Autism...Why? How? What?

Last night, I had parent teacher conferences for Kaeden. I waited impatiently on the chair outside the classroom, finally seeing the door open as I was ushered inside. I was asked to be seated at the table, along with 3 faculty members in attendance. When we all sat, there was a silent tension in the room. Not a wrod was uttered and the silence was deafening. After what felt like 10 minutes, I exclaimed, only a slight tremor to my nervous laugh: Uh oh, what did I do wrong?

It broke the tension as they all laughed back, but when the sighs came I knew I was in deeper than I had hoped to be. The report sat across from me and I glanced at it as the teacher nervously moved it back and forth on the table. After all looking at each other and to me, one said: Well, Kaeden is above average in his academics in the class. His skills are strong, how well he works with his hands is amazing. But I don't think the issue can be simplified into his school work. What we need to discuss is his behavior and what we're going to do.

I let out a sigh, tears stinging my eyes. My above-average kid now strampled back to the ground with behavior issues. This is nothing new for me, I know what is happening at school from the near-daily conversations I have with one or another faculty member. My days are spent worrying about answering a ring for fear of what each day will bring, listening to yet another: Sorry to have to call you with bad news....

If it isn't one thing, it's another. My little boy. What a life he leads, bringing me along for the ride. And it's not so much of a fun one.

After the initial conversation started, it just went downhill, just as his behavior has over the course of the past few years. I support the school, really I do. There hasn't been a recommendation that I haven't approved with the signature of my own hand. I give them the credit they deserve in trying to tame 'the wild beast'. But they, as we, are not getting the job done. Hearing about fearful teachers and students at the hands of my own child is not something I can even begin to describe. The child who so freely gives of love one moment takes it all away in the blink of an eye. There is no trust, no energy left for patience and understanding. Everyone keeps trying to do the best they can, but our best is just not good enough to help my child achieve success. Our support, though strong as ever, begins to wane in the face of our own frustration, our own incompetency.

Kaeden is unreachable. There is no getting inside his head to understand his bouts of anger, the fury which drives us all to shame. Why? I ask again. Why? And there is no answer.

The only solution, according to the school, is full-time one on one support, which they haven't the capability to offer. As much as I understand this, it still infuriates me. Where can my son receive the help he needs? And when an answer of "It doesn't exist" is returned my way, I fight back tears yet again. If there is no help to assist him, where do we go from here?

During the course of our meeting, there wasn't one of us that kept dry eyes. This proved to me the impact my son has had on these teachers. As we cried together, one teacher said: I'm certain this keeps you awake at night, these problems and no resolution. Yes, I responded. And when another tear fell down his own cheek and he told me he doesn't sleep either worrying about my son, his present and future, I was blown away. With further worry, but also a sense of belonging. There are people that care. There are people giving him their all. There are people who see the sweet young man hidden behind the mask of fury. There are people willing to help him be a success.

If only he would know that. If only he could begin to understand. If only. But there is no if only. Kaeden's autism has stripped him of normalcy. It has stripped all of us of any normalcy. He can't find his place in our world. He's lost behind the fear shooting from his eyes, the anger over this injustice I call autism.

And as I drive home, still trying to control tears that sting my eyes, but can't seem to fall, there have been far too many over the course of the years, this is just another little place I call my world. Welcome to my world...the world where tears are the norm and smiles and freedom are unique. I drive home...and I wonder at the injustice of it all. IS there a God? What did I do to deserve this? What did my son do to deserve this? Is there nothing that will bring him peace in his life? Is there nothing that will allow my heart to quit aching with pain? And then I start thinking about blogs I read, forums I am on, groups I have joined. And the injustice seems even greater. These other parents seem to be doing okay. The majority of other parents of autistic children seem to be in control, their children seem to be climbing a ladder of success. Why am I the odd one out? What am I doing wrong? Is there any hope?

I feel like I am drowing, in a sea of sadness and despair.


So this is blogging... said...

I'm so sorry Tera. I still believe God choose Kaeden for you so he could have the best life possible. I know that's hard to see but if he were with a mother who didn't care as much he wouldn't have any happiness at all. Don't give up searching for answers. There is help somewhere out there, but it's not going to be easy to find. Not easy at all. You are such a strong woman and you will find the answers, I have no doubt about that. If there's ANYTHING I can do to help please let me know. I think you know I would do anything for you and for Kaed, without hesitation. Don't you EVER feel like you're imposing on me either, that would really make me mad! I love you. Please keep your chin up, and don't ever give up looking for answers, solutions and assistance!

tlawwife said...

My heart is bleeding for you. I wish I had answers but I don't. I do know there is a God. I will continue to pray for answers for you.

I do think you are blessed to know that the staff at the school truly care about your child.

Tanya @ Teenautism said...

Oh, Tera, I feel for you. This is how I felt last year when I had no other acceptable choice but to homeschool Nigel. Fortunately, he has had a positive response to risperidone and so far is doing all right back at regular school (part-time) for the past few weeks. It's the only thing that has really made a difference in his behavior. But I know that it doesn't work for everyone, and for many it stops working at some point. Not sure what I'll do if that happens.

I'm thinking of you, hoping you're able to find good options for Kaeden.

Jade said...

Tera, my dear dear friend. I want to hug you and I'm angry that I can't. I'm even more angry that you're so far away because I would work with K for free!

All I can say is this my friend. Don't give up. There is a key to every kid. I truly believe this.

I am going to email you because I want to add more than I feel comfortable leaving on here. So please check your email and above all... know that you are cared about, thought about, and many people would do all that they could to help you and your family. The world is not against you, even thought it may feel like it.

Hugs to you my friend

Alison said...

big hugs to you Tera, I wish I could give you the answer and take away your pain. Please remember and believe that you are an incredible Mom and you are doing all you can for Kaeden..find your peace in that.