Saturday, June 22, 2013

Good Bye Buster Dear


asleep with Buster

Gwen excelling at her new job

William has a difficult time with emotion. He laughs when he should have shown concern, he cries during a happy song because something about it strikes him as sad, he doesn't like hugs, loves vacuum cleaners and feels sorry for them if they are broken but often feels nothing when his younger brother is crying about something. People make the mistake of thinking that autistic people have no emotions, and if not that, then they think they just don't understand things well enough to emote over them or that their reactions are hay-wired. This past Saturday, my son's 11 year old cat died very suddenly of an embolism. The friend he'd had by his side since he was a baby, who slept with him, who grew up with him, who loved him unconditionally and never had a judgmental thought about him, who never thought of him as "The Weird Kid," who followed him around the house meowing, the friend who was the one and only warm body who was allowed to give and take affection from him, gone. I had to tell him that his cat had died. Anyone who thinks that autistic people have no emotion, that they don't know how to love, should have been there for this and it would have been something they would have never forgotten. It would have been an attitude adjusting, life changing experience, as it was for me. After the words, "Buster died," came out of my mouth, I watched his expression turn to devastation and despair, I saw him shatter into a million pieces. I felt like doing it myself. It was probably one of the worst moments of my life. He does allow me to touch him, I did put my arms around him, but I knew it wasn't what he wanted. His greatest comfort was the one he couldn't have, because his greatest comfort was the one he mourned.

We gave him some closure, which I think is a very small comfort. He looked at Buster and petted him one last time. He helped with the burial and we all said something about Buster. He knew Buster was gone. Permanence has always been a difficult concept for him, and over the next days he asked me over and over if Buster was really gone, was he really not coming back, had we buried him in the yard? Right before we buried Buster, he said something to me that I will never forget. "Mom, I don't have any friends anymore." I had known this was true, but I didn't know he knew it. I was guilty myself of something I'd resented in other people. I'd thought he didn't understand and that he didn't care. He has kids at school that he knows, yes, that he interacted with. But he seems to feel no attachment to any of them and it has always been that way. The cat was the one truly safe 'person' he'd known, and that 'person' had adored him and wanted him, had never been mad at him or rejected him. The next few days, he cried off and on. He also talked over old times about Buster, laughed over some of his memories and reminisced. He was dealing with it a lot better than I was.

Within a day or so he was lamenting that he was "no longer a pet owner." We do have other animals, but he has an aversion to dogs (I have 2) and our other cat is not affectionate at all and bites. Two days after Buster died, we got a new kitten. We have two boys and William happily agreed to share the kitten. He even let his brother Sean pick the one he wanted and Sean picked the kitten's name, too. He was called Ben 10, Sean's favorite cartoon character. That night I took a good look at Ben and realized, that contrary to what we had been told, Ben was a Gwen. Gwen is Ben 10's cousin, so Sean made a quick name change and all was well. Gwen is channeling Buster, I think. She easily chose William as her person. She sleeps with him, she follows him around meowing (to his great delight) and she cries when he leaves her alone. She likes all of us, but there's little doubt-she got a message from Buster, telling her to treat that one special.

Saturday, March 30, 2013

The Zombie Apocalypse

       I had an experience the other day that I will have to repeat sometime after Easter break, though I don't look forward to it. I was standing, with both of my boys, in a place that I had really hoped never to see again. But next year, William is headed for the seventh grade and has to be registered. I was standing in the halls of a Junior High School. I came at the wrong time and all the people who could have helped me register him were in a meeting. I will have to go back. We were just getting ready to leave when the last bell of the day rang, releasing the darlings for spring break.

Friday, June 29, 2012

A Movie That Made Me Think About Bullies

I'm watching a movie I've never seen before. It's called Artificial Intelligence. It's about a futuristic civilization that has robots as part of the community. Mostly, I think they're workers. But they decided to make child robots that could love. The first experimental model went to a couple whose son, Martin, was in a coma and unlikely to recover. When they get their child robot, Mom is unsure, but the kid grows on her. They decide to keep him, which involves completing his programming so that he will bond with them, love them only, forever. I'm not sure what he's supposed to do someday when they die. They are quite delighted with him and begin settling in.
Just then, their own son wakes up from his coma. I'm at that part of the movie right now, and I have no idea which way they're going to go. Right at the moment, I don't like what I'm seeing, and I'll tell you why. David, the robot child, is so much like William that it's difficult for me to watch this movie. He's very curious about everything, but understands little. He mimicks their movements-he doesn't eat, but watches them while they eat and pretends he is eating and drinking too. He is extremely gullible and believes everything he is told. Haley Joel Osmont played David, and is in the top picture here. My William is the other picture. They even look alike, which didn't help.
Everything changes for David when Demon Child Martin comes home. Martin, having the true nature of a bully, immediately begins zeroing in on David's weaknesses. His curiosity becomes a weakness. His programmed love for his parents becomes a weakness when Martin tricks him into doing things that are wrong, telling him his parents will love him if he does these things. Martin makes David eat, knowing it will harm him. Martin tells David to sneak up on Mommy in the middle of the night and cut off a lock of her hair, then she will love him. Mommy and Daddy wake up and mistakenly believe that David was going to hurt Mommy with the scissors. Martin's equally bullying friends come over and test out the possibilities of David's natural defense systems, by purposely cutting him. As his gullibility does not allow him to see Martin for what he really is, he turns to his brother for protection from the other boys. David and Martin fall into the pool and Martin almost drowns. David gets the blame.
Parents or educators of autistic children won't need to wonder for very long why these things are bothering me. Autistic children are often victimized in the same ways. I mean, the exact same ways. I have heard more than one story of "normal" kids doing things to harm special needs children who were unable to feel pain. Many autistic kids have problems processing pain. They can get hysterical over a hang nail but something that should usually cause severe pain, like a bad cut or a burn might go unnoticed. I heard a story of an autistic boy who was found with hundreds of cigarette burns all over his body because his "friends" were fascinated with his inability to feel pain. Thinking that they were his friends, he let them do it. We're all taught that our real friends will never hurt us, right? He thought they were his friends and so he let them do it.
Bullies often coerce innocent special needs children, even adults, into doing their bidding, doing ridiculous things in public, things that make fools of them, things that will get them into trouble-and of course, afterward, these bullies will know nothing about any of it. I know we aren't really talking about robots here. I'll never know how the movie ended. I decided to quit when, after the pool incident, Mommy takes David out into the woods and leaves him there. The parents couldn't see their "real" son for what he was. The boys had a toy robotic teddy bear that saw what Martin was doing and he tried to help David. Pretty bad when Teddy Ruxpin is smarter and more compassionate than Mom and Dad.
Do parents really not teach their kids how they should treat special needs people? My perspective is unique. My oldest child is special needs. I was teaching the world how to treat him. I wasn't wondering how to raise my normal child. I was wondering how to protect my special one. Then we have a second child, and he is raised from birth, realizing that his brother is different and learning how to deal with him just like we do. So tell me, someone tell me. Why do they do it? Is there some natural urge to seek out and prey upon weakness? To press vulnerability? Does it really make their day to send the weird kid into the girl's bathroom when it's full of girls? Do they go home proud of themselves, patting each other on the back over how cool they are? Someone please, tell me what it is. Do they and their parents really think that my son is any less a person than they are, that he is less loved, less important, less able to contribute to society, that he is less anything that is positive and good? The only thing that he is really less is less cruel, less dispassionate, less hateful and less harmful.
Please teach your kids how to be compassionate with those that are different. After all, are we not all different? We all have vulnerabilities and quirks. If a society makes it acceptable to victimize the citizens that are most vulnerable, then I cannot be a part of society. Since William's diagnosis almost 9 years ago, I have slowly backed away from society. Some of it is because his behavior in public can make him difficult to handle. But I have come to realize that a lot of the reason for my withdrawal is because the behavior of society is difficult to handle. If you see a special needs child behaving strangely in public, please try to remember that you are not at the zoo. Many special needs children look normal but act strangely. If you see a child acting strangely, even behaving abominably, please don't start whispering behind your hands about how you would handle that kid if he were yours. If he were yours, you would understand. It may or may not be a special needs child that you are looking at, but the point is that you don't know.
End of rant.

Monday, June 11, 2012

Stuff seems to only happen when I get into the shower. I'm in the shower, fairly helpless, when the screaming starts, or I hear the sounds-of an unthinkable crash, or glass breaking, or something. I call up my most horrible terrifying voice and turning up the volume, yell, "William!" That's safe, because it's usually him anyway. I race through the most comfortable and probably the only alone time of my whole day and go running out into the hall wearing nothing but a hand towel.

This happened to me yesterday. BANG! What was that? I thought. BANG! BANG! BANG! "WILLIAM!" No answer, unless you count BANG BANG BANG. I hurried through my hair and slid wet out into the hall, "What's that noise?" I yell. Sean was planted firmly in front of Phineas and Ferb and was, as always, oblivious to all going on around him. William was standing in the lving room looking up at me. "What was that noise?" I repeated. He put on his most earnest look and I steeled myself for something bizarre (he's very creative). He said, "I think it was the refrigerator self destructing." That was pretty ominous, considering that our refrigerator, although fairly new, didn't come with that oh-so-useful feature, "self-destruct mode."

Our neighbors are already pretty shell shocked just from living next to us, so I figured I'd better get dressed and not go streaking through the house. I couldn't remember if the blinds were open, after all. "Stay right there," I ordered, pointing a finger at him for emphasis. "I will be down in a minute."

I was down in a minute or less. All looked normal as I approached the fridge. I wondered if I should open the door. I did, but nothing jumped out at me. I looked in the freezer, and all looked well. And frozen. Then I looked in the fridge side again and saw a drink pouch at the bottom where it might pretty effectively block the door from shutting properly. "Were you just slamming this door over and over, trying to get it to close?" "Yeah, it wouldn't close," he said. "There is a drink pouch in the way, keeping the door from closing," I pointed out. "Yeah, it wouldn't close," he said again.

A few hours later, I was getting something out of the fridge, off one of the shelves on the door-then I see. The whole inside of the door was sprayed with soy sauce. Once upon a time, the cap broke off that bottle of soy sauce, and so it has sat there, capless, for a long time. Capless, but still safe. Until yesterday, when a kid couldn't get the door to close and so slammed it continuously, sloshing soy sauce all over the inside of the door. My apologies to soy sauce lovers everywhere.

Wednesday, May 2, 2012

I need the serenity prayer...

Usually I get on here if I have some story that's cute or funny or touching to share. Today I just don't feel that way. I wish I had a way of yelling at the world, and this is the closest I can come. I have a kid who repeats everything he hears, and also repeats actions that he sees, because he doesn't know any better. So think about that when you are out in public and are loudly exercising your right to free speech frequently punctuated with completely unnecessary profanity. Look around you and think about who might be listening. A week or so ago, my 11 year old son asked me, "Mom, what does f**k mean?" After my husband had revived me with our home defibrillator, I had to explain to William, who has the maturity of a five year old, that this is the worst of all the bad words and that he must never say it again. I have tried every which way to explain WHY I don't want him using profanity, and after every session, I can see that he absolutely does not understand.

I used to hear disabled young adults and even disabled kids using bad language all the time, and I was so haughty! "Well! They must hear it at home! How else could they pick it up?" Now I know! We do NOT use it, at all. In fact, if you come into my home and use that kind of language, I will send you out the front door on the business end of a cannon. I try to moniter what they hear online and on TV. It may be naive, but I want them to be innocent for as long as possible. Desensitize them to it now, and they will find it as acceptable as many people do. And when we do hear it, they ask me, "Mom, was that a bad word? Is it wrong to say that word?" So at least we do talk about it. And now when they hear a bad word off the TV or something, they both look a little worried and sad and seem concerned for the person who said the bad word, especially William.

Almost everyday after school, I take both boys to either the playground at William's school, or the one at Sean's school. Since the weather is nicer, we frequently have older kids from the nearby Jr High and High School who come and seem to be there for no other reason than to just hang around and be offensive. A couple of weeks ago I had to chase off 2 boys, one of whom was exposing himself and both were using lewd and offensive language. All while surrounded by kids Sean's age (6). Today on William's school playground, were 2 girls and a boy, Jr. High age, who were fooling around. The 2 girls were trying to get the boy's pants off. 10 feet from me. I ran them off pretty quick too. In both instances, these kids looked at me like I was an alien from another planet. Now I know I don't really look that bad, so I could only assume that their experience with adult discipline is limited. None of them mouthed off at me, I have to give them that. But I think it was only because they were shocked that someone had said something to them.

I bring this up only because I hope people will read it and think about what they say and do, and also because I hope they will all talk to their kids, know what they are doing after school and who they are doing it with, and DO SOMETHING ABOUT IT!! How would you feel if you found out your son was exposing himself on a school playground in front of 10 elementary school children? Or if your daughter was giggling over a boy on the ground getting into his pants? What would you do? If adults were caught doing what these kids were doing, they would be arrested and become registered sex offenders. Your thirteen year old doesn't need a boyfriend or a girlfriend. They're physically old enough, but mentally they aren't old enough to make mature decisions. They're STUPID!! They need you!

Monday, March 12, 2012

Adventures in Williaming

For the last couple of weeks, William has been required, in school, to practice for a program that will be put on tomorrow. They're singing music from The Lion King, and I'm not sure what else. He doesn't want to do it. I know he doesn't like being surrounded by the crowd of kids onstage. He doesn't like facing the crowd in the audience. Sometimes the music is too loud and overwhelms him. He purposely misbehaves during practices, because he's hoping that will get him sent to time out, which is just sitting out in the hallway.
Today when his brother and I arrived at the school to get him, we saw them practicing in the gym. The door where we have to enter is in full view of the gym stage and he had apparently been doing okay until he saw me. He believes my appearance is his signal to leave the gym and came running to me, teachers chasing after him. It took an argument and a slight tussle to get him back to his place. As we were leaving the school, I asked him (again) what his deal is when it comes to this program. He said, "That gym is just too big for me." That may not make sense to some people, but I caught his meaning right away. He has a very hard time explaining himself, but once in a while he hits the bulls eye. I think his senses get overwhelmed and that's very upsetting to him. It's too much noise, too much light, too many people, and too much space. I think that someone who doesn't have autism just can't understand what it might feel like to have great things crushing in upon them, making them smaller and smaller to the point where they might just disappear altogether. Maybe it isn't like that at all-that's just my analogy. I have had sudden panic attacks in crowds. I once left a New Year's Eve party at quarter to midnight. I had to get out of there. I think I may have some small understanding about how he feels with these things. Ever been in a Hard Rock Cafe where the music was so loud it drowned out everything else and made you feel like hiding under the table? Imagine being affected that way by what we consider normal noise levels.
He has been overly sensitive to almost everything since the day he was born. Touch, sound, light, food, anything-but particularly touch. Practicing for this program is also not part of the normal schedule, and that upsets him too. He loves the songs, and sings them at home. So, here's hoping his program goes well tomorrow!
I also need to mention-I hope it doesn't sound like I think the teachers are mean for making him do the program. I don't! I just got back from the program, and he did a great job, and everything went absolutely fine. I yearn for normal parent moments. I want to be able to go to an assembly and watch my kid sing. I sat there this morning and thought about all he has gone through in his life, all he has accomplished, and all that teachers and teacher's aides and therapists have done for him over the years. These people have devoted their professional lives (and their hearts as well, I suspect) to these children and their betterment, and some of them are danged good at it. So thank you, to all of you who have spent your lives in helping William and all these other kids who need you so much. You know who you are.

Sunday, March 11, 2012

Pity Party Sundays

It's very hard for us to get to Church. Now you might answer, "Things are hard for everyone." But I honestly wonder. I know, we all have our crosses to bear. Here is one of my crosses. William hates Church. That I am aware of, he has not had a traumatic experience, or anything like that. He just doesn't want to go. He doesn't want to sit still in a seat while someone at the mike up front drones on about things he doesn't understand. Then, he doesn't want to go to Primary (children's Sunday school). I think there are many reasons he doesn't want to go to Primary. One, I don't go with him. His brother would be with him part of the time, but they would not attend the same class. He also has a problem being surrounded by people. Sometimes, music can upset him.
So, Sunday mornings are a challenge for me. I confess, I have given in to weakness more often than not. I tell myself all the time, that if I had just never given in, had just made him go every week, he would be used to it by now. But a very small, smarter part of me says that it isn't true. I do make him go to school 5 days a week, and that has never gotten any easier, either. Every single school morning is a fight, right up to the last second, right up to the moment that I leave him at school. And every morning, I come out of it feeling like I need a nap, or maybe a baseball bat to the head. So lots of Sundays, we just don't go. My husband works all weekend, morning to night, and so I don't have anyone to help me-but I don't know if it would make any difference. I think I average 5 or 6 weeks between each Church attendance, and I'll tell you, when you are a Mormon, that makes you "inactive". I don't like being inactive. I want to be active. I want to teach a Primary class or be the Relief Society secretary or give a talk in Sacrament meeting once in a while. But if you are not active, they tend not to ask you to do those things.
This morning I got up, and said to myself, "Today, we go." I came down the stairs where the boys were already up, and I was in my Church clothes. William went into panic mode. He cried. He screamed. He laid on the floor. He hit. He kicked. If there is someone out there who thinks I should step up my attendance efforts, one of these days, I'll video this encounter and let you watch it. You'll change your mind. And don't get me wrong, in our Church, I have never encountered anything but understanding. That I know of, no one looks at me and judges me for not being there every week. I don't need anyone to judge me that way, because I do it myself. So anyway, I finally fought him into his clothes, his little clip-on tie. Sean had calmly informed me that he didn't want to go, but with him all I have to do is say, "We're going." He shrugged, made no further comment and appeared shortly in his dress clothes. We did go. We sat through that hour. But I can't get him to go to Primary no matter what I do. Sean likes Primary, but there seems to be nothing I can do to induce William to go. So when we do go, we attend the first hour and then go home. So they don't get their lessons, and I don't get mine, either. But that hour is always better than nothng.
I think one of the reasons I have such a problem is because I have this issue with him every day, preparing for school. I do it 5 times a week, you'd think making it 6 wouldn't be such a big deal. But somehow it is. The unbearable weariness of it all. I wonder all the time, "Am I really doing my BEST?" And, "Is it enough?"