Severe Outcomes

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A majority of Cerebral Palsy cases are considered mild to moderate, but when a child has a severe motor or developmental condition, it’s a life-altering experience for parents.

Children with severe forms of Cerebral Palsy are more likely to have cognitive impairments and quadriplegia. Also, they are more likely to need care 24/7 and require significant support services.

Hygiene and toileting are not only concerns in the toddler stage, but well into adulthood. Parents learn to embrace the caregiver role. When this occurs, it brings about concerns for the future: “What will happen to my child if I become incapacitated? Or, what will happen if I’m no longer able to care for my child? Future’s planning is a must, contingency planning is advised, and service supports are essential. Government assistance is available, community support and funding are advisable, and respite is a consideration.

Beyond the child’s needs, the parent takes on a larger caregiver role. Adjustment takes place as parents realize their child will need extensive day-to-day care well into adulthood. Not every family is led by two adults, so finding ways to earn an income while meeting the added expenses of raising a child with severe disabilities, may put extensive financial and emotional stress on the family’s time and budget.

It is at this time that the parents seek ways in which to adjust to emotions, accept circumstances, reinvent normalcy, remain as family unit, and adapt healthy perspectives that allow them to care for their child’s needs, as well as their own.

What are often sidelined, as a parent continually strives to meet a child’s needs, are the needs of the parent. Often, a parent may not have supportive friends and family. They may feel isolated and alone. It’s at this point that parents are aware that they too have needs, and they reach out.

In addition, there are circumstances in which a child’s severe form of Cerebral Palsy results in early death. Funeral planning and grief support are sought.

About this stage of the journey

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SUPPORT

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, and encouragement for parents.

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Helpful suggestions:

  • Ensure that you are receiving all the government benefits you and your child are entitled to.
  • Seek community support and funding to meet both you and your child’s needs.
  • Contract caregiving assistance.
  • Look into home care options.
  • Consider child care, day care, and respite options that may be appealing to you and your child.
  • Plan for your child’s care in the event of an emergency and you become incapacitated – accident, hospitalization, long-term absence, or in the unfortunate event you pass.
  • Be prepared for emergency situations – fire, tornado, choking, seizure, etc.
  • Seek solutions to troubling health conditions – oral health, skin health, nutrition and diet, pain management, vision and other conditions commonly associated with cerebral palsy.
  • Reinvent your “normal” by creating and protecting wellness, seeking ways to increase quality of life, and by gaining healthy coping perspectives for you and your child.
  • Instill a record keeping system that will allow you to organize your records for easy retrieval when applying for government benefits, take advantage of available tax credits, download caregivers on health conditions nuances, assist with financial and estate planning, and be accessible in case of emergency.
  • Accept help from others.
  • Be creative in including your child in activities, developing interests, and becoming actively involved in life-enhancing ways.
Inspirational Stories and Messages for This Stage of the Cerebral Palsy Journey
Associative Conditions

father laughing with son in wheelchair

Associative conditions

Cerebral Palsy affects muscle tone, gross and fine motor functions, balance, coordination, and posture. These conditions are mainly orthopedic in nature and are considered primary conditions of Cerebral Palsy. There are associative conditions, like seizures and intellectual impairment that are common in individuals with Cerebral Palsy. And, there are co-mitigating factors that co-exist with Cerebral Palsy, but are unrelated to it. Understanding conditions commonly associated with Cerebral Palsy will enhance your ability to manage your child’s unique health concerns.
Associative Conditions