in pieces

i guess the time has come for a little pity party. i feel like crying big ole goober sobs to get it all out, but only those few little tears fall from time to time. and in one breath i feel so grateful, knowing i escaped death and made it out alive, while in my next breath i feel so shamed and irritated that this happened to me. it feels a bit like i won the lottery, but they're holding my winnings hostage and don't know when they'll be released.

today i went to the specialist. what he said scared me. numerous times, over and over again, he repeated what a major deal my injuries are, and how very careful i have to be if i ever want use of my left hand again. he didn't sugar-coat anything; flat out said: you have suffered a very major injury. when told i'd had 4 liters of blood transfused, he looked away and winced. when he deciphered the czech paperwork and realized the extent of my injuries, it was no more fun and games. he had me frightened for my future. minimal two years recovery, and 6 weeks of absolute nothingness if i ever want to recover. i managed to sever the most important nerves in my hand, along with the artery which has now only 1/2 use due to them directing it through another vein, and all those tendons that need to heal to help me have use of my fingers.

i was taken to genk to have a brace made. a brace which will limit my movement, yet give me more security. i was plastered up and can pick up my new brace saturday. the guy told me the pain can remain for the duration of my recovery. i was also told that my recovery could be from 0-100%. it's not an injury they have any way of knowing the outcome. i feel like a miserable failure, though i did nothing wrong.

my son has seen too much and had to endure too much in the past days. he is fearful of mama, fearful of snoring, fearful of ghosts, fearful of anything and everything. his white face as he ran to get papa to help after finding his mama covered in blood keeps repeating itself in my mind, and i try to understand what that must have felt like to a seven-year-old. at nearly 40, i was scared enough. but seven? he's seen too much, and the world frightens him because of it. all the security i have worked his entire life to create for him has been stripped away. i can only hope time will heal the nightmares he endures.

my in-laws, my omam and opap, have been a world of help to me. i think i would have fallen to pieces if they hadn't been here the last days. i feel so alone, so foolish, so helpless as oma ushers me off to bed to rest, and yet, it is what i need. a little break from the pain, from the drain emotionally this has taken. they have given jari attention and time, taken care of the laundry, and helped with dinner. even more, they have been a source of support as they hold down the fort i can no longer manage alone. they have been through enough medical traumas in life to truly understand how i am feeling, and offer me understanding which i seem to need right now. they have done the dirty work of being my personal assistant, chauffer, housekeeper, cook, and child care providers. how can i ever thank them?

legally, i don't know where we stand. opa is setting those wheels in motion. i want nothing more than the travel organisation to be held responsible for not inspecting the house thoroughly enough. i don't want another family to have this same disaster overcome them during the family time that is supposed to be most relaxing and fun. i don't want someone else to have to feel this insecurity, or this pain. cuz it hurts. emotionally, yes, but physically it doeesn't let up either. and will it end? or is my life doomed to taking pills in order to live? and how can i feel grateful when the ouch sometimes stops me in my tracks and i about faint in a heap of sweat on the floor?

i want to hold my baby in my arms and give him assurance that mommy isn't scary. that i'm just the same, with a funny looking arm. but when i take him in my arms, he doesn't gain assurance. he feels instead discomfort.

what happens when kaeden returns from america on friday? how will i manage both boys home all day with noplace to go and nothing to do? i could barely manage them during the school year when our bikes were an option to escape. and yet, they still have a mommy. so many people have told me how lucky i am to be alive. i'm not sure it is luck. i think god knew my kids needed their mom. i think i have an inner strength which surfaces when it's most needed. i think my husband deserves to have a wife to share a life together. and my parents and brothers deserve to have the daughter and sister they've known the past 38 years.

i am grateful. but i wish the tears would just come and release the pity and fear and then let me move on.

Class Reunion

This week marks a celebration. This is the week of my 20th class reunion: the class of 1989, Laramie Senior High School.

Wow! I can't believe how long ago it was that I donned my cap and gown and sat in that stadium with all my classmates awaiting the moment I would be finished with school. Done with books and teachers and learning. Done with all that high school bull of cliques and clubs. Done with being a child and running to the world of adulthood. Yeah right!

I wasn't done with books and teachers and learning. I wasn't done with cliques and clubs. I wasn't done with my childish ways. But I was done with high school. I was free from that era of my life. Free to move forward and start fresh with a new outlook on life. And that's just what I did, and have been doing ever since.

High school was not my favorite adventure. I wasn't a popular kid, but I wasn't a loner either. I was one of those kids who got along with everyone but never fit into any one place. I belonged to numerous clubs and latched onto those kids depending on what we were doing at the moment. Rarely did my after-school activities include parties or movies out with the girls or hanging at someone's house. I guess I was a bit of a loner, really, but not by choice, more by circumstance. I had moved religiously numerous times until junior high and found creating lasting friendships a difficult task. I was shy, but friendly. I was what my classmates would probably classify as a nice girl that didn't say much, if they even remembered who I was. I was also involved in school sports, the school newspaper, Junior Civitan , Art Club, and DECA. I was active in school, getting reasonable, even fairly good grades. I caused my parents little trouble and worked for them at their store after school and in the weekends. I helped coach kids soccer, and did a lot of babysitting. I was a pretty normal teenager.

Until recently, I haven't given much thought to high school, or all this business of a class reunion. As I said, I wasn't that close to anyone in my class, and none of those high school friendships have remained throughout my lifetime. I couldn't be bothered with going to a class reunion to pretend to be a successful woman in her own right, introducing my husband and kids, laughing as people remembered funny happenings from 'the day'. But recently, I have reconnected with some people from school via Facebook, and since getting to know them as adults, I have a slight desire to attend my 20th.

It is only slight, and a pang that doesn't really hurt in the least, but it would be fun to reminisce, see what people have become, see if people turned out to be who I thought they would, and rekindle a few of the friendships I did have back then but lost over the course of life. It would be fun to meet these men and woman I have come to know, not as those kids from 4th period, but as the adults they are today. It would be fun to remember what it was like being that shy kid in the hall, and looking at how far I have come as the woman I am today. It would remind me that being popular really wasn't important, having high school friendships, dates, and boyfriends made no difference. Who I became was not based on who I was then. I have evolved.

So, though high school may not have been exactly my cup of tea, I'd still like to attend this little reunion. I'm not, but I'd like to. Just to calm a little sense of curiousity. To see faces of which have aged, hair that has greyed, men and woman who have evolved. Happy 20th Reunion to the Class of 1989. May it be a weekend of mingling and enjoyment without the cliques and clans of the past. May it be a chance to make new friends while holding onto yourself. May it be a place to remember...and be glad you are who you are, regardless.

Smidgens

I'm going to do a bullet post. There's been so much going on and so much yet to come that I am a bit frenzied...too frenzied to write anything cohesive. So, he's a few rambling things in our house:

• Kaeden left for America. He did great! Jari and I spent the morning watching his plane prepare to leave and when I waved my very last goodbye as the plane flew out of sight into the great big world, one little tear trickled down my cheek before my little guy tugged on my hand asking "What are we gonna do now, mama?"



• We booked our summer vacation. It took us a lot longer than usual to get it all organized this year, but I am thrilled with the result. We're heading to 2 different areas of Austria over the course of 10 days, where we'll also have the opportunity to visit Italy and Slovenia. And that's not all, but then we're going to the Czech Republic for another week. I was feeling very down about not going to America, but that's left me now. I'm glad Kaeden is there and can represent our family, passing out hugs and kisses for all. And I get to go enjoy the cool of the Alps. And the cost will be what it would have been to fly just one of us to America.


• The weather: HOT! It hs been above 30 degrees (90's) this week with between 80-100% humidity. Doing anything productive results in streams of sweat dripping off you. I bought a small swimming pool which Jari and I have been enjoying, as well as keeping the house totally closed up during the day...but nights have been difficult sleeping as it just doesn't cool off.


• We went to a Roman Festival in Germany last weekend. It was really cool, with role-playing and costumes and a medieval camp set up. And it was huge. Just as the main event was starting a storm came thundering in. Literally. Thunder and lightning crashing all around as rain strted pouring down. And there was noplace to go to escape it. We were all soaked through from head to foot. As we started towards our car leaving the festival behind, we heard sirens. We later found out that lightning had hit close and two people died, 13 were injured right where we had minutes before been standing. We had a guardian angel watching over us. After we left, we headed to a store where we all got new clothes since we were all completely soaked. It turned out to be a very fun afternoon as a family, even as we mourned the losses of lives during the festival activities.


• Jari and I are getting prepared for the 4th of July. Yesterday we made him a t-shirt to wear, and he used so much paint I'm not sure it will be dry by Saturday. Though he painted it in himself, he asked me to help him write some words on it. Specifically, America, Jari, Kaeden, Papa, and Tera. When I did this he was mad. I wrote Papa and Tera (as he requested), yet it was supposed to say either Papa and Mama, or Tera and Erwin. Papa and Tera just isn't okay. And neither is Mama and Erwin. Today we're going to make something patriotic for a small-scale BBQ we're having with the family. Keeping it simple this year.


• Erwin came home last night and informed me he got a ticket. For what? Not wearing his seatbelt. And want to guess how much we have to pay? NINETY euro. 90 euro. Oh My GAWD! granted, it's the law to have it on and his own fault, and seriously he wears it 99% of the time, but he got caught. Too bad we have to pay that instead of going out to dinner during vacation. And to an amusement park. And...well, you get the idea. I think that 90 euro is really bordering on insanity for something like a seatbelt violation.


• Jari and I went to an interesting museum on Tuesday. I thought he'd be bored after 10 minutes once we walked in, but we were there for 3 hours and he was just considering wanting to leave. It was all about water and the Maas and Rijn rivers, and boats and fishing. They had a nature pond where the kids could fish and he collected all kinds of bugs and snails and plants and frogs. But, he wouldn't touch any of it. So mama got to do the dirty work. Then we hit Ikea for hot dogs for dinner. A perfect afternoon with my lil guy.



• Yesterday while JAri played with a friend for a few hours, I got busy cleaning out our shed. Ewww. It was much needed and I think I burned about a thousand calories in the heat. I'm so glad that lil job is complete. My next task? I'm going to brave Kaeden's room and empty it while he is away. That may be a job with extra supplies needed, such as masks and gloves. That is one messy boy I am raising. I can't believe how dirty his room can get with nearly nothing in it. But I am looking forward to getting the job done and having him return to a little piece of relaxation.


• My best friend wrote a post on her blog http://tamlynblogs.blogspot.com/2009/06/love.html I think it was in reference to me, and my feelings about her new relationship. I love my friend dearly, and I just want her to know that I totally support her in her quest for happiness. I totally support her in her quest for a life filled with love. BUT, I also support her in her need to go on a journey of self-discovery and self-fulfillment. I know that love can happen quickly, but I also think you need to take time to allow the relationship a chance to grow. You need to learn about each other and that can't happen in the course of just weeks. It takes time. And when she announced she was getting married, I was not even slightly surprised. Because I know my friend, adn I am thrilled that she has found someone she can count on, turn to, and who loves her. I want to wish her a BIG Congratulations, because yesterday when she gave me the news, I didn't even tell her Congratulations. Instead I said nothing and she asked me if I was mad. NO. I am not mad...but I do hope that you make sure to take time, my girlie, take time to be sure instead of jumping off the diving board head first into a shallow pool. I sincerely wish you and Richard the best. I sincerely believe you feel love. And I sincerely hope it's the happy-ever-after kind. Congratulations, Tammy and Richard!

So, that's it for now. My lil guy and I are going to head to the market this morning. We've got things to go and places to see and life to experience. And first I need to find him some pants..."Not short ones that show my knees, mama, but short ones that go to here (pointing to his shin), cuz I don't like those short ones that go to here (pointing above his knee)." Capris. He wants some capris. :-)

SO Proud!

This morning made me recognize just how far Kaeden has come in the past month since we've gotten his meds regulated. He is so much easier to talk to, so much more open to listening to suggestions. A month ago, I was completely unsure what to do with my son. Today, I am only slightly on edge.

Yesterday, after agreement with his teachers, Kaeden baked cakes to bring to school for a small end of year party he planned. He made them completely on his own, frosted and decorated each with concentration and even remembered his bus driver and the bus teacher, the school director,a nd his counselor. This was all completely done on his own, and from his own initiation. He asked for permission, from both the school and at home...WOW! I corresponded with the teachers to make certain they were okay with it, and the decision was made for the party to take place today.

Kaeden wrapped his cakes in aluminum foil, put them in a box, and left them on the table to bring to school this morning.

Except, 5 minutes after he left with Papa, I saw the box of cakes sitting on the table. He had forgotten his cakes. I was in a panic...was he freaking out, was he angry, was he crying? How would he handle the disappointment of his failed party? I considered jumping on the bus to get them to him at school, but then decided I would give him a call first.

I rang the school and asked to speak to my son. He came on the line. "Hi Mama, what's up?" he asked. "Uhm, Kaeden..." "Yeah, mama, I already know. I forgot to bring my cakes to school."

"I'm so sorry Kaed. Do you want me to bring them to you?" I asked.

"I already talked to my teacher. She said we could have our party tomorrow instead. It won't be as much fun, cuz we have the soccer tournament and can't have the whole party in the class, but she's going to bring them to the soccer field and when we have break, all my friends can have a cake." he answered me. He spoke calmly, he had a new plan, he was not upset or angry. He managed to overcome a huge disappointment and make a new plan, all without tears or fights or distress.

For most people, we experience disappointments in life, and learn to live with them. For Kaeden, and many autistics, the process of working through a disappointment is BIG, way bigger than his mind can work through, resulting in a day long fight within his own mind, extending to those all around him. But today, that fight did not occur.

Today I am so very proud of my son. What seems a little inconvenience is something I have greatly feared in the past. I worry for my son and the people around him when something like this takes place. And today, I feel only relief. He has managed to take a situation and live with it, accepting the disappointment and moving forward with a new plan to still bring some harmony. He has climbed a mountain far greater than I ever expected him to be able to climb. For that, I am grateful. But even more so, I am so very proud.

Living with autism is difficult, but learning to live with autism, that's something to be treasured. Kaeden, today you get two thumbs up! You reached the top, and I am so proud of you!

Freedom of Boys

My boys,

The wind blowing your hair as the trees swayed in every direction. Your faces alight with happiness in being out in the great outdoors, cheeks red from exerting yourselves in play. Your voices not quiet chatter, but deafening booms of explosive laughter as you played together, the sunshine in the background as darkening skies started crawling in. The playground empty other than your footprints in the sand, making 'smoke' as you ran, and ran, and ran. The grass on the fields battered as the ball flew left and right under your feet, the muscles in your legs tawt as you tried to keep up with its swoosh. The skateboard ramps roaring as you clomped across, filled with magic in the last dive to reach the top.The air alive, alive with your laughter, alive with your energy, alive with your freedom.

Freedom, freedom to be kids, freedom to run, and laugh, and play, and be boys. Hopping, skipping, jumping, running, from one thing to the next, no harmony, no focus, no rules, just freedom. And it showed, in the air surrounding you both, happiness. In your voices, excitement. In your smiles, pride. In your bodies, energy.

And in all my life, I will never forget the magic of our time together on the playground, a time of uninterrupted joy, nothing holding us back, allowing ourselves to scream and run and do whatever it was we wanted to do. Thank you for sharing with me a little piece of happiness. Thank you for showing me what love is.

Love, Mama

Het Hoofdkwartier- An Autism Exposition

Saturday we had a wonderful family day. It was one of those days where you just don't have any real plan and take it as it comes and it worked out like perfection. Everyone was happy and relaxed and it was a day in which gave me a chance to enjoy my family from morning til night.

We attended the Hoofdkwartier exposition, which was the only agenda we had that day. This is an exposition on autism and gives people an insight into how an autistic brain works. It is a head-shaped contraption made of steel in which you walk into and wear headphones filled with varying sounds while television screeens throw images your way. They also had some films in which autistic people spoke about what it means to be autistic and how it affects them, and numerous brochures and help-organisations available handing out information and sharing places you can find help.

This autism exposition was interesting. I am thrilled to see it being taken touring the Netherlands and Belgium, creating more awareness and interest in autism. The project itself is needed. However, I was a bit disappointed with the exhibit. Though the images and sounds can be somewhat hard to follow, with too much going on at any given moment, it wasn't as if I couldn't follow the presentation. I felt that the three screens which presented images were not enough to show the disorganisation of my own autistic son's mind. Yes, it was puzzling and a bit offbeat, with too much information thrown your way to really make sense of the entire presentation (example...there were images of 3 different people and their faces kept changing shape and form while the sounds on the headphones repeatedly told of who they were in a monotone voice, rather three voices at once along with other background noise), and yet, I was able to keep track of all three screens and filter out the unneeded information to make a bit of sense of the entire thing. I don't think that Kaeden is able to do this in real-life. I feel that he intakes so much information at every given moment, that he simply can't hear or focus on any ONE topic. The entire presentation had the right elements to describe autism, but in place of the three screens, I (and Erwin) felt that in order to really and truly show how autism feels, there would have been many more screens needed, completely surrounding you with various images. The three screens just wasn't quite enough.

This being said, I do not know how autism feels. My only experience with autism comes in the form of living with my autistic son. I think that I have a fairly good grasp on what it means to be autisitc, how disorganised life is living with it. How your brain is forced to process too much information until you are wiped out and either get angry because it is too much to handle, or completely close yourself off and keep your focus entirely on one thing (which is why I feel Kaeden often doesn't hear us...he completely tunes the world out so that too much stimulation isn't so unnerving). I will say, after being a part of the exhibition, I am glad I only havd to live in that world for those 10 minutes. Imagine your mind having to try to filter all that input every moment of every day. Imagine having to live in a place where your entire life you spend trying to filter out all the extra sounds and images, trying to hear the one important message through all the other sounds your brain intakes. It reminded me somewhat of this: I sit here typing, my mind is focused on the words I write, my fingers trying to keep up with the information I want to present in my mind...yet I hear the sounds of the keyboard, the birds tweeting outside, the cars driving by, the washing machine swishing, all the while thinking about how I would like another cup of coffee and then a dog starts to bark. If i focus on all those sounds and thoughts, my fingers stop typing because there is too much input and I can't think enough to write a sentence. My brain cannot handle it all and I have to pause.

But with autism, you can't pause. You live with autism, your entire life. Tjose sounds and thoughts and images forced upon you every second of your life cannot be put on hold while your brain readjusts. It just keeps coming at you, moment to moment, and the play button can never be put on pause, the whole thing just keeps fast-forwarding through your life.

When I entered the Hoofdkwartier, I knew it would be for just 10 minutes of my life. I knew I was being placed into a space in which I could leave anytime I wanted. I knew that I was there, experiencing autism, because I wanted to be there to gain more understanding of what it is like. Autistic individuals do not have the same freedom. They are not there for 10 minutes, they do not have the option to leave, and they aren't there because they choose to be there. But they do have to learn to live with it, survive it.

I don't think the exposition was done to the standard it could have been. But it was enlightening, and for people with no experience with autistic individuals, or no understanding of autism, I think it could be a very good tool to give them an awareness. Except, how to reach the people that need to experience this, need to learn more about autism? How to get those people that think autism has no impact on them to actually visit this exhibition? Tjose dealing with autism will be the first to want to experience it. Those who don't, will not feel the need to try to understand.

Here is a link, though it is in Dutch, about the Hoofdkwartier. It is a worthwhile project, creating awareness and a larger understanding about what autism is. And that, my friends, is the beginning of acceptance.

http://www.hoofdkwartier.org/

**I also asked Kaeden what he thought of the presentation. His only response was "It was fun." I'm not sure he understood that it was trying to project life as he lives it. But, he was very involved in the movies of other autistic people describing their lives. I hope that he learned, if nothing else, that there are more people like him out there in this great big world.**

Services? Where Are They?

I am so disappointed. Just got a call from the boarding school we interviewed with a few weeks back. They have denied Kaeden services. The autism blows just keep on coming :-( Why? They have a couple other kids with issues such as his and don't feel they have the capability to take on another. So, just where does my son manage to fit in?

14 vs. 7

"So, how do the experts tell you you should interact with your child in his 14-year-old body when his mind is only 7?" asked our psychiatrist yesterday morning when I took Kaeden for his appointment.

I sat there. I looked through the library of knowledge I have stored in my mind, the autism section doubling in size with each passing year. I put all those files through the fiche and tried to come up with an answer to his question. What is the best way to interact with my son? All the advice I have collected, and I didn't find the answer. There is no book stored in my library to help me accept that this is what I have been dealt in life. There is only information and tricks and ideas, but no book that is titled: How to deal with your child in a 14 year old body with a 7 year old mind.

"I don't think I have ever been posed that question," I told him. "I have never gotten an answer from an expert on the best way to handle this situation."

His eyes glanced towards the ceiling, as they tend to do when he is in thought. His pen stuck in the corner of his mouth, spinning at the tips of his fingers. His legs folded with a file folder of Kaeden and his life sitting on his lap, a fresh page of paper with just a few words written stradling the stack.

"I think," he began, "that as a parent you have to accept that though your son is living inside the body of a 14 year old, his mind is that of a seven year old."

I looked at him. I blinked several times. I glanced at my son, playing quietly on the floor next to us with some hot wheels cars. This is something I know. This is something I live every day of my life. This is something I feel in the deepest recess of my heart. And yet, hearing him say those words was mind-opening. It was as if something broke loose inside my mind and I finally really got what he was telling me. People always jokingly use the term 'man-child'. Still a child in a man's body. We refer to our teens in this way, their not yet formed ideals and values and life goals slowly taking shape, but housed in size 10 feet and size 32 jeans and a men's small t-shirt. These are boys, becoming men. Becoming men not just physically, but also mentally. Learning what it means to be a man. Learning to become a father and a husband with a career to boost their life dreams. Learning to be what a man is 'supposed' to be.

And then there is my son. A true man-child. Not the jokingly refered to form, but a true to goodness man-child housed in size 10 feet and 32 jeans and a men's sized small t-shirt...but with the mental abilities similar to those of his seven year old little brother. He hasn't reached the level of maturity of his peer counterparts. He still carries around his stuffed animals, still dresses in front of mama, still cries when he doesn't get what he wants. Though learning from the men in his life what it means to be a man, he hasn't attached that goal to himself, hasn't learned to think about the time he will be a man, a father, a husband in a career working to achieve his dreams. His capacity doesn't go beyond the here and now, what he wants to play this moment, what we'll have for dinner, how late he has to go to bed.

"You must engage the physical side of Kaeden," the psychiatrist continued. "But know that though he is housed in a man's body, he doesn't have the capability to think further than his mind will allow, which in his case, is a seven year old. He needs you to know him as his seven year old self. Though you see this man standing in front of you, you have to address him as you would the child living in his mind. He is incapable of understanding you at the level that his body is telling you he should."

I think this may be the most diffciult aspect of autism. I see a near-man standing before me. I have lived as his mother, teaching him, sharing with him, dreaming about the day he will be a man. But standing before me in not a near-man. Standing before me is the child I thought I had to give up all those years ago. Standing before me is my little boy who still wants to cuddle, still wants to sit on the floor and play with to cars, still wants to throw a tantrum if he doesn't get the cookie he so desired.

"Remind him that he is 14. Remind him what a 14-year-old would do in such a situation. Remind him what is normal for a child of his age. But, remind yourself that who he is is not who you *see* standing before you. Know that he needs you to be his mommy, the mommy of this seven year old living within."

A man-child. A fourteen year old body with a seven year old mind. Half of his life has been stripped from his abilities. Though I've known it all along, it took someone to say it to make me really *see*. My son, my little boy, always and forever.

Purse Personality

Today after Erwin and I got home from running all morning and afternoon, Erwin asked me for the GPS which I thought was in my purse. "It's in my purse," I told him, and he went off in search of it.

Only it was not in my purse. I remembered I had left it in the glove box in the car and went to tell my husband. I entered the kitchen to find his face stuffed into my purse and pieces of all my belongings decorating the table.

Along with my overstuffed wallet were a couple receipts, a bottle of contact fluid, empty candy wrappers, a baggie with bread residue, a piece of a leather belt, a bag of Drum, some ritalin, a pen, some pamphlets from our days out, and a gameboy. He pulled these items all out, the bag still half full as his face emerged.

"You know," he says looking at me. "This purse... " He paused considering. "It has your personality."

I couldn't help but laugh and love him just a little bit more. I am chaotic, disorganized, and a mess...but he loves me regardless.

Riddles

Last night I tucked Jari into bed where he had chosen Winnie The Pooh's Great Riddle Contest to read before singing. As we read the story, he was surprised by the riddles, even though the answers he came up with were pretty okay. As I closed the last page of the book, he decided we needed to have our own riddle contest...but he doesn't quite grasp riddles. It was hilarious.

Jari: Mama, what lives in the woods and digs holes?
Me: A bunny? *shakes head no* A fox? *no* A mole? *no*
Jari: A rat! hahahahah

Jari: Mama, what do you put in a glass and drink?
Me: Juice? *no* Milk? *no* Yoghi? *no*
Jari: Cola!!! hahahahaha

See, I told you he doesn't quite get the riddle thing :-)

Mama: Okay, my turn. What has an eye but can't see? (Yeah, so what, Iused an old standby)
Jari: Uhm, uhm...hmmmmm...Wait! I KNOW!!! A blind man!

How could I possibly say no?

Camping

We returned last night after a long weekend camping during the Pentecost holiday. We all had a really great time, leaving the stress of daily life behind and heading off to explore and play. We took our tents to a farm and pitched them there in the field, and while Erwin and I got busy preparing the grill for dinner, our little sprouts took off to meet all the farm animals, play some soccer, jump on the trampoline, and swim in the pool. It was a perfect location for the boys, safe from traffic and getting lost, all in the confines of a farmyard. The animals were numerous, horses, sheep, goats, kittens, dogs, guinea pigs, rabbits...all of which they could hold and feed and were kid friendly. The pool was a point for Kaeden to relieve his stress, though it was much too cold for me to "just jump in, mama!" Jari enjoyed the soccer field where he played a few matches with other kids, and the dirt that covered their bodies at the end of each day was 'picture perfect'. Theyeven woke early to help the farmer make the rounds and feed the animals, giving Erwin adn I a chance to enjoy a cup of coffee in the sun. There were numerous occasions we both spoke of the terrific location, just an hour from home, yet away from the house. The go-cart didn't see a moment peace the entire duration of our stay.

We went to picnic along the Maas river, riding the ferry across the water. We attended an asparagus festival and all won a little prize, while the boys enjoyed a clown putting on a show. We visited a couple of castles and made the short trek to Germany where we shared an ice cream cone. We attended an open day for milk farmers and played games learning about cows and milk, and then sat in the sun drinking milk and eating pudding just one step from the cows long, sticky tongue.

It was a good weekend, and though the car was full to bursting carrying tents and sleeping bags and swimming gear and a grill and air mattresses and chairs, it was worth every minute, just to escape reality of everyday life, and enjoy our time together as a family. This camping on the farm...we'll be doing it again!

Kaeden and Autism, A Positive Side

So, I thought I'd talk about Kaeden today. It seems to me I always write about autism when we're going through the difficulties, which come quite frequently with my son. I need the chance to get all the emotions and frustration out someplace, and my blog is the place I turn for help. But today, I can graciously step up and write a post about autism that is a good one. Or maybe it's not so much about autism, but about my son. I don't know, the two go hand in hand and can't be separated, so I suppose it's about both: Kaeden and Autism. Autism and Kaeden.

In any case, it's good. We have had a very good week in our home. These weeks of freedom from fighting are always a huge relief to everyone in our home. They also make me wary, wondering when the BIG explosion is going to come. But for now, I am choosing to focus on the positive.

We changed Kaeden's medication a about a month or so ago and have been playing with dosages as we build him up on his new med and lower or remove his other medications. 'Playing' with medication is always difficult, and finding a prefect combination is next to impossible. We've been 'playing' this game for 8 years now, when he first started taking ritalin. It's a difficult proccess.

This week has been like living in a state of bliss, as far as Kaeden is concerned. Though the biggest difficulty still comes in getting him out of bed and ready in the morning, there have been no big outbursts, no major incidences to send us all off the deep end. Our home has been an oase of peace, actually speaking and conversing in place of yelling and screaming. Kaeden has been more talkative, telling us about his days, his interests, his needs, rather than flying off in anger when we are unable to understand. He has shown more interest in us as individuals in his family, rather than seeing us as his servants and enemies.

I know that it helps that we haven't been yelling, that our voices are calming and soothign rather than blasting out frustration and anger. I know our bodies are more soft, not so tense and strained, and in my husband I have seen glimpses of him trying to be playful, rather than on edge worrying. Kaeden has given me the motivation to be more open to him, and I have played games with him daily, sharing a cup of coffee at the table as he recounts things that happen throughout his day.

This is not typical in our home. This is not typical in our son, or in us as parents. It hasn't been typical for the past 3 years. And it feels good. It feels like what I always dreamed our family should be. It hasn't been without incident, but the incidents we've encountered have been manageable. They've been nearing what I'd call normal for a family with a teenage child. They haven't been out of control on either of our parts. I've had an opportunity to begin to relax as a mother, to be allowed to be the mama I wish I could always be. I've started feeling enjoyment in my child again.

I'm not yet done holding my breath, and I'm not yet singing out praises for his new medication. But I am thinking that our life as it has been in the past week has been more enjoyable, more happy, more upstanding and more loving. We've all been able to rest our tired spirits and take a big breath of this clean air. We've hit a crossroads, and finally it's a right turn. I am so proud of Kaeden, because whether it's his medicine helpign him or he's feeling healthier in his own skin, he's had a chance to regain some self-control and put it to use for himself and our family. We have seen the soft, loving, giving side of our son that hides underneath the surface. We have been given back our little boy filled with sparkle and happiness.

I am grateful. And I am, at least for this moment in time, at peace with autism and my son. My son and autism. The fight is momentarily gone, and I am grateful.

Knikkers

Knikkers=marbles pronounced Kuh-nick-kurs
Kikkers=Frogs pronounced Kick-kurs

Today after school Jari and I were playing Monopoly. When he jumped on my lap I felt something bulging in his pocket. I asked him if he had rocks in his pocket. "Nope, mama, guess what I have," he answered.

"Knikkers!" I replied. And I was right!

We started talking about knikkers and how he plays at school, and how he won these two in his pocket from his friend. We played a couple times with his new prizes when he asked if we could go to the store and get some more tomorrow. "Jakub says we can buy a big sack with 100 knikkers for just 3 euro at Blokker."

"Jari, we can buy them someplace else even cheaper," I answered. "But we have so many kikkers (frogs) in the house we don't know what to do with them all."

"HAHAHAHAHAHAHA" my son couldn't stop giggling. "Yeah, mama, our house is full of kikkers (frogs)! But we can still go to Blokker and buy some more knikkers (marbles)."

Sometimes this Dutch language stuff is just too much to handle.

Playstation Games

Yesterday I spent time playing Playstation with Jari. We always play soccer and he gets so excited picking the teams and seeing which players will be playing. He really lives in the game, becoming those players as his little fingers work the controls, his whole body jiving with the moves of the players. Well, if you can't play soccer outside, might as well figure out a way to do it inside.

He is pretty good at PES, mama not so much. I can't ever make my guys do what they're supposed to, and as I beat at those little knobs sometimes I just manage to make a good move ("Great action, mama!) or steal the ball away (Wow, that was good of you mama. You can steal very good!"), or even score a goal (WOW! THAT was a good goal...in the cross, mama!). Yesterday, I even managed to win a game, but only because he 'helped' me score one since he wanted to have the penalties round. He was surprised when I actually won that round, and thus the game :-)

While we were playing he was discussing how I could practice more and become a better player. And through that conversation I learned something very important. My son feels secure and quite settled in his life. Here's how it went:

Jari: Mama, tomorrow I can go back to school, right?
Mama: Yep, that'll be fun to see all your friends again.
Jari: Yeah, and when I am at school you will have time to practice PES. When you are finished with the laundry and the dishes you can play this game and get even better.
Mama: Yeah, I suppose I could. But I like it better when I can play with you.
Jari: Yeah, but if you just practice, you'll get very good and then you can even beat me!
Mama: Do you want me to beat you?
Jari: No! But if you practiced you could. Mama, are you going to go to work when I am 10 or 12 or soemthing like that?
Mama: I don't know if I will go to work when you get bigger. Why?
Jari: Well, now your job is to take care of me and Kaeden and cook and clean, but when I go to school you have extra time to practice. If you practiced this game for an hour every day til I am 12 when you go to work, you would be the BEST!
Mama: I still don't really like to play it unless I play with you. But I could practice sometimes and show you what I learned when you get home.
Jari: Why would you want to go to work when I am bigger? Don't you like staying home?
Mama: Well, I do like to be home so that I can pick you up from school, but sometimes mama would like to go do something away from home. PLus, then we would have more money.
Jari: Yeah, then we could go to Italy!
Mama: Maybe...
Jari: But you won't go to work til I'm 10 or 12 cuz I can't go home all by myself, right mama?
Mama: Jari, mama is always here when you need me to be here. If I go to work, we'll make sure you know where you have to be and when. But you don't need to worry about it right now, because I don't have a job now.
JAri: Yes you do! (He removes his hand from his controls for a moment to pat my arm) Your job is playing with ME!

It was just a millisecond when he glanced my way and touched my arm, interrupting his dedication to his game, bt in that touch and conversation he gave me a great peace of mind, knowing he feels security. I don't need any other job, and this conversation just bore into me the importance of the job I do have. My boys KNOW mama is here. They know that whatever else is happening in life, I will be here to care for them. They know that I will play a game, feed them, wash their clothes (even if I don't put them away ). I am grateful my husband and I chose to have me be a stay-at-home mom. Even though I miss outside adult interaction, the extra pay, and having a carreer to pursue, nothing could be worth taking that security away from my children. Playing Playstation really is worthwhile. I learned a whole lot yesterday, and it wasn't about how to push the X to make a pass...today, I'll be practicing that little maneuver! Got to surprise my little guy!!!

Struggling

I'm struggling. Usually at this time of year that dark cloud that hovers over me lifts and I start to feel energized and renewed and just a tad bit lighter. But this year, it hasn't yet happened and I feel myself stretching, trying to grasp onto that sunshine in the sky and flip over onto the happy side, but it just isn't working. I'm feeling, instead, as if the rubber won't hold much longer before I break.

The reasons I know this is how I try to convince myself to do things I know I will enjoy. Rather than talking myself into it, I usually talk myself out of it. Things like meetings with friends and parties and going on a bike ride. Things like needing to sum up the energy for a family day out, preparing sandwiches for a picnic seems like it takes more effort than it should. Calling my family and friends at home, though always at the forefront of my mind, I never just pick up the phone and do it. I have plans to better my home swirling in my mind, but haven't yet lifted a finger to accomplish any of them. When it's my turn to pick kids up from Judo, I become angry that I have to leave the shelter of my home to make that 10 minute trip.

I feel like a bomb just nearing explosion, and though I haven't yet reached that point, I can feel it coming. I need to cut the wires before it happens. But how?

I haven't been physcially well, having bouts of sinus infections and problems with earaches and migraines and teeth. My family hasn't been healthy, with mumps and Q-fever and allergies on the rise, as well as a concussion my mother suffered last week. Foot infections and heartburn are the least of our health issues. Money is short paying all these added doctor bills, as well as a large bill we owe the beginning of June hanging over my head. Kaeden's trip to America looms on the horizon while we still don't know where, or if, we will go this year. Father's Day is quickly approaching, as well as my dad and brother's birthdays.

I keep copping out of all my extra-curricular responsibilities. Such as helping serve at a funeral for a neighbor last week, going to choir activities, attending my women's club end of year party (which is tonight, and I am trying to work up the courage and strength to go, but it doesn't feel like it's going to happen). I keep making excuses, such as not feeling well (which I don't) or having family responsibilities (which I do). But, and this is a big but, I could still manage these other things if I was mentally able. But I am not, and as I keep letting these other things fall to the wayside, I'm bringing myself down even further as each activity quickly passes me by on the calendar.

I just haven't yet learned how to make myself well with a positive attitude. I haven't been able to take a shower and face the day with a smile. I haven't been able to summon the courage to take that first step. I'm feeling stuck and stretched and just not bubbling and flowing as the creek so alive with the rush of spring water, the melted winter snow filling it to capacity. I just want to wake up out of my winter sleep and feel hungry for that taste of sunshine.

Parenting Part 2

A couple days back I was thinking about parenting and what it means. Yesterday, I realized yet again what it means as I took my little swollen boy to the doctor. His face all swollen to 3 times it size, I was expecting to hear he had an abscess or something. His pain was big, and he was unhappy that he couldn't eat. I got him into the on-call doctor at 5:20 and when we arrived the doctor immediately looked at him, and told me "He's got the mumps."

Mumps? How does that happen when we vaccinate our kids to protect them? How often in this day and age do you hear about someone contracting mumps? And where did it come from? It was the furthest thing from my mind when I first noticed his swelled cheeks, recognized that he was being a bit less wild, a bit more reserved. When he cried out in pain upon eating a spoon-full of his favorite cereal, I knew it was time to take some action. I picked him up and rocked him, brought him a glass of water, held onto my little guy, kissing his head and rubbing his pained little body.

This morning, his face is even more swollen. He woke with a fever and in tears, and as I spent my first waking hours sitting in a chair watching cartoons while holding my little guy, I recognized the importance of my job. Being a mama is about offering your child security and comfort. Even when you can't take away the hurt, those little kisses and the softenss of your bosom offer enough to help ease the pain. Offering an ice pack and wiping away tears is all he needs to know that you care.

I'm hoping for good news in the coming days as his pain subsides and our home becomes mumps-free. I'm hoping nobody else catches it, nobody else has to feel the pain of this long-ago common childhood illness which today is just something you once heard of. I'm going to give my child lots of cuddles, keep him hydrated, keep his fever at bay, knowing that this is what being a parent means...mumps and all.

On Being A Parent

When we are young and considering starting a family, it just feels so happy and carefree. You want that little bundle of joy to fill your heart and home with laughter and love. You imagine how happy life will be, sharing painting and coloring and baking cookies, playing in the sandbox and pushing them on swings. You can't wait for your world to be expnaded, for you to be called "mommy".

But when all these happy thoughts race through your mind in the initial phases of expanding your family, what you aren't prepared for is what really being a parent means. Youhave no concept of just what your duty will be, how much energy you will expend, how much pain you will endure. You haven't considered what this will mean; being a parent, being responsible for another life, emotionally, financially, physically.

When you consider parenthood, you may consider sleepless nights, though you won't imagine your perfect little bundle of joy will REALLY give you any problems. What you won't imagine is night terrors and screaming for hours when you are completely powerless to help. You won't imagine lying with your child through many stories and many songs trying to get them to sleep in their own bed, only to have to carry them back to their own bed when you head to bed yourself hours later. You won't imagine still having your seven-year-old sleeping between you and your husband, or the many different monsters you'll have to put to rest. You won't imagine your son can outlast you before falling to sleep, needing more hours but unable to soothe himself enough to fall into slumber.

When you consider parenthood, you may consider feeding issues and worry about whether to breast or bottle feed, how big your child will be upon delivery. What you won't imagine is weekly visits to the doctor with your tiny little sprout because though they are nursing well, they are not gaining weight. You won't imagine taking your child to Auschwitz Concentration Camp only to compare the ribs of those poor children with the ribs of your own. You won't imagine medicating your child and worrying about the extra pounds your child is gaining, or the unbelievable sheer amount of food a teenage boy can consume. You won't imagine the picky eater issues, when beans makes him puke, when you nickname him cookie monster as that is all you can get into his body. You won't imagine the fun 'cooking' sessions when every dish in the house is dirtied for a simple bowl of cereal. You won't imagine how if your child is hungry or thirsty, he becomes a demon child crying and mean.

When you consider parenthood, you may consider the costs involved in child-rearing as you go buy those first little onesies, a crib, and stroller. What you won't consider is soccer camp, Judo lessons, school field trips, family days out to the zoo. What you won't imagine is how fast a 14 year old boy grows out of his shoes and pants, how many pairs of shoes a soccer-manic seven year old will need in the course of a month. What you won't consider is necessary medications, all the "PLease, please" s, the toy store that will become your home. You won't imagine how much you can spend on coats in a given year, winter, summer, rain, sport, and then that one extra when they outgrow it or the zipper breaks or they accidentally climb through a barbed wire fence after having this coat just 3 days and it rips to shreds. You won't consider all the birthday party gifts and the extra gas to run them to their activities. You won't imagine the extra water bills from all those long showers and baths, the extra energy you'll use keeping lights on all night to fend off monsters. You won't imagine how many batteries you'll buy in a year time.

When you consider parenthood, you may consider the fun you will hope to have with your little bundle of joy. What you won't consider is a fun afternoon bike ride turning into a severe medical emergency, or how a walk through the woods will result in your child falling into the pond with you having no change of clothes ready in the car as your kid becomes hypothermic. You won't imagine the severe fear that results when a child is exposed to changed schedules, how difficult it will be to leave the house to do something fun because the switch-over from home to activity is too over-stimulating. You won't imagine you'll hear a doctor force you to tears telling you your child is autisitc, or that you'll have a discussion with your child about what it means to be colorblind. You won't imagine holding your child's hand through dental procedures where you have to help hold them on the chair, or crying as they fall giggling after being given the medicine to prepare them for surgery. You won't imagine how your heart will lurch when you have a special day out with your child and hold hands walking to the car together. You won't imagine how long it will take to choose an ice cream cone.

This week we went to the hospital to visit my father-in-law. My sister-in-law and her boyfriend were there, and were heading off to Belgium to sit on a terrace, have dinner and a few drinks, walk through the flower market and enjoy their day. After we left the hospital, Erwin and I commented about how easy life would be with no kids, how we could do whatever we wanted and go where we wanted and life would be so simple. We were both lost in thought, both feeling a little jealous of our sis and her freedom. We were both imagining life without kids.

When you consider parenthood, you may consider always having your little bundle of joy attached at your hip. What you won't consider is all you give up being a parent. You won't consider eating out means going to McD's, that a museum visit must have children's activities, that travel will take you 5 times as long for pee breaks and stops for travel sickness accidents. You won't consider that going on a romantic night away with your spouse MAY happen once in a great while, and that jumping in the car to go grab a few groceries just 'ain't gonna happen' cuz it's past their bedtime. You won't consider what being a parent means in your joy of having a baby to love.

When you consider parenthood, you may think about the possibility in loving this new little being you created. What you won't imagine is how much you will give up, how silly you will become, how treasured you will be. What you won't imagine is how much love you hold inside you, how much love you have to share, how much love you will gain. You can't imagine it until it happens. You won't be able to consider that possibility. And you will be unable to imagine. For as much as being a parent takes more energy, time, patience, and funds than you could ever imagine, one smile from your child, one thank you, one giggle, one kiss, one question, one story, one evening without argument, being a parent is something you will never wish you could replace. Being a parent is the greatest joy in the world. Being a parent is so much more than you ever could begin to imagine.

Undies

Jari asked me to play soccer. "Sure," I told him. "As soon as mama hangs out the wash to dry." I began the job, the sun still just peeking out from a darkening sky, the wind blowing strong enough to let it dry before the rain. "Mama, if I help you, we can play soccer faster," said my soccer-maniac son. And so he began to help, reaching up to the washline to gather some clothes pins.

"How do I do this?" he asked, grabbing a t-shirt and crumpling it into a ball on the line. "Jari, t-shirts have to be hung straight so they aren't all wrinkly. Like this..." I showed him. Then, I divided our piles, giving him socks, undies and washcloths while I took the bigger atricles of clothing.

We were busy for awhile, getting everything strung out, when suddenly Jari perks up loud and clear "Mama, THESE are BIG undies. I think I need TWO pins for these," as he holds up a pair of MY undies outstretching his arms.

He hung up the undies and then I saw him considering the situation. "Mama," he questioned. "Those are very big undies for a very big butt. Those are your undies, huh mama? I think those were supposed to go in YOUR pile!"

Nothing like a little reality check in the day to day living of life!

Running Away?

Yesterday I was cleaning up and suddenly had a memory. It's something I haven't thought of in years, maybe even since it happened. It happened when I was 16 years old. During the period of my school years when I frequently 'missed' a class, be it that I was really sick or just'sick'. I had good grades, was active in school sports, and also took part in the school newspaper and a couple of other clubs. I worked for my parents at their store, and didn't really get up to too much trouble. I was a pretty average high school kid, not anybody popular, not totally cliqued into the 'jock' group, not part of any clique really. I just was, attending classes and trying to do what I had to do to be done with it all. I never really found my place during highschool. In fact, I think that's something I have carried with me throughout my life. I always have plenty of acquaintances, but true friendships are harder for me to come by. And so the friends I do have, are people I truly treasure.

Anyway, back to my memory. I had a friend named Becky. She was having a hard time at home, and was also very involved with her boyfriend, someone a bit older, not attending high school, and not from our town. I don't remember exactly where he came from, but it seems as though he was working construction, kind of just paving his way from place to place, a bit of an orphan. Becky was head over heels in love with him, but her parents were not. They forbid her from seeing him, which of course she rebelled against. I had recently gotten my driver's licence and drove to school each day....and also drove Becky around to meet up with her boyfriend, whether during or after school hours.

At one point, her Beau was skipping town. I don't know the reason, but Becky planned to follow him. I remember there being talk of them getting married, and I also think that the possibility that she was pregnant was also a factor involved. In any case, she asked for me to assist her in running away.

At the time, I didn't consider what my actions would mean. I just agreed to help my friend. On the day of her departure, we met at school, loaded her bag into my car, and off we went to the local airport. At the time, I remember asking her if she was sure she wanted to take this step, if she was sure he was someone she could trust. But, I didn't try to stop her. In fact, I was an accomplice in every step of this journey.

When we got the airport, Becky checked in, and we sat and talked waiting for her plane to arrive. She made a phone call to her boyfriend so he'd know she was on her way. And then, when the flight began boarding, I hugged her goodbye and waved as she headed through security. As soon as she entered the security gates, police surrounded her.

The look on her face was of complete shock. Tears began streaming down her cheeks as she was taken into custody. She looked my way and yelled at me to call her boyfriend. I didn't know waht to do. I stood there, watching my friend being hauled away by the police, her bag still sitting where she dropped it. An officer finally came to me in the waiting area, suggesting I get myself back to school before I also found myself in loads of trouble. He mentioned they would be in contact; e already knew who I was from my parents business.

I was embarrassed, scared, and sad. Instead of returning to school, I drove straight to my mom's store, where I poured out the entire story. I was in tears, and felt so helpless. I wasn't sure what would happen, or where to go from here. I stayed home from school the rest of that day, just relishing in my time with my mom, glad that she was someone I could count on.

The story ends here. I know that Becky went to a counseling center for teens and that she kept in contact with the boyfriend. I know that she made further plans to leave home. What I don't know is if she succeeded. After all of this, our friendship evaporated once she changed her focus to running away from home. I have never seen her again.

I don't know from where this memory came, but it makes me wonder about teenagers. My son is a teen, but I can't imagine him being advanced enough to make plans such as these. I can't imagine him driving a friend to the airport, packing a bag to run away from home, handling being confronted by police officers. He is autistic. And as much as he creates plenty of other problems, these would not be something I would have to deal with as the mother of a teenager.

Interesting what little experiences we come across in our book of life, and how those little things may never be thought of, but always and forever remain a part of who we are.

Reading and Writing

I have been reading a lot lately. I have become so involved in the stories, awaiting the following moments that come alive in my mind through the pages in the book. The stories I have been reading have all been stories about women during the World wars. What their lives were like, who they became, how they survived. I am entranced by this era, what women had to live through, the choices they have had to make in order to survive. And I have loved reading these stories.

However, I have been disappointed time and time again. Throughout the stories I have been so involved in the characters, the story line, my own visions coming to life in my mind. And at the end of each book, the story, so strong in the first 400 pages, has ended much too quickly, without a concrete ending, without fulfilling my ideals for the story. It is so disappointing to read all those pages, get so into it, not wanting to put the book down for fear of missing out, to come to the end and feel as if something has been stolen from me. A book needs a strong ending. It needs to make the reader feel as if those hours spent reading have given them satisfaction. The reader needs to come to the end sad that the book has ended.

The past 3 books I have read haven't left me feeling that way. As I turned the last page, I was plain angry at the last words. I could have created a much better ending, I think. I could have made the reader feel that the story is complete. I could have given a deeper satisfaction.

Yet, until the ending, it was a good book. How could something so strong end so piddly-poo? How come I feel cheated? And is it really the story, or is something more going on within my mind? Why have three books, one after another, all disappointed when I was so involved throughout each?

I'm wondering what I am expecting? Why wasn't it enough? Could I do better? Could I actually write a book and leave the reader feeling complete at the end of the story? Is it my time to finally become an author? It's somethign I have been told, my entire life, that I have the ability to do. People always read my words and tell me I should be a writer when I create a story. It's something I have always wanted to do, but never knew exactly how to do it. But, I am considering taking that leap. I want to hold one book in my hands with the author staring back at me someone I personally and intimitely know. I want to see my name in print.

I want to be a writer.