Five Life Lessons From Caring for a Child With a Disability

a woman smiling
Curated by
Kristen Sachs
Content via The Caregiver's Living Room
Source: 
The Caregiver's Living Room
Curated by
Kristen Sachs

Donna Thomson shares the following five lessons she has learned from being a parent and caregiver to her son Nicholas who has cerebral palsy.

“Over the twenty-eight years of our son Nicholas’s life, I have learned lessons about what it takes to thrive against all odds. These are five building blocks of happiness that I learned over the course of raising our children.”

a mother hugs her son who has cerebral palsy

Acceptance

It can be challenging to accept difficult realities when it comes to parenting a child with a disability. Donna admits that accepting the fact that her son would benefit from using a communication device was not easy. But, after talking to other parents, Donna found the tenacity to accept the idea that certain medical devices could enhance her son’s life.

“When it became apparent that Nicholas would never express himself verbally, a conversation with another Mom helped me reframe my thinking. 'We don’t do our own dry cleaning or make our own soap,' she said, 'so what's the matter with a computer helping Nick to speak?' After that, assistive devices became our friends, not our enemies. Nick has taught me to trade my definition of success for his.”

Rely on Support System -- Interdependence

Independence can be viewed as the ultimate goal in the life of a person with a disability. However, Donna believes that humans are meant to be interdependent, meaning that people should not be discouraged from relying on one another. Donna refers to Nicholas’s extended support system (family, paid helpers, friends, and doctors) as a united team that has one common goal, to assist Nicholas in reaching his maximum potential.

Be Impulsive and Intentional

Donna enforces the idea that it is okay to ask impulsive questions because how is a person supposed to learn something if they don’t ask?

"A wise friend told me recently that our most vital challenge in contemporary family life is to be intentional" shares Donna. “Intentional about asking our children what a good day looks like for them, intentional about asking for what we need, even intentional about being happy instead of miserable.”

a family enjoys time outside at a park

A Good Life is Possible

Devoting your time and energy to another person can be stressful. Realizing your own needs and wants is essential to your own happiness. Take a moment for yourself. Try answering this question that Donna often asks herself, "Given our realities, what is a life that we value and how can we create it?"

Stop and Listen

Donna’s last lesson could be one of grave importance for a caregiver, which is to take the time to stop and listen to the person you are caring for.  She recalls a memory of her son taking part in a communication therapy, called Special Time.

“When Nicholas was young, he did a kind of non-directive communication therapy called "Special Time." During the hour, the therapist did not speak herself, except to reflect back to Nick what she saw him do and what it might mean. It was an hour of intense intimacy and heightened listening. Special Time had many communication benefits for Nicholas, but it had benefits for me, too. I learned the value of stopping time in order to listen intently and exclusively to those I love. Even ten minutes a day of special time with a son, daughter or spouse enriches family life.”

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ParentingKids with Disabilities