The Reactions of Family, Friends, and Strangers
The reaction of other people to our special children can often be enough to make us want to pull our hair out. Family and friends sometimes say things out of ignorance.
When I was visiting my step-father a few years ago, Cameron was running around outside. He would run through my dad’s house by one door, and run out another door. He had not been to this house very much and was not used to it or any rules that may come with being there. He was simply having some harmless fun at a different place.
In a stern voice, my dad said, “He’d better do some changing, or he’s going to have some real problems in life.” This was before his diagnosis, before we knew why Cameron is so hyper and unpredictable in strange situations. My instincts, however, were right on. I told my dad that Cameron wasn’t used to his place and that he was just having fun exploring a new environment. I tried to calm Cameron and to get him to slow down, but he was really hyped up. I was finally able to reach a compromise and got him to run only around the outside of the house. The attitude I was getting from my dad soon made us leave.
When Cameron was later diagnosed, my dad showed very little interest in what that meant. He had almost nothing to say, asked no questions, and did not seem open to a discussion. I rationalized that in my own mind as him having come from a different time, when little to nothing was known about such conditions.
Ironically, since that time, my dad has gotten a new girlfriend, whose grandchild has Asperger’s Syndrome. All of a sudden, he’s very interested in getting to know all about Cameron. I have to wonder if his sudden interest is generated just to impress her.
My brother and his wife seem to express doubt about Cameron’s diagnosis. They seem to view him as being spoiled. I have explained to them that he has had four different evaluations. They all come out the same. It is Asperger’s Syndrome. My brother replies that, “You can SEE when someone has Autism. They don’t look NORMAL.” I tell him that all Autism does not look the same. There are varying degrees of Autism. He is obviously doubtful.
They have come for only a couple of visits. Their children grab Cameron’s toys and throw them everywhere. When Cameron freaks out, the parents do a dramatic sigh and say something like, “Cameron’s freaking out again.” I reply that he is reacting like that because they are moving everything from its designated spot, and that he’s afraid that they will break his toys or leave with them.
Cameron used to have action figures lined up in perfect little rows all over his dresser. He knew exactly where each one was and how it stood. If one was moved, he did not react well. My brother’s boys once knocked them all off in one swipe. Cameron had the typical reaction, and the parents had their typical attitude.
My oldest sister has been the biggest source of support from that part of my family. She has made a real effort to listen to my explanations of Cameron’s condition. She has done some of her own research. She has adjusted her behavior to match Cameron’s needs. For instance, she used to grab him in a big hug and smother him in kisses as soon as she saw him. The unexpected touch sent him into a fit every time. I taught her to approach slowly and to let him initiate any physical contact. She took my advice and it has worked out well.
Most of my friends are supportive. They ask about Cameron and are really interested. It took some time for a few of them to come around. I got a lot of reactions like, “But he seems so normal. He’ll grow out of this, won’t he?” I explain that the problem with Asperger’s is that it does not look like he has a problem. He does look ordinary. But if you spend some time with him, you realize that he has a lot of challenges. As far as growing out of it, I tell them that he will make progress, and may eventually lead a somewhat normal life, but he will always have Autism.
One thing that I would change if I could is that I would make them more aware of how them laughing at him hurts me. I know that some of the things that he does are amusing; even I laugh sometimes. But there are a few things he does, like outbursts in social situations, that embarrass me and make it hurt more when they laugh.
Strangers can also be hard to deal with. They don’t know why he is acting out in public. They see him as a spoiled child and us as neglectful parents. They give us looks like, “Can’t you control your child?” This happens mostly in grocery stores. He might tell someone who is blocking the isle, “Get out of my way, old man!” I then give him a stern voice and make him apologize. I apologize to the person he has offended, but I can’t take back what he said. I simply work harder at keeping that from happening next time.
In situations that he is familiar with, he is usually well behaved. In the waiting room of our regular doctor’s office, he sits next to me and reads quietly. He still talks to strangers, no matter how I try to change this. He tells strangers his stories and almost holds them hostage in the conversation. They tolerate this and actually seem amused. This may not amuse them so much when he is about 12, rather than a cute 7 year old.
Everyone has their own perception of Cameron and his actions. No one lives it like we do. They may get a glimpse inside from time to time, but if they do not have a child like Cameron, they do not truly understand.
Ours is a challenging life, but it is also filled with blessings. I tend to be a rather meek person in most cases, but I have learned to come to bat for my child. We are our children’s biggest supporters, the ones who see into who they really are. If we do not advocate for them, who will?