Happy Halloween 2009!

Yep, it's that time of the year again...and our home is filled with excitement as my boys become vampires. Don't let them seek out the warmth of your neck... Happy Halloween!!

Dance Man

Jari and I were having so much fun together dancing the other night. Giggles, smiles, and pure silly fun. Here's a glimpse of his great moves :-)

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?

Man-Child

I feel my son hug me. His arms encompass me. His shoulders wrap around mine. I no longer encompass him. I look into my son's face. His face is no longer a baby face, but covered in the beginnings of a mousetache above his lips. I hear my son speak. His voice crackles as it deepens, no longer the high-pitched squeal of a child. I see his adam's apple jigging out from his neck. I stand next to my son. I no longer look down at him, rather just a tiny turn of my head upwards to look into his eyes. His feet plunk along in size 11-12 shoes, his pants a size 33 waist, his shirt a men's medium.

Where did the time go? My son is becoming a man. I can't deny it any longer. I feel proud when I look at him. Look how far we've come. My dream of raising my little boy to be a happy, productive man is beginning to take shape. The shape of the man-child standing next to me. I'm so proud of you Kaeden Riley! But you'll always be mama's little boy!

just stuff

I've started so many posts over the past few weeks, but it seems every time my thoughts are interrupted by a phone call. And once I get past the call, my thoughts are shattered into a million pieces and I can't finish what I started with clarity. So, here I am, again today, trying to find words for all that's been happening around here. I'm going to do a few quick bits, hoping the phone won't ring as I write.

• We spent Sunday in the woods. Walking, playing, letting the sun warm us as we trudged through the fallen leaves of autumn. It was such a pleasure, our little walk in the woods. We found a polecat in the woods, hiding in his little hole, but willing to wow us with his adorable face, getting close enough to touch. The boys were in awe. We ran races, played with sticks, collected corn cobs for our Thanksgiving feast. And then, as we left, we turned our car into a farm and found our pumpkins to help us revel in the spirit of Halloween. We came home and immediately set to work carving our pumpkins. It couldn't await a day closer to the holiday itself. Little pleasures to end a wonderful day.
• Jari and I attended an autism traesure hunt for brothers and sisters of kids with autism. It was set up in stations: gym activities with a survival course, music therapy with drums and maracas and guitars and tambourines, storytime with explanations of what autism is, how it feels, and how it affects people around us, and a video created by brothers and sisters explaining how autism has affected them. Jari collected puzzle pieces at each station during our afternoon and at the end of the treasure hunt he had 5 puzzles to bring home, all giving a kid-sized explanation of what autism means. It was a very well constructed exhibition for kids and I think Jari came away with at least an understanding that there are more people out there with autism, more kids who aren't autistic themselves, but still live in an autistic world.
• I continue to go to therapy 2 days a week for my hand. Everyone but me thinks there is improvement. All I know is I don't see myself progressing at the rate I desire. I still ahve no feeling, still can't make it work properly, still can't stand that my hand doesn't look like a hand. However, I keep working it, hoping that eventually I'll have some use again. Will be able to function if only to put my hair in a ponytail, open a bag of cereal without my teeth, fold clothes without pain shooting through my arm. Yesterday as I waited for my appointment with the surgeon, I looked around me at the people in the waiting room, the majority of whom were elderly. And I looked at their limbs, all still intact, and I thought: What will I be like when I am 70? Will I be able to twist my hands together like that lady? Will I be able to hold a magazine like that man? Will I be able to pull open my zipper like she just did? Or will I forever and always be a handicapped version of the former me?
• Our fight has begun with the Belgium government for funding for Kaeden. Our visit with the doctor did not result in a positive outcome and we've appealed the decision. I am tied up in nerves strung tight. Financial issues are starting to feel at the brink of swallowing me whole. And what happens now? What happens when Kaeden is an adult and we haven't been able to secure his future for him now?
• There is a case beginning for damages against the owners of the house where our vacation led to my accident. This also has me strung in knots. I am worried. I have to somehow prove I was not at fault for the accident, that they were negligent. How can I prove it? Why would this have happened if there was no negligence? I am tired of paying all the bills, all the extra bills that we didn't have before this happened. My husband can only make so much. And now, becuase I can't work even if i wanted to, there is no possibility of further money coming into our bank account. I've discovered I really don't like dealing with these kinds of issues.
• Jari has started seeing a therapist to help him get over the shock of my accident. She is such a calming person. Jari seems to really like her. I don't know what she is doing with him, but in the past few days I notice a difference in his attachment to me, a difference in how he regards me. I am feeling like we have a bit of hope to latch onto, my baby needs his mama again. Last night when he actually came and sat next to me on the couch made my heart just sing. I feel a huge relief wash over me as I consider that my son may be working through the effects this accident has had on him. He's going to be okay, we're going to be okay.
• At the soccer game Saturday, I stood up to parents on the other team. They were being harsh, directing comments towards our team players, our coach. I didn't like how far they were taking their aggression. My son was out there on the field. I try to teach him to be a good sport. The other team was working against me. I went to them, told them enough! That these are just kids and they don't have the right to be acting like they were. It got results. I said my piece, walked away, and after a few grumbles I heard no more. I was proud of myself for standing up for something I believe in. For having the guts to prtect my son. It isn't often I feel enough courage to do this in Dutch, and it felt good to finally do what needed to be done...and even get results.
• Further, everything is going quite well in life. My kids seem to be happy, my family content. What more can you ask for in life?

Message From Church

Last night, I attended church with Kaeden. I am not a church-going woman, but a strong believer in faith. I attended church last night as a member of my choir, where we sing the mass once per month. I try to bring my kids with me when other activities don't create schedule conflicts. I believe that going to church can bring a sense of community, a sense of belonging to something greater, a sense of peace. But I don't feel that we must attend church to feel the faith of our higher power.

However, last night, though I resisted going, I still went. I am glad I did. Only 4 choir members showed up to sing, and my voice was needed to help the music carry to the fellow patrons attending the mass. But above my voice, was the presence of the sermon, a wonderful message to us all.

The sermon last night was about worth. How each of us in this world serves a purpose, and the relationships we engage in throughout our life on earth. It spoke of the varying people with whom we have contact, and how each person serves a purpose and fulfills a need during our engagement with them. It spoke of power, and the power we have to make our lives complete in how we deal with the other party in the relationship.

The relationship can be that shared between a man and wife, between a child and parent, between friends, or even between two strangers coming together for some undefined purpose on the street. Each of these relationships gives us power and serves a purpose, not only in our life, but in that of the other party. How we treat these relationships varies depending upon our need and our involvement with the other party. But whatever it's purpose, and though we may not always know the reason, how we engage in these relationships makes us the people that we are, the person that others see.

Each person put on this earth serves a purpose and has worth. It is up to us to understand what their purpose and worth are, and how to make it fit into our own life. If we smile, oftentimes a smile is returned. If we growl, our worth in another's eyes is diminished. Do we have a right to judge that growl? Each person has a story, and we don't always know what the story is. We must try to create harmony in that relationship, whatever feelings it brings with it.

I sincerely needed to remind myself that each of us has worth, that each of us has a purpose. As my son fidgeted beside me, his voice not the quiet voice we *should* use in church, his hands tapping his flyer with the words of the sermon rather than quietly reading along or listening, I looked at my fellow village patrons, the people whom create my community, and I saw many different faces and expressions staring back at me. Each of these people has meaning in my life. I may not know them, I may not know their story, but there is a reason they are there and in the same space with me, a purpose worthy of my attention. What I bring to this is my own doing. But I can accept them, give them the value they deserve, and move forth with that information in hand. My son, also a fellow patron, may be autisitc, may judge the world differently, but he has a purpose, he has worth. As his voice carried above the words of the priest and I began to feel uneasy with his behavior in church, this message came back to give me peace. My son has worth. He has a purpose. Each of those faces listening in the church have the opportunity to learn from my child, to value him, understand his worth. As i sat in the pew, those words gave me peace, hope, and understanding. I am learning to be accepting, to share my story, to find peace with who I am, the power I have been given, and what I choose to do with it. I am learning to find worth in others, to value them no matter how different the paths our lives lead.

Here are the opening words from the sermon I heard last night:
"It isn't good that we as people stay alone. God called us to life to share in a relationship, with Him and with each other. We were given ears for listening, a mouth in which to speak, and a heart that has the power to give and receive love. The harmony from the creation is disturbed. Peace is something we must go out and find...."

A good basis to remember. A good basis to find worth and value in every person with whom we share a relationship, no matter how big or how small. No matter the differences between us.