Tuesday, September 23, 2008
This is the reason I care that people understand autism. He is often misunderstood, even by those closest to him. Some think that he repeats behaviors just to "bug" them. Some think he is "smarter than Melody thinks" and "knows what he is doing". Hum.
When he was a baby he didn't want to be held. He was content to stay in his crib. Once, when I pulled him into bed with hubby & me because it was an extra chilly night, he cried until I put him back into his crib. Through the years we have helped him to change his mind about being snuggly. Now he loves hugs and gives them with enthusiams the likes of which makes you need a chiropractor afterward. He has to hug...it is now part of his routine.
Routine is huge! When starting a new routine (moving him from a nursery class in church to a regular Primary/Sunday School class was our last huge change) I have to make sure that it is set up in such a way that will be best for Michael and me because *that* is the routine will be living for a long time. If I let him go to the bathroom or leave class even once, that is what he thinks is "normal" and wants to do each week. He has a routine for his day and even for how he treats each person.
For my mother he asks for songs that she has sung to him since he was tiny. (The Eensy Weensy Spider)
For everyone that he wants to talk to (including everyone at the store, library, post office, doctor's office....) it is to hug their arm, look at their watch for a minute if they are wearing one, shout "Look!" as he shows them his new and lost teeth, and then snap his fingers. People who know Michael know what comes next and don't walk away until he snaps. People always remember Michael once they have met him. I have often heard the comments like, "Oh! I've met *you* before! I saw you in WalMart and you talked to me then (spoken to Michael)." or "I'm always so glad when he comes in. He is such a special little guy (spoken to me)."
When he was a toddler he had no empathy. He pinched little children just to hear them cry. It was while I was disparing at this terrible stage he was going through that I realized that as a baby he'd never cried when other little babies cried around him. That type of baby empathy is a normal thing for babies to do, but Michael never did it. It was then that I *knew* that he wasn't being malicious. When he pinched he wasn't angry or frustrated or anything. He did it for the noise they made, the same as he turned on and off the light switch and looked at the lights to respond, or how he pushed the button on his toy to hear the music. It was cause and effect; nothing more, nothing less. I quit putting him in situtations where he was around little children, because he needed to break the routine. It took about 2 years, but he forgot that routine and in its place was a "learned" empathy. From our family's example (how we treated him) he learned to pat softly and when a child was sad he'd ask, "Are you ok?" He "learned" empathy.
There are myriads of examples, but let it suffice to say that raising Michael has been difficult, and would be difficult no matter what simply because it tests my patience and makes me look outside of the traditional parenting methods for answers of how to help him work through his "naughty" stages.
When you have a disabled child there is no book for "What to Expect in the First Year" or second, or third or ever. We can't know whether something is a fleeting stage or one that will last for years. Many times we don't know if our children will walk or talk or potty train or learn to read and write. Doctors and other parents of handicap children know better that to even guess. But then when people who don't understand make judgements like: "Michael knows better" or implies that he is being malicious, it makes my job just that much harder. Rather than feeling support I feel judged. I'm sure I'm not the only mother in the world that has felt that way.
Do you know what I'd love for you to do to help me show support to these mothers as they struggle throught mothering these wonderfully complex children?
Suspend giving advise.
Get to know her situation.
Learn about her child's disability.
Let her cry on your shoulder.
Let her use you as a sounding board.
Just be there for her.
Just love the child for who he or she is without taking offense at their behavior.
Don't show your frustration at her child or try to discipline them.
You'll never know how much those things mean to her!
So now, in the words of Paul Harvey, you know the rest of the story.