Tuesday, September 21, 2010

Latest on Sean

Oh, Sean, Sean, Sean. You know, the first week of Kindergarten Sean seemed to be having such a bad time that I felt really sorry for him. Ached for him, in fact. This week, I realize, I really should feel sorry for his teacher, and I do. She is such a sweet and gentle young lady. I'm sure that she is used to kids who are smart, rambunctious, shy, not shy, who color outside the lines, who need extra help and who shove glue sticks up their noses. I wonder if she's ever taught a kid who gazes down haughtily from a lofty intellectual perch and occasionally graces the common folk with his presence. Such children think themselves above the resultant indignities of things like circle time, story time, the coloring of bears, and being forced to wash one's hands when certainly they are not dirty. These children cannot be expected to wear pants which have waistbands that may cover any part of the picture of Thomas the Tank Engine on one's shirt.
His teacher is at a loss as to how to deal with Sean when he is refusing to comply with a requirement. She wants him to wash his hands and instead of just doing it, he doesn't see why he should. She insists, and so he responds by laying down on the floor in a prone position, hoping to stay there until everyone around him forgets that he was supposed to wash his hands. At school, this cannot be tolerated, and I understand that. He's not learning anything, he is being disruptive and distracting, not to mention that some of the other kids might think laying on the floor like that is a good idea. But I don't know what to tell her! She wants to have a teacher's conference so that I can tell her what to do with him, and the only answer I have is "I don't know."
Once something like this happens to him during his day, it's over for the day for him. He immediately powers down like some robot on stand by. His arms go limp, his little robot gumball lights dim, and he will not cooperate again until the proper voice command in the correct voice print is administered. The, uh, proper voice command is :"SEAN!! Get yerself up off that floor NOW!!!" Proper voice print is MY voice. When he hears it, he knows, he better move, and I mean now. I do know that he does not like it when Mr. Principal gets involved. Such terrible authority makes him feel powerless and bitter. It may work for the moment, but I would hate for him to hate school or dread it every day.
I did finally find out the other day from the Special Services office why he was turned down for special ed services last year. He had several evaluations. OT, PT, speech, cognitive, and I don't remember what all. Every one of those evals said that services were recommended in the professional opinion of the evaluator. However, every eval ALSO said Sean had "advanced intelligence," "highly developed problem solving skills," "will learn more quickly than his peers," "advanced vocabulary skills," etc. The woman in the office told me that was why he was turned down for services-because he was "too smart." I wanted to say, "Excuse me, um, have you ever heard of AUTISM???"

Wednesday, September 1, 2010

Sean's future in a trench coat

Lately I have begun to be afraid that Sean will be an exhibitionist. At least, he would be labeled that way. It isn't that he WANTS to show himself, as an exhibitionist does. It's just that he doesn't really care. I guess really he's an anti-inhibitionist. He has no appropriate sense of modesty. I say no appropriate sense, because he does have some sense of it. It just doesn't have anything to do with keeping his clothes on like it does for the rest of us.
Yesterday he got out of the bathtub, and was walking around naked. I told him to get dressed, and he informed me haughtily that he doesn't WEAR clothes in the morning. Apparently this rule applies to the rest of the day, too, because he can be found naked at just about anytime. You might say, "well, Mom, get some clothes on that kid!" Have you ever tried to put clothes on a cat? Sean doesn't want to wear clothes anymore than your cat does. He does wear them sometimes. Last week, we had relatives over for several hours and he managed to stay clothed the entire time. If I try to force him into clothes when he's refusing to be dressed, I'm fighting a losing battle. Even if I manage to wrestle them onto him, he just takes them off. He knows he won't be playing outside or going to McDonald's if he doesn't have his clothes on.
School starts next week, he will be going to kindergarten. And Mommy will prevail. He will be wearing clothes. But then my problem will be his intense pickiness with clothes. When he does wear clothes, he's a real Diva. One of his hobbies is to get out every stitch he owns and try them all on one at a time. When he's done with one thing, it is discarded, on the floor of course. And in the end he comes out wearing nothing most of the time. Of course, everything has to match perfectly. Ok, that I can understand. Where we run into trouble is when he doesn't want THAT pair of white socks, he needs the other pair of white socks and expects me to find them. Or he wants that green shirt with the dinosaur on it because it's the only shirt that matches THESE pants. So we are beginning now to enforce a condition. Night before, we are going to pick out what he is going to wear and he is NOT going to be allowed to change his mind in the morning, so he has to choose carefully.
Now, William, on the other hand, doesn't really deliberately go about in the nude. He just gets out of the shower and tends to forget to get dressed. Once he was just stepping out of the bathroom (naked), and at that moment the doorbell rang. I tried my dangedest to get to that door before him, but I didn't make it. He flung the door open and said, "Hi!" in all his manly glory. The two Jehovah's Witness ladies on the door step were most admirably unruffled, as is their way, and I told them I couldn't talk to them just then. As this was quite obviously true, they made no protest. And this, people, is the story of my life.

Friday, August 13, 2010

William's tender heart

My Mother-In-Law April gave me the idea for the title of this blog, with a comment she made on the last one. He does have a very tender little heart, and I could give you a million examples. I think I'll just put a few favorites here for now. Several years ago, he had this little electronic piano. It was purple. That's the one you gave him, April. Those little pianos always have demo music on them. You just push one button, and presto, it plays a tune. This one had maybe four or five songs on it. One was what I can only describe as wild gypsy music. Another was the Christmas song, Joy to the World. Now the really cool thing about it was that you could add beats, change the tempo, make it sound really fun. William used to make it play Joy to the World and slow the tempo down to the speed of a funeral dirge, and then he would BAWL his head off. He would cry inconsolably and say how sad it was. I used to really puzzle over what I should do about this. A friend suggested I throw the piano away. That made me really think. He does this on purpose, he slows it down so that it will sound sad and make him cry. He wanted to. I started thinking about things that I love, that also make me cry. One of my favorite movies in this world is The Color Purple, but it makes me cry and cry every time. And yet, I still watch it. Why? There are songs that make me cry. Books that make me cry. Why don't I avoid those? I think I figured out why. There are some things that get inside of you, things that elicit such a strong emotional response that it becomes impossible to deny the connection you feel to that thing. He made and recognized an emotional connection with that song in "Sad Mode". I didn't throw the piano away. I let him listen to it, I let him cry as much as he wanted.
People who assume or think that autistic people are without emotion are making a terrible and unfair mistake. Autism is probably one of the most inappropriately named ailments. Autistics may behave automatically in a certain way, but they are far from emotionless automatons. If anything, part of the struggle that they face constatly every day is to control the emotions that are so much stronger in them than they are in others.
William is very sweet. I remember once when he was about three, he was making some serious effort to fit in and succeed in his world. A group of older kids passed us on the sidewalk, and William waved to them and said "Hi!" They ignored him completely. He cried like his heart was going to break. He had been willing to put himself out there, make himself vulnerable, and he had been hurt for it. And yet, next time, he would still do it again. He was diagnosed with autism a few weeks before his third birthday, and I immediately started to learn what we needed to do and was trying to help him learn what he needed to learn. It has been a long hard srtruggle for all of us, but I have to say this. I have never seen anyone work so hard as William has done to overcome. Speech therapy, occupational therapy, behavioral therapy, and any number of other things, too. He was always game for it all, even though he can get very frustrated and upset, he ALWAYS keeps going and succeeds in the end.
I have to cut his hair for him, because he won't let anyone else touch him. If he thinks I'm sad, he is right in there comiserating with me, rubs my back, gives me hugs. My father died when William was 8 months old, but a couple of months ago, when we stood over my father's grave in the cemetery, he said, "this is so sad!" and started to cry. His loony cat starts howling every night when everyone has gone to bed, and William is the one who can quiet him. He is very compassionate (the rest of us want to throw shoes), and talks his cat down off the ledge. The strange thing is the cat doesn't howl if William is not in the house (sometimes he is known to do it during the day). We think he is doing it because he wants attention from none other than William. No point in howling if the kid isn't even home, I guess. He has several songs that make him cry. One of them is "When Somebody Loved Me" from Toy Story 2. During that scene in the movie, he wants "to be left alone." It is a very sad scene, and he knows it.
He fights with his brother. Sometimes he can be mean. But he doesn't like it when someone is sad. Nothing stops him in his tracks faster when fighting with Sean than to realize he hurt his brother's feelings. Suddenly, toys are shared, chairs given up willingly, and everyone is happy again.

Thursday, August 12, 2010


My two boys are the two most hilarious people I have ever met. They are also smarter than I am. One of them is always one step ahead of me and the other one is very difficult for me to keep up with. Four and nine, both diagnosed with autism, though the jury is still out on the little one. I think he is probably closer to the condition called Asperger's. Once when I told him he would someday be a big man like Daddy, he said, "that can't be true, for I am a mere boy." What they refer to as Little Professor Speech is definite sign of Asperger's. So many friends have told me I need to write a book, start a blog, keep a real record of the amazing comments, incredible insights, and extraordinary actions of my two little boys. I always put this stuff on facebook, and will continue to do so. My followers, if I get any! Might see some repeats. Here is the first one, from this morning. William is my nine year old, Sean is four. William goes to a special class for autistic children and he also attends summer school.
William hates to go to the bathroom before getting on the bus. He always wants to "wait 'til he gets to school." I tried a new tactic today. I said I was going to cry if he didn't go to the bathroom. He got pretty concerned and I mustered up some fake sobs. He held my face in his hands, told me not to cry. Hugged me. Squared his shoulders and looked resolved to his fate. And marched to the bathroom without another word.