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.

Ardennen

Our summer family vacation came together in the form of a camping trip to the Belgian Ardennen. It's a beautiful, woodsy area, hilly, and a complete nature-lovers paradise...nature being the key word when we discuss our family adventure. Nature as in outdoors. Nature as in under the cloud-covered, misty, grey, dripping wet skies....for 90% of our vacation. Still, not being one to complain about travels, we had a really good time and lots of fun moments all together as a family. (Such as when Kaeden called the bunkbeds 'Double-Deckers') We didn't take the tents, knowing beforehand that the weather Gods were not with us, but rented a tiny little hut with nothing more than 4 beds to give us shelter from the storm. It did the job...

Share Some Of Our Summer Fun!

Vedauwoo

I remember back to the morning of my wedding...actually, the days leading up to my wedding. So many visitors, so much to do...a house full of strangers to each other trying to all mix and mingle and come to know one another before the day they'd all land together in one place for a special event....my event, the day I had invited them to share a memorable and treasured moment...my wedding day.

I tried to keep my butterflies alive as they emerged from their cocoons. Beautful, but small, butterflies I had raised all on my own, to complete our ceremony with an Indian Prayer. I cried when I had to be pulled away from necessary jobs and attend my bridal shower, hosted by my aunt in a locl restaurant, inviting everyone she could gather together for the ocassion. I tried to be happy, but was annoyed, until I arrived at the restaurant and everyone was there, there for me...and I was happy.

I went to the beautician to have my hair done for the ceremony, and the bridal wreath of little flowers looked more like the death crown worn by God as he was nailed on the cross. Tears welled in my eyes but I emerged with little pieces of the crown all pieced together by the beautician in a simple little wreath I had so desired, with tiny baby's breath circling my head like a halo, curls rippling around my head.

I took off in my best friend's car to the wedding site, an outdoor location surrounded by natural rock formations, hoping everyone had and would arrive as expected. I had no idea who was ready or not, but knew only that I saw my groom waiting for me as I sneaked behind the rocks waiting for 12 oçlock noon...the time of our wedding ceremony.

The bridal music came on, much to my surprise and happiness. Someone had come through and found the wedding march. I think it was my cousin, though I still don't know for sure. But when the music played, my dad and my son walked me to meet my groom, passing wildflowers and big rocks with all of our guests sitting on the rocks in the sun...a picture-perfect day.

My singers, a good friend and my aunt, sang the songs we had chosen for our wedding. Daddy's Girl brought tears to my dad's eyes, and I saw many guests wiping away tears as Kaeden gave his mama's hand away in marriage. All along, Jari climbed in my arms begging for 'milka'. He was thirsty in the heat, as were numerous other guests.

We said our vows, me stopping to gain my composure as a crying jag came upon me. My almost husband rubbed my shoulder and waited for me to complete the words which would make us husband and wife. I looked out at all the people and felt blessed to be standing there, next to my husband, with all these people witnessing something so beautiful as our marriage.

The candles of our unity candle, held by our moms, lit. A true miracle n Windy Wyoming. We became a family united that day, August 9th, at Vedauwoo. The day I became my husband's wife, his life partner, his companion forever. The day our rings, those circles of union, were placed on each other's fingers, never ending.

It was 7 years ago that my marriage became a reality. It was 7 years ago my husband picked me. It was 7 years ago, I gave everything as a single woman away, and chose everything that comes with marriage. I chose to share, to give, to love.

I wouldn't have it any other way. I wouldn't have it with any other man. I made all the right choices on August 9th, 2003 at 12 oçlock at Vedauwoo. I became Mrs. I became his wife. I became Me.

Happy Anniversary to the Man of My Reality. Even better than the man of my dreams. XOXO

Health

I stopped smoking. On June 30th, I sucked the last puff of nicotine filled air into my lungs. I made a commitment to try to be a healthier me. And I did it, yes I did. But it has been far from easy, and the pangs of longing still linger. Actually, I think when I returned home, back to my own house, my own schedule, my own space, the difficulty started again. But still, I haven't rolled a smoke or lit one up either. I've tried to steer clear of smoking to make it easier on myself. Not easy when I have a smoker for a husband. But this is my choice, not his, not other smokers, and I am the one who needs to be strong, the one who can be proud.

I quit smoking to become a healthier person. I hated waking up coughing, hated my kids asking me not to breathe by them cuz my breath stinks. I hated the brown colored fingers and the gums that were beginning to turn a darkish color inside my mouth. I hated the feeling of being addicted, needing a smoke before I could accomplish anything else in the morning; telling my kids I'd play a game "after I have a smoke". I never enjoyed being a smoker, as much as I needed to smoke. I tried to hide my habit from friends, and always played down my smoking schedule. It wasn't fun being a smoker hidden in the brain of a non-smoker.

So, I quit. I made a conscious decision to quit smoking, chose a date, and followed through. And now, for as long as I can be strong and value myself, I can call myself a non-smoker. I hope it's forever.

Now it's time to focus on my weight issues which lately have been screaming out of control. I desire a healthier me, but being overweight has been a health issue foremost in my life since I was just a kid. Stopping smoking has been good, but bad for my already existent weight issues. It is time to get a handle on this problem and really work at finding health. I am making a conscious decision to get control over my eating habits. I have tried numerous times in the past with various rates of success. I am ready to claim back my health.

Tight

Terror in his eyes
Teeth bared and a sob escapes
His body shaking
As he reaches for me
Clasps to me
Tight

I can't think of anything
But to get him away
Away from the fear
To stop the sobs
The bared teeth
The fear in his eyes
As he clutches to me
Tight

Down the stairs
The screaming
Kicking
Yelling
Nasty words
Just a distant drum
As I scramble to get him away
Away from the fear
As he grips my shoulders
Tight

His eyes when I dare to glance
Tell me all I need to know
Leave, go away, away from the fear
Give him a promise
As I clasp him
Tight
Security

Broken objects mirror broken hearts
Broken souls
Broken defeated fearful sad
I set him in the car
And he begins again
Sobs, shaking, terror
And I pull him to my lap
Screaming
Kicking
Anger just a distant background drum
Holding him against me
Tight

I promise him it will be okay
As his hand clutches mine in his
Tight
Tears still falling, silently
As I point out the big, round moon in the sky

I see the moon and the moon sees me
God bless the moon and God bless me
We chant together, fearful, unsure
His hand still wrapped in mine
Tight

No, don't go home yet, he begs
And I drive on, worried, fearful, scared, upset
But remembering the terror and unable
To place him in that moment yet again
Fear in his eyes
Trembling as he clasps onto me
Tight

I carry him inside
No more screaming
kicking
hitting
nasty words
Still afraid, clutching to me
Just take me to my bed
And I do, holding him
Tight

And the moon, round and big
And bright in the sky
Isn't peaceful, but looks
instead
like a great
emptiness
Tight
in my chest

As his sleep is filled
with jerks and sighs
I hold him, tears silently falling
On his cheek
As I kiss him
Holding him
Tight

A Soccer Dream

Parents are forced to make a lot of tough decisions. Decisions that play a part in who our child is, who he will become. Our decisions form our child's future. And some decisions we make, we just don't know what is right. We can only listen to our child, take our experience, and hope we do what is right. At this time, I am facing such a decision. It's one that has me filled with pride, but also uncertainty as to what is right.

Last night, one of the board members of Jari's soccer club dropped by to speak with us. Jari is currently on a team for kids under 9, and next year will move up to the under 10 team. He is one of 2 kids on the team who plays really well, and proved himself again and again this past year in technique, speed, and scoring. He is the best in his class (I say that with pride).

He has always been extremely shy, and with that shyness there's a tiny piece of him that holds back. Towards the end of the season, we noticed that our son was becoming more aggressive (in a good, sport way) and becoming more self-assured in his abilities. He didn't let a bigger player get in his way, but fought to get a ball or used tricks to make a play. He is a fun player to watch, and we were extremely proud of him for conquering his fear and going for it. It only made him better.

So, last night we get the visit. They asked us if we would be willing to allow Jari to skip the under 10 group and move into the under 11 team. That means he would be skipping an entire age bracket, and seeing that he is the youngest on his team (August birthday) and also the smallest for his age, he could be competing against kids 2 years his senior. The soccer club feels Jari is ready to advance, and doesn't want to hold him back by placing him in the under 10 team. They feel that physically he has enough strength to move up, and his talent for soccer is strong enough that he would still be successful.

As this question was posed, a great searing pride swept through me. I couldn't help but let a smile brighten my face. I knew my son was a good player, but this means others also see his talent for the game. As my smile beamed, something else starting forming in my mind. Technically he may be ready, but how about emotionally, mentally, and physically? Would he be able to handle playing with kids so much larger than him, with more experience, and on a team without any of his current teammates or classmates? Would his self-assuredness that he's been working so hard to achieve become oppressed? Would he be able to understand that being on a team a year further would probably mean he will no longer be the little star of the team, that he may not be the high scorer, that he may have difficulty stealing a ball? And if a kid 2 years his senior happens to kick him, will his body physically be able to handle the pain of someone larger and stronger? Does he need the experience of another year before moving into the big leagues?

This morning I spoke with my physical therapist and asked her what the pros and cons were physically. She said her biggest concern would be the fact that soccer players muscles become shorter from working out, and when going through a growth spurt could cause a lot of pain, as well as need for therapy to help lengthen them. Being that he would be working his body harder than the other players to physically keep up could cause him to stress his body parts, but that soccer is a good form of fitness and would also keep him in shape. So, her suggestion was to watch closely and make sure his body could physically handle it so he wouldn't end up hurt and unable to play at all.

After the soccer guy left, Jari had lots of questions. I saw a smile start to form in his eyes and work it's way to his lips. He looked at us and when I asked him if he knew what this all meant he clearly stated: I'm a good player so I can play with the big kids. The smile still plastered across his face. The rest of the night last night, he spoke of nothing else. He named all the kids on the under 11 team, he told us of each of their strengths and weaknesses, he talked about the coach. And when I tucked him in, I told him how very proud I am of him, my little soccer star. And when I asked if he wanted to move up, his response was an overwhelming "YES! if you and papa will please let me!" There was still a smile on his face as his head nestled into the pillow and I told him we would talk about it.

So, my son's dream is to become a soccer player. It's the dream of so many little boys, to be a professional sportsman. However, my son has a talent to back that dream. But what is best for him? What choice can I make to help him further that dream? What is mentally, physically, and emotionally best? This is another of those tough parenting decisions.

But I still have a smile plastered on my face too. His dream is my dream, and there's a chance that it will come true!

A New Idea

Yesterday found me at another appointment at Kaeden's school. Seven people sitting around the table with notebooks in front of them, folders stacked next to them, pens in hand ready to add to the already huge stacks of papework filled with information about my son. My son. Not some kid down the street, not just stacks of notes and tests and papers, but my son.

Sitting there in that meeting, I realized how far I have come as the mother of my child. I have become harder, more opinionated, stronger. As his mother, I know what I feel is best for him, for me, for our family. Maybe my views aren't always correct, but they are views made out of need, out of love, out of doing the best I know how to do for my child. Always, his life and his future is placed open up in my palm, and I carefully close my fist around it, hoping and praying that I hold onto it tight, strongly, never let it fall.

I spoke loudly and clearly, expressing my worries and concerns. I gave my opinion and held strong onto my viewpoint, even as others struck down my ideas. They may be the experts in the field, but I am the expert on my son. His happiness and his success is determined by how far I push, how far I step out of my comfort zone. He hasn't gotten as far as he has without the strength and integrity I give as his mother. I have been a force behind the success he has achieved. I am the oil that helps his engine run. I need to be thick and dark and greasy.

I listen to what they say, and I accept it all into my mind wholly. And then I form my own opinions based on their advice and expertise. And I add in my own thoughts and experiences and knowledge about my son to form an opinion and a goal. And I push to see this goal met. And sometimes I agree to try something out, give it a chance, in an attempt to further my son's achievements, even if I don't know that it ill be successful, but always willing to try something new. To give ideas a chance, if I feel it has any chance. He deserves all of our ideas and input and trials to find that one thing that works, the one thing that will help him be the best he can be.

Next school year, Kaeden is one of just 5 students who will be entering a new program. A program formed and created specifically for him, and 4 other young men just like him. Kids who have diffculties fitting into the school norms, difficulty learning when contacts prevent them from concentrating. This new program is brand new, based upon a successful program offered in another school, and my son is a guinea pig in the trial. It scares me, but excites me. I offered my ideas, I disqualified some of their input, and I gave them permission to allow my son to be part of this. I think Kaeden will be happy with our choices and decisions. I hope he will be able to prove his success and achievements given freedom within the program. And I think he won't mind being part of this new world opening up to him, a new program designed for him and hopefully working itself out to help hundreds of autistic kids in the future. I hope this decision will be one that helps him to shine...

Kaeden will be the first student to be part of this trial. I'm glad he loves guinea pigs.

Medical Issues

I got an email from Kaeden's home away from home yesterday. I had requested that they start giving him his allergy pills as he was all stuffed up and miserable throughout the weekend, and his pills did manage to offer him some relief. The email was simple, asking if he took pills or drops, but it hit me very hard.

See, my kid, from the time he entered this world, has had numerous medical issues. I'm not sure I understand, sometimes, why one individual is faced with so many challenges. When Kaeden was born he had trouble breathing, very shortly, but needed to be in an incubator none-the-less. When he was about 6 months old, he suffered his first bout of RSV. When he was 9 months old he experienced a seizure with fever which left him hospitalized for nearly a week. And thereafter, my little guy was coontinually in a battle with one ailment or another, his asthma and RSV serious issues which left us hospitalized for months every year. On one of these visits, my little baby actually had to be resuscitated to live.

The doctors offices were our second home, the medications they prescribed keeping him alive with worries about what the side effects could mean in the future. See, he wasn't just on a series of steroids, but series after series, well beyond the indicative amount. But, he was staying alive, taking his breathing treatments and nose cleans 4 times daily like the little trooper that he is. And then, suddenly, he started having major issues with his teeth, where surgery was required to fix them. Was this one of the side effects they couldn't predict from the use of medications? And his skin, so tender and itchy and covered in scales, exzema, was this another side effect? Or was my kid just one of the unlucky ones?

He had to have tubes in his ears from his numerous ear infections, he was one of the kids that actually got a bout of chicken pox from the vacciation, complete with fever and his little body full of dots. He was the kid you would see with tubes covering his little face as he walked, an oxygen tak dragging behind him, a requirement in order for him to breathe. And then, around the tender age of three, having withstood so much already, began his little, mini moments of behavior problems, first signaling to me that there was something deeper wrong with my son.

I had his hearing tested, I took him to a developmental center to see if he was on schedule developmentally. He was kicked out of day cares, and as a single working mom in school, I was the only one there to shoulder these burdens. My parents helped as much as they could, which was a lot, but they didn't live right next door. It was just me and my son.

As Kaeden's behavior issues got more serious, and he was shuffled from school to school, therapy to therapy,we were finally given a diagnosis of ADHD. He started taking ritalin, which helped, but not fully. Give or take another year of issues, and he was diagnosed with Autism. Give or take a few years, add allergies to the mix. Give or take a few years, add Oppositional Defiance Disorder, but not becuase they're convinced he has it, completely, but because it will allow him to have more services...so, I signed the papers...what's one more diagnosis in the life of this child's full account of diagnosis?

Recently, during a sportday at school, Kaeden was having trouble breathing. When I was told, I went into panic mode. I haven't witnessed him having issues with his asthma for 9 years now. The fear that settled in me struck me to the core. Nobody else can possibly understand this fear as I relived all those days in hospitals with my son hooked up to tubes and living in breathing tents. I'm still watching him very closely.

My son, asthma, allergies, ADHD, autism...all the A's. Add in a few more figures and it just seems like this boy of mine has been fighting from the start of his life. And a fighter he is...add another A for aggression. But is it any wonder? Look what this child has been subjected to in his short 15 years here on earth. Could any of us be where he is having withstood so many issues throuhout his short life?

When I give my son his medication, 6 pills in the morning, 4 at lunch, 4 at night, it alwyas pains me. As much as I know that it helps him to function, I'm still, after all these years having to pump him full of medication to help him survive. Just when does a kid get a break? And why, dear God, is one kid the focus of so many ailments? Because as strong as he is, some days it just takes one little email asking which kind of medicine, to send his mom off the deep end. Some days it just aches.

This Is Life

The clothes are all folded, pulled from the washline outside as the sun dried them throughout the afternoon, but not yet put away in closets where they're supposed to be. The fish tank is cleaned, looking rather fresh after the green that had slowly developed over the past month. The guinea pigs are munching on green beans, their cage filled with hay, their water bottle fresh and cool. The dishes are all washed, but not towel dried, and the stove is free of dinner grease and the table free of food spills. Erwin is snuggling in bed as Jari flutters off to dreamland, after a day of school and then playing with a friend. Kaeden gave me his goodbye kiss this morning as the bus hauled him away to his home away from home for the week, his bag full of prized possessions draped over his shoulder. The walls are all painted, fresh and clean, and I gaze at them again and again, a satisfaction overcoming me in the cleanliness. Emails have been sent to wish Happy Birthdays to friends, another to the doctor asking for prescriptions. My agenda faces me on the desk, knitting out my week ahead.

This is life. Just these little tasks and chores and the everyday stuff that comes with living. Watering my flowers and feeling the excitement as they grow. Sweeping off the deck outside knowing the rain will come tonight and wash the remains away. Turning on the kettle to boil water for a cup of tea. Lighting a scented candle and watching the flame make shadows on the wall, fresh and oatmeal white.

It's the little things. Life is not a flaming ball of perfection. It isn't as much fun as opening a prettily wrapped surprise. It's not like two magnets attaching with a force that can't be parted. It's not like opening the mailbox and finding not only bills and ads, but also a hand-written letter saying hello. Or opening the inbox to find a quick note from a friend. It's not like walking into my home after a busy day of chores to hear the phone ringing and my mom's voice on the end of the line, and even though I really had no desire to talk to anyone, it's a feeling of comfort and acceptance.

So, though life may not always be wonderful, may not always be filled with happy surprises, it is life, and it is comfortable. I play games with my children, snuggle next to my husband, laugh with my friends, do what needs to be done...life is life...and mine is quite okay.

Cell Phones And Autism

I never had a cell phone until December. Even after I got it, I never used it much. Actually, I still don't. However, I do try to remember to bring it with me when I go, and actually get calls and messages on my phone. The majority of them come from Kaeden, who loves his phone and has had it since his 13th birthday.

Kaeden and his phone never part. I'm not sure why he likes it so much, but it's his and it's obvious he is in love. Sometimes it gets annoying as he changes tones and we have to listen to it all for hours on end, but the majority of the time it's just with him and he's happy.

One thing I have noticed is that when Kaeden starts to get angry, he texts me. Tells me he is mad, or is going to be mad, or hates the blankety blank blank teacher. I'm not sure if it helps to calm him by texting, but I have this hunch that maybe it does. When we are home, sometimes he lets me know via text that Jari is bugging him. When I get that message I know to put a stop to it immediately. There have also been times when I have sent him to his room and sent him a text message to tell him he may come out when he is calm. He messages me back that he will come when he is calm. We don't have to have conversation which often leads to more angry words. So, texting seems to have its perks, especially for my son who has issues with anger and aggression. It seems to sincerely calm him, give him space, yet a means of communicating, without spoken words which are difficult for kids with autism.

Further, texting has helped him in his spelling skills. Often I receive a text from him and am amazed that he could write it properly. He doesn't use all the codes that I have seen other kids use, but writes exactly what he wants me to know. Such as this afternoon, when he was on his way home from school, he texted me: Mama, I am coming home now. XOXO Kaeden Or after he got on the bus to head to Judo, he messaged me: Mama, I have to take a different route to Judo. There is a market in the town center.

Maybe it gives him security knowing I am always available, such as in the above situation which can be stressful.

When I reply I keep it short and sweet, but always try to respond. It feels like some special connection with him that I don't have with him in spoken language. I am discovering that his having and using his cell phone is his key to communication, especially under stressful circumstances.

I don't know if any of you other parents of autistic kids have had the same experiences with a cell phone as I have, but for us, it seems to be a positive bit of technology in the autism world. Maybe it's worth giving it a try?

Home

It seems like there is so much happening in life now that spring has sprung. The kids have tons of end of year activities, there are more events happening that we enjoy as a family, and the energy is alive as the flowers start to bloom and the veggies grow a bit higher each day. Hopefully, soon, the sunshine and warmth will also decide to spring.

Last weekend was a holiday weekend here. Erwin and the boys had off Thursday and Friday, and we decided to do some remodeling to our home, which took us the entire weekend to complete (well, complete? it's still not complete, but it's getting there...) And we are all happy with the changes, giving us a bit more breathing space and less junk filling every nook and cranny in our home.

The boys were set off on their own as we worked. I asked for them to do a few chores when they complained of being bored, but in general they were given free reign to do as they pleased while Erwin and I worked. They had time to play in the yard, soccer, computer, playstation, board games, toys all at their fingertips. And both of them thoroughly enjoyed just being home, having noplace to be, no time restrictions, no schedule.

As a family, our weekends are usually filled to overflowing with activity. We have soccer and Judo and shopping and a visit to oma and opa...we have an event or two thrown in here or there, a day to the playground (which we did do as a family on Sunday after "neglecting" the kids for a few2 days) or something that sound slike fun, such as visits to a museum or castle or the woods. Some days it feels as if we are gone from morning to night, making it home just in time to tuck the kids into bed so we can start it all again the next day.

And I (we) sincerely enjoy it, all the activities we do as a family. However, it was so nice to have no place to be, nothing pressing to do, able to just do what we needed to do and do it all at home. And what was interesting to me, was how the kids reacted to it. Both of them were in seventh heaven and commented time and again how much fun it was to just stay home. Even without our full attention, they were perfectly content finding things at home to keep them entertained. They didn't need to be out and about to stay busy. They didn't need tickets to this or that or a packed lunch or to put on their seatbelts. They were free.

We do lots as a family to keep us busy, having new experiences, learning, seeing new things. We all enjoy days out doing things together, whether it be a walk in the woods or a day at an amusement park. We tend to get along better when we're out of the house (once we're gone...the getting to and from a place is always an issue, esp as Kaeden adjusts to something new taking place...but we've all learned to deal with this and expect it). However, what I learned this weekend is that maybe we try to do too much. Maybe what we see as a relaxing day out, away from home, is not quite as relaxing to our kids as we perceive it to be. Maybe we need to try to just stay home more often, enjoying our home and our family in the place we've set our roots. We can still go out and enjoy all these other trips and experiences, but in smaller doses. Maybe our boys need home to be a place they can have fun too, not just fun away from home.

I think in the world today, kids are forced to grow up too fast, have too many activities to attend, too many pressures. And though I sincerely believe that Erwin and I balance our kids lives well, keeping them busy but not overwhelmed, maybe we need to consider balancing our family time home and away from home a bit more equally. This past weekend showed me that home is a place to enjoy life as much as it is a place to sit down, eat, sleep, and live.

The Saga of Kaeden

Yesterday arrived in an untypical manner with the morning starting with an appointment regarding our son. It was a therapeutisch project appointment, which means it involves all the agencies working with or previously working with our son. Lots of people, time, and energy trying to assist Kaeden in getting on and staying on the right track in life. Though I try not to, every time I attend one of these meetings I look around the table and am in disbelief at how much money my son costs the goverment and tax payers. And thankful that it doesn't all come as out of pocket expenses. And grateful that so many people are working for my son, to assure him a successful life, now and in the future.

Though many different areas of Kaeden's upbringing were discussed, the one that remains most hopeful and happy and joyous for me is the positive feeling surrounded by his living at school, in his home away from home. Yet again, we were treated to a very uplifting report about how well he does in the home, how he has friends and does his chores and never causes an uproar. How they get through the rough spots with him through humor, and how Kaeden has such a great sense of sarcastic humor. And though I don't need a report to tell me this, as I see it in his eyes or hear it in the excitement of his voice as he tells me a story, it's so nice to hear after years and years of always living with negativity, that my son is doing great! This fact lays a rainbow-colored layer over his less positive areas, like opening up a special prize and being rewarded with the one thing you have always wanted but never imagined you could have. I am truly just thrilled!

At school and at home, the verdict remains similar. Kaeden does well about 80% of the time but the 20% when things go wrong, it's something so big and bad that it throws a black cloud over the other 80%. His meltdowns remain filled with a frenzy of aggression and violence which put fear into those around him. Fear is not something easily forgotten, trust never earned completely back.

More news which was delivered during this appointment was a new school program they are working on implementing. This has me both excited and worried. It is a program not through the school, but through the group home, in compliance with school laws. It will be small groups of kids with issues exactly such as Kaeden (most importantly being unable to function with other people "getting in his way" causing him to rage out), supported by a full time teacher as well as additional staff. The classroom will be housed in a separate building from the home and the school, and the kids will have their designated work to complete, but with an allowance for them to complete it on their own terms, regarding time, place, etc.

Since Kaeden has been diagnosed with autism, it has been branded into me that this is a child who needs structure. That he can't function without a set schedule. That he craves a set forth plan. And now, in ten minutes, I am told that he is a first-choice candidate for a new school in which structure, planning, and scheduling is of the least importnace. It threw me for a loop. Kaeden needs assistance to accomplish what needs to be done. He can't even brush his teeth without having someone standby to make sure it gets done. Yet, they are going to give him the freedom to plan his own day, get through all of his lessons? That he is going to be responsible for managing his time on his own? Granted, his assistants will be there to help him, but this goes against everything I have been taught since learning about autism.

However, it excites me. My son, one of the laziest people I know (probably due to his inability to figure out how best to manage his time...too many outside factors which impact him), may have the chance to learn to manage his day and his time and his classes on his own! He may be able to figure out that if he first does his work, he will have the freedom to watch a movie. That if he completes his chores first, he can play a game of soccer when he wants, instead of only after school. That he knows what needs to be done, has the resources to ask for help if needed, and yet can do it all on his own. A completely functioning individual.

I have many more questions about this school and it's policies. I have questions about what coursework Kaeden will be allowing to partake in (woodworking is one of his faves, will he be forced to give that up?), and what will happen if he doesn't succeed in managing it himself. In addition, the school is still in the planning stages and they aren't even sure of all the logistics of it yet. But it sounds interesting. My son may be a guinea pig for this project. Am I willing to let him be?

So, that was a bit of news on the Kaeden front. I have to say, though I shivered and shook throughout the meeting (these things always have me a complete ball of nerves), I walked away feeling really positive and good about how things are going for my son. Though clouds covered the sky, it felt as if the sun were shining as I left the building. WE still have a long stretch ahead of us to assist Kaeden in becoming an independent, full-functioning adult. But it sorta, just kinda feels as if maybe, just maybe, we might be on the right track. Do I dare breathe a sigh of relief?

Not yet. But it does give me renewed hope.