Saturday, January 31, 2009

I cannot tell a lie

I haven't been posting much because I am finding it hard to be all "sunshine-y" right now. Jack's behavior has gotten worse recently and we're really struggling with how to handle it. I've always told myself that "things will get better" and have the mindset that he'll just grow out of most of this...but lately I've had the realization that things might not get better. Things might stay the same. Things might get worse. Jack will get bigger and stronger and smarter.

His listening skills have gone way down. He doesn't listen to most of the things we tell him or ask him to do. He yells and screams A LOT. He throws many tantrums throughout the day. A lot of what we say doesn't "register" with him and we get a lot of blank stares. Parts of his communication have improved, but other parts seem to be regressing. It doesn't seem to matter how we talk to him or how we discipline him - things just keep getting worse. It doesn't matter whether we talk calmly to him or if we yell at him - he reacts the same way. It doesn't matter whether we put him in time-out, try to re-direct him or ignore it - he reacts the same way. He yells and screams. And then he screams and yells some more. We spend quality time with him. We play with him. We read to him. We have a pretty well-structured day. We give him plenty of warnings as to what activities come next. We give him reasons. We love on him. We keep his routine consistent. We talk to him all of the time. And it seems that none of that makes a difference. His behavior (even if it is completely unintentional on his part) is like a slap in the face to us. We TRY. I wish there was an easy solution to this.

What makes this even more difficult is that no one else sees this. No one else sees the way Jack acts at home. He acts fine at school. His teacher has mentioned that she can tell he's "holding it together" at school...just because he's at school. He's absolutely adorable when we're in public and he smiles and says "hi" to all of the people. He's a ham at the doctor's office. Everyone just thinks he is the cutest kid ever. But once he's told something that he doesn't like or doesn't get his way or gets upset over something (that is invisible to us), he turns into a different child. And, let's be honest, you can't let a preschooler have their way all of the time. We still need to be parents.

Autism sucks. There's just no other way to put it. We have so much to learn and so much to figure out. We feel lost. We are tired of being yelled and screamed at. We are tired of repeating the same instructions hundreds of times. We are tired of not sleeping well. We are tired of the tantrums. Lonnie and I are just so, so tired.


Anonymous said...

I just read your blog. I am not sure what to say exactly, but you, Lonnie and Jack are in my prayers. I can't imagine the frustration you are probably feeling. Thinking of you.

Givinya De Elba said...

Oh Steph, Oh Lonnie, that sounds really hard. I hate stupid platitudes, and you'll never get them from me. How about instead I don't actually SAY much, I just pray?

Dear little Jack. Such a blessing, such a challenge too. I will send some friendly whispers to heaven, and I'll be thinking of you all. Kate.

Tiffiny said...

Oh Stephanie, I had no idea you guys were going through this. When was he diagnosed? I am so sorry, but you are right.. Jack is yours for a reason and even on your most tired days he is blessed to have you. Give yourself a hug all the way from CA! We will be praying for you guys. xox