Home Movies

Home movies on the tv. Seems like such a fun experience, bringing back moments in time, remembering our kids as babies, special times shared with those we love. It's an experience to watch these videos, thinking how much has changed since that long past day.

For me, though, home movies are not a piece of magic. I watch those long ago moments and wonder where I went wrong, what more I could have done. When I see my husband and son walking together down a wooded path holding hands, my little boy lughing and smiling and playing and jumping as little boys are supposed to do, it tugs at my heart in a way that nothing else can. It becomes an ache that claws away until inevitably tears begin to fall and I feel failure with a capital F creeping into my every bone. What happened to make those magical moments disappear? How did we go from loving, easy-going family to the point we have now reached?

Yesterday, oma and opa came for a visit. It wasn't a visit that turned out the way we always hope they will. Kaeden ended up throwing a tantrum, to a degree they have yet not seen. The extent of damage one mound of anger and disharmony creates is something that can't be turned around. It stands the test of time, in a manner which we'd rather it didn't. Such behaviors, such words and complete uncontrol, are not soon to be forgotten. The tremebling fear holding their littlest grandson in his own fearful tremor takes a piece of your soul and rips it to shreds. Knowing what is happening, seeing it first hand rather than living it through stories, is not something I can take back, no matter how much I wish I could. Nobody should have to be victim to that feeling of helplessness and pain.

We watched home videos. Erwin asked Kaeden to clean up the tools he used to make a mess in the freshly cleaned porch outside. Kaeden didn't want to and left the room in anger...to his bedroom, where we left him to chill out. When he had enough time, I reminded him he wouldn't have dinner until he was done cleaning up. And then it all began. The disrespect, anger, spitting, threatening. And it wasn't quick to stop.

The home movies played on. Scenes of happiness from another time, another place threw laughter out of the speakers, as screams and crying and dirty words flew presently around our home. The laughter and smiles contined to play on. And on and on and on. Soon, nobody was watching. The air in our home was stripped of life-giving oxygen as we all held our breath. Only the happiness from the tv continued to breathe.

My scared little boy, my angry husband, my hopeless self and a non-existant Kaeden swallowed up in his own little world of pain..along with my in-laws, standing by horrified, wanting to intercede, but me stopping the further round of aggression.

Still the home movies played on. Later in the evening, after a sort of settling had taken place in our home, a calm after the storm, but still lingering, this tension, this secret of which nobody wanted to speak, I sat with Kaeden, the home movies still flashing across the screen. He laughed at the little boy he was, the little kid climbing rocks, his beautiful face covered by blonde hair with a plastered on smile, a smile and a sense of complete joy, which never left him. Kaeden laughed, as the boy on the screen before me and the young man next to me, and I cried. The pain of all that is lost, all that has been swallowed by the passing of time. And the home movies continued to play on.

Vacation with Autism

We always go on vacation at Easter time. The boys have 2 weeks off from sachool, Erwin schedules his week off at the beginning of the year, and we steal away to one place or another hoping for some relaxation and distance from typical life. An escape from reality.

This year, it is no different than other years. We are still planning a week away, the four of us off on new adventures. But there was something that happened which made it a bit different. I found a vacation deal which was *almost* too good to pass up.

Typically, with just a week vacation, we stay close to home. Germany has been a regular stop, Luxembourg, and Holland. Belgium is also entirely possible, of course. We save the big places, the further distances, for summer when the weather is certain and the time longer. We have as yet never been to France on vacation, but it's also just a stone throw away. This year, however, I discovered a trip to Italy. A quick flight from the airport nearby our home. A rental car and little house on the Gardameer lake. All under 500 euro for all 4 of us. Which is considerably more than we usually spend for our week away, but considering it's Italy and flying, it was a totally doable vacation.

Erwin and I discussed it, and both of us were ready to book our vacation. Then, I got this niggling feeling in the back of my head which wouldn't go away, and I started looking for vacations closer to home. Last night, I spoke with Erwin about all the reasons I hadn't yet booked the Italy trip.

Kaeden. Kaeden, Kaeden, and more Kaeden. Our son is just too temperamental. From minute to minute we can never be sure how he reacts to a situation. Traveling he is almost always a star. He is helpful and organised and on his best behavior. He loves going on vacation and exploring and adventure. That may not sound very áutistic', but for him, it is what it is. Our autistic son loves new experiences.

However, the house I found in Italy which we could afford to make the trip was a one bedroom place. We always book 3 bedroom homes to give us all space to escape, no matter that the cost is higher. Kaeden needs his own space to escape, and we need it as well. If something goes awry, we need a time-out place. One bedroom would not allow us this luxury, this absolute need. And, as I searched further for a larger home, I realized that in Italy, you get what you pay for, and something bigger was not within budget.

A rental car. Yes, we would need a rental car if we were planning to fly and still go off exploring. This is ssuch a simple thing for travellers, renting a vehicle and taking off. But when you have a person with you, for whom riding in a car is his most difficult exercise anywhere, anytime, and often has major bouts of tantrums in a vehicle, a rental car becomes expensive. What if he broke a window hitting it? What if he rippe doff a seat? What if he tore holes in the fabric? What if he caused an accident, god forbid, as he threw himself over the seats? These may all be what if's, and certainly not expected, but all experiences we have shared with him which make us worry when renting a vehicle. The costs we could endure in damages makes us think twice. Especially after our trip to America at Christmas still fresh on our minds when the ride in the rental car became a complete disaster, nearly causing an accident.

Flying. Kaeden loves to fly and is extremely well prepared to do so. He has done much more flying than the typical child his age, and knows all the ins and outs of airports, airplanes, and baggage. However, we don't 'normally' fly on our week long trips. This change in itself could cause him enough stress to throw him out of sync. It's these little things for which he is unprepared that cause him the most fear and impatience and moodiness. He is used to driving to a vacation house and searching out his bedroom and looking where all the dishes are and the pots and pans, and exploring the area around the house. But we don't fly to get there. Would that be enough to send him over the edge?

So, with a too small house, the possible extra costs involved in damages, and the unexpected transportation, I could see in my mind all the scenarios why this trip to Italy may not be a good decision. As much as *I* wanted to go, I also knew that I didn't want to deal with extra fights, extra stress, and extra worries in a time we are suppoosed to enjoy each other and our break from life. The trip to Italy was something I wasn't prepared to do.

This decision has left me feeling a bit sad. Not becuase i am missing out, but because life with autism is so difficult. Simple decisions become a process. Fun things create stress situations which in turn create major tantrums. We are limited in what we can do, yet we don't let the limitations get the best of us. We force Kaeden to deal with them. Are we fair to him in doing so? I think, yes, he must learn to deal with thse situations in order to be prepared for life. I, however, and unwilling to take a good vacation and ruin it in my selfish desire for just a little *more*. I'll be looking for a vacation closer to home, a little vacation house with 3 bedrooms and a quick trip there, and save my Italy dreams for the summer, when time is on our side. And the experiences can extend when Kaeden is visiting family or happy with his friends at school on camp, and we can make that rest and relaxation really meaningful without the stress it causes for our son and our family.

And we'll go away for our week at Easter, and we'll have fun and enjoy each other and explore new areas and have advetures together as a family...and it will be the perfect family vacation. The other perfect vacation can wait for the perfect time, without the undue stress, without it being our ~entire~ family.

Speaking Of Jari

I'm going to give Jari a little attention here today...he's my kid and I can if I wanna. Plus, he amazes me. He really, truly does. I can't begin to describe this kid. He is like this part of me of which I am so filled with pride. If only he could be a little more outgoing with people. Because that aspect of him bothers me a little. He seems almost rude, when in reality it is shyness that overcomes him. In place of shyness, it seems like he is rude and just doesn't care. When in reality, what he desires is attention and play and fun...with and from those he acts so shy around. But that's another story. For now:

1) Last night Jari and I were snuggled in bed and I had promised him he could watch a movie if we could just do it in the warmth of my cosy bed. He chose Dances With Wolves. I pulled the covers around me and immediately felt his arm wrap around me. "Mama, does that feel good?" he asked. No words could describe just how good it felt, to have my son wrapping me in the comfort of his love. None.

2) So we're watching Dances With Wolves. And there are gunshots and someone dies. And Jari says "he just killed himself. That's called suicide." And I was in shock that my son knew what suicide is. I mean, I guess nothing shocks me, but it caught me by surprise. It is not somehting I have ever discusse with him. So I asked where he learned about it. And we started talking about suicide and how life affects people. And he told me that no matter what, even if his life was filled with bumps, he would never kill himself because life has too much good in it. And that when people commit suicide it makes their family sad. And "I would never want you to be sad, mama."

3) Jari brought home his report card, and asks me to sit with him and go through it. One for one, he reads the subject and his results. We get through math and langauge and spelling and geography. And we come to the page for physical ed. "Mama, this one, you can't wait to hear this! This is the important part!" says my little ahtletic son. ***When I told him I liked to see his phys ed results but cared more about his actual learning subjects, he couldn't believe it!***

4) Jari is an expert in countries. I mean, his interest in lands is unbelievable, and I can bet that of 100 random people, he could beat 98 of them in a geography test. I am not joking. He knows where countries are, what the capitols are, and what their flag is. He knows approximately how many people live in a country (not all, but surprisingly many) and where they fall size-wise in comparison to other countries. We received a world map shower curtain fro Christmas, so now he is also learning this information in English. His favorite game is the Flag game, and nobody can beat him...not his teacher, not his classmates, not his father (who is also very well-schooled in this area). I am blown away by his interest and knowledge in geography. When we play the game together, he is so proud of me when I learn something new. Yesterday at lunch we wer eplaying, and for the first time I recognized the flag El Salvador, and also got the capital, San Salvador. He grinned from ear to ear, saying "Mama, see how much you learn when you play with me!"

These are just a very few of the little things about my boy. He is beautiful, with big blue eyes and hair much too long. He is small for his age but proudly getting bigger all the time. He has a shoe fetish and loves new shoes. He eats tiny amounts 10 times a day, and without fail after dinner he is hungry again after 20 minutes. Warm chocolate milk is incomplete without melty marshmallows and lunchtime without Genie in the House is a disaster. He's my kid, and I just love him to pieces...all of him....except maybe the very big mouth that has been accompanying him everywhere we go lately :-)

Alive at the Park

Running. Laughing. PLaying. Jumping. Twisting. Turning. Today I did it all. My favorite part? Taking deep breaths trying to keep up, and feeling alive. Not just alive, but really ALIVE!

We had a strange day today...a bit of this, a little of that...and then we decided to spend the afternoon with the boys at the playground. It was Erwin's idea, his desire to haul me out of my electric blanket paradise and away to land of the living. It was so cold t

oday, my fingers and toes were numb and snuggled under my blankets seemed the only proper place to be. But no go...I pulled on my shoes, grabbed a scarf and mittens, and off we went, the four of us, my little family.

There weren't many people at the park. I enjoyed hearing little giggles of laughter as a little girl went down the slide, and a squeal of delight from her ma

ma watching her. But it was the pitter patter of the basketball on the basketball court that had my attention. Tick, tick, tick...ticktick...whoosh. It was our goal...a family basketball game.

Jari and I were on a team after I persuaded him I'm not too bad at basketball (yet again, needs persuading) and Erwin and Kaeden in their tall glory were favorites. Jari and I did good. We shared laughs, we shared moves, we made up a team and

gave each other high fives. And I huffed and puffed and wiggled and waddled all over that court trying to prove my basketball star stautus to my son.

I don't know if I was successful, but we sure had fun. And I felt alive. My cheeks tinged with warmth from moving and my lungs filling with air time and again. It felt good.

We had more fun, playing games and having races and concluding with a soccer match. Walking back to the car, I was completely fulfilled. I felt alive.

Bunches of Stuffs

It has been so long since I have posted. My life has been full of highs and lows since then, like a wicked rollercoaster ride, leaving me breathless, my cheeks a rosy tint against a spinning background.

Today I spent the day with my eldest son. I was so happy to have some alone time with just him, as we act and react so differently when it's just him and I compared to when others are around. I just feel so much more natural and at ease when it's just the two of us. Maybe that has to do with our start in life, just him and I together, or maybe it's the complicated relationships that exist in our family that make me feel this way, but when an opportunity arises for it to be him and I, I grab it and hold on for the ride. WE played games, ate popcorn and drank fou-fou drinks he created, and watched movies together. He was a picture perfect example of a picture perfect teenager spending a picture perfect day with his mom (she, however, was not picture perfect. she is going through a major self-hate phase which had better change very soon before deep destruction is done) I sincerely enjoyed my day with my friend and it was very easy and content and free of stress.

Jari started playing on his old soccer team again. In August we agreed to him moving a level higher, as his skill level was advanced and they needed another player in that age bracket. Within weeks we realized we had made a wrong decision, though our decision was based upon Jari's own wishes. He pulled away from soccer, didn't find excitement in practice, and quit talking shop. After school there was no longer a race to see how many penalties he could make before the teachers left, and his soccer skills even started to retreat. On the field, we saw a very different little boy playting a very different game from last year. I finally made an appointment with the youth soccer heads to move my son back to his old level. Happily, since the move a month ago, we are starting to see our son shine once again. He is playing, trying moves, making passes and scoring. He can't wait for practice, and comes home onlyt to run outside and play soccer. It's so nice to see that gleam back in his eye. It's so nice to have that piece of our lives back.

We went to America for Christmas vacation. It was such a wonderful week...really, truly wonderful. Just being in that large-family Christmas mode with everyone here and there and everywhere, all working together and sharing, laughter and smiles and hearing storiesd here there and everywhere. Sharing another Christmas with my grandparents, and most especially my boys having this opportunity is something I do not take for granted. My grampa at 92 and my gramma at 84 years of age, being with them and around them, it makes you appreciate life and health and experience even more. It makes you want to live a happy, fulfilling life. To make the most of what you have. My boys, my husband, and I were all very happy with this vacation, and it will be one I won't forget.

That being said, I am struggling. I am aware of this pattern in myself, a sadness and deep depression that overtakes me after some visits 'home'. Yet, I am unsure how to stop the ache that settles in, the disappointment in myself and my life, the worry with how my dreams are not coming to life. I try to encourage myself every morning, get up and paste on a new day happy face, but it isn't working. I'm not sure how to make it better, but I had better start with something physical. I don't even recognize myself anymore in the mirror, through the sadness in my eyes and the extra skin falling off my face. I want to be happy, for my boys to remember their mom as one filled with pride and smiels and hugs full of love. Not s depressed machine that hates waking up to every morning, the bitterness I have towards my husband for reasons completely beyond his control.

We took a walk in the woods, last weekend and again yesterday. It makes me feel alive, feel air on my face, feel nature and life around me...and see my boys happily running up, down, around, through, over, under...running and being boys and mine all mine. And it makes me feel temporarily like things might be okay, that this is how life is supposed to be...if only I could live life through my photographs, the ones of wind-kissed faces and freedom and energy...I need tyo find the life in my photos, feel what I see, and use it to bring it to life time and time again...live the memories to make even more.

Merry Christmas

With wishes for a very Merry Christmas and a New Year filled with a whole lotta wonderful!

Chrtistmas Wishes

Christmas is made of magic and wishes and beautiful stories to fill your heart...



Last night, we were all sitting watching The Polar Express...a very favorite Christmas film of mine, which Jari chose. As it was nearing the end, and the kid gets to pick the first gift of the year, Jari says to me: If I could have one wish, I KNOW what my wish would be.

I looked at him and asked, simplÿ, "What?"

He leans over and whispers to me, "I have a wish, but I can only tell you. Not Kaeden and Papa." and he glanced at Kaeden sitting nearby and he put his finger to his lips in a shushing gesture.

We finished watching the film and I told the boys it was time to get ready for bed. Jari snuggled up to me and I could see he had something on his mind. "Jari" I whispered. "What would be your wish?"

My little boy looked up at me, and one lone tear fell from his eye as he wiped it away (yes, really). He pulled me under the blanket with him and whispered in my ear, "If I could have just one wish, I'd wish for Kaeden and Papa to not fight any more."

Though I knew this was an emotional moment, it took me by surprise. While many children wish for toy cars and computer games, nothing could fulfill the wish list of my son more fruitfully than peace in our home, in his life.


Sobs shook my body as I held me son against me. We lay there, in each other's arms, sharing a hope which we both believe can never come true. We believe in the Christmas spirit, in Sanata Claus and Rudolph, but something simple like a happy family is something we dare not dream, though the hope and desire remains fully alive.


I pulled my son's face to mine, looking him eye to eye. I kissed the tip of his nose and whispered in his ear, "Jari, that is the most beautiful wish I have ever heard." With a last tight squeeze, he took off to brush his teeth and get ready for bed.


Christmas is made of Magic. I hope the magic helps my son's only wish to come true, because I am powerless in this situation. It's just a little wish...please make it come true.

Christmas

I just got off the phone with my mom. I feel a surge of energy fill me up and excite my every nerve ending when I talk to her lately. All we chitchat about revolves around Christmas. And the fact that we'll be together this Christmas...and what a blessing that is for us and our families.

Who's name did I draw? What should I bring? When will you arrive? Who will be there and when? I sent some presents to Jo's house...can you let her know? It's going to be one of those great big old fashioned family Christmasses of my past...sharing it in the presence of my grandparents, though no longer in their home, all of us coming and going, being together. Cousins, aunts, uncles, siblings, parents...we're all going to be pitching in to make a great Christmas celebration. It sounds like so much fun!

I have been praying for a miracle, hoping that my brother and his family would also be present this year. Unfortunately, I'm not sure that it will happen, but whether present at the festivities or not, they will certainly share our space in love and prayer for a healthy, happy, blessed new year. I only wanted for our children to be able to come to know each other better, to play as I played with my cousins as a kid, to feel the smothering comfort of being with family. Yes, smothering...maybe that's what scares them away...we're all so very different. How is it that people raised in the same home, under the same rules, with the same parenst and discipline can turn out to be such different people? I see it with my brothers and I, but also in my own children. Life, and how it affects us, all in our own way.

Christmas is on my mind. I can't wait til it's arrival...to be encircled in the wreath of my family, captured in hugs and laughter, smiles and emotion. It will be a gift. A gift to treasure.

Words in Bed

Saturday morning was a really good one for me. My kids woke up early and I followed them downstairs to see what the Belgian Sinterklaas had left on the plate they had set out for him. Excitedly, they found cookies and candies and a couple little surprises, including a lottery ticket each...a luxury they thoroughly enjoy. They were happy with their gifts, knowing that the 'real' Sinterklaas would be visiting oma and opa's house later in the evening.

I went back up to bed, it being too early after a late night watching tv, and snuggled with my husband. He decided to check on the kids, see their surprises, then crawled back into bed next to me. I snuggled against him, warming up, and we talked about everything under the sun. Talked and talked and talked, as if there was so much to say and we could never get it all out. It is something we have been missing in our relationship, and something I greatly treasured this Saturday morning.

Even with tons to do to prepare for our evening of Sinterklaas, those hours snuggled next to my husband in bed talking and laughing were the best gift I could have received. When Erwin announced that it was already 10:30, I was in shock. We really had spent time just the two of us together.

It is so easy to forget the importance of talking and being present for each other in a relationship. SO much gets in between you and those moments; kids, dishes, laundry, bills, sports, work, computer time. But they are more important than anything else in keeping your relationship alive and strong.

I can't believe how much lighter I feel after having had that one day of intimacy with my man. Something so intimate as words, and how they affect us, how they relate to us and our lives. We need to take the time to make more of these moments. More time together, sharing and learning and laughing.

Friendship

It was the strangest feeling I have had to date as the mom of an autistic child. It was a feeling I can't quite describe, and am still trying to come to terms with. It was beyond a simple grateful, floated a little higher than hope, and the joy in my heart could be grabbed and held, so palpable it was.

During our Thanksgiving weekend, I gave thanks, as I do every year. For my family and friends, for people in my life who care and share their love, for the ability to be a stay at home mom and provide my children with that security, for my husband who gives of himself to allow this reality, for the level of comfort we lead in our lives, able to provide food, clothing, shelter, in a country with many opportunities available. I was thankful, as I am thankful on any given day.

However, this year there was a touch more. A new experience I was being afforded, one I had never dared to believe could come true. In addition to be surrounded by family this year, each of my children was flocked by a friend joining our Thanksgiving celebration. With Jari, this is not something so confound. Jari is regularly found traipsing with friends, visitors to our home or he to theirs. However, it is no less a blessing, knowing your child is capable of friendship and having that open doors to your soul. But the biggest blessing that filled my heart this Thanksgiving celebration was sharing the table with Kaeden's friend. Kaeden's friend, whom would spend the night and 2 full days with our family, with our son. A true friend.

I am grateful for Sacha. He brought with him a guitar, a duffel bag of clothes, and a sense of something greater that nothing can ever replace. He gave me a feeling of normalcy, of being a typical family who has friends coming in and out at all hours of the day and night. He brought with his presence a feeling of pride in Kaeden, of wanting to show off his home, his village, his family. Wanting to have a good weekend without disagreement, without any discord. And in me, a glowing light that didn't stop shining, knowing my boy, my kid, has a friend. A real-life friend, not just someone he picked up during a tour in a musuem(typical for Kaed), or from a grocery store line a nice old man giving his attention whom Kaeden names his best friend. Not those people who are kind, but not friends; but a true friend. Someone not autistic, but who cares about Kaeden. Who sees problems Kaeden has and yet chooses to still be his friend, and not only be there for him, but try to help him find new ways.

I can't put into words what this meant to me. I can't help but smile when I think of this friendship, typical teenage boys riding bikes and laughing and coming home asking for a snack. It has been a dream of mine...and this Thanksgiving, it finally came true.

Thanksgiving

My boys are tucked into bed without a single bit of difficulty. My husband made it safely home after a dinner party with colleagues after work. There is a baked pie cooling on the counter and jello thickening in the fridge. I have a menu ready and placemats painted. Little turkeys made of egg cartons are awaiting their place next to each place setting. My kitchen floor is soiled like never before, and my dishwasher chose today to quit working...when nearly every dish in the house needs a washing.

Today I am calm and centered. It is a special day. Yesterday Thanksgiving passed with nary a second glance. I spent the day with my American girlfriend, shopping, talking, and completing our day with turkey sandwiches. Last night I read Jari the story of the first Thanksgiving. But it was just another day, really. Today, I started out shopping for women's party gifts discussing what Black Friday means to someone who has never heard of it. I came home to make lunch for my son, did some surfing online, and completed my crossguard duties. Then, I started gathering Thanksgiving supplies, collecting items stored from the attic, moving furniture, looking up recipes and gatehring ingredients. And when my boys were home from school, we started working together, all three of us, their excitement catching as music played on MTV.

Decorations were hung, couches moved, tables put together and washed vigorously. They couldn't stop talking about Thanksgiving and most importantly, sharing the day with their friends. Each boy was allowed to invite one friend this year. Both chose and can't wait to share this special day, expand their Belgian friends worlds to include a little something from America. Another piece of them, unknown to the world within our reach. Finding out just a bit more about who they are through this tradition I have passed onto them. A piece of America, a piece of us, within these European boundaries.

Today, though the work has been aplenty, I feel a sense of achievement. As we prepare for our Thanksgiving celebration, a bit later than the actual day itself, I stand back and look at the works I have completed. I am thankful for these two boys in my presence, who though they drive me crazy and cause me worry beyond belief, have also allowed this sense of importance to forge through. Though I'm not even sure they realize it, this celebration is more than just a celebration of Thanksgiving. It is a celebration of their heritage, that little piece they have yet to discover and understand. The piece of me I have worked so hard to carry through to them. I am thankful that I have succeeded. That they are excited to share this with their friends. That it is also important to them.

Surrounding me are people I love and care for. This year, there are two new faces to add to our crowd. Two new faces to accept my boys as this other side shines through. Tomorrow our celebration will begin by being thankful for this opportunity to raise awareness. Awareness of differences. Awareness of something we don't understand. And accepting and celebrating that which we learn. Happy Thanksgiving.

Hazy Death

It's building in me
This thing that closes off my throat
That fills my head with fuzz
I can't breathe
I can't see
All that is before me is a haze
The only thing alive
Is the thing growing inside

The desire
To smash and throw and scream
I pull my hair as a groan escapes
A howling that blasts through my ears
Barely audible but to me
The howl of the deepest pain
My hair in handfuls in my fists
Unfeeling
A haze I can't function

I move towards my bed
The serenity and tranquility
To remove me from the haze
My clothes shedded
My body upon the cool sheets
My scream muffled by a pillow
My tears like a river growing deeper
As each second unfolds

The haze lessening
The blankets warm
The thing leaving behind
A mottled face
An aching head
And a stomach queasy
A pillow wet and sad
Death of the haze
Death of yet another little piece
Of my already dying soul

I awaken
It remains, the thing
Though it's already forgotten
Put into the past
I can't shake the uneasiness
The haze, the thing
This, The death of me

Early Intervention

You know, I was thinking about Kaeden and his autism and the very beginning of my life with him after reading a post by Tanya at Teen Autism (www.teenautism.com) about surveying parents of autistic kids. It really made me think...and wonder.

I had no clues about Kaeden's autism until he was about 3. It was then that I started noticing little differences that clued me into something being not quite right. Of course, now that I know he is autistic and I know the signs of autism, there were clues prior to age 3. Things I mistakenly thought were him 'being a boy' or 'all kids are different' or 'he just has a lot of energy'. However, this being said, I don't know that I would have wanted it any other way.

They talk about early detection and early intervention. And though I agree that it helps to recognize that something is wrong, I feel that early detection and early intervention may be a mistake. There, I said it. I disagree with catching autism too soon. Because once it is discovered and detected and intervened, life can no longer just be life. The kid can no longer be a kid, the parents can no longer just be parents. The kid is the kid with autism and the parents are the parents of the kid with autism. And once we have those labels, there is no turning back.

You can argue with me that we sense something all along, or that the child will never be able to be a 'normal'kid, or that the behaviors of the child already have us stressed as parents. And while those are all valid points and real, it is still my belief that kids with autism such as my son (not classic, but higher functioning) benefit from being allowed to be a kid.

When Kaeden was a baby and toddler, he led a life that every other neuro-typical kid lived. He went to daycare, he went to the playground, he took baths with water and bubbles, he got his shots and well child checks, and he made lots of messes. He watched Barney over and over again, he fingerpainted and played hide and seek. He didn't take an array of vitamins or bathe in epsom salts. He wasn't scheduled with so many therapists there wasn't a moment's break in the day. He didn't have PECS to schedule his life. He was just a kid.

I understand why parents take all these steps early in their child's life. I really do understand. We want to do everything we can to help our child be the most successful he can be. But in that quest to help them, I think we sometimes forget that first and foremost our kid is just a kid. All that autism hubbub and everything that comes with it is secondary. It's not less important, but it does distract from the fact that we have this kid...this living breathing little piece of ourselves who wants to play and eat and whines to get what they want.

When Kaeden used to scream when I vacuumed, I didn't understand why. I just vacuumed when he wasn't around. I now know he had sensitivity to sound. The result was the same, whether I knew he had autism or I didn't. We have instincts as parents. We know how to help our kids (to a certain degree). We know when they aren't happy, or when they are aggitated. And then we do what we can do about it.

Kaeden didn't have any autism-related intervention until he was 6 years old. Kaeden is not free of his autism, he is not cured, and he has many signs and symptoms of being autistic at the age of 15. He has outbursts and fixations and sensory overloads. He also thrives on music and sound, obssesses about money, and uses a strict schema for accomplishing tasks. But he is still autistic, just as he was when he was 3 and I first had doubts about issues.

I am glad we didn't have early intervention programs, as it would never have allowed us to have the enjoyment of each other we had without autism lurking in the background. I know many people will disagree, but in my heart of hearts, I stand true to the opinion. I am glad my kid was able to be just a kid, and I was able to just be that kids mom!

Sinterklaas

Kaeden came home with a letter from school this week. "Here mom, it's a stupid note," he says handing it to me. "Just check YES on all of it. You don't even have to read it."


I took the note and read it anyway. It was about Sinterklaas and whether our children believe in him and our thoughts on him being in the school. I did check yes to the following questions, as Kaeden read them to me. 1) Does your child have interest in Sinterklaas? 2) Do you think Sint should visit the school? 3) Does Sint bring you gifts and candy at home?


As he read, he tells me, "Of course I have interest in Sinterklaas. Why wouldn't someone be interested in Sint? And even when I was little Sint came to visit at school. WHy should he stop coming now? It's fun to have Sinterklaas visit us at school. And this is the dumbest question. Does he bring presents? HA Of course he does. That's what Sinterklaas does. He brings kids presents."


I didn't discuss the issue further with him, he was already aggitated from the necessity of the note.


Yesterday, I was in a warehouse with the boys. Sinterklaas costumes hung on racks by the door and I sneakily diverted Jari away to look at Lego. However, Kaeden saw the costumes and called for his little brother. "Jari, look! Sinterklaas...lots and lots of Sinterklaas." I hushed Kaeden and gave him 'the look' and told him I would rather Jari not see all the costumes for sale. Kaeden looked at me strangely and then whispers "Oh yeah, that's because Sinterklaas is not real, huh mom? You put presents in our shoes, right mom?"


I can't bring myself to say he doesn't exist. In my mind, I know he is alive and well. I also worry that telling Kaeden the entire truth would ruin the magic for my little guy in his last moments of believing. I told Kaeden that just because Sinterklaas doesn't come and put gifts in your shoe, doesn't make him less real. What is real is the feeling he brings, the excitement in your heart. I am not sure that he understands completely, and in this way I am taking advantage of his autism. His desire to have Sinterklaas be real is strong, and in his mind he does exist. I'm not sure it is fair, but that's how it is. Here, in our home, he lives on.

Jari got a chocolate cigar in his shoe a couple days ago. Chocolate cigars are a typical treat for children to receive in Belgium. However, when he pulled it out of his shoe it was a bit wet and broke in half (from his shoes worn out in the wet and muddy fields the night before). "Mama, Amerigo (Sint's horse that carries him from house to house) licked on my candy!!! I didn't know he liked to eat chocolate too!" Jari was gleeful considering this horse ate his candy...and even though he had horse germs, he polished off his treat.


Sinterklaas is back...and I believe in the magic...

Problem Solving

Last week the boys had fall break from school. As is typical, we set out on a Halloween mini-vacation in a bungalow park for the week. This year, Kaeden happily chose to be with us from Friday-Monday, and return to his home away from home Tuesday-Friday. It was a good compromise, one in which we could all live with. It gave us family time, but also a relaxed break apart in a different setting. It was ideal.

However, Friday afternoon we started for Belgium after our week away, where we were to pick Kaeden up at his home away from home at 4pm. The usual 2 hour trip turned into a 4 hour one due to the numerous traffic jams, and you can imagine my fretting when I realized we weren't going to make it in time to collect Kaeden. I tried calling the home, but there was no answer. I tried calling a friend to see if she could pick him up, no answer. Kaeden's cell phone is having some mystery issues (I may discuss this in a separate email, but something to do with using his phone to make emergency calls, as everything is an emergency when it isn't his way...so his service was disconnected) so I couldn't contact him via phone. But, I tried to send a text message and it got through and he used the house phone to return my call.

"Mama, where are you?" he asked me. I told him we were stuck in traffic and had been for awhile. That I wasn't able to make it home on time to pick him up (knowing his home closes at 4). And then, just as I was about to offer my idea of a solution, he came up with one of his own (mine!).

"Mama, should I take the public bus home?" he asked me. "Then we could just meet at home."

When I heard him offer this solution so many feelings flooded throgh me. He managed to come up with this on his own. He found a solution to a problem. He called me to convey his idea. He can use public transport on his own. He is becoming independent. He is making me so proud!

I told him to have his caregivers look up bus times, though both Kaeden and I were sure there was a 4:20 pm bus direct to home. I then asked him to call me back to let me know if it would work out for sure.

The phone rang 5 minutes later. "Yep, mama, there is a 4:20 bus so I'll be home before 5." This coming from MY son! It still amazes me.

I relayed to him that if we weren't home by the time he was, to just wait in the backyard or play basketball until we get there. I told him he could feed the animals if he wanted. I didn't realize we'd be stuck in yet another traffic jam. We were.

I texted Kaeden to let him know, but he couldn't respond (seems he can receive texts, but can't send or call) so I hoped he recieved my message. As we got closer to home a good HOUR later, I texted him again. (Almost there, kiddo! Can't wait to see you!)

As we turned the corner to our house, a whole hour later that the arrival of his bus, and 2 hours later than when we thought we'd be home, I saw my son a scooter in his hands, a huge smile on his face, on the street corner. My heart leaped into my throat. There he was, my beautiful boy...rather, young man...independent, successful young man.

I got out of the car and hugged him tight, for that 2 seconds he would let me, bretahing in the smell of this new side of my son...this thinking, problem-solving person in my midst. And I looked to the sky and said a little prayer of thanks.

Culture Shock and Homesickness

When I moved to Europe it was like I was completing a piece of me. I moved here with my son to join the new man in my life and create a family. Everything about Holland captured my heart. I enjoyed the history, the culture, the language...riding a bike and learning to be a wife. It took me four or five months to really fall into a stage of homesickness and culture shock. And when I did, it didn't even hit me very hard. I missed my family in America, I become a more patriotic person to my home country, and I treasured those special packages from home with little goodies and treats I missed. But I was also enjoying my new life and fell easily into the role of stay at home om and wife, of a student in language classes.

When we moved to Belgium three years after my big move to Europe, the culture shock and homesickness and pity party began. I think moving to yet another country with another language, another culture within such a short time was just too much. The first year I lived in Belgium was the hardest since my move to Europe. I was overwhelmed by everything, fell into depression, and never left the house unless it was absolutely necessary. I felt miserable, and our situation with Kaeden had accelerated, adding to my discomfort. I called my mom nearly daily in sobs.

Then, after that first year, things started falling into place a bit more. Belgium has never quite given me that easy comfortable feeling of home like I had when moving to Holland. However, the country has grown on me, I have learned to understand the people, and all the little societal rules have fallen into a pattern in my brain. Belgium is home, though it has taken a lot of effort getting it to this point. I have created a few friendships, gotten involved in the village, as well as found a comfort level with the mothers of Jari's friends. Soccer has given me another common activity with members of our community. I know what the different foods are, I can use my bank cards, and have deciphered the medical and insurance systems in place. Yet, even now, I find myself being sucked into the confines of home, having to force myself to open up the windows and head out into the fresh air.

Lately, I have been going through a different kind of feeling, something I can almost describe as a second round of culture shock. This time, it doesn't pertain to the new country, language, and people, but in my relation to all the above mentioned. I am realizing that this is my life. It is no longer a novelty, no longer a new adventure. It is my life, and I sit smack in the middle of it. There is no escape, it isn't a temporary arrangement, and it isn't full of frills like it was when it was new. I have learned the system, I can speak the language, and I can live the life. But now, I am wondering why I made this choice. Why did I throw away a college education and a degree? A job I loved? Why did I give up the freedom of my own vehicle and hundreds of miles of space to drive or walk or camp or run, people-free? Why did I give up my closeness with my family? Why did I give up everything I have ever known and loved to take on this new life?

It has taken me ten years, and when things have finally fallen into 'place' I fall head-first into this new reality. The realization that life just isn't what you expect it to be. Choices you make plan the course of your life and future. I'm feeling resentful towards this life, my husband and my family, the people and language. Some days it feels like I just want to go home...but when I turn around and face the four walls surrounding me, I realize I am home. I chose this course of life. I didn't know at the time just how hard it would be. And never, in a million years, did I expect to be going through this 10 years further. But I am. And now I need to get over it, take in a breath of frsh air, and remind myself of all the reasons I first fell in love with Europe. That will be the first step in finding peace and comfort once again within myself.

Things

1. I rode hard today. As I pumped my legs, trying to get to therapy on time (I was late) I felt my muscles working. I always love that feeling. Why can't I make it a part of my every day? I mean, I even like it. Why do I need to be motivated to do something I enjoy?
2. I had a friend call me a few days back and she put unhappiness into perspective. Using her grandmother as a role model (someone who has gracefully lived through many losses), she suggested I plaster a smile on my face until it feels like it belongs there. after I talked to her, the smile had already started to spread. I didn't want to talk to her. I didn't have the desire or energy to try to act ökay". But I didn't have to. She saw through me and pushed me to be a better me. It may take time for that plastered smile to be for real, but her talk did me good.
3. Speaking of smiling. I recognized something weird about myself a few days ago. I was sitting on the couch watching a movie. It was strange when I heard myself laugh out loud at something funny. I tried to stop myself mid-laughter. Since when did I allow laughter to be something forbidden?
4. Last night, Jari and I were watching Click. At one point, he suggested", "I know what that remote would be great for," said my little boy. "Every time Papa and Kaeden start fighting, we could just fast forward through the bad stuff." I told him he was onto something. I told him that was a great idea. My voice portrayed the correct emotion. But hearing him voice it made me want to cry. I asked him if he wanted to tell Papa his idea. He clearly did NOT desire that confrontation. I'm glad he feels like he can open up to me about things that bother him. I only wish I had a better solution than an imaginary remote control.
5. Soccer. It stinks. My little champ is on a team who don't work together, but actually fight against each other. The team is not a team. Each individual player works to score, but never making plays as a team. After the last game parents were discussing how "the littlest player is the only who gave it his all". The littlest player is my son, a year younger than all his teammates. He's also much wiser. And, he wants to move back to his old team, as this one is taking away his enjoyment of the game. It's not easy, but a condition of our allowing him to play in a higher league was that if it didn't work out, he could return to his old team. He wants to return, and though I'm not one to say ÿour wish is my command', in such a situation my son and his desire comes first. He doesn't deserve to be put into this situation when all he wnats to do is play and improve his game.
6. Kaeden has til October 17th to wear his cast, and then hopefully we're home free. If his toes are properly healed it will be a miracle. He jumps and runs and plays as if nothing is broken. I hope it all heals well and he can join in on all his activities...scouts, Judo, soccer...he has missed out on the beginning of the season and I hope he can mentally prepare for joining in.
7. Friday both my boys are free from school. Friday my husband, who has been working extremely hard and long hours, has taken a day off. I don't know what our plans are, if we'll have a fmaily day or a mama/son...papa/son day...but I am looking forward to breaking up the routine of life. Whatever we end up doing, it will be nice to have the change.
8. That's it for now...I'm sure there will be more tomorrow...I'm sure you can't wait!

Stress Of Autism

Is it possible to describe the great amount of stress that autism places on a family? Each family member attributes a facet of that stress, and as a whole its sometimes impossible to cut even with the sharpest of knife. We are a family of autism. And though our outer cover is that of a perfect family, the stress hiding just under the surface is enough to blow away the force of the greatest hurricane. Sometimes it surfaces.

How can a marriage survive the stress of living with autism? How can each parent bring their ideas and beliefs to the table and allow those to mesh together into one coherent idea? Because as much as a marriage should be strong enough to survive anything, autism sometimes takes a bit bite and spits out the pieces along the way. Two people can be deeply in love, sharing a true commitment to each other and their family, and it is sometimes still not enough. Those moments of fighting for a sense of normalcy, for trying to make it through another bout of autism at its finest, is sometimes just too much. Love can conquer all, I was once told, and even believed. But now that I have lived both sides, love can remain and build and join and deepen, but it can't conquer the fight of autism, the stress of being a member of an autistic family. The mariage suffers. The relationship, still filled with love, loses strength, the fight too much for already weary people to continue the hard work involved. You try to show your interst, to awaken passion, to give of yourself as a partner in life, but all this was stripped away with the last bout of fighting against the stress of autism. What is left to prove your involvement in this marriage?

A sibling, unable to understand what this stress means, how it works against this familial bond. How do I contribute? How can I gain from this ádventure'? When will I be old enough to escape? Who can I trust? Where is my security? Why is everything always about autism? About working around his needs? What about my needs? I love him, but I also hate him. Autism is so confusing. And there he goes again, another fit of anger...more stress...mom and dad fighting...where can I hide? Or should I just act naughty to try to make the anger go away...make them focus on something else?

Autism carried through this individual. Too much happening, too much going on. I can't understand what they want from me. Why are they getting louder? What did I do wrong? Now I am angry...I can't cope. I scream, I hit, I curse. Now they are mad. I know they are mad. They are coming at me. It looks like a storm cloud, coming into my existence. I want it to go away. Maybe if I hit and kick it will go away. It hurts. I have autism. Only my own scream can block out the pain of theirs. They don't understand me. They don't get it. They can't help me.

A Family of Autism. A family of stress. No place to turn. No single escape.

Case Closed

I read the email a second time, slowly taking it all in.
We regret to inform you that we don't think we can win your case, so we're closing the file.

It hit me like a wall of bricks. This is the second time they have closed my case, the second time they have decided they can't win. All I have left is to hire my own private lawyer, but that comes at a higher price...if they don't think they can win, why would another lawyer think s/he could? Why can't they win? I did nothing wrong, yet I remain handicapped for life. Is my handicap not enough evidence that something was faulty?

I had physical therapy and an appointment with the neurologist the same day. At physical therapy she told me my strength seems to have regressed. Was I in more pain than usual? Had I done something to tire my muscles out? At the neurologist I was given a final pain medication to try...two more months of medicating myself with all those side effects trying to make living be a pain free experience. Medicated. Not excatly my first choice, naturally, but I'll try it.

But, I was also given two other appointments. One with a revalidation specialist. Someone to help me learn to exist with my handicap. Someone with tools and tips and tricks for functioning as a handicapped individual. Secondly was with a pain management center. Here they take severe measures in helping you to live pain free. Such as, in my case, electro shock therapy to make my pain sensors unable to distinguish pain. My pain nerves will be completely blocked...no more pain...ever, for any reason...no more feeling whatsoever...is this really an option?

I can't say that I am feeling happy with everything that is happening with my hand. I'm not sure I want to try these new therapies, which sound quite permanent and what if I don't like what happens. I just don't know what to feel about it all. Happy to finally be given the option of 'something' that may help, but fearful about what the something is. My neurologist told me he believes I have reached the limit as what improvements I will see in my hand function. It has been a year since the accident...a year since my life was saved, but my hand was not. A year for it to improve...but also a full year...what more can I expect? We're moving onto pain management now, not functional improvement.

And as for the case, to help cover doctors bills and therapy and travel costs and psycologists and medical supplies and me BEING HANDICAPPED FOREVER AND EVER....that's in a constant state with a big red Case Closed stamp across the front page. And it makes me feel like I am unworthy of anything other then being this handicapped piece of a person, collecting bills and costs to further family financial crisis as I peel potatoes worrying about cutting off a finger and don't make stew knowing I can't cut the meat into chunks.

I know I should feel 'lucky', but right now I feel a flop of a mess.

Chicken and Dumpling Brain

I'm feeling a little ADD. I have thoughts, words running through my head, I want to share, but can't. Nothing comes out in anything anyway anyone could understand. I am confused, confusing. I can't get any single thought to cooperate. I say too little in too much.

Chicken and dumplings for dinner. Yum! A whole day boiling that sucker...and tearing it apart...bones, skin, gristle...separate the meat..real meat. By the time I am done, my hands stink and I'm not sure I'll be able to eat a bite...all that ripping apart of that chicken. Cut up some carrots and onions, taste the broth...and the smell filling the house is simply delectable. Can I train my mind to steer clear of the cleaning of the bones? Oh how easy it could be to turn vegetarian. But yet, memories of the last chicken and dumplings make my mouth drip with longing.

How many quarters can make up $5. Seems like a lot, when every time Kaeden gets a quarter removed for unacceptable behavior. Today he left for school with $1,25. $3,75 used up in behavior fees over the course of the weekend. $3,75 worth of moments of anger and aggression of which turns me into a ball of nerves..not to mention the ball of fury papa becomes and the ball of energy Jari rolls into. 20 quarters. 20 chances given to be mean. 15 chances used up. 15 chances in which I have been given a headache, stomachache, and been filled up with worry, sadness, anger, and blame. Yet the $5 is working, on a small scale. 15 chances is better than the 40 we dealt with 3 weeks ago. We don't know what to do. We are at a point of uncertainty...were we ever not? His values have slipped since attending his home away from home. He no longer hears mama and papa's warnings about using those nasty words. He no longer hears us reiterating the proper place for sex. He is with peers, all of whom curse as it's cool, talk about sex cause that's what teenage boys do. But without home to bring it all together, put the priorities straight. Weekends sometimes feel like a little glimpse of hell. But the week no longer holds that tint of black and red. What is best? What do we do? 20 chances, $5 sometimes seems too little, when in reality it's $5, 20 chances too many.

Soccer...passion. The two words go hand in hand. Jari's club moved up a level, meaning we play teams much better than those we played last year. Besides moving up a level, Jari also moved up an age bracket. Put those two together, and we have what we can call a slight disaster. Not that it would have been better staying on with his own team, but our team is not a real team. We don't play together, we are like little individuals all making up this whole that's never a complete whole. I'm concerned that the passion could be removed from the soccer. Losing by 10+ points every game, getting not only beaten but slammed into the ground, and not working together as a real team could take my son's passion and crumble it. I'm not willing to let that happen. So, I am aware and watching, on top of things even as every game leaves me sitting in a pool of frustration. Passion and soccer belong together, hand in hand.

Latvia...a number of days away with my husband. A vacation in every sense of the word...no kids! What struck me was the poor living conditions, in a place filled with soviet influence. The big blocks of homes, people hanging from windows, clothing blowing on balconies. The land is fairly new it's own land, needs time to bring up their standards. In the meantime, people suffer, without knowing they suffer. The people seem happy, content, freedom finally theirs for the taking. Yet in their contentment and freedom, I am able to eat, drink, and be merry on a fraction of the cost I would normally have to pay. Erwin says my visit is bringing in tourism to them, bringing in cash. He is right, of course, but it feels so wrong that I have the chance, the money, the power to take a vacation when that little boy plays in the yard of a home nearly falling to pieces around him. Don't get me wrong, it was a wonderful experiences, so many sights to fall in love with, so much new I never imagined I'd have the opportunity to explore. And I do...I did. Vacation in Latvia...just me and him...perfection within reach.

I examine my friendships. Some people I call friends are not people I would actually consider friend material. They are just here, present, bringing with them the title of friend though they have no other qualities of friend other than physical presence. I get annoyed...with them, yes, but even more with myself. Why do I allow these relationships to continue? It isn't a sharing relationship...one of give and take. It's not like I am acting as a friend should. I wouldn't be my friend if reciprocated. I take, but I take because I have nothing to give. It's not a two way street, but one way with me in front and someone following, trying to catch up, yet never quite making it. I feel devious, a little smart, someone I would never like in real life. I'm not proud of myself, but find this easier than getting out of the relationship. It's beyond time to have a little talk. I'm not sure the talk can save the friendship...if there ever was one.

I read a book. It took me a very long time to read. Often, I dive into a book and don't put it down until I am done, submitting myself, letting it become my reality. I read a book. It took me months to complete, little bits at a time, a page here, a chapter there...never able to allow myself to dive into its reality...but it may have been because it is my reality, every day. Every time I picked up the book, I had to focus on my reality, my life. I was forced to not live as another character in another place and time, fantasizing, but think of my own situation which was often mirrored in the pages of the book. I plan to write more about this experience, when my words aren't so stifled, my mind so scattered. It was a wonderful book, a lovely story, and very true to autism and parenting an autistic child. The thoughts and feelings. Yet it didn't allow me to have those "Calgon, take me away" moments. It was a learning experience in the pages of a novel...fantasy and reality all wrapped up in one. Interesting! Thank you, Tanya.

I have more...much more...but the chicken and dumplings are bubbling just like the words in my head. Ready to spill over onto a clean surface and evaporate into a mess...this is it, this is life.