It's not unusual for families supporting multiple children with disabilities to need to look to the community for opportunities to have the help that they need.
These opportunities can help parents create and maintain an environment to provide strong outcomes for the individual with the disability. Being a parent of a child living with a disability is a long difficult road, but what happens to a family that is raising more than one child with disabilities?
The truth is, the more people with disabilities in a home, the more support they will require. This means that supporting the needs of multiple children with disabilities can require additional support for both the children and caregivers throughout their lifetime. The need for additional support is universal. Often families need to look outside of their immediate circle to the community for support for both themselves and the children in their care.
Navigating medical, school and community systems, all while having to meet the needs of multiple children with disabilities, is a
very daunting task. An easy example for us to think of is getting ready for school in the morning. By the time a child is around eight years old, the average parent should be able to delegate some of the tasks to the student to complete each morning, such as picking the granola bar and drink they want in their snack, or putting on their own clothing. However, a child with disabilities, by and large, takes longer to learn these independent skills, and may require verbal and/or physical prompts in order to get ready for school. This requires more parental supervision, and for some children, that higher level of supervision may not change over time.
Teaching life skills, medication management, and an understanding of their disability appropriate to their developmental ability can help the child learn how to ask for his or her needs and accommodations to make a task more achievable. These skills are the foundation needed to teach the child or youth what they need to do to accomplish their life goals. A life skill often overlooked is the ability to go to and participate in dental cleanings. Simple procedures like a preventative tooth cleaning may require sedation or complete anesthesia, making it a procedure that requires much more planning, cost, and risk. These extra steps can make planning for routine care much more challenging.
WALK OF FAME: The Szymanek family enjoying a stroll on Disney's Hollywood Boulevard; (left to right) Connor, Michael, Tara, Garett, Sophia and Johanna.