Severe Outcomes

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.