Q:My concern is for the family of my grandson, who let their lives revolve around the him and have little or no life outside of caring for the him, managing his therapy sessions, researching the internet. He whines and screams until he gets attention, then stops. When he is not the center of attention, he starts the carrying on and stops when the focus goes back to him. The parents clearly find it easiest to give in. Now I worry for the marriage, with an aggressive, angry child in the house. I can't help but believe that the parents would benefit from some sessions with a family therapist, familiar with Autism. When they say how hard life is, I suggest getting professional help to learn to cope, and they always say, “You don’t understand, we have an autistic child.” They consult every ‘expert’ they can find, trying new diets, play routines, therapies but they don’t think they need help for themselves to learn to make a life with a special-needs child that includes a life for an adult couple. The marriage is clearly strained and I am so worried about a child who dictates everything that goes on in their home. A few words from you, please?
Your concern is really threefold: what is the best way to deal with a child with autism and other disabilities? How can parents care for their disabled child and care for themselves? And finally, how do we deal with our adult children who we fear might be going down a destructive path?
As far as services available for children, there are many were ranging from special schools to intensive outpatient therapy and in-home therapies depending on the severity of the child. And there are many misunderstandings about autism and its cause which leads many parents to devote their time and resources to treatments that don't work. For example, there is some anecdotal evidence about diets, chelation and nutritional supplements, but no solid evidence that they work. Many parents have stopped giving their children vaccines because of the misunderstanding that they contribute to autism. A dangerous choice based more on anxiety than evidence. I will be joined by an expert during the live webchat on Tuesday who will address these issues in more detail.
From your brief description of what's happening, it does sound like one of the treatments needed is a clear and consistent behavior therapy program that would benefit both your grandson and the parents. And there are also programs to help parents more directly. The good-looking foundation in South Jersey provides respite for families while their children are cared for (http://www.goodlookingfoundation.org/)
But as you imply in your letter, parents need to be willing to care for themselves in order to take advantage of these programs. And anyone who has raised the child with a disability knows the tremendous sense of guilt and responsibility in the face of this daunting task of not just helping a child but protecting them from adversity. Most parents I have dealt with have said things like: "I don't have time to think of myself, my child's needs are far more important than mine." What these parents don't understand is that when they are depleted physically, emotionally and spiritually, they are impaired. Their decision-making is not good nor is their ability to nurture. The Buddha used the phrase "compassion for self and others". There is a reason why compassion for self comes before others.
And finally, how do you deal with adult children you are concerned about. Briefly, we do it the same way we deal with this economic downturn. We do whatever we can in whatever small ways we can and then we pray for the faith that our economy will return to sanity and stability. Share your concern with your children, offer to help in any way you can. And then pray that they will return to enough stability so that they can care for themselves. It has been said that the most difficult part of loving someone is dealing with your helplessness in the face of a loved one's suffering.