My wife recently told me about a mom she follows on Twitter who posted a tweet the other day asking God if her 11-year old son could please have a day off from his life with Asperger’s Syndrome, and while he was at it, could she too. It got me wondering how many other moms would love a day off; a day off from being a mom of a child with a special need. And, why not, a day off from being a mom. Parenting is a blessing, but it is stressful. I don’t think there is anyone who would disagree. We all could use some time to just be ourselves, to not have someone else dependent on us, to not be needed for a little while, to have the freedom to complete a task without being interrupted. I could go on and on but I think you get the idea.
When a family has a child with autism, there are even more unique stressors. Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities or other special needs. A child with autism may not be able to express love, making it more difficult for parents, because that moment when we see our child happy, when she gives us a hug and a kiss, is when we replenish our batteries. Children with autism may not even be able to express their basic needs, leaving parents to guess why their child is crying. Is she thirsty? Hungry? Does something hurt? When parents cannot determine their child's needs, both parent and child are left feeling frustrated. A child’s frustration leads to behavior problems and then we’ve entered a vicious cycle, adding even more stress to the parent.
Other reasons for increased stress for families with a child with autism can include feelings of isolation, fear of reactions from society, feelings of grief or inadequacy, concerns over finances and what the future holds, and the challenges of navigating through the system of services.
While unfortunately we can’t give our children a day off from their disorder, we can provide them with an environment where they can feel a sense of belonging, understanding and acceptance by, for example, attending events for children with autism and their families, such as organized play-dates, parents support groups, parent trainings, conferences, etc. These events are not only good for the child, but they are a wonderful experience for parents. It provides comfort to know that you are not the only one experiencing a particularly stressful situation. In addition, parents can get the most useful advice from others facing similar challenges and using similar services and supports.
Don’t isolate yourself, get informed, learn the system, and don’t forget to take care of yourself. Yes, first.
Coming up: “Stress Management.” Don’t miss it.
Daniel Adatto, BCBA