4.29.2009

Pictures

Pictures are something I absolutely love. Even as a kid, I always had a camera with me, taking pictures anywhere I went. I'm not sure how my love for photography developed, but when I was nine I received my first camera from Santa Claus. I had begged and pleaded to get a camera, whispering in Santa's ear that he just had to make my dream come true. On Christmas eve that year, I was sick. I couldn't sleep and had a tummy ache. After getting sick in the bathroom sometime in the middle of the night, my mom by my side, she pulled me over to the Christmas tree bulging with surprises from Santa, yet undiscovered by our little eyes. She picked up a box from under the tree and handed it to me, saying: Here, maybe if you get to open one surprise, you'll feel a little better.

My mom and I sat there underneath the lights of the tree as i slowly opened the box. Inside was my dream come true. A camera! With a roll of film and batteries and a little case all perfectly filling the little box. I was speechless, and I looked at my mom, her eyes wide with happiness. "I think Santa knew just what would make you feel all better," she told me. I hugged her hard and we did a little dance, just the two of us sharing a special moment far too early that Christmas morning.

As she tucked me in, my little box full of camera snuggled tight beside me, I finally fell asleep. Yet, morning couldn't come early enough, and as my brothers and I made our way to see what surprises Santa had in store for us, I had already inserted my first roll of film and was capturing the first of our Christmas moments to be forever captured on film. It was a little girl's dream come true.

I enrolled in photography classes throughout junior high and high school, learning better lighting and capturing modes. I learned darkroom techniques and solutions and loved removing my rolls of film to take them into the darkroom, hold them under the solution, watch an image fill the paper, pick them up with a tweezers and hang them to dry, awaiting the moment when those images became something I could grasp onto and call my own work of art. I loved those classes. And I did well in them because of my love for photography.

Fast forward a few years. I still always had my camera, always took photos, and then ran them off to the pharmacy where I could pick them up later and see the results of my work. I collected thousands of pictures, but after taking them, they were always left to sit in the little envelope in which they were returned to me. I never made photo albums or scrapbooks, just stored them in a box, all those memories coming alive again and again when I would open up the box and like my first camera, thumb through them awestruck.

I still love photography. I wish I had taken my love for it further, learned more, used my talent to latch onto something I could have turned into a career. But I didn't. Instead, I play with pictures, filling my digital viewfinder with the things I find most important, my family my desired subjects. I love having digital images in which I can immediately relive all those wonderful memories. My husband purchased an external harddrive to store all of my captured memories, as I can't control myself when a camera is in my hand. I feel freedom and happiness, and when I get one really terrific picture out of a hundred i took on any given day, I am ecstatic. I can look through my online albums for hours without ever getting bored. I can remember back to the moment that picture was taken and awaken with it the happy (or sad) experiences that it evokes inside me.

Someone commented not long ago that they love to watch me when I take a picture. As I align my subject in my viewfinder, the passion on my face, and then, just as i click, my lips form into a smile, and as I review the image, I cock my head with a little smile on my lips as I see this creation which I will always have to carry with me. I didn't know I did this, but since it has been brought to my attention I am more aware of my photography style, and it is indeed true. I just love knowing that I'll have that moment captured to remind me forever of that one moment in time.

Photography. One of the greatest loves of my life. And one in which brings happiness to many more than just me alone.

4.23.2009

Summertime

I know Spring has just arrived. And I love Spring, what with sunshine and flowers and butterflies and bees. But, instead of focusing on Spring, I am thinking about summer. Summer, glorious summer. Days of heatwaves and splashing water in the kiddy pool, going to the park and getting an ice cream cone from the sing-song car that drives by. Summer, when mama no longer has a moment to herself, but instead her life revolves around entertaining two boys whom have nothing to do other than become quickly bored after each and every activity.

I'm not one of those moms that dread summer. I enjoy having my kids near-by, time to shower them with attention and fun. Or, I USED to love it, back when life was more simple and I could manage both of them at one time. Now, it consists more of tearing apart fights and trying to keep them separated, trying to get Jari to quit teasing or whining, and getting Kaeden to actually do something on his own without pulling his little brother into the mix.

I love thinking about our summer vacation and what new experiences we will share as a family. Maybe a new location, but at minimal, a new home in which will become ours for just a week. I love having my husband with me 24/7 for those 3 weeks, sharing the daily chores in addition to an almost yearly argument over the map-reading process of hidden little bungalows in the woods. Him and I sharing our findings of things to do and see, packing up a lunch and heading off to our destination.

But the past few summers have been different. I start dreading the coming of summer, unsure how I will handle my two intense boys. When school runs, sportday, and class trips start being mentioned in the agenda, I recognize my time is nearly here. My me time forsaken, my sanity unplugged, my nerves standing on end. I try to reasuure myself: go for lots of bike rides, lots of playgrounds, lots of walks in the woods. Those activities never bring fights along. DO NOT leave them alone outside where something like building a dangerous hut is surely on the agenda and a hammer is but a near miss to someone's head. DO NOT let them fill the kiddy pool without supervision, where the entire house, kids, animals, and plats will get a drenching. DO NOT leave them alone in the kitchen where things like flour and sugar become a new floor covering. DO NOT...there are so many DO NOT's.

So, this summer, to keep tensions somewhat at bay, Kaeden is off on a trip to America. Yes, Kaeden. He'll be there for one month to be showered with attention from Gramma and Grampa. He'll have the opportunity to be independent and show us just how capable he is when things are left in his own hands. He's traveling alone, 9000 miles, over an ocean, a 20 hour day at his disposal. And me, I am really nervous.

Because of the behavior issues we've been having with Kaeden, I feel more nervous about this trip than I have in the past. And I am a bit unsure if I was sane in making this decision. Kaeden loves to travel and has always done wonderfully with it. He has taken this trip alone before. He was successful. But my mind keeps hammering: WHAT IF HE....and all these scenarios keep playing out in my mind, which always bring me back to an emergency landing and Kaeden never returning to European soil. I know this is not realistic, but that's what plays out in my mind.

Am I being fair to people he'll come in contact with, IF something happens to go astray? Am I being fair to the airline, putting the responsibility of my son in their hands, my son whom even I can't seem to control (though he does much better with others than with me). Am I being fair to Kaeden to expect so much of him when lately he proves time and again he is unable to control his actions? Am I being fair to my parents, whom though they love Kaeden dearly, may come into contact with 'the beast' and entertain a different notion about their first-born grandchild? Am I jeopardizing too much being selfish and earning myself a little breathing room?

I can't help but put these questions through my mind. My husband tells me I am worrying for nothing. That Kaeden, in new situations with strangers around him never acts out. That he has traveled this route many times in the past, and every time has been more helpful to us than any hinderance. That Kaeden needs to be given a chance to prove to himself, and us, just how much he can achieve on his own. That he deserves the right to spend time in his homeland, with his grandparents, to enjoy this little piece of heaven that he calls his own. That Kaeden needs the spcae to breathe, just as much as we need the space to breathe. That a little distance can only help us to gather up our sleeves and bring more patience and energy back into our bodies.

I can't help but worry. And yet, somewhere in the back of my mind, I know it will all be okay. If I wasn't more sure than unsure I wouldn't have considered buying those tickets. Please, I have 2 months before his departure. Give me peace with this decision. Don't keep me up nights worrying, popping tylenol to rid myself of a continual headache until he is safe on the other side. Help me come to terms with the fact that though autistic, my son is still just a teenager wanting to enjoy life, and able to do so. Just give me, and my son, a little extra boost of strength, to make this a safe journey.

And when he's safe on the other side, I will take my lil guy on bike rides and for ice cream and to the park, happy that it's summer, happy that I have time to shower him with attention and fun, while knowing the other one is getting the same...without a frazzled momma unsure how to cope.

4.21.2009

A New Drug.

I'm in a kind of writing funk lately. Seems like I can't write for love nor money these days. I start to reel out a post or a journal entry or work on a story, and it just stares back at me, teasing me with those few words that never even have a chance to start. And then I just move onto something else, because there is no point when the words just don't want to come.

So, I'll begin with Kaeden. I am seeing a tiny bit of hope again surface. Although I do not like the means of this hope, it's still a little something to fill my heart up with a sense of maybe, which has been lost in this little word called autism over the past few years. On advice from our autism counselor, we returned to the hospital for a meeting with the psychaitrist. At least she was able to pull some strings and get us in before my already agenda-ized meeting with our regular psych in JUNE. Yeah, 4 months later to get an appointment. Waiting lists of 3+ years for services. Our pediatrician who knows kaeden, supports our family, decides it's time to take retirement. The only good doctor news lately is that the last time I went to our family doc for prescriptions, he wrote me 18 in place of the normal 4 or 5. I think he was getting tired of seeing my face on a weekly basis. Yeah, Kaeden's ritalin is a real pain in the butt. Each prescription must be written separately, on it's own form, and because it is a controlled substance, you are only allowed to have a minimal number at any one time. Cue Belgian government here. Yeah, stupid. For the docs it's a real pain, as each visit with us takes up an entire stash of their prescription books and a good 30 minutes writing time. Plus, their hands get tired. All that writing: Ritalin 10mg, Big box, hand signature. and they have no energy left to pick up their tools to help the next patient. Kaeden goes through one box in 3 days. If they don't want to see my mommy face with eyes that shock in PLEASE help me...I need the drugs...PLEASE...as I beg on hands and knees for one more little box to get us through the next few days. Yeah, he definitely needs his ritalin. It's the one drug we have given him in which I am 100% sure of the success.

Anyway, back to the hope thing. We're trying a new drug. Keeping all the old ones and adding a new in hopes of getting this kid of mine onto the right track, able to think and act instead of act and maybe think later. I don't like the medicine cabinet that has overtaken my kitchen cupboard. Boxes of this, that, and the other all line the shelves. And then, each day, I count out the pills and load them into my son's body, hoping they are doing their job, but never convinced of this fact. My son takes already 9 pills a day. 114 mg of medicine. Each for something else. Now add the new drug, Seroquell, and we're up to 10 pills and 139 mg. It seems a bit much to me. It seems as if there should be hope with just the 9 pills, the 114 mg. But it wasn't working.

Seroquel (http://en.wikipedia.org/wiki/Quetiapine), first taken on Saturday, brought out a few very angry episodes on Sunday. Nothing new, but I was aware of the fact that his anger started around 3pm and increased throughout the evening until he crashed completely Sunday night around 8:30. Monday, he awakened in perfectly happy spirits, completing all his chores with a smile on his (and my) face. In my mind I keep churning through all the possible reasons for this. Back to school after vacation. A good, long sleep for a change without his sleep issues depriving him of dream-time. Maybe it was just a good day. Or maybe, maybe, it's this new drug.

Today was not as positive as yesterday. But still, he was much more helpful, much more balanced, much more in control. And he was smiling and gave me hugs and kisses and his eyes shined with happiness. Last evening, again, he had difficulty from 5pm on. I could see the downhill progression of his attitude, his behavior, his control issue. And I know that we're probably going to increase the dosage today at his follow-up appointment. He seems to be successful until a certain point of the day, when it gets even worse as he struggles with the feeling of loss of control.

I'm not going to say, yet, that this drug is helpful. I need more long-term proof to make that decision. But, even though I don't like adding additional little mg's into his body, maybe this is finally going to be the one that works for him, for his body, for his combo ADHD and autism, which always seem to work against each other. I'm hopeful that something will give my son a chance to find a glimmer of peace, hope, success within himself. A little bit of self-control and self esteem. A little bit of understanding this confusing, stressful world. And maybe, just maybe, if this is one that helps my son, we can start to reduce the number of those other pills, quit filling his body with substances that are supposed to do something to help him, but can't quite make the cut. And I can stop reading the enclosed side-effect leaflets with a pit of worry in my stomach.

What is best? Giving him meds to control behavior issues, continually worrying what said drugs are doing to his body, or all of us dying a slow-death from stress and unhappiness? Neither seems the best option, but I can only hope, yeah, there's that word again, that we're making the right choice for our son and our family.

4.15.2009

Alone, But Not Lonely

It's quiet. Ocassionally I hear a car drive by, trying to get through the work crew fencing, only to have to back up and try another route. There are birds singing and that's the only sound I hear. It's quiet.

Jari is at soccer camp, Kaeden off to the city vacation club, Erwin back at work after vacation, and I am here, home, in my security zone. I hung out the laundry to dry in the sun which is shining ever so brightly and brings with it an energy force that makes me feel happy, makes me smile and able to breathe. The flowers I planted over the weekend are waiting to pop into gorgeous colors and I keep wandering outside to look at them yet again, hoping one more bloom may have appeared in the past 5 minutes.

It is quiet and my mind feels quietly involved. It is a peaceful feeling, knowing that through the trials I partake in on a daily basis, I still have this. This place of peace, this place that is mine and mine alone, my little piece of happiness stemming from my own inner self. When I stop to take a breath and stop to look around me, there is beauty, natural and unburdened.

Sometimes when I am alone, I feel lonely, apart, separate and distanced. Today, all I feel is a sense of well-being. I have had my family with me for the past 2 weeks, and today is the first chance I have had to be alone. Time for sitting quietly, sipping a cup of coffee, and not worrying about everything I still need to do. Not worrying, just engaging in the peace of this moment, this alone time, this freedom.

I am me, and I am okay.

4.14.2009

Free Book Contest



Okay, I haven't read these authors before, nor do I typically read romance books, but these could be yours for free...and anytime I can get a book in English, I make a grab... Go on, enter, you know you want to!

Fingernails

This weekend I took the time to paint my nails. It's not something I typically do as with my bad habit of biting I don't like drawing attention to them. However, I have been trying not to bite my nails, and decided to give myself a little color for the Easter holidays. Red, to be precise.

We were driving to oma and opa's house for Easter afternoon and I was sitting in back with Jari. He kept looking at me with a funny little glint in his eyes. "Do you like mama's nails?" I asked him. "Do they look pretty?"

He looked at me and shook his head no. "Why not?" I asked him.

"Those color nails are for some lady with a different body than you," he told me.

"What? Do you mean I need to be skinny to have red nails?" I asked him.

With a giggle and a furious yes-shaking head he told me: "Yeah, you need to be skinny to have red nails like that, mama!"

So much for feeling pretty.

4.03.2009

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.

4.01.2009

Autism Awareness Month

April is Autism Awareness Month. Though I feel that everyday should be autism awareness day, at least we can devote this time to bringing knowledge to people who still don't know what autism is. I feel that the majority of people now have had a glimpse into autism, yet the understanding and acceptance of this disorder is far from what it should be. There are many cynics out there who believe it is only a way for people to get money, those whom believe that it is the fault of parents. Neither of these are true, and if those people lived for one day in my shoes, or my son's shoes, or my husbands, my other son, or my extended family, they would view autism as a very real disorder, and one deserving of attention.

Here is a link to a very general overview about what autism is. However, what is written on paper and what families deal with on a daily basis are two very different things. Still, it gives a general idea about what surrounds autism.
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

Living with autism is something of which I have not yet come completely to terms with. Since my son's first behavior challenges when he was 2, to his disgnosis when he was 8, to the major struggles we face today when he is 14, I'm still evolving in this processing of autism.

Fourteen years ago, I held my newly born son, feeling the love flow through me as I first looked at his perfect, beautiful face. Thirteen years ago, when other mommas heard their babies first call them mama, I was still waiting to hear that word I longed to hear. Twelve years ago, when my son could outwit any lock and be gone in the blink of an eye, I thought he was just quicker than most kids, more skillfull. Eleven years ago, I was worried that my son was deaf and took him for his first hearing exam, only to be told his hearing was perfectly fine and his skills were on level for other children his age. Ten years ago, when my son was kicked out of his daycare for disturbing behaviors, I knew something was a little different, but held onto the hope that what everyone told me was true: He's just being a boy. He'll grow out of that. There's nothing wrong with him. Nine years ago, my son moved to Europe and mastered spaeking Dutch more quickly than any of the other children, and was mainstreamed into the regular classroom in place of the language classroom. Within two months, I was being called daily for problems. Eight years ago, my son would escape out his bedroom window and take off on his bike until all hours of the night as we frantically searched streets and alleyways calling his name, our little six-year-old gone again. Seven years ago, smearing was a daily ritual and no furniture, walls, or clothing was safe. We should have bought stock in Lysol. This was also the year he was diagnosed with ADHD and started on ritalin. Six years ago, my son was tested again and again, given play therapy, psychology exams, IQ tests, etc. He was in a regular classroom in our local school, but I was called daily about issues he was having, frequently of sexual nature. He had friends and playdates but was beginning to retreat into his own world more and more. Five years ago we moved to Belgium and Kaeden was placed in a special education program. Though the class was small, he continued to have difficulties fighting with other kids. Four years ago, we chose to move my son into a special school program for children with autism. He seemed to thrive here, but at home his aggression grew to the point that I was holding him in bear-hugs on a daily basis until he could calm down. Three years ago, Kaeden's verbal abuse began rearing it's ugly head. Words I had never uttered were being thrown in my face on a daily basis. His mattress found it's way downstairs more often than I could count as it was thrown down the steps in fits of fury. Two years ago, more doctors, psychologists, psychiatrists, counselors, government officials, teachers, became a lifestyle for me. The number of appointments we attended trying to help Kaeden get his fury under control was mind-boggling. My husband used vacation days to be my support during these meetings. Last year Kaeden was placed in an institution to try to understand his rages, try new medication, think up new plans to help him achieve success both at home and in school. This year, year 14, he's only become more dangerous, his fury resulting in physical abuse. This year, I called the police for protection from my son. This year he has been suspended from school. This year, he has been suspended from the bus. This year, autism is controlling all of us, and we have lost every ounce of control we had against it. This year, my patience with my son is waning. This year, I am finally realizing that my son needs more help than I am able to offer him, that my love for him is not enough. This year, I am truly fearful for what the future will bring.

I am a mother. My job as a mother is to help my children reach adulthood, to be productive and happy men. Autism has changed my job from simply disciplining, playing, and loving into a full-time battle. The days of seeing my sons smile and knowing everything will be okay, even if just for that day, are over. His smile comes less often, his vacant eyes stare back at me more often. He has no self control. He has no sense of right and wrong. Autism controls him. Our counselors and teachers and psychaitrists are all at a loss where to go from here. These are the professionals. As his mother, my hope is being clouded by daily calls from the school, explosive outbursts resulting in either a bruised ego or body at teh end of each day. My husband has come to the end of his acceptance, his patience with our son completely vanished, his faith in our child and his future success reverted to waiting for that magical age of 18 when he's no longer our 'burden'. My little guy, though taunting his big brother to anger, receives his fair share of slaps and kicks, and reverts to his sweet self only when Kaeden is not in our presence. And Kaeden himself, there are no words...he is my son, my little boy, and my love is not enough to help him find peace from within.

Autism Awareness Month. For us, it's nothing special. For you, it's a chacne to understand, to become knowledgeable about something which may not directly affect you, but indirectly affects us all. Affects society and the future of our world. Affects your tax dollars and health plan. Affects your safety. Please learn about autism. Try to be the one that makes a difference. Even a smile at a mother as her son shows a meltdown in the grocery store is a reassuring difference that you have the power to make. It's Autism Awareness Month. Do something about it.