We have never tried to hide Joel's disabilities from him but instead have sought to help him through them while constantly encouraging improvement. To remind him continually that he cannot do certain things due to being disabled would become self-fulfilling, causing him to wake up every day knowing he is different and being unable to make any kind of effort at anything. On the other side, however, it never has seemed right to affirm him and postulate dreams that cannot happen. Filling his head with goals that are unattainable is a form of abuse that is not fair.
So we avoid either kind of extreme and instead deal with Joel realistically, pragmatically, yet with non-stop encouragement of the things he can do. For example, Joel cannot drive and we do not expect him to be able to do so. He tends to focus on one thing, being totally unaware of other things around him. He also cannot filter or organize sounds, making road noise a constant roar in his mind. Further, manipulating a steering wheel, blinkers, brakes, accelerator would be too many instruments to do at one time. Not to mention that fact that anything moving quickly overwhelms him.
Recognizing this as truth, he never asks to drive and we never say things like, "When you learn to drive, you can...." It would fill him full of false dreams on the level of someone telling me I will become a professional basketball player someday. Some things just won't happen.
Yet our knowing and reminding him of his limitations is not degrading or negative, instead we continually replace the problems with his potential. About once a week we ask him to list the things he is successful doing--playing the organ, sorting books, helping in the kitchen, choosing clothes, sharing good cheer and friendliness, and learning about actors and musicals. All these and more form a complete person and provide a sense of self-worth. While occasionally we have to gently say no to something he wants to do, we always try to find an opportunity to say yes to something else.
He mentions his disability occasionally but avoids the use of the term autistic. We are not sure why but it reminds us not to tell people he is autistic in front of him. He doesn't mind our telling people he is disabled, as long as we do so judiciously without criticism. We do not advertise this fact openly but are not embarrassed about it either. We and Joel work hard to appear "normal" but often his disability becomes obvious when carrying out tasks in public. Because of this, it often helps him for us to tell someone he is disabled and therefore requires a little more time for basic tasks. Yes, there are few it frightens, but most people are patient and understanding. Besides it is good for people to learn that not everyone is "normal." Normal sure is a funny word isn't it? Who determines normalcy? What does it really mean? Maybe Joel is normal and we are not! Sorry to digress but it is worth thinking about sometimes.
I do encourage parents to be honest with their children about abilities, limitations, weaknesses, and strengths, but to find a way to do so that is never abusive and only uplifting. This way the child retains a strong sense of self-esteem while knowing his own challenges. Find the good, minimize the bad, but avoid excessive use of impossible dreams that will not happen. Since the positive qualities of an autistic are unbounded, there is no need to dwell on the weaknesses. I believe that most autistic children and adults are well aware of the things they can't do well. It is one reason for the withdrawing of personality that often occurs.
Your job as a caregiver is to help him cope, bring out his best, and provide a sense of security in as least a restrictive environment as possible. All of this forms a young man who is comfortable in his skin for the most part and who knows he is loved by many. But how do we give him a sense of ambition and dreams without creating a false world? Let's talk more about this next time.
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