A New Step

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

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

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

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

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

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

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

Autism Hope

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

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

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

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

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

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

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

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

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

Just A Different Kind of Tuesday

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

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

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

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

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

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

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

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

25 Things About Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Strength

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

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

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

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

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

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

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

GSM

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

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

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

Storyteller

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

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

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

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

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

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

Just The Two Of Us

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

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

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

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

The Inauguration

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

Breast Cancer

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

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

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

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

The Autism Mountain

Yesterday we spent home...just home. We did a bit of cleaning, did a bit of cooking, did lots of playing, and we watched some home movies. That is always so much fun, looking back and seeing how life was and how much has changed. I especially love seeing my babies, how little they were, how far they have come. When I watch those movies, something else arises in my soul. The knowledge of autism and how it has consumed my family. The videos don't lie. You can see the young, fresh faces of involved and free parents on those videos, just five years ago. Today, our tired and stresed faces, filled with lines of worry and fear, have stripped us of that freedom of the young, fresh parents we were. There is more anger hiding behind our words, more discomfort and sadness blurring our every day motions. And there is a 14 year old child, our son, who used to be free to be a kid, who laughed and danced and smiled...and though he still does these things, still has his happy moments, he is not the free kid he once was. I

know, I know, all children grow up and adolescence consumes them. All children change. But what changes I see when I watch the movies are changes that do not bring me peace. Autism has stripped my son of his freedom, kidnapped him from the happiness I once saw glowing on his face, whenever I looked at him. Though his eyes still twinkle with delight, the delight is short-lived. He has more worries and more fears and more adjustments to make than any child should have to have. And whatever I do to try to protect him, to help him to be happy, I can't take away that aspect of his life. 5 years ago, my son was just a little kid with little kid worries. Today he is a teenager with a teenage body and raging hormones, with a mental state of that kid all those years ago. And he can't work out how to fit the two together. he wants to fit in. He wants to be unique, but not unique becasue of his autism. He wants to be free of anger and pain and worry, but autism has stolen that from him. he will never again be free to just be.

And I also saw my little guy on those videos. He was so smiley, so loveable, so utterly happy. There wasn't a moment that he wasn't being just cute as can be, and laughing and making us laugh with him. He had a loving and sweet big brother who cared for him. And when I look at my now seven-year-old son, I know that he too has been stripped of childhood innocence due to autism. He is not able to run around happy and worry-free, because autism has consumed our home and our lives, and he is unable to escape it's presence for even a moment. And his behaviors today show how it affects him. He is stubborn and head-strong, manipulating and rude. The happy go lucky kid that once was is no longer. I know his sweetness hides within him. I see traces of it every day. I see him smile and laugh and do what little boys are supposed to do. But I also see the worry...how he has learned to escape to another room when a tantrum is oncoming. How he, when he is in a mood, knows just which buttons to push to cause one of those tantrums. How he turns to video games to relieve his stress. How he is another child completelty when I have him alone compared to when Kaeden is home too.

Erwin and I keep trying to reach the top of the mountain. We keep pushing each other when we feel we can't take another step. We are supportive of one another, but sometimes having to push someone else when you can barely breathe yourself starts taking it's toll. We try to shelter our little guy from autism, try to make his world seem relatively normal in the face of a storm, try to compensate for what we know he has had to give up. We try to give Kaeden patience and consistency, to help him with the issues confusing his life. We try to be present and do what we feel is necessary in being good parents. But the video doesn't lie. It is cute and happy and peaceful. It is filled with love and family and closeness. And all of that in our real life today just isn't present.

I can't blame it all on autism, because many factors are present in what has become our life. And it's not an unhappy, sad, dreary place either, our home and family today. It is, however, stripped of that piece of joy we once knew. And that does come from autism. Our young faces have aged, our hair has greyed, our shoulders have filled with worry, our hearts have been beaten. We keep doing our best, but our best keeps sliding further and further behind. I so want to reach the top of that mountain. I so want to look behind me and cheer at the top, knowing we have made it, we've come through unscathed, we've been strong. But we haven't yet reached the top. And even though it looks so close, it's evident we're still a long ways from the top. Our son is just now 14. We've got a lot of years ahead of us. Once we reach that peak there's always another in the distance glaring at us from beyond. Some days, watching old home movies makes the mountain seem even steeper. And the tears that fall down my cheeks are not tears of happiness.

The Big Picture

Questions run through my mind. I can't find peace from within. There's something sitting here weighing on my mind. I can't figure out what it is. I'm feeling as if life is passing me by and I don't even know what day it is. Where do the days go? I can't believe it's already Friday and another weekend is upon us. Just yesterday I went and helped at Jari's school and it felt as if I'd been there just the day before. My days are all running together and the only thing unusual I have done is bake a batch of cookies. I've been looking at my plants for a week, knowing they need water...but they are still thirsty. Every day I go out and feed my guinea pigs and know it's time to clean their cage, but I haven't done it yet. There is a box sitting on the floor filled with the last remains of Christmas that needs carried upstairs and put away. But it's still sitting there waiting. My windows are grimy and need a good washing, and every day as I look through them I know it needs to be done, something I even enjoy, the only cleaning activity I truly don't mind. Yet they are still grimy. There's a desk sitting on the landing upstairs which needs unscrewed and pulled apart and moved to the attic. It's been there for two weeks and still, it takes up all the space the kids have to play. Nothing that needs done is getting done. All the simple needs sit waiting, just as I do, waiting for the drive to do it. Waiting for this feeling to leave my body so that I can find the energy to complete what needs to be done.

I can't get comfortable. I feel lazy and strung out all in the same breath. I don't like feeling so worthless. I don't like looking in the mirror and finding HER staring back at me. I haven't been taking care of myself. I do what needs to be done for survival, but that's the extent of my activity. I feel overloaded, but there's no reason I should. I haven't been doing anything strenuous in the least. And yet I feel as if there's no energy left.

I don't care what it takes, today I will complete those little extra tasks that have been waiting in the crooks and corners for some attention. I think that if I just start taking care of what needs to be done, I'll be able to step back and feel a bit of pride. Feel as if I have accomplished soemthing. Let that lonely, disgusted feeling leave me, give me a new outlook on what I can achieve. I need to take care of those little things in order to care for this big thing...this thing that's suffocating me, shredding my spirit, and pulling apart the layers. One thing at a time. And after that's all done, I can sit back, relaxed, and look at the big picture.

Who Are You

I pretend to be reading, but my focus is not on the words decorating the page. I have reread the same passage 5 times, never truly taking in what the words mean. My mind is elsewhere as I glance at the words blurring on the page as my eyes focus on your face. Who are you? You sit with your glasses covering your eyes, the remote in your hand as a movie plays on tv. I have no idea what the movie is about, I hear the words but cannot take in their meaning. Words have no direction now. Only this question burning in my mind takes on any real meaning for me. Who are you?

I look at each feature on your face, from the curls covering the wrinkles on your forehead to the eyebrows and lashes that decorate the green of your eyes. The room is a bit dark to see into your soul and I return to just looking at you, wondering what it is about you that helped me learn to love you; to love you still. I pull my feet up into the chair, turning again to my book, but my heart only searching for answers. Who are you?

Sometimes when I glance across the room at you, I haven't a clue who you are. As long as we have been together, sometimes I feel as if I know only your face as a stranger would passing you in a grocery store aisle. Yet I continue to stare, can't take my eyes off of you, wondering what shadows I can find hidden behind the stone hard surface of your face. We haven't spoken, each of us rearranging our bodies into comfort, you on your chair, me on mine. There is a tension between us, not uncomfortable, just there, hiding in the darkness of the room.

As I turn again back to my book, becoming momentarily distracted by the tv, I see you glance my way. You know I was watching you, and it has brought you to your own question of who is she? What is she thinking? Yet neither of us dares to ask the question. We both return to our activities, me trying to concentrate on the last pages of my book, you on the movie that has returned after a commercial break.

There is so much distance between us, in this space of 3 feet. I could reach out and touch you physically, but emotionally we are worlds apart. I want to draw you in closer, but I don't know how. Who are you?

I finally laugh at something that comes on tv. It isn't something funny, yet in this moment it hits me as funny, considering the thoughts I am having, and I need a distraction, to undo this distance, something, anything to pull you closer to me. I laugh. You look at me, a glint of a smile on your face, but I can tell it's a questionable smile as you wonder again, who is she. You shake your head as you begin to explain to me the joke in this advertisment. I don't care about that. Who is she? Who is he? Who are you? Our minds, our bodies, our worlds are disconnected. We live in this home, sit in this room, yet between the space is a glass wall we can't seem to reach through.

We have learned to become comfortable with this glass wall. We have learned to allow ourselves the distance. But I wonder if you want it to shatter as much as I do. I wish I could reach out and touch the wall, break it down, see through the darkness into your soul, laugh because I am happy, and not because I need a distraction, any reaction. I want to turn to you, reach for your hand, let the remote fall to the floor and shatter into a thousnad pieces, breaking the distance that cowers between us. But I don't. I can't. I don't know how. I don't know how you will react. This distance has become comfortable, but I am long tired of comfort. I want passion. I want our spirits to reach for each other and latch on and run through the grass with bare feet and the sun shining down making our faces glow. I want to quit wondering: Who are you?

Hello From Jari

I thought it was fun at Kaeden's birthday party. The Haunted House rollercoaster was the best. And the second best was the bumper cars. I also liked when we threw snowballs and made a snowman. That was fun. Now my snowman fell down dead. Why are you writing that in English? I am telling you in Dutch. I don't see gevallen. Where is that in English?

I made a picture for Kaeden's birthday and the cake was very yummy. The cake I ate yesterday.

I am reading in school and I am doing math. I made things about Jesus today in school. I made sheep and an ox and Jesus. I colored them and then I cut them out and I got sticks from my teacher. And then I taped them on the sticks and they are puppets.

from jari

Kaeden is 14.

From This......

To This.

And it only took 14 years to get here. Happy Birthday my Riley Boy. I don't know how it happened, but I love you even more today than all those years ago when we first met.

A New Year. It Is Time.

My Christmas tree is still standing in the corner where we first placed it before the holiday gedoe. It has brought me many moments of peace and enchantment, lighting our home with twinkles for the past 3 weeks. But, it is time. It's a new year. Time for a new look on life. Time to remove these last remains of a year in the past, a year in the book of life.

January 6th has past. The three kings have reached their destination of the stables in Bethlehem. The tree is all that remains of the holiday season. Needles are littering my floor, the last of the stocking stuffers collecting dust under the branches. A few forgotten gifts hide under the tree skirt and a few ornaments have made their way into the pile as well. It's time to pack up the memories and savor them for the 2009 season. Tuck each ornament away remembering when it was received and by whom. Fold up the stockings making sure there is no peanut residue as there was one year inviting a mouse and a hole in the stocking. All the Santa candles wrapped up in paper to be opened like a new gift come the holidays 'next' year. And the nativity carefully placed in the plastic bag while each figurine, hand-painted by opa, is secured in paper and placed in the same box we've stored them in since our arrival in Belgium.

But I despise the lights. Putting them on, taking them off, getting them all to work, untangling them, rolling them up so they won't be tangled next year...but always somehow are. The lights are a pain, and they have become my responsibility. Erwin gives me credit, saying I do it much better than him. It's his way of placating me, giving me credit so he doesn't have to partake in the worst job of the holidays. And for some reason it works. The lights are my job. And even though I hate it, in the back of my mind I think: I'm best at this, that's why I GET to do it!

So, our up and coming job for the weekend is to remove our tree, unclutter our home, and make way for 2009. When the main tree is removed, there will be a floor full of needles to sweep up, which ultimately end up throughout the entire house, slowly cleaned up throughout the year as they become embedded in tiny corners, on the stair mats, and under the radiators. The tree doesn't really like to leave, but rather leave a lasting impact.

So, goodbye 2008...hello 2009. A New Year. It Is Time.

Trials

This morning started out with tears. And screaming. And a heaviness in my heart that just doesn't want to go away. Sometimes I feel so optimally defeated. Like, why am I here, how did I get chosen for this life, where is the strength to keep on trucking on. And where has my patience and understanding and love disappeared to?

Kaeden has been going through another of his stealing phases. These phases come and go in our book of life, and it really is quite trying. I begin to question my own sanity as I search for money I thought I had, but which seems to disappear into thin air. I never want to accuse my son of being the culprit, but deep in my heart I know it is him that has stolen from me, and it hurts. It isn't just the money, or the food, or the whatever else he somehow thinks is his. But he also steals my sanity in those moments. And my faith and pride in him. He steals from me something much deeper than just the material possessions. And quite frankly, I am getting tired of this 'game'.

I want to be able to hold my son, stroke his hair, give him my love, without this blinding anger tugging at my heart, filling me with regret rather than letting the love flow fromme through to him. This morning, I said words which I would rather not have said. And I didn't even care that it may have hurt him, that it isn't the behavior a mother should demonstrate to her child. I didn't care, because I feel defeated and all used up, as if there is no turn I can take in which will solve this lack of trust, which can make me feel pride in my son, which will release me of these niggling dislikes that encompass me as I encompass him.

I told Kaeden today that I am one of the last people that keeps fighting for him, for his rights, for his needs, for his perspective on life. I am the one that keeps on giving and and never stops loving and never stops having hope...for him now and for his future. And yet, I am the one that keeps getting hurt, keeps being disappointed, keeps having to fall and pull myself up again. And it's getting scarier as he gets older, gets stronger, and uses his strength to hurt me even physically. As if the emotional abuse wasn't enough. As if he is punishing me for being his mom, for not being able to make everything in his world right, for having to take the time to pick myself up off the floor time and time again.

I don't try to pretend I can understand how difficult life must be for him, wandering through trying to fit in, trying to be someone you are not, trying to accept that this is the way the world is and like it or not you must exist here. I know it is hard. I live with this child, and I see his trials on a daily basis. I try to be patient and loving, be his strength to fall back on in times of need. But I am faltering. I am getting tired. I am lsoing my strength as he sucks it out of me time and time again. And with this loss of strength is also a loss of hope and commitment. Sometimes I just want to quit fighting...quit fighting for him and his needs and his rights, and just let him for once see that mommy is not able to pick up all the pieces and complete the puzzle. To allow myself some peace instead of always feeling so worried and scared and angry. I just want to escape from him and his autism and all the issues that it brings. I want to be free to love him and give him all he needs without knowing that in return I will get another good ole stomping. But I also knwo that I can't...he can't...and I'm not really sure that I feel fit enough to hold on for this long ride. Today, I just feel as if I wanna climb off the ride and quit feeling so utterly dizzy. It isn't that feeling of euphoria and that rush of adrenaline that makes you feel alive. Instead, it's as if I am dying a slow death that sees no end.

I am tired. And that makes me sad, because when I placed my feet in my mommy boots way back when, it was with the promise that I would do whatever I needed to do to provide my child with the life he deserves. That I would love him unconditionally and forever, and that I would be proud of him and me and all the accomplishments we shared along the way. Right now, I am not proud of either of us. I don't feel as if I can love unconditioanlly. My heart has hardened, and love seems a bit too overdone. I don't even have the desire to give any more, to provide him with a good life, when all he does is turn it around and abuse my gift. When is enough is enough? When do you just throw up your hands and decide something is a lost cause? When do you finally know that you cannot mold someone to be his best, and that he may never choose to do it on his own? When does feeling defeated truly become being defeated?

I feel defeated. And I am scared that my feeling is coming slowly to a reality. My heart is slowing its beat. My mind is ready to explode. And my body is frail and in pain. Defeat is just aroudn the corner.

BBBRrrrrrrrRRRR!

It is cold! Very cold, and snowy. A little winter wonderland complete with fluffy layers of crisp, white snow. Absolutely beautiful as I look out my back window, watching it cover the plants and ground completely in a thick blanket of cushiony softness. Not just a dusting, but a complete snowy world, probably 5 inches deep. Since I have lived in Europe, I have missed the snow. It used to be that by the end of winter I was so sick of seeing snow and being cold, of the dangerous driving and wet floors from pulling off snow-covered boots, from trying to find lost mittens and collecting scarves and hats where I went. But it is something I have missed, having just little dustings that bring gray skies and filthy mud-covered streets, perils for cars and children walking to school, but without that added fun of a true snowstorm. A covering of snow where you can't wait to don hats, scarves, mittens and boots and jump into piles of snow, make a snow angel or have a snowball fight. Where you know your face will turn pink with cold, you'll be complaining of frozen toes, but it's all okay cuz you also know that once you've had your snowy fun you'll head back into the house for a hot chocolate with melty-marshmallows and warm up under a blanket on the couch watching a film and feeling all cozy from the cold, crisp air mixed with the comfort of the inside heating and steam rising from your mug. Mmmmm, winter perfection, that cozy feeling.

The boys and I woke to this winter wonderland, and while Kaeden leaped outside to create snowballs to throw at mama, Jari was more hesitant to partake in the goodness of this white world. "My shoes will be all wet. The snow comes over my shoes. It is cold. I don't like the snow." All the while walking on tiptoes through our footprints in the snow trying not to get covered. However, by lunchtime, his tune had changed, and when walking home for lunch I asked if he'd like to help mama make a snowman, he was more than a little enthusiastic. We got right down to business, making our snowballs for his body and head, then added a carrot nose and leaf eyes and a tomato mouth. And while putting on the finishing touches, my tentative son began giggling as he threw snowballs at mama. We laughed and played and chased each other around the yard in it's winter glory, fully enjoying this cold and snowy experience, one which Jari has never known to exist. It was like stepping abck in time to my own childhood, hours of outdoor snow fun, making igloos, playing Fox and Geese, skiing and ice skating. It was wonder, and I saw that on my son's face as well. My only regret was that Kaeden wasn't here to share in our fun, as snow is a favorite of his, and by the time he arrived home from school it was already dark and we couldn't enjoy it fully.

Jari and I went into the house, pulled off our wet shoes (HE refuses boots), left a trail of mittens, hats and scarves as we entered the warmth of our home. "You want a hot chocolate with melty-marshmallows to warm up?" I asked my little guy. "YUM! Melty-marshmallows...mmmmmmm" he replied licking his lips with a smile on his face. And we sat chatting to Papa about our adventures drinking our cup of cozy, our cheeks still cold from the winter, but our hearts warm with the thrill of a day of snow and fun.

Happy 2009!

HAPPY 2009!!!! MAY IT BE A YEAR FULL OF SUCCESS, HAPPINESS, AND HEALTH!

20 Autism Observations

Kaeden has been home from school for 10 days now and we have 7 to go. He got an extra-long vacation with parent teacher conferences falling on the last two school days before Christmas vacation. As much as I enjoy having him home, it's very tiring having him here THIS much. He isn't the easiest of kids.

Here are just a few observations I have made concerning him in the past week:

1) When there is no school, Kaeden is up bright and early in the morning. Instead of understanding the concept of sleeping in during break, he springs out of bed before the first light. And on school days it's the msot difficult part of the day to get him out of bed and ready.

2) Kaeden can not find anything for himself to do, unless it involves a huge mess. In general, if I do not 'play' with him, he doesn't do anything other than watch tv or play a computer game. He has a difficult time figuring out what to do, and even after suggestions he won't do it alone.

3) Kaeden is the absolute most messy person I have ever come across. If he pours himself a drink it takes 3 glasses, 5 spoons, a blender, and a couple bowls...plus drips across the floor and counters covered in spills. When he gets dressed he has 5 shirts, 3 pants, etc...and his dirties are left scattered where he walks as he goes.

4) Kaeden's clothing choices leave something to be desired. He can't figure out what clothes to wear regarding the temperature. Most of his short-sleeved shirts are gone for winter, but the few there he will be sure to find.

5) Blankets. I can't tell you how many blankets I pick up in a days time. I know this relates to his need for pressure and weight to ease his discomfort, but still.

6) The tv must be on extra-loud. I remember back to when he was 2 and I had his hearing tested. One of my first worries with him, and one of my first clues into autism, though that came years later. Certain sounds he can't handle even slightly, but if the tv isn't blaring, it's as if it's not on.

7) Kaeden can't get through an hour without teasing. He does this just to get a reaction. He knows which buttons to push, and does his best to accomplish it.

8) Kaeden's voice mimics the tv. It is LOUD. And the more excited he is, he louder his voice becomes. He can't regulate his voice.

9) Kaeden's eating habits are atrocious. He hums with each bite he takes, and shovels in his food as fast as he can. He grabs at food to get the last morsel, even if there is only a little of something left. He eats enough food for 10 people, and prefers his fingers to silverware. Also, wherever he eats looks as if a baby were sitting there as it's the messiest place at the kitchen table.

10) Kaeden cries at the drop of a hat, he gets angry at the drop of a aht, and he laughs at the drop of a hat. His emotions are so sudden that you never know what to expect in any given moment.

11) Kaeden is very egotistical. As much as I call him the most giving person in the world, which he is, he also cares nothing about others if it will benefit him. He believes that the world is meant to circle around his wants and wishes, and he does whatever it takes to make that happen.

12) Kaeden's conversation skills are getting harder to decipher as he gets older. He speaks through you, not listening to what you are saying and continues to speak one-sided until every thought of his is used up. You cannot reason with him at all.

13) Kaeden loves music. It doesn't much matter what kind of music: radio, MTV, cd-player...he sincerely enjoys it. And he likes it loud.

14) Kaeden's entire existence revolves around the cost of things. He places a monetary value on everything. Opening Christmas gifts he chose for us, he relayed the cost of each gift. He tries to decipher what is a good deal, but he doesn't understand the concept of cost verus value.

15) Kaeden loves hugs. And often these hugs are a jump into mama's arms kind of hug, though he is now nearly a man. Hanging on mama is a favorite pasttime. I continually remind him that I love hugs, but he's getting too big to hang on me...it hurts. He doesn't quite grasp hurting.

16) Kaeden can take a lot of pain without being bothered. If he has something seriously wrong, I often don't know it for quite some time as he can manage pain well. On the other hand, if he has a little teeny tiny owwie, it's as if death is standing at our door. A scratch can send him over the edge, and nothing but 20 bandaids can put his discomfort at ease.

17) Kaeden's eyes are easy to read. When I look at him, I can see right into his feelings. His eyes tell a story, and though I don't often know what to do about how he is feeling, I can often tell in the clarity of his eyes.

18) Kaeden cannot get into the car without there being some issue. Whether it is to go soemplace he wants to go (has even asked to go), or someplace we need to go, the car is sure to bring on some kind of intrusion in his life...and he reacts to this, by either bringing along blankets and a sack of his treasures, putting up a fight, or teasing.

19) Kaeden cannot fall asleep. Whether I put him to bed at 8 or 10, he is always up a minimum of 2 hours before sleep overcomes him. He doesn't fall asleep easily.

20) Kaeden is autistic. He was diagnosed with autism at age 8. At age nearly 14 (oh my GAWD!) he hasn't progressed all that much. He still seems like a little kid in so many ways. He is physically growing into a man, but mentally he remains a child. Sometimes I just wish he would grow up and act his age. Other times I am happy he is able to enjoy the freesom of childhood a bit longer. But it scares me, because what do our futures look like if he doesn't progress.

These are a few observations I have made being with him 24/7 for the past week. They are things that I have lived with and known as a part of my life, but explode when you're forced to encompass them day in and day out. Autism is hard. I'm not saying that to be negative. It is really, really tough being a parent of an autistic child. You try to do your best, but it never really seems as if it is the best. It is living in a constant state of stress and there comes no relaxation, until it's at the point of complete shutdown. I love my son more than the moon and sun and all the stars in the sky. And I am glad he is in my life, and I ahve learned a heap about life because of him. But autism isn't easy...on him or on me or my family. These are 20 of the 200 observations i have made. Just give autism a thought...what is it like for that child or his family? And save your judgements for people who really aren't livng day in day out with these stressors already pressingon their lives.

Letter to Santa

Jari is writing his letter to Santa. He always leaves his note with his cookies and milk on the table before heading to bed on Christmas Eve. Only, he believes Santa prefers Coca-Cola, so usually Santa gets Coke at our house. Anyway, his Christmas letter is private, I am not allowed to read it. But he asked me how to spell reindeer, so it must say something about reindeer. But then he got his markers and started drawing. I'm going to make a candy cane and lights and Santa's hat and a wreath and presents. He drew all these things happily telling me all the reasons they are on his picture. And then he says: I am going to draw Jesus and the nativity on my picture. Santa will like that, because Jesus is the reason we have Christmas. Santa just brings us presents but Jesus gave us the moon and the stars.

And then I felt like a good mom, that my son knows the true meaning of Christmas. The end.

****I sneaked a peek at his letter to Santa:

Santa, I want you to bring me a bell from one of your reindeer. Love Jari 2008

****And yet another reason for me to feel like a good mom. My son has the Christmas magic in his heart. And yes, I still hear the bell ring. I believe in the magic of Christmas!

Merry Christmas!

It is ever so late on Christmas eve. Christmas morning, really, as I glance at the clock hanging above our door. The tree is aglow with twinkling lights that shine into my eyes and make the tears fall a bit more sparkly down my cheek. These are tears of wonder.


Santa has already arrived, somehow passing me magically in the night. Under the tree are packages wrapped up in red and silver and green, joys for little boys come the first light of the morning. The stockings hanging on the wood stove are filled just to above the rim with candy and little treats, sure to bring about oohs and aahs of excitement. The stockings are always my favorite surprise, and I love digging clear to the bottom to retrieve the nuts, apple, and orange I know will be hiding there.


Music filled with Christmas words are giving me my own private concert and I listen to the song about the birth of baby Jesus, our Lord and Savior. I wander over to my nativity and gently touch baby Jesus there in the manger. I say a silent prayer of Thanks for this life I have been afforded. For my husband, and my children who never fail to be the stables in my life, for the family and friends that show me love and care throughout the years, and for a warm home, good food, and just this feeling of wonder that pulses through my body as I stand in this, my very own living room, so peaceful and cozy and yes, all mine. This is my life, and I am thankful.


As I turn out the lights I carefully step over Santa's footsteps...dirty ho-ho-ho footprints which make their way from our hearth to the tree and amaze my little ones year after year. It is the little things, the simplicity, which brings the most surprise. I leave teh Christmas lights on as I close the door behind me, knowing sleep will be short, but filled with pleasant thoughts of this beautiful holiday.


I can't wait for excited shouts of HE CAME, HE CAME. I can't wait for the twinkle I know I will find as I search the beauty of my children's faces. I can't wait to give my husband a Christmas morning kiss, filled with all the thanks I never find the words to say on a daily basis. I can't wait to be handed a package with my name on it, written in shaky handprint from a soul so old, yet ever so magical as the dawning of his birth. I can't wait to hear the church bells sound, inviting us all to remember the reason for this day, even as we rip at the beautiful paper and find the floor again. I can't wait, I'm just as jittery as I was when I was a five-year-old girl, filled with the same awe and wonder and surprise and excitement. Now, I hold it a bit closer to my heart, and it is awakened in the form of thankful tears in place of the shouts and laughter. Tomorrow, at the first light, my laughter will be achieved.


I walk up the staircase, knowing my children are sleeping soundly and safely in their beds. I climb in bed next to my husband, where he has turned on my warming blanket to welcome me. It feels so comfy and I pull the covers over me and snuggle next to him. His arm automatically pulls me towards his chest, even as his breathing is deep and sound. I close my eyes and let the magic of Christmas ensconce me in a dream. A dream which is my reality. The reality of my life.


Merry Christmas From Our Family to Yours. May you believe in the magic of Christmas!!!

Everything Christmas

Yeah, I'm finally truly getting into the Christmas spirit. Last night our choir put on our Christmas concert and party and when I went back to help clean up after getting the boys to bed everyone was drunkenly dancing through the streets, singing silly songs, and you couldn't help but get drawn into their antics. Oma and opa stopped by in the afternoon to see our tree, which really is pretty. I was busy getting ready for the concert and didn't really have a chance to visit with them. I felt a bit distant and later realized maybe I seemed a bit rude to them. I hope not. I hope they realized I was just having a busy day.

I called and talked to my mom for a few minutes and could hear her excitement about their upcoming Christmas celebration. My entire immediate family will be sharing Christmas in a rented cabin in the mountains. It sounds like so much fun. Helaas, I won't be able to share in the fun this time around.

Next, I talked to my brother. I haven't spoken to him since I have been back from summer vacation. It was nice to catch up and feel connected again. His family is living in a camper and when I called they were at my sister-in-laws parents house showering. Seems their water has been frozen for a month and showers are comign few and far between. They were getting ready to go out Christmas shopping. Sounds like the wish lists of my niece and nephew are bigger than those of my own little friends. Snowmobiles. Nothing else shall do.

I was busy on the phone this weekend, as I also talked to my gramma. They are planning a quiet Christmas celebration with lots of snow to keep them indoors. Sounds as if my grampa may be having a harder time with his memory. He looks at the Christmas cards they have received and each time its all new to him once again. As sad as it is, it also has a certain charm. Think of how surprising life would remain if you didn't have your memory, other than that of the past. All the wonderful memories to retain, yet everythign staying new and exciting.

Today, the boys and I sat down with Lego and built some Christmas goodies. But, as it turns out, I was the only one to actually complete something Christmas themed. Jari made a castle (what a surprise) and insisted that castles have everything to do with Christmas. He set it up under the tree. Kaeden made an airplane which he flew through the house trying to attack Jari's castle as Jari explained to him that there were no helicopters in castle days so it didn't count. My Santa is quite charming.

We also got busy with flour, rolling pins, and cookie cutters to begin our Christmas cookie marathon. It's an activity I really enjoy doing with the boys, and they were more than happy to oblige. We haven't started decorating yet, but they taste yummy (except for the rock-hard, burnt first batch I left in too long), and will make Santa very happy come Christmas eve. I was very busy rolling out dough as they can shape them much faster than I can roll it out. I think I got to make one cookie, but will probably get stuck with decorating the majority. Though it's exciting, the thrill wears off quickly.

With the Christmas music playing in the background, the lights twinkling through the house, adn the smell of gingerbread wafting through the air, as well as a stack of cards from family and friends in my mailbox, who couldn't be looking forward to this special day? I, for one, am.

Christmas Delicacy

I think I am going to be sick. Saw this in the news today and couldn't believe it. People in Peru are eating guinea pigs for their Christmas dinner, as it is a cheaper alternative to turkey or pork. I can't believe the newspaper includes a video and a recipe. In some lands this may be acceptable, but here in Europe, where my little PET piggies sit in my yard eating the best of veggies I can give them, I feel shocked. This is not news. It is animal cruelty. It is horrible how they dress the guinea pigs in Christmas outfits before killing them. Those poor little animals. I just feel sick.
http://www.telegraaf.nl/buitenland/2827007/__Cavia_als_kerstmaal__.html?p=16,3

**** Okay, I'm going to add another installment to this post. I am feeling even stronger about my point after thinking about it all evening. I am not so upset over another culture eating guinea pigs. What bothers me is that it is being posted in a Dutch newspaper, with video footage AND a recipe for fried guinea pigs. In our culture, guinea pigs are pets. They are NOT a food source. I researched the history of eating guinea pigs in Inca culture, and it still exists in cultures today. So, yeah, it's the same as eating pigs or cows or, god forbid, horses. If they choose to eat guinea pigs in Peru, so be it. But, I am adamantly convinced, that in our culture today, where I am at this moment in time, this was an unneccesary article to publish. Maybe if there was an artticle published over Christmas cultural differences, it could have been included. But to write an article soley about eating guinea pigs and then include a recipe seems to me a shout out asking people to try guinea pigs. That to me feels wrong. If I want to learn about other cultures and their food I can go in search of that information. I don't need to find a recipe for frying up my beloved pets on the front page of the newspaper. I'm done venting. Good thing I don't have a farm filled with horses, pigs, cows and chickens, huh? And I managed to eat a vegetarian dinner tonight as well. Maybe tomorrow I'll fly off to Peru so I can try fried guinea pig without remorse. But here in Belgium I won't be eating that cute little critter dressed up in his Santa suit waiting to be slaughtered. C'mon, they dressed him in a Santa suit before killing him. That's okay? Culture, say what you will, but sometimes I am shocked.

Pisa

I just talked to oma on the phone. She asked if our tree was a bit like the leaning tower of Pisa. That is the perfect statement for our Christmas friend. From this day forth, until January 6, we shall call her Pisa. And hope that she stays standing as long as her namesake has ;-)

Dutch

Tonight is our women's club Christmas party. I am looking forward to going and seeing the play that is being put on, to helping decorate the hall to look Christmassy and pretty, to sitting among women I am slowly coming to know. But, there is one aspect that has me shaking a bit in my boots. I have to speak. I have to read a story to 75 Vlaams-speaking women with a Beek dialect. I have to do this in Dutch. And though my Dutch continues to improve, though I USED to speak in front of groups of people daily as a teacher, though I have read and re-read the story, I am still a bit uncomfortable about it. Yet, it's a big challenge, and I feel good to be pushing myself to accomplish this. I think that once it is over, and the fear has subsided, I will be proud of myself for being successful in one more thing in life that scares me.

Since moving to Europe, I have lost a little piece of the woman I used to be. I have always been a bit shy and never someone flambuoyant, but I was also outgoing and secure when I spoke, even if in groups I got a case of the jitters. Here, the language issue most certainly detraccts those qualities from me. I now seem, even to myself, as a mussy, quiet schoolgirl hiding behind her sleeve, looking out and wanting to be part of the action, yet afraid to allow myself that luxury. And it is a luxury, being able to use your voice and words to portray a meaning, share a joke, understand, and be able to speak impulsively, say exactly what is on your mind. Though I speak Dutch regularly, and at a fairly high level for an expat, I'm still very insecure about using my words. Sometimes people don't understand me due to my accent. Some people are fearful that they won't understand, so they just don't listen and instead assume they can't understand me. Sometimes, I speak a bit too quietly due to my insecurity, which makes it even more difficult for people to understand, and sometimes I just get the sentence structure completely wrong, or throw in English words without thinking, or can't find the word I am looking for in my bag of brains sitting in my head. It isn't easy to speak another language.

But tonight, I am going to conquer my fear. I am going to stand up on stage, with a stage light on my face, and read a Christmas story about a kleine, grijze spin (a little, grey spider) to a group of women. Women who speak Dutch. Women who are after all, just women. And women who, hopefully, will be able to understand as I speak loudly and clearly into the microphone, who won't be fearful of my accent and miss the meaning the story portrays. Who won't be speaking among themselves and not listening as to distract me in my search for getting it right. And I will have my moment of fame. Because, in the end, once the spotlight has dimmed and I exit the stage, I will have accomplished yet another goal in this book of my life.

I'm looking forward to the party tonight.