of Cerebral Palsy that might cause profound limitations, or that every child with Cerebral Palsy will one day walk or talk. On the contrary, it is about finding self-actualization, building relationships, building self-esteem, finding workarounds, achieving, accomplishing, gaining the respect of others, finding meaning, balance, peace and harmony.

This stage is focused on expanding horizons, seizing the day, embracing the moment, daring to dream, and maximizing potential – defined uniquely for all.

About this stage of the journey

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MAXIMIZE

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.

Helpful questions for this stage of the journey

The routine is set. Basic needs are met. Parents are acclimated to their child’s condition, abilities, and care plan. Now it’s time to dig deeper to take advantage of the potential as parents, and the child’s potential to thrive in the all ways possible. It’s all about making the situation easier by taking advantage of available opportunities, seeking solutions for the items that would make life easier, better. It’s about empowerment and getting the mojo back. Asking for help, and embrace opportunities. Avoid the feeling of having to perform all of these steps to perfection all at once, as this is too heavy of a burden to bare. Instead, when a moment presents, tackle an item on the list knowing every step forward is a wonderful accomplishment as a parent and for a child’s future success. Tackle only the items as you can, when you can. Then, step back and say, “We did it!” It’s a wonderful feeling.

Helpful questions:

  • Am I able to manage the emergent health conditions that are most likely to be life-threatening? Are there resources that would help me feel more confident in doing so that I should consult with?
  • Am I receiving all the government benefits that are available?
  • Have I reached out towards all the community support that would enhance my ability to parent and my child’s ability to grow and thrive?
  • Are there any opportunities to offset the financial burdens that occur when managing a chronic health condition? Are there opportunities I haven’t tapped into to save money on nutrition, health insurance, energy assistance, and housing options?
  • Have I secured my family’s financial future? Have I planned for all of life’s contingencies if I become incapacitated or have an accident who will care for my child when I’m hospitalized or I pass? Are we prepared?
  • Have I tapped into the resources that make it easier to care for my child – home modifications, vehicle modifications, mobility devices, communication devices, feeding options, pain management, seizure control, and more?
  • Am I keeping an eye out for research findings, clinical trials, bio-medical discoveries that may apply to my child’s well-being? Have I challenged the doctors to evaluate my child for a chance to improve his or her quality of life – eye tracking, gait and motion analysis, cord blood, brain cell rejuvenation? Suit therapy?
  • Am I preparing my child to be an independent, self-sufficient, self-supporting adult? Or, at least to the largest extent possible?
  • With all this hard work, have we stopped to ‘smell the roses?’ Are we developing hobbies, activities and interests? Socializing with others? Participating in sport, health and fitness activities? Forming a sense of accomplishment? Having fun and creating great memories?