The Huffington Post published an open letter from actress Karina Ortiz to her younger brother Frankie, who has cerebral palsy. This is well worth a read, and is a good reminder that a diagnosis of cerebral palsy, or any other serious medical condition, affects the entire family. Ms. Ortiz recounts in particular how she felt as a child when bullies would mock her brother—for instance, when at eight years old he was being pushed in a stroller. Like many older siblings, she felt protective. Children will always laugh and point at people who are different—whether that difference is physical, mental or emotional. These children need to be educated so they can rise above childish insecurities.
This reminds me of one of those apocryphal Facebook stories that I have seen circulated, recently. The story goes something like this:
As the oldest sibling with a younger brother and a younger sister, my Dad sat me down one day and told me that every choice I make will be made three times. The first, when I make it. The second, when my brother sees my choice and makes the choice. And the third, when my sister sees our choices and follows along. It highlighted for me the ramifications of my decision, and stressed the need for me to a good role model for my family.
We all have this impact on those who watch us closely for instructions as to how to act. It is a simple matter of leading by example.
It is also important to remember that families who have a person with significant disabilities must take care to monitor the emotional needs of other members of the family. Particularly where younger children are involved, they may feel that they are being neglected or that the child with disabilities is somehow favored. Because of the intense need for family support, they may feel left out. They may feel conflicted by love for their sibling and jealousy over the amount of attention that sibling gets. They may feel that different behavioral standards are capricious and unfair.
Certainly, having a child with a severe disability increases stress for the whole family. However, most solutions and innovations are borne from stress. Again, it is an opportunity for personal growth. Children can become advocates, become more responsible and caring, and more understanding of the world around them.
Parents must consider the needs of all of their children—block off regular time and focus on the self-esteem of each child. Make sure that every child feels special.
Finally, parents must focus on themselves. Plan date-nights out alone. Have personal hobbies, and do things for yourselves. It’s a marathon, not a sprint. Focusing solely on your child will lead to early burnout, which can affect the family in ways that you can’t even begin to predict.
For More Information
- Parent to Parent USA (P2P): an organization that provides emotional and informational support to families of children with special needs
- CP Daily Living: Links to cerebral palsy support groups
- When a Sibling is Disabled
Photo via Pixabay