A month ago the headlines were filled with the Centers for Disease Control report that 1 in 68 children were identified with Autism Spectrum Disorder (ASD). The various disorders that comprise ASD are characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors, among other things.
Any parent knows the indescribable work, energy and attention required to parent a typical child, but many are unaware of the extra challenges parents of children with this (and other disabilities) face. On a grocery trip with my 3 year old having a screaming tantrum in the shopping cart, I was aware of two very different responses from others: a very obvious avoidance of eye contact as we passed or looks of disgust and annoyance. One woman, however, smiled warmly at me, made a few jokes and tried to distract my son. Driving home, I thought of parents for whom this is part of their everyday life. I wondered how often they’ve encountered compassion and kindness versus indifference, annoyance or worse. I recalled conversations I’ve had with parents about the challenges of trying to understand and meet their child’s unique needs in a world that can be harsh and judgmental.
“It is HARD”.
Raising a child with ASD requires riding an intense rollercoaster of emotions, from the constant fear of danger for a child who tends to run off, is unresponsive to her name being called, or doesn’t understand safety precautions; to recurring periods of grief over the loss of certain hopes and dreams for their child; to helplessness in the presence of the child hurting himself or another; to worry about the child’s future; to pure joy for simple things that other parents take for granted.
It’s common for couples to spend so much time focusing on their child’s disability that they lose sight of themselves and their relationship. And amidst the demands of meeting their child’s needs, it’s often not until they are so maxed out that they consider their own needs. Financially, there are increased costs and stress. Many parents of children on the Autism spectrum find it hard to participate in activities with friends with typical children, as certain activities trigger reactive behaviors in their children. They have to seek out special activities to enjoy with their child such as the Sensory Friendly Movie, now offered by Middletown’s Westown Movies and Autism Delaware one Saturday morning each month. (The next will take place May 17th).
Support and self-care are crucial but parents of children with ASD or any other disability face the added challenges of how to take time for themselves. Some suggestions for parental self care:
Create times for yourself, your partner and your other children that is not focused on Autism.
Direct close friends and relatives to resources to learn about ASD and allow them ample opportunities to learn about your child. The better they know her, the more comfortable you’ll be with counting on them to help out.
Utilize existing resources for support. Join Facebook groups or online forums. Activities and programs designed for children with ASD or other disabilities, while in place for the children, are also opportunities to bring parents together. These connections often evolve into a larger support network where parents know their child can have play dates without the added worry about him being seen as a "problem”.
Find at least one enjoyable activity: listening to music, gardening, seeing a therapist, taking a walk, reading a book, attending religious services, yoga, sleeping in, whatever you like. Build it into your day or week.
For more information visit www.autismspeaks.org or locally, Autism Delaware and the Delaware Autism Program are invaluable resources.