September 27, 2008

A Moment of Peace

I had a moment of absolute peace the other day. These are rare and I treasured it while it lasted. It was grey and overcast outside, just the way it always is this time of year. Howdy was working on rewriting a story, Sassy was listening to a phonics book on CD with her headphones on and Bubba was upstairs writing his own story. I had finally summoned up enough courage and energy to tackle the mountain of pots and pans that were threatening to take over my kitchen. When I was almost done, I turned off the sink for a moment. That's when it happened. With the sink turned off, I heard absolute silence. Everyone was busy with their own task and no one was making a sound. There were no firetrucks or motorcycles roaring by, no dogs barking, no phone ringing. I just stood there at the sink, closed my eyes and soaked it all in. It was an amazing 7 seconds.

September 20, 2008

Long Overdue

How do you explain to your 8-yr old son that he has Autism? How do you explain to his siblings that you can't always treat their brother the same way, that things aren't always fair for them? This has been my recent dilemma.

My children all know that Bubba is different. I've explained to them several times that his brain works differently than other people's and that's why he does some of the things that he does, like throwing fits and not speaking well and wanting to only play by himself. They know he doesn't always understand everything the way that they do. I wanted to acknowledge that Bubba had some issues without giving him a label. I didn't want him to grow up being known as "that Autistic kid". But in trying to make life as "normal" as possible for Bubba, it seems that I've made it more difficult for everyone instead.


Let me start at the beginning. When Howdy, my "normal" one, was about 2 yrs old, we started noticing him doing funny things. He couldn't stand for cupboard doors or drawers to be open. His favorite thing to do with his cars was to line them all up like a train, all facing the same direction. He would leave them like that for days and we couldn't disturb them. He hated to get dirty. He refused to walk through the sunlight shining through the skylight at the mall. When you see your kid doing odd things, you can come up with 20 different reasons why, but none of them is a disability or illness. It's not denial, it's just that it never occurs to you that there might be something wrong. The tipping point for me came when he threw a fit at the mall one day. We were walking into Target and the entryway tile didn't match the tile in the rest of the store. It was the same color but a different pattern. He threw himself down on the floor kicking and screaming and refused to walk any farther. I had to carry him out of the store while he was doing this and he didn't stop until we were completely out of sight of the store. Even then, I didn't think there was really anything wrong with him. I honestly thought he had just picked up on my perfectionism and neuroses. So we launched a campaign to make his life messy and disorganized. And it worked! No more weird issues.


Flash forward a little to Bubba at just over a year old. Over a period of a couple of months we started noticing some odd things. He lost the words that he knew, he stopped making eye contact, he seemed to not hear us sometimes, he started screaming a lot and throwing major temper tantrums, he was lagging behind other kids developmentally. After many tests and consultations, he was diagnosed with Autism just before his 2nd birthday. And so began years of therapy, at home and with the doctors. Hours upon hours upon hours spent trying to help Bubba learn to communicate, to sleep, to function. Hours spent dealing with tantrums, a run-away child, and sensory issues. And while we tried not to let it rule our life, it is still a central part of our everyday living.


In the middle of all this, we also had another child, Sassy. (The fun never stops!) We've never sat our children down and said, "By the way, Bubba has something called Autism." We have, as I said, explained to them (including Bubba), whenever it seemed necessary, that he is different from other kids. We explained it as his brain working differently than most people's. It didn't seem to be too big of an issue. Yes, they would get frustrated or mad at him sometimes, but they just seemed to accept Bubba's behavior as just who he is and that was that. Or so I thought.


Remember that Howdy had had some of his own quirks? Well, when he was in Kindergarten, I started to realize he also had some sensory issues. If I hadn't gone through all that I had the last few years with Bubba, I never would have recognized it. All this time my focus had been on Bubba's obvious issues so I didn't notice that Howdy had some things going on as well. We had to make some adjustments for him at school and everything seemed just fine.


The truth, however, was that things weren't fine. Bubba's problems were so in-your-face-obvious that I had no choice but to notice and deal with them. Howdy's were more subtle and therefore didn't warrant any intervention. But something happened the other day that made me realize where I've fallen short and dropped the ball when it comes to Howdy.


While Hubby and I were at the fair, the kids were home with a babysitter. Apparently some things happened that caused my 2 boys to come to blows with each other. Actually what happened was that Howdy snapped and started beating up Bubba. All the while shouting, "That's it! I've had it! I can't take it anymore!" All of his frustration and anger with his brother finally boiled over and he lost control. Grown-ups intervened and separated them before anyone was seriously hurt physically, but all involved were crying and upset.
I wanted to cry when I found out. I felt like someone had hit me in the chest. And my first thought was, "What have I been doing wrong? Where did I fail Howdy? Obviously he was needing something that I didn't give him. What do I do now?" It's so easy to go back and see what I should have been doing, the signs I was missing. Hindsight really is 20/20.


I've always known there are support groups for kids who have siblings with disabilities but I figured Howdy dealt just fine with his brother so he didn't need that. And Howdy didn't have the obvious problems that Bubba did so I expected a lot more from him. I sometimes found it sweet in a big brother kind of way that Howdy would try to placate Bubba and redirect him when he seemed on the verge of another fit. It never occurred to me that maybe he felt that he had to be responsible and help us out. I was now left wondering if the only reason that Howdy was able to get along with Bubba most of the time was that he had his own class at school and therefore had hours most days that he didn't have to deal with his brother.


While I wasn't exactly sure what to do at this point, I knew that at the very least I needed to sit down and talk one-on-one with my kids and find out what was going on. I went to the library and found a great book that describes Autism to kids in language they understand. I sat down first with Howdy and read it to him. I explained to him what Bubba had been like when he was younger and how far he had come. I tried to explain what life was like for someone who was dealing with Autism. I also told him about his own issues and apologized that I sometimes forget about them. He cried several times while we were talking. I hadn't realized how much he had kept bottled up inside. He never felt like he could say anything because he didn't want to get in trouble. He tearfully, timidly admitted to me that sometimes he wishes he didn't have Bubba for a brother. That broke my heart in so many ways. I shared with him that I've cried many times over Bubba and always wish he didn't have Autism. I also let him know that he can always tell me anything. If he's having a day that he wishes he could just drop-kick his brother into next week, then he is to come to me and tell me and he will never get into trouble for how he's feeling. The point is to talk about it and not let it blow up. We sat and talked for and hour and a half. It drained me emotionally and physically. There's nothing worse in the world than feeling like you've caused your child anguish. He'd been burying all his feelings for years. Why did it never occur to me that he might have trouble dealing with this just as his dad and I had? But it's better now that he knows he can come to us and I know to be more sensitive to his needs. I'm also looking for someone professional that he can have access to to talk about any of this.


Sassy was so nonchalant about the whole thing. Her attitude was kind of, "OK, whatever, can I go play?" Of course, she is only 5 and she's always had her oldest brother protecting her.


Bubba was hysterical. When I read the book to him, he actually got really excited. He said, "I'm gonna be the top, #1 Autism!" He told me the Autism is why he's a good mind reader(!). Then he kept trying to finish all my sentences because he was "reading my mind." It actually got really annoying. But I love his attitude. He thinks he has superpowers or something. Now he wants to tell everyone about it. If anyone will listen long enough, he'll tell them that when he was 1 1/2 he "got the Autism". He's funny.


I don't know how other families deal with this. I'm really not in contact with other families with Autism so I haven't heard. But I just have to keep telling myself "better late than never." I can't go back and change anything but I pray that what I've done recently and what I do from now on will make a difference.