Isolation has many causes. A parent whose child has a disability feels different to begin with. They know that their child will not be able to do things the same way as other children do.
When the child is small, interactions are easier. The parents are still able to take their child to family gatherings, birthday parties, and other activities. The child is easier to manage. But as the child grows, their behavior changes and the challenges also grow. It becomes harder for parents to maintain control. Family members can be afraid of getting hurt. They may not know what to do if a child has a meltdown.
As the child’s needs change, so do the parents. Their daily life revolves around doctor appointments and therapies for the child. Caring for a child at home requires huge demands on their time. Visits with extended family decrease. Lack of time and energy is a source of isolation for the parents.
Other family members and friends may offer the parents opinions on their child’s behavior– even if they know little about the child’s condition or diagnosis. This increases stress on the parents. It makes clear how hard it is for others to understand. Avoiding is less tense and less work. There are fewer visits with the family or friends. Isolation deepens.
Babysitters are hard to find when you have a child with disabilities. Most lack the appropriate training or are intimidated by the responsibility. This means less chance for parents to socialize.
Parents have rising expenses for the care of their child. Necessary home modifications and special toys are expensive. At times, a parent may not be able to work full time or even work at all. Their budget may limit their spending on the needs of their child and family. Extra activities and expenses are just not possible.
The struggles parents face with their children can be very stressful. And usually, they don’t want others to see how much they struggle.
It is so important as parents of children with disabilities to find time for self-care. Get professional help if you are struggling. This includes if you are struggling in your marriage. Be aware that, at times, isolation can lead to depression. Look for counselors with sliding fee scales. You can refer to the Family Support section for help.
If you are a parent of a child without disabilities, please don’t forget about us. Remember that we are still here and need your friendship and love more now than ever.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.