autism woes

I'm beginning to feel scared. I don't know where Kaeden's life is going to take him. He seems to me, in general, to be a happy kid. Yet, there is always the underlying anger, fear, frustration which takes him from being happy to blowing up like a bomb in your face within the blink of an eye. All those 'little things' we don't even notice- noises, lights, temperature- and they hit him like a bullet causing him to scream in agony. His scream comes mostly in the form of anger. Lashing out at those of us who love him, who he knows will continue to love him. There has been so much damage done. Our home is a tattered mess of reminders of Kaeden's outbursts, our spirits sag when his anger replaces the peace in our home. And Kaeden, when it's all over, lays hiding under blankets tears streaming down his cheeks as sobs expel from that place deep inside. He is such a loving, giving kid. And he hates his anger more than all of us combined. Yet he has no power over it. He has zero control.

Last night we attended parent-teacher conferences. I knew that Kaeden had been to the switch (time out room) numerous times this year. He tells me when I ask him how school is going, that it hasn't been easy. What I wasn't prepared for, was the extremity of the situation. Kaeden is having daily problems in the class. Daily, meaning usually 3+ times per day. He has gotten physically violent, and damaged buildings in the school. His classmates are frightened of him, as well as the teachers who come to collect him during one of his meltdowns.

Upon entering his class (1 1/2 hours later than our planned meeting...yeah, Erwin and I were both already irritable) we were greeted with sighs. "So, we need to discuss Kaeden..." and then it began. Where do we go from here? How can we work preventatively? How can we enforce rules with him having power over the teachers due to their fear? How do we ensure the safety of the other students?

  • Positive reinforcement works a charm. "Kaeden, great job, I'm proud of you."
  • Laying things out in steps works a charm. "Kaeden, see what the teacher is writing on the board? First you need to read. And then we'll discuss this. And then you will do the worksheet."
  • A calm environment works a charm. "Kaeden, see how quiet it is. Everyone is doing their work, so now you can too."
  • Keeping him separated works a charm. Kaeden asked himself to have his desk completely blocked off from the rest of the class. his desk is surrounded by walls on three sides which blocks a lot of the activity of other students.
  • Close proximity works a charm. During moments when Kaeden is not at his desk, a teacher needs to physically stand next to him and direct him, not allowing other factors to get in the way of his concentration on that single task.
  • Structure works a charm. "Kaeden, here is what we need to get done today. See, you'll do this and this and this at these times. See, it's not so much work. Every 30 minutes you get to do something else."

And this is all fine and dandy, but who is the one ensuring Kaeden's needs are met? It is nearly impossible for a teacher with additional students in the class to give Kaeden the time it takes to ensure these factors are in place, allowing him to be successful. There are no one on one aides to provide him what he needs. And though I think it would be helpful during the class to have a one-on-one aide, I'm not sure that it prepares him for the future. In his life, there will be no one-on-one aide helping him buy bread or wash his clothes or go to the post office. There will be no single person he can always rely upon except for himself. He's going to continue to grow, continue to progress to some form of independence, and he has to learn to deal with his autism and learn to have control over it. Or life is going to come to a screeching halt in a 4x4 cell.

That is what scares me. His future is confronting me, even as we work hard on his present. How will my son manage in life? Even if he ends up living in a group home, how is he going to come to terms with right and wrong, even factoring in all the prikkles that an autistic person must learn to dominate? Is my son going to have any chance at a future with some normalcy?

So, yes, I am scared. The meeting last night just reinforced all the reasons I have for being scared. Right now it's just school. What about a job and money problems and cooking and cleaning and washing and an alarm clock and regulating time...when noone else is there to help you do it when it's real life and not just school?

Where is that magic pill?


Tanya @ TeenAutism said...

Another insightful post, Tera. I have so many of these same fears. Nigel has one-on-ones in all of his classes, and he is still having problems academically. The future alarms me and sometimes I just want to bury my head in the sand. I try to be hopeful, but it's always an uphill battle and there are no guarantees for the future. One good thing is that at least you and I have a resource in each other, even if it's just knowing that someone else understands. Take care.

V-Grrrl said...

I'm sorry. I know this weighs heavily on your heart with good reason. I'd like to think that adolescence is the most difficult time for Kaeden emotionally and physically and that as he matures things will settle down for him and become more manageable.