Erwin

Today, I can't stop thinking about my husband. When we went to the city hall yesterday to get our new residence permits (oh, what a story in itself...do you think ther eis a little box they can click on for someone like me to renew my permit? Oh no...there is nobody in Belgium with all my 'credentials', and the program was not made for a person with my dual-nationality, living in yet another country. They can't renew my permit...not without first contacting government officials to find out how, when I'm such a starange case...). Anyway, back to my husband.

We're standing there with our passport-sized pictures and Erwin says: Who is that guy? as he looks at his old residence card. He pulls out his new photo and we both look at the two very differnt faces starign back at us. "I think this guy is his dad," he says pointing at the new picture. "geez, I sure have gotten old."

Yes, my husband has gotten older. In the course of the past five years his youthful face and curly brown locks have given way to a bit ruddier face, a bit heavier and his brown curls have become infested with gray. He doesn't look like a little boy any more. He has the worry-lines of fatherhood etching his forehead, his eyes filled with doubts about how to best support his family. He has aged.

Yet, when I look at my husband, what I see is not an 'older' man. Though he'll reach the big 4-0 this year, staring back at me is someone who has worked hard, given his all, and made a good life for his family. He has been a success, and when I look at his face I see the most handsome man in the world staring back at me. He has allowed me to stay home with my children, to return often on American adventures, to open up a world of exploration for our family as we travel, sometimes within our own land, sometimes further into the great wide open. We have become more acquainted with each other, learned how to get along and have created a life of security within our family and our home. I see a father who never gives up, even when the going gets really tough. I see a husband who holds me at night in our bed as we discuss our weekly plans, laugh at silly things our boys have done, or he tightens his grip on me when I am flailing. I see a son who regularly makes plans with his parents, giving into his desire to just stay home to make sure everyone keeps the bond we have captured.

When my husband leaves the house each morning, giving me my daily dose of kiss with our goodbye, heading off to work to support our family, I don't see some middle aged guy starting to slow down a bit. What I see is a man I admire. Someone I am still in awe of all these years further down the road. Someone whose brown curls have gotten greyer, yes, but with each grey hair comes an even deeper sense of stability, strength in our marriage, and commitment to each other.

Nope, hon, that picture of you as a young whippersnapper has nothing on the man you have become, the man I love today. He just helped get you here, those mere five years ago. Give yourself five more years...we can share another laugh as we stand at the city hall with yet another new set of pasfoto's...you've earned those grey hairs!!

Citizenship

Tonight, we are going to renew our residence permits for our lives in Belgium. That means that I have officially been a Belgium resident for five years. Five years...and in one breath it seems like just days, while in the next it feels like a lifetime.

As a citizen of the Netherlands, Erwin has the right to work and live in any of the European Union countries. After I obtained my naturalised citizenship as a Nederlander, I was also granted those same priviledges, though I was partially granted rights just as the wife of my husband, even as an American citizen. Our children have these rights as well, though upon turning eighteen they will be forced to declare which citizenship they choose, rather than having the advantage of being Dutch-American citizens.

This to me is a bit strange. They are born dual citizens, why should they have to make a choice over which countryman to become and waive their birth-given rights? As their mother, I have been granted dual citizenship, simply by following the integration program rules, paying fees, and being married to my husband. I was not given these rights at birth. I will also not be forced to revoke these rights. But my children will. If I can be granted dual-citizenship, I feel it should also be granted to my children, for their entire lives, and not just until the day they reach the age of adulthood. At the age of eighteen, will my children have had the oppotunity to have explored and become knowledgeable enough to make such a life-altering decision?

I realize that the majority of people are born into a country and never have the freedom to choose which country they want to honor. But, my children were lucky having parents of two nationalities to give them a beneficial start in ife; living and learning two cultures, living and learning two languages, living and learning two lands. In our case, three with our move to Belgium. However, at such a crucial age as 18, when one begins making their own choices about life, begins making a career track and setting off on their own to explore life, it seems that taking away their choice in a matter as important as nationality is unfair. They haven't had the option to explore both lands and make an educated decision about which they want to make their own. And once that choice is made, it is extremely difficult to make a change, if at all possible.

This situation makes me a bit sad. Since my children have lived their entire lives growing up in Europe, it would be very inconsistent with what they have lived and learned to make a choice to become American citizens. Though they are still young, I can already ake a guess as to what choices my children will make in the future. Kaeden may actually lean more toward America, being that he has had an opportunity to live there, and has the patriotism to America in which Jari is lacking. Jari, without even a doubt in my mind, would choose to make his home in Europe. And, because of my dual citizenship, Erwin and my choices are much broader than those of our children. Will we have the opportunity to one day live in America as we hope, and leave our children and grandchildren behind in Europe? Or will we, because of government regulations forcing our childre to make a choice, also be forced to remain on European soil in order to protect our family unit.

This sounds very irrational. I was born an American and made a chocie to become a European. Both places are embedded in my heart, both I consider my home. But I left my family, I left America, to create a new life with my husband and our children. My children could very easily resort to the same. But, knowing what I now do, I don't want to lose my children to the soil on the other side of the world. I want us to remain a fmaily unti within bounds of being physically present. What happens when each of my children choose another route in life?And most especially, what happens to my autistic son when he makes a choice to be an American citizen and I am living on European soil?

In any case, it's something to consider after five years living in Belgium. I wonder where I, my huband, and my children, will be when another five years rolls around.

Cows

These here are cows. Bet you already guessed that? But there's something special about these cows, that you don't see upon first glance.

Friday my boys and I took a picnic lunch, our bikes, and excessive amounts of energy with us to the woods. We rode 5 miles which I wasn't sure Jari would be able to manage, but he did wonderfully. And we parked our bikes and headed off past the watermill into the heavily wooded paths to find the perfect spot for our picnic, which was a total surprise. Kaeden created our lunch, and I wasn't sure what to expect, but as he uncovered all the items in the cooler, I was in disbelief. Not only had he brought along everything we needed for a picnic, but he even brought jars of mayonnaise, a bottle of ketchup, and a beer complete with bottle opener for mama. It may have been a bit overdone, but he was so proud, and we had a wonderful little picnic and after a trying morning at home, both my guys suddenly turned into adventurous explorers and everyone's moody attitudes quickly changed from tearing-my-hair-out irritation to relaxed excitement.

We started a walk through the woods, pausing to play tag and hide and seek. We gathered sticks and stones and walked over logs across the water. We had races and then began the quest...the quest to become knights who could defeat the witch who lived in the forest. Our sticks became bows and arrows, swords, and hatchets. We crept along keeping the witch in our sights, waiting for the perfect moment at which we could surprise her and rise victorious.

As we continued our jaunt through the woods, we arrived at a field with cows. The cows were traveling with us, staying back a ways from the fence, but trotting with us as we walked. "Those cows are in our army," I told my boys. "The witch can never esacpe now." "Nope," said Jari. "Those are not just cows mama. Those are monster cows. Kaeden and I used our special computer to surge them and now their horns have special powers. Those are superhero monster cows!" So, now you know. My boys are a bit like Inspector Gadget. They have a special computer which they can whip out and control animals in the woods, and control those animals to defeat a wicked witch of the European west. How's that for a dose of creative thinking and fantasy play?

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.

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.

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.

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.

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.

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.

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.

Exploring Europe

Welllll, I have been busy! It is a good busy, entertaining a girlfriend from 'home'. She arrived Sunday and we're off exploring Europe. I always love hearing someone exclaim at all the interesting things they notice about the differences between Europe and America. I have forgotten many, and it reminds me again from where I have come, and how far I have gone. Both literally and mentally. It makes me appreciate all I have been handed on my plate, the good life I have built for myself and my family. And it makes me feel proud, seeing my achievements through another woman's eyes.

We have thus far visited a cathedral, a castle, cube houses, Erwin's parents, a war museum, a Yugoslavian restaurant with all my girliefriends in attendance. She's been here 2 days. Think I made a full-schedule? You bet! I love sharing my new home with people, giving them the same adventures I once only dreamed about. Knowing that when a friend comes here, they are being given an opportunity to live a new culture, see new things, and beome better world citizens, be more understanding of the differences between people, or maybe the complete spin, and how we're all the same.

Tammy has been my friend for 13 years. We have weathered many a storm together, and shared much love and many smiles in our book of life. We have also shared many tears. Yesterday, while circling through teh war museum, we shared more tears, looking at the pictures of the war cemetaries, people standing beside soldiers protecting them from harm. Europe is alive with history. The tanks and planes that served in WWII show how two separate worlds came together to do big things, to bring conclusion to a disastrous world Hitler initiated.

And now, standing on European soil, Tammy is able to do big things as well. No tanks are needed, no planes dropping bombs. With her eyes, ears, nose, mouth, and hands, she is experiencing life as Europeans experience life. She is learning, about people and countries and cultures. She is taking it all in, and will go home with a new insight into life. It is something she will never forget. It is something that is stronger than war. It is understanding.

I am glad I am a part of making this all happen...and I am glad I have my girliefriend by my side.

Conversations

Let me set the scene. I am lying in bed with Jari, reading him a bedtime story. He's fidgety, not completely concentrating on the story, when he pipes up:

Jari: Mamaa....?
Mama: Yes, Jari?
Jari: I know something you don't know. But you can try to guess. I'll give you three chances.
Mama: So, what am I supposed to know?
Jari: I know where the very biggest volcano in the world is.
Mama: Hmmm, you're right, I don't know. But let me guess? Hmmm, Japan?
Jari: Nope (holding up three fingers and folding one down)
Mama: America has some big volcanoes too.
Jari: Nope (folding down yet another finger)
Mama: I dunno...uhm, India?
Jari: hahaha Nope (giggling as he shows me a fist with no more chances)
Jari: The biggest volcano is in Africa.
Mama: Africa? I don't think so. Where did you hear that?
Jari: Nobody told me. Just my brain. And I have golden brains!
Mama: haha Golden Brains?
Jari: Yep, and they are very smart and know everything and then whisper it in my ear.
Mama: Well, I think they whispered the wrong volcano in your ear.
Jari: Nope, Golden brains know EVERY-THING!
Mama: Hmmmm...
Jari: Yep. And know what else mama?
Mama: What? (wondering if we're ever going to get back to the story and try to fall asleep)
Jari: I can also talk to dolphins.
Mama: Talk to dolphins? How do you do that.
Jari: With my golden brains. And when I become a monkey.
Mama: You are definitely a monkey (I shouldn't have tickled him...)
Mama: (continuing reading)
Jari: And you know what mama?
Mama: Yes, I know what. I am going to finish this story.
Jari: But why did grampa shoot all the dinosaurs?

Mama: Goodnight Jari!!! It's time for your Golden Brain to go to sleep!!!

Reading English

I am blown away by language. Lately, when Jari picks an English book for me to read at bedtime, he wants to read it too. And I have been completely amazed at how well he is managing to read. Dutch and English letters sound very differently. He hasn't had any English training other than me speaking to him. And yet, when he opened his email yesterday, this is what he read from Gramma. I am truly amazed.

New Ideas

I am so impressed with our new autism counselor. She is to the point and honest and I feel like she could really work well for our family. After 3 visits, she is the first to offer me a bit of assistance achieving not only ideas, but the carry-through of those ideas. She speaks candidly to me and to Kaeden, and though I try not to get my hopes up too high, due to the major disappointments we've suffered in the past, I am feeling really good.

Today when she arrived she immediately asked Kaeden to recount the appointment last week and what her reason for being here was. She discussed the plans we had made and went through each one, asking each of us in turn how it worked. When I told her of my confusion in how to use a certain plan, she accepted the criticism and looked at another way of working it. She remains firm that she isn't a miracle worker, but does hope to help restore some peace into our home.

After discussing some of the negative events surrounding our week, she told me she'd consider some ideas and come back to me with possibilities next week. She doesn't dive into anything, but wants to consider what may best work for our family. She is happy that we are trying to find help. She was thrilled when I told her my husband agreed to a weekly one-hour playdate alone with Kaeden, after voicing my concerns that he is just no longer willing to put in an effort. She told me that his dedication is exactly what we need to seek out changes. That my devotion is what will see these changes through. That Kaeden eneds to learn what dedicating himself means, and that once he sees us carrying through with these plans, she has hope that he will find his way as well.

Today we agreed on a yellow and red card plan. 3 warnings and then a red card for time out in his room. This is to help the reaction and negativity in our voices during a conflict to no longer be an issue. We don't need to use words, and in fact, it is better when we don't. Kaeden will benefit from not hearing us 'belittle' him while he knows visually what his actions are doing. When we say no, it becomes a verbal confrontation. Using these cards, hopefully that confrontation won't ensue and Kaeden gets the idea without driving us to irritation which further thunders up the problem.

I can't say whether this will work or not, but the idea behind it seems really useful. I would love to have a system to create less conflict between our family members. Kaeden will no longer have the need to have the last word, as no words need to be exchanged. Words are used only during positive interaction. And she continually reinforced the idea that mama and papa are working hard to help our family, but his job is to follow through with the commands (cards) or he's just adding to his own discomfort in our family.

After she left, Kaeden adn I sat down and made our cards. I have them in my pocket, waiting for their first use. And I hope when our counselor returns next week, I can say that the system is working, that our family is in slightly better spirits and humor.

I'm interested to see what happens when the first red card is distributed...or even if the red card needs to be pulled out. Tensions are currently high, but can I hope some of it can be resolved by a simple stoplight system? I'll let you know...

White?

This afternoon I picked Jari up for lunch. As I waited, there he was jumping and playing amidst all the other kids. When his eyes met mine he ran towards me waiting outside the school gates. My hand clasped aroud his in an effort to protect him from the swarm of egotistic driving parents...and he looks up at me and says, loudly, within hearing distance of other parents: What did you to your hair? Did you get paint in it? It's all white.

I glanced around me, picking up the pace to head towards our home. "Mom, why is your hair so white?" he pried again. "Because that's what happens when you get old," I told him.

"Now you can be a gramma," he replied, running towards the basketball hoop to shoot a few of our typical lunchtime hoops. "But gramma's can't do this," I told him, popping the ball out of his hand and shooting a layup. Unfortunately the ball didn't go in.

I think it's time for me to dye my hair.

A New Step

Today is a different kind of day. Today is a bit of a new beginning. It seems right. It seems peaceful. It seems like I am finally ready to untie the strings of mama's apron and let him learn to fly.

We have a vacation from school for the Carnaval holidays. This is what I would compare to Americas Mardi Gras. The same celebration. The beginning of Lent and the arrival of Easter. And it's a busy time with parades and dressing up and parties and celebrations. We've attended 3 parades since Friday...and the boys have enjoyed becomeing someone else entirely and filling sacks of candy thrown from decorated floats. But today, there is no parade. There is no carnival. Today, there is a young man attending his school daycare, playing with children, eating lunch with new friends, riding the bus home alone. Today, for the first time, I have given up the need for false pretense of everything being hunky-dory, and allowed my son to go off on new adventures of his own, while Jari and I syat home to play and enjoy the peace that life without Kaeden brings.

That may sound hard and disheartening, but standing in my shoes, you may view it differently. I am giving Kaeden the chance to have new experiences, while allowing us a chance at a break from autism for these hours while he is away. It is the first time I have used the school daycare, and upon his acceptance, decided that it is time. Kaeden needs the security of having people choose what he will do, a schedule which can be determined in a school setting much easier than at home. He can play and have his lunch and do what they have already scheduled into his day. Jari and I played Monopoly today, we colored little puppets and played knights. We watched a movie and ate when we were hungry. Jari is now outside hammering away on a 'secret' project.

Kaeden is not home to dictate what will happen throughout our day. His mood isn't determining what we can and cannot do. We don't have to worry that a fight is on the horizon, or that if he doesn't eat right now our lives will fall apart. We don't have to give him reign of the bank during our game, or let him pick which movie we will watch. We can just relax and let things come as they do, without the added strain on our shoulders.

I am happy that I made this choice. I am happy that I finally feel Kaeden is ready to make advances into society without mama by his side. I'm a bit nervous about his solo performance maneuvering the bus system, but confident that with th schedule in his pocket, he'll manage it okay. And Jari and I, well, my little guy is able to be just that...MY lil guy. No big brother to overshadow him. No autism to stand over his head. Just a kid and his mama having a fun, relaxed day at home (or at the park, or on a bike ride, or at the ice cream shop...we can choose without worry of meltdowns and anger and glassy eyed sensory overload). This is the first step in the right direction. For all of us.

It has been a long time coming. For many reasons, we haven't taken this forward step. There are waitlists and red tape to jump through. There was a mama afraid of letting her son go. Afriad of sending him off into the world. But, as Kaeden grows and his issues become more evident, I am finally free of that tight hold I had on him. Emotionally I cannot handle more problems. Physically I can't tackle the stress. And it is time...we can all fill our new roles with a sense of security and faith. We can all be a family, with our own agendas. With our own space. With our own freedom.

And when the time comes, this is the step that will lead to Kaeden leaving home, living on campus, having his own life, still in my heart, still with my concerns, but each of us able to be free. And come together again at the end of the experience with more patience, more energy, more smiles to share. And a lil guy who knows what it means to live without autism commanding his life. Where a kid can just be a kid.

Autism Hope

I was getting a bit impatient. 2 o'clock had come and gone and our appointment was for 2. Then the phone rang: Hello, I'm sorry I'm running late. I'll be there at 2:30 if that works for you.

"No problem, see you then." I replied before replacing the receiver. Just enough time to go hang up Jari's clothes. I came back down at 2:20 still this weird feeling filling my stomach. I was both nervous and hopeful. Wanting change but leary of another 'help organisation'. And I wasn't exactly sure which organisation she was from. When 2:40 hit and she still wasn't here, I started pacing. Thinking: This is someone who works with autistic kids. How can she be this late when a kid with autism is sitting there waiting. Doesn't she know how worrisome that is for an autistic individual.

Granted, the appointment was only for me, but my nerves were on edge. I felt that grawing irritation that my son must regularly have to deal with. Every car that passed I ran to the window looking out...when finally at 2:47 she pulled up.

I answered the door with a smile. "Sorry for the delay. I am Anita," she said giving me a handshake. "Oh, no problem." I smiled at her. "That's how life is," I continued, wondering why I was putting on a false pretense of this being okay. Because, well, it was out of my hands, out of my control, and now she was here.

I led her to the couch where she asked me to discuss my son and what I felt were the most important issues we eneded to work on with him. Where she could maybe be of some assistance. "But," she added "You have to keep in mind we are not miracle workers, and the time we get with you will be minimal, so we can only do so much." My stomach started churning again. Then why are you here? I need a miracle. I need help. I need someone to take away all the pain and paint our faces with a smile. I need someone to fix our problems.

I told her about my boy. How our lives are in an uproar on a daily basis and we never feel relief from autism. How if it feels so overwhelming to us, what must it be like for him? How I don't trust my son, wory about what autism is doing to his little brother, the worries about whether my marriage can sustain through all the turmoils autism brings with it. I told her I have no faith in any of the organisations which offer help, even though I want to have faith, want to finally have someone give us what we need to help our son learn. Learn that stealing is not okay. Learn that it's okay to eat normally and there will always be enough. Learn that sex is natural but also private. Learn that there are authority figures whom we must obey.

And then, when I got done telling her all the things we need help with, a way to help Kaeden learn because he seems to be unable to grasp the concept of right from wrong, I started telling her more about my son. The things I love about him. How giving he is, how much he loves to help serve guests. How he makes little bead pictures for the neighbor lady, just because she smiles at him. How he never fails to befriend anyone he meets, whether in a grocery store line or walking down the street. How he isn't afraid to be who he is. How he doesn't judge anyone, how he grabs a game and sets it up knowing I will be there to play with him. How he still loves to sit on my lap and have me tuck him in at night, with songs, a story, and a kiss. How he still holds my hand when we walk in the city. How free he is to shout and run and play when we are out in the woods. How absolutely sweet he is with little kids and babies. How a baby animal on tv can send him into spasms of laughter, or tears. How sensitive he is to mama when she is sick or sad. How he loves to crank up the music as loud as he can and dance and sing when we drive in the car, his arms reaching out the window swaying with the beat. How he loves to prepare surprise meals for me and share a picnic.

My son is a treasure. He is a rough edged boy. But he is mine all mine and as much trouble as he has forced upon me, how much heartache I have lived due to his outrages, how much worry I have had to endure, the kid is such a treasure. Sometimes I forget to see through the daily struggles and look for the kid hiding behind those autism eyes. The one that brings me so much laughter, so many smiles, complete joy, a heat full of love. My son, my Kaeden.

"Goodbye, see you next week" I told the lady from the outreach program as she left my home. I closed the door behind her and stood in the hallway, lookign up the stairs. My son will be home soon. I can't wait to run to him and pull him into a hug. Let him feel how proud I am of him. Let him feel my love for him. I hope that when he arrives home, I will be able to touch him. I hope it won't be 'an autism day' and he pulls away. I hope his eyes will be clear and not shiny with the look of autism clouding them. I will make him a snack and have it ready and waiting on the table. That will make him happy. Then maybe I can plug into him before he runs to the comfort of the tv, sound blaring, out of reach. I am the mom of an autistic kid. My life revolves around hope.

Just A Different Kind of Tuesday

Tuesday, I woke early and got everyone off to school, work, and the train so I could share a day out with my girlfriend. We headed to a town not far from our normal haunt, but someplace else entirely and quickly realized we had made a mistake in our choosing. There was nothing to do. Not even any of the cafe's we came across were open. So, we walked through the rain and finally discovered a nature store open. Went in and had a peek around and ended up buying flaxseed oil. Why not give it a shot. Maybe I can remember something longer than a day. We then got back in the car and went to the outlet mall. There, we ended up shoe shopping, and though neither of us found anything we loved enough to buy (or was in our price range...darn Dolce and the 250 euro pink heels!), we had a fun time poking around. We made McD's our lunch stop, which was just what we both needed. Over lunch, the conversation was everything I needed. Girl talk. Two friends baring their hearts. A few misty eyes and many laughs. Friendship. Just what girls need. We headed back to the car in a flurry of snow that was already sticking to the pavement. Brrr....

And then we found the kringloopwinkel (second hand store). These are my very favroite places to shop. Sometimes you can find just what you need without knowing you needed it. I got a few English books which is always welcome, esp as I just finished my other 2 books this week. And a brand new set of Valentine's Day dice which I plan to extend to my husband and actually use them...Kiss, Lick, Touch...sounds like a winning combination to me. We'll see where it leads.

After dropping Lisa off at the train so she could return home, I headed to do some grocery shopping. I love grocery shopping when I have time and no kids with me. I can linger in the aisles and pick up bits and pieces while planing meals in my head. It's like a little excusrion for me. Pick up soem mushrooms, head to the meats, decide I don't need mushrooms and return them only to grab a piece of fresh ginger for something different. And since I wasn't hungry from my McD's lunch, not all that garbage made it's way into the cart. Which means it's also not littering my shelves givign me an opportunity to munch on junk the whole day through.

I then ran into yet another second hand store and found a BIG mailbox. Just what we need and have been considering buying for awhile. I was planning to hang it and surprise my husband. The tag said 4 euro: Keys at cashier. I paid for my mailbox feeling all proud about my terrific find, when I asked for the keys. Nope, no keys. Sorry. They pulled off teh sticker and handed me my box. I don't want it, I told them. What am I gonna do with a mailbox that has no key. Put a new lock on it, he told me. No thanks, too much work and expense for a used mailbox that will be scratched up by the time I am through getting a new lock on. Just retuen my money please. Easy to say, not so easy to do. I used my debit card and they didn't know how to credit the amount. Finally, after 15 minutes and me checking my watch as I had kids to pick up before daycare closed and another arrived home from the bus, I got the refund in change.

Off to pcik up the kids, got home and groceries put away. Kaeden made dinner, which he did amazingly well and completely alone. Spaghetti, with fresh mushrooms, tomatoes, peppers...his sauce turned out a bit runny, and his use of salt was too minimal, but otherwise it was delicious. Jari gave him a 9/10, and his eyes twinkled brightly!

Then we ran to pick Papa up from the train. Drove over our old bridge and looked at all teh trees they removed, all the piles of dirt for the arrival of our new bridge. Waited at the trainstation for a running-late train and danced and sang with my kids. The music was loud and thumping and my kids were happy little dance monsters as we all used our microphone hands to sing to our hearts content. Song on repeat...over and over...Lightning Crashes. We had fun. Saw Erwin walk out the other doors to our normal pick-up point, but we were parked in a differnt place today. Kaeden ran to get him and he climbed in back. The entire way home he did nothing but complain about my driving. Instead of getting irritated, I got sad. Why can't my husband just accept me. I nearly never drive...just once let me enjoy the experience, let me do it my way. I was going too slow, following the speed limit. We'd have been home by now if you wouldn't drive like an old lady. The happiness of my day out and play with my kids was stripped from me. The evening between us didn't improve and I ended up in bed early, anger stewing from within.

I realized my husband and I have some work to do on our relationship. Talked to him about it yesterday. We have to be kinder to each other, more giving, more accepting. Both of us have gotten to a point where we just don't care, trudge through life, not sharing those intimate moments with each other. It's time to crack down and put each otehr first, give our love and time, be happy together. I'm feeling refreshed, holding out hope for change, positive change.

So, that was my Tuesday. Just a little something different in my daily life. It was fun to be with a friend. It was fun to let loose with my kdis. It was fun to have use of the car. It was fun to shop. It was refreshing . A good day. And an even better future within my sight.

25 Things About Autism

I read this on a wonderfully informative, funny, and helpful blog I have been reading for a few months now http://teenautism.com/ . I thought I'd take her idea which she got off Facebook and give it a go. Thought it might help remind me how far we have come. So, here goes, my 25 list of autism.

1. WHERE DO YOU CURRENTLY LIVE? Belgium just over the Holland border

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX? Kaeden, age 14, autism/ADHD/ODD (though this is just to help get services, so they say)

3. WAS YOUR CHILD PROPERLY DIAGNOSED?Yes, by more than a few psychiatrists. First when he was 8, then again when we moved to Belgium a year later, and once again in 2008 when he was in an inpatient hospital.

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?I already knew somethign was wrong, but the term autism hit me pretty hard. I got the diagnosis a day before I was heading to America on vacation and didn't know what to do with it all. I held up fine until I called my mother and told her...then tears and frustration came flowing out. Why me? WHy him? What am I supposed to do now? (And these same questions still arise in my daily struggle yes, still, with this autism stuff)

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD? Not knowing when he is incapable of comprehension and when he is using it to his advantage. The struggles between my husband and I regarding how to deal with him. The susceptible position of my youngest son dealing with his autistic brother.

6. WHAT IS THE BEST THING? How very giving my son is. He does not judge anyone and accepts all people regardless of background, race, religion, handicap, weight... That when we have a good day, it's a very good day for everyone and it really gives us a chance to feel like what I always imagined being a family was supposed to feel.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?I haven't tried GF/CF. I have a hard enough time making it through each day without dealing with something that would cause me spasms...that's not to say we don't limit his intake of certain foods, but not totally GFCF.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?I have been reading more about this stuff, but I'm not totally convinced and don't know what some of it is. I have already tried so much, and what will make it different this time around?

9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?Here in Europe, I haven't been given the exact term ABA...but we do use numerous forms of behavior modification. I think that the one that works best is rewarding Kaeden with games, either with us or computer, as he completes tasks which are daily essentials. The problem with Kaeden is that he quickly tires of routine (NOT typical autistic, i know), and these things work out only temporarily in most instances.

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?I don't think any autistic child is the same, so my best advice is to remember that what worked for one, won't necessarily work for another. You have to do what you feel is best for your child and just have faith with yourself. You do what you can afford, both financially and mentally, and you do it for your child. DOn't beat yourself up if you don't try everything out there. You have to make it work best for your family. That's not to say don't try new things...there is always room for improvement. But don't get puilled into having to try every latest new thing. Everything is not going to work.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?I just assume what I read is true...1 in 150 in the US. This scares me, but makes me more hopeful that they'll find the cause.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?Kaeden. But there are at least 2 others I know of in our small village.

13. HAVE YOU EVER MET A RECOVERED CHILD?No, not yet.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?Kaeden attends a school for handicapped children...all handicaps. Throughout grade school he was in an autism classroom with strict scheduling, but now in middle school he is in a mixed class which seems to suit him a bit better than the structure (yes, again, I know, not typical). He does relatively well in his studies though his behavior gets him into trouble. He is kept in separate areas for breaks and lunch to try to keep teh problems at bay. In his middle school program, he is in one of the lower levels of education. His studies will lead him to work in a social workplace. This is one of the very hardest concepts for me to come to terms with. I want him to be more 'accomplished'...but for me, more than for him. Kaeden reads at a 2nd grade level, but his math skills are much higher (though not as high as his age-level peers are currently at)

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?Our health insurance is a government-wide social plan and this does benefit us as a family. Kaeden's services and treatments are always partially covered by insurance, though out of pocket expenses are still astronomical. The biggest problem is the extended wait-list for all services/treatments.

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?That is very probable to me. Dealing with an autistic child takes a lot out of you individually, leaving little room to engage in marital relations. Plus, as in our case, we both want what is best for our son, but both have different ideas about how to reach that. And I also find myself needing someone to blame and in my fear and frustration my husband becomes the recipient of my anger. I know this is unfair and I know it isn't good for our marriage, but sometimes it's the only release I can seem to find.

17. DO YOU HAVE A GOOD POOP STORY?No good ones, but plenty of bad ones. Kaeden used to smear until the age of 9ish. That was always such a nice surprise, those decorated walls, blankets, furniture, floors. I don't miss those days at all. Today, he is about 90% daytime toilet trained and still wets the bed head-to-foot nightly, even with diapers.

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?I can't think of any single example. However, I get so frustrated when I am telling people how awful I'm feeling and all they do is remind me how sweet he always is when they're around. Sometimes I just want someone to say "I Know"...even though I know they really don't know because they aren't living it.

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”I can talk for hours about what autism is, and how it affects my son and our family. Depends how deeply I know the person the level at which I explain it. Currently, I am trying to help my younger NT son understand autism. I think that when he gets big he'll be able to give a perfect one sentence definition having lived it his entire life.

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?I love Tanya'sanswer here from her list. The siblings... my younger son. These kids have to deal with much more than they should have to living in an autistic family. They are forced into situations they should never have to endure. And they come out stronger because of it. I also admire the school counselor who, though I feel he lets Kaeden get away with too much, does everything in the best interest of his autistic compadres. He has been a guiding force in Kaeden's school career from the start, is at all the meetings, and puts his everything into making my son feel loved and involved. I really admire him for his work.

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?Honestly, in our community, I'm not very happy with any of the organizations that deal directly with autism in which we have been involved. The one I have not yet used but hold a lot of hope out for is the Saturday daycare giving parents of kids with autism a break. We're going to start using their services soon.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?Yes and yes. I just don't know so just follow the guides. I'd hate for it not to be related and then end up with a deathly sick kid from somthing he could have been immunized against.

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?Yes, I am very vocal about my son's autism and have a very open relationship about it with my entire family, including extended. The majority of them are very supportive in our life with my son. Even those who have difficulties with my son seem to have come to terms with the fact that he is 'different' and are learning to accept that this is just how it is. Most though, do not have a clue hwo difficult life can be, and because they do not deal with it daily can't believe some of the stories I share with them. Others like to remind me (sometimes too often and too heartily) that Kaeden will never be who I dreamed for him to be. But all of them are loving and supportive of my son and our family.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?That patience really is the key and that patience is easily depleted. I also know that as the mother of an autistic kid, I too often let autism rule my life and overtake every piece of my emotionally. Parents need a break from autism. And couples need to share more than just autism together. And the siblings need to have time away from autism as well. And that when Kaeden is having a bad day, we're all gonna have a bad day. And there's just no getting around that.

25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?Completely honestly, yes. I just haven't totally come to terms with this whole autism thing yet. I hate how much pain it has inflicted on our family and my son. And I am scared of the future as well. I can't see a future that leads beyond the fights we are having today (not just together, but also with the system, the organisations, the 'help'). If Kaeden didn't have autism, our lives would be much more balanced. I don't wish he were another person, just that the side everyone else always sees was able to be ever-present. That he wouldn't hold it all in until he was safe at home and able to release it all. That I could just be a mom, and not the mom of an autistic kid. Becasue as much as I love my son, it's very hard, draining work. And sometimes, I can't see the end of the tunnel.

Strength

Sometimes, it really takes a major event to make you look at your life and be thankful. Some of the most tragic occurrences give us the chance to rethink what is meaningful and important, help us stand up and get on the right track. This happened to me this week.

My gramma is someone with whom I have a very deep connection and bond. She is someone I have cried to and laughed with throughout the years, someone who has been steady adn ever-present in my life. And we have an even greater connection since I moved to Europe, where her roots are. She was a real-life little orphan Annie, and grew up in an orphanage outside London from the time she was just a baby. At the age of 16 she was released to help out as a seamstress during the war. She tells stories of this period of her life and I cannot imagine the courage and strength she needed to just get through each day. Of bombs going off and sirens blaring as she ran from place to place looking for shelter. And yet, during this crisis, she managed to meet and fall in love with my grampa. At teh age of 19, she left her life in England behind for the life of a farmer's wife in Wisconsin. And so the story goes.

Wednesday, my gramma was rushed by ambulance to the hospital. She had suffered a stroke and was in critical condition. Her strength has stayed with her, and yesterday evening she was conscious and seemed to be recovering. Feeling in her arms was restored, her voice came back though not completely clear. I spoke to her as someone held the phone to her ear and I heard the stuttered, quiet words that made me once again able to breathe: I love you sweetheart.

When you think that someone you love is being ripped from your life, another you steps up to the plate. Someone with more courage and more understanding and a deeper sense of reality. The despair and sadness leaves youa s you fight to establish a sense of rightness in your world. You strive to be a better person with hopes that someone else may be spared, as well as you in the process. You realize that the only thing that matters is those that you love. Nothing else is as important.

Today, I called my gramma's sister. She is 89 years young and still lives in London. I was to be the first to share this news with her...and I was frightened because though they are half-a-world apart, these two sisters are close. I didn't want to give her worry. As I heard her voice on the other end of the line, I suddenly got a wave of strength as I promised her that her sister';s health was improving, that she should be fine, that there is no reason to worry. During this call, I awakened myself to the promise that these things I was saying were true. My gramma is still alive. I still have a chance to share more of life with her. I am happy this is true.

What hit me even stronger, though, was that I made the connection that this will, in time, if not today, become a reality for me. I will lose someone I love. I will come to terms with their presence missing from my life. But I don't have to lose that person entirely. All the memories of the times we have shared are stored in my mind. All that they have passed onto me are alive in the form I take and the manner in which I live my life. If I am strong, so were they strong. If I am weak, I am failing what they tried to give me in their time on earth.

Today, my gramma is here on earth with me. I am thankful for her strength. But when the day comes that I must continue on without her, I will remember all she taught me and bring her back to life in the happiness and faith with which I lead my own life. I have learned so very much from her. And the thing I know without hesitation is that she is a woman of great strength and courage, and she would insist on me being the same. Today, I hold my shoulders tall with a smile on my face as I try to be just a little bit of the woman she was...and continues to be.

GSM

Let me set the scenario: Opa picks up his cell phone from the cupboard. The boys are there, being little snots, trying to play keep-away with his phone. Opa says: You don't try to take someone's phone. (Or something like that...I was only kinda half-involved in the encounter, so I dunno the ENTIRE story...but just something like this...you get the idea....)

Jari: That's not a phone. It's a GSM!

(GSM is the term used for cell phone here...dunno what they call it in the US. Just like texting is called SMS here. See why I am falling behind teh US jargon and have no idea what people are talking about 1/2 the time?)

Storyteller

I was watching my son as he stapled together blank pages of crisp white paper, folded in half to form a book. He proceeded to get his markers and a pen and amidst all his supplies he began to write. Lately, the one activity I can suggest to bring him joy is writing a story. He's written many lately, usually 4 or 5 pages and a total of 50 or 60 words. His stories vary from creative to journal entries of his day, but always, without fail, his name is contained in the pages of his book along with a drawing of his house with the number 6 next to the front door.

I cannot get through reading one of his stories without a smile spreading from one side of my face to the other. They contain little secrets into his soul, and some of his thoughts are so simple, yet deep. All of his stories are a link to his life today, how he sees the world, what activities have stayed with him throughout our day to day happenings. They capture my little boy in a way that I have never before been able to see him. I can now read him through the pages of one of his books.

What I find most interesting about this newfound joy is the similarity to my own childhood days. As a little girl, my favorite gifts were paper and writing tools, and I too would bind them together to create teh pages of a book. I started writing very young, and by the time I was in 6th grade I had written some truly detailed, long stories. They were my pride and joy, and I would spend hours upon hours trying to perfect the characters and the scenarios. One story I wrote was in 5th grade. It included much dialogue and took me ages to perfect. It was a school assignment in which I went above and beyond the call of duty. I spent weeks writing this story about a girl on a horse who has an accident and ends up in teh hospital trying to regain use of her legs. When I turned in the completed work, I rememebr the feeling of pride as I showed it to my teacher, the pages upon pages of carefully written words. He responded kindly, telling me he couldn't wait to read it.

However, after a couple of weeks and the other students all having their copies returned, I was becoming impatient. Daily I asked my teacher if he ahd read my book. He finally acknowledged that he had read a couple of chapters, but he couldn't finish reading the story. He described to me a family emergency which took place only weeks before, in which his sister-in-law had fallen from her horse and was in critical care in the hospital. He said that my story was eerily similar, and he couldn't get through the pages without a sinking feeling in his heart.

I was so utterly disappointed. He was the only teacher available to read my work of art, as I was schooled in a two-room school in the middle of timbucktoo. There were 11 students in grades K-6, and he was the only upper grade teacher. All teh work I had put into my story was a lost cause. I was heartbroken, because though I had written numerous stories previously, this was the first in which I put my heart and soul, and so much time. My story was never returned, and I went on to the following grade always wondering where it landed.

So, now my own son is a budding author. And I am so proud and have the same emotions rushing through me as I read the words which link me to the importances in his life. Stories of birthdays and Christmas and soccer and playing games. Stories about animals and dinosaurs. Stories in which carry many grammatical mistakes. Stories which contain many spelling mistakes. Stories which come from a child's mind and heart. Stories which are written by a child who could not even read just one year ago. He has come so far, and I am just thrilled that my son is following in my footsteps. I believe in writing, and it has always been a part of my life. It leads me to freedom and sanity. It gives me hope and helps me work through difficulties. And it makes me smile. Jari's books also make me smile. I hope when he reads his first works years and years from now, they'll still put a smile on his face, just as they do today as he comes to share with me another of his creative endeavors.

Just The Two Of Us

Your hand encased in mine. We walk over the sidewalks, never straight but missing bricks or too high or with a gap, in which mama inevitably stumbles into. You laugh. "Mamaaa, what'd you do that for?" Looking up at me with your wide blue eyes and a smile on your lips, chapped and cracked from the winter, your hair long enough that it's falling into your eyes. "I can never stay out of those cracks" I reply, giving your hand a little squeeze, the warmth of it filling my entire body with the heat of a thousand suns. "I can. Watch how I do that." And you begin to watch each step, jumping over one brick, gliding into another, concetration etched on your face. Your hand never leaves mine, though it flips and tugs about as your body does this dance. "You know what? When I was a little girl we played a game. You had to never step on the cracks. And you say: If you step on the crack, you'll break mama's back." Your eyes, with just a twinkle of a devilish grin, join mine as you purposely step on a crack. You meet my gaze with this devilish achievement, and a hearty giggle escapes your lips. "Hey, are you trying to break my back?" I ask as you pounce ahead of me and I chase after you, dodging people coming at us from the other side of the sidewalk. "Hey, you better get back here..." and I continue on, trying to capture you as the most glorious sound in the world flutters into the air...your giggles. I can't get enough. I'd play this game forever.

We go into each of our destinations, coupled with our hands locked, our conversation comfortable and easy. Where are we going now? you ask. We still have to go to the postoffice I reply. And we head in that direction as you suddenly veer off to enter the 'old' post office doors. Hey? Where you going I ask? This isn't the post office. Yes it is...you continue to bounce along, you never ever really just walk. It's either a ful-fledged run or bouncy jouncy steps. You grasp at the door handle and tug. Hey, it's closed. You look at me for confirmation, and I shake my head. Uh-uh. See, I told you that wasn't the post office. It moved. We have to walk around the corner and go up the steps to get there. And again, you grasp my hand into yours and look upward, commenting on how tall those buildings are and notice all teh possessions lining the balcony windows. Are we gonna go all the way up there? And a we reach the staircase and begin teh climb, you race ahead of me. You covet so much energy, I don't know where it comes from. At the top, I look for you, wonder where you've gone when you peek out from around the barrel sitting there with a loud BOO! Did I scare you, mama? Yes, you sure did, I exclaim with my hand over my heart, a stratled expression on my face. And you laugh, again giving me the fullest happiness I could claim to feel. What you don't know, is that though I know youa re there, when you are out of my vision my mind begins to juggle the worries of a mother...could someone have taken him. Does he know cars could come at any time. Be careful so that heavy door doesn't smash your fingers. Yes, you did scare me, but only within the realm of mother worries, quietly tempered the moment I again see your face.

Our day, ever so ordinary and not anything unique, reminds me of the greatest love in my life. When I am with you and you're not daring your monstrous self to come out and play, there is something so completely beautiful about sharing my life with you. Nothing can compare. Nothing can bring me the warmth from within as the sound of your laughter, the feel of you hand in mine, and the sight of your devilish grin that makes my heart melt. Youa re now a seven year old child...and I know that this can not last forever, these sharing of simple moments, but I'll love you forever, I'll like you for always, as long as you're with me, my baby you'll be.

Thank you for giving me something that can never be taken, an always renewable source of energy for days that aren't quite as simple and peaceful. Thank you for your love, and for accepting mine. It'll always be here, always and forever. Please never forget.

The Inauguration

It was breathtaking. It brought tears. It brought laughter and hope. The inauguration of our new president, an historical event I shared with my sons, one which they will remember as a special moment in their books of life. They stood to salute the flag. The waved their flag as the crowds waved theirs. They listened to the speech President Obama delivered, Jari even commenting on how the 'th' sound was made. Kaeden watched me and asked if I was happy or sad as tears streamed down my cheeks. I told him this is a day in America that noone will forget. This is a day in which Americans are forced to look their part of disaster in the eye. Americans are forced to come together beyond bounds of race, religion, or belief. We have a new president. We have hope. Yes we do! And the promise of cake at the end was also plenty motivating!!!

Breast Cancer

I am so glad I have been writing about these deep feelings I've been having lately. Today, I suddenly seem to feel a bit lighter. It's nice to have a place where I can just let it all out and in the process relieve myself. I know that some people think all I do is whine about my life, others think I am depressed and sad, and still others may empathize with me a bit. But this is my place to just be me. I share myself and this space is my own. Though I know others read what I have written, I only do this for me, for my family, a journey of our life. I am in general a happy, fun-loving person. I know that I have been afforded an advantaged life. I am deeply in love with my husband, my children, my family and friends. I may get down, but I am not in a constant state of depression. This is just the way life rolls. Some days are good, some days are bad, and you take it as it comes and deal with it in the only manner you know how...until you learn new ways, better ways, of making your life an even more positive experience. I do this through my writing. By releasing the negative, I can hopefully get a grip on the positive.

Yesterday I had a downer of a day. Someone in my family whom I deeply love with all my heart and has been a constant in my life from my very first memories was diagnosed with breast cancer. She is one of those people who is so alive and vibrant, brings fun to every experience in life. She is not only a family member, but a very good friend, and someone I trust with my deepest secrets. And to learn she is going through this battle made me feel scared and sad and a little bit helpless.

She is in the early stages of breast cancer, and will be having a lumpectomy in the coming week. More news will follow as they learn more of her condition after the surgery. She has a teenage daughter, a very family-oriented husband,lots of pets, a job she loves and clients that love her back. She is very involved in life, caring for her elderly parents, taking a 3 mile walk eevry day, busy with ALL the kids in the neighborhood, a volunterr at an animal sanctuary. She hunts and fishes and camps. She loves water parks and roller coasters. And she has breast cancer.

I can't even find the words to say how it makes me feel. The disbelief and shock. The hope...oh, the hope. I will say an extra prayer for you today. I will keep you in my prayers in the coming days, just as I always do. And I will be ehre for you, to share some of those deep laughs that we have always shared. I have hope. Be alive as you always are, the life of the party, the one that always has a ready laugh and so much courage. This is a journey that is going to take courage. I have faith...it'll all be okay. And always know that no matter what, you are loved...