The Symbiosis of Disability

[1] Navigating the challenges along life's road is hard work for everyone. Nevertheless, a person with a physical disability may face additional obstacles that increase the difficulty of overcoming life's challenges. A person whose disability is not physical sometimes must navigate an especially demanding road because he or she must also overcome prejudice associated with the disability. She or he may even have to prove a cognitive disorder, for example, is a disability. Trying to convince people who have little or no direct experience with disabilities that caring for a child with a cognitive disorder can be as difficult as if you had the disability yourself is often an exercise in futility. You find yourself repeating often-heard criticisms as a way of motivating yourself: "well, I guess this is really not as hard as I think it is," or, "I'm just not trying hard enough," or "I need to manage my time better." However, one day you inevitably meet someone else whose situation is similar to your own. You trade war stories, exchange information, give each other tips, and have the realization that the challenges you have been facing are real, shared by others, and extremely demanding both emotionally and physically.[2] Having and caring for a child with a disability affects one's life in many ways. I remember reading a story about the actress Jenny McCarthy whose husband abandoned her and his child after learning that the child had been diagnosed with autism. While I do not agree with his response, I can sympathize with the fear that must have driven him to his extreme decision. When I learned my oldest son had Asperger's syndrome, an autism spectrum disorder, I felt overcome by despair. A sudden turn had appeared in my life's road that I never anticipated, and I feared I would never find my way back to the path I had envisioned myself traveling. First, I felt as if I had failed as a parent. We all want our children to have better lives than our own, and I believed at the time that I had somehow sentenced him to an unnecessarily harsh life. I wondered if he would have any kind of a life at all. Would he ever be independent? How would other children treat him? Would he ever find someone to love? Once the fear subsides, you accept the challenge and try to do your best.[3] For me, perhaps the greatest challenge was managing two mutually exclusive situations that require a lot of my time. The demands of a child that needed constant supervision to help him control and manage debilitating anxieties were always conflicting with the demands of teaching and research. Children with Asperger's syndrome also do not learn social cues and rules by observing social interaction. In other words, they do not learn how to manage social situations by participating in them, so a parent must act as a referee always accompanying the child to help him or her navigate and learn social interactions. For example, I would constantly have to remind my son to look at the eyes of the person to whom he is talking, or teach him how to interpret facial expressions and take the proper action, or how to listen for cues in a conversation to know when it is proper to respond.[4] Essentially, I had to form a symbiotic relationship with him to find ways to help him learn what other people unconsciously learn. I found I had to form theories about things, such as humor and behavior, as way of helping him internalize and understand why one response is inappropriate in one situation but perfectly fine in another. I found that many Asperger's children first understand things intellectually, and theorizing about situations helps them eventually understand those situations on an emotional level as well. This is backwards from the way most people learn about these types of things. Nevertheless, just because it is backwards does not mean it is necessarily defective. It goes against the established social structure of transmitting certain types of knowledge; it often makes my son seem socially odd; and it makes interactions with him harder for other people. …