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.

A Moment of Awe

This weekend we went to the races. It's a drive a bit more than an hour to another world, still in Belgium. Spa. You may have heard of it? French-speaking, in the hilly region from where fresh water comes. Anyway, back to the races. We went to the races.

I have written about the races before. I love the Spa track as you can walk for ages and seem to never find the end, curving through forests, going down another hill, then climbing back up for another view of more trees set against another hill. And in between you see glimpses of the track. In some places you can even see the cars race by and then catch a glimpse of them 20 seconds later way off in the distance on another hill. Or, even better, you hear the cars. Their scream as they zip by you, barely allowing you to focus on their color as they go past in a foggy blur, the sound of their power pulsing through you. It definitely pulses, you can feel the blast of those cars engines in your heart, in your ears...and I absolutely love it!

It sort of feels like my own personal high. Like my drug of choice. I don't need it all the time to get by in life, but in those moments I am afforded it, I am in bliss. I sincerely am in awe of the cars, their engines and design. The tires so smooth and black. The way they speed across the track. Watching the mechanics and technicians working at an unbelievable pace to get a car back on that pathway to winning. It really is an amazing experience. (Unlike Nascar which did not even slightly light my fire).

After the races, we set the GPS to home, but took the short route through the hills and over the river, through little villages and past the blooming fruit trees. It was a pretty drive, a bit foggy, a few showers, but all looking so unlike home, which is an adventure in itself. As we drove down one road towards our destination, I took a picture and then realized what I was photographing. A sign with 4 stars naming the Henri-Chapelle American cemetery.

I have been to numerous American cemeteries in Belgium and the Netherlands. Each time I go, I am filled with disbelief and a sense of stillness. We stopped the car and though visiting hours for the reception were closed we could enter the cemetery itself through an open gate. We did.

The blue skies opened up and I was again in disbelief. Covering the cleanly manicured lawn of grass were thousands of marble crosses, creating a pattern over the vast ground. In the middle was an angel hanging in the blue sky, welcoming you to this valued place. This place where thousands (7,989) of American soldiers were buried after dying in a war. After a first glance, my throat closed and the stillness of the air surrounding me became my focus. My eyes misted over as I realized that this place in which I stood was more than just a memorial. This place housed the stories of all these men who were never able to return home in the welcome arms of loved ones. This place brought countries together in a world torn apart. This place showed courage and rage and forgiveness and insanity. It showed how much America was a place to be looked up to, the power with which to be reasoned, offering men, American men, to help achieve a victory and bring the world back to a sense of calm.

As I watched my two boys run down the rows of crosses, with a few Jewish stars changing the perfection of line across the grass, I felt a great sense of patriotism. It was these men who fought in a war to allow my children the freedom to run through grass, now on European soil. It was these men who gave their lives to allow my children to feel safe, for their needs to be fulfilled, as well as their wants. As I watched my children run across the grass, I knew that at this moment in time, they had no idea what they were running amongst. They will one day, hopefully, as they take their own children to such a place, a graveyard, a cemetery, and tell them to please be quiet as this is a place to honor great men who fought in a war. Men who gave their lives, for any number of reasons and most probably without realizigin what the outcome would be, but still courageous and giving heroes...and me in a moment of awe and disbelief and amazement...of which those race cars in Spa stand not even a second close.

Caution!

I recognized something yesterday that I didn't really consider before. Jari is a very cautious kid. Yesterday he had a friend come to play and we went to the playground where they could also ride their bikes up, down, all around. Another classmate joined them on the playground with her little brother, and the four of them started tearing up the playground and surrounding area. By tearing up, I don't mean demolishing, but rather just getting busy having a good time.

The girl climbed on top of the swingset, making her way across the high pole. Jari's friend joined her, and even little brother tried unsuccessfully to do so, being too small. The whole time I tried to keep my mouth closed about it being dangerous and to get down, but I refrained. Jari didn't follow suit. Instead, he slid down the slide and started digging in the sand.

Later, the kids were chasing each other around on their bikes. Jari's friend came and asked if he could go on the hills, which were housed between a very small pond and the stream, which was not deep. I told him he could, and he happily set off riding along the ditches, up and down the hills, through the edge of the pond. Jari stayed on the pathways, riding along the edge of all the action, his helmet covering his little head.

As the races started, and they started playing a form of Simon Sez, I was wondering how Jari would react. In the beginning, he was very cautious about it, riding with precision following his friends, but more on a gentle slope than right down the middle. Eventually, as he started feeling more brave, he ventured after his friends down the middle of the hill, onto the edges of the ditches, and around the pond. When it was his turn to choose, he still followed the pathways in the distance.

As the kdis went back to the playground and started jumping from the steps, seeing who could jump the furthest, Jari once again turned away from the game, settling instead on the swings. As the other kids jumped first from the lower steps, and then higher and higher, I was wondering what he was thinking and feeling. Wondering if he recognized his fears. Wondering if he was disappointed he didn't feel safe enough to join in.

As I tucked him into bed last night, I carefully posed the question. "So, did you have fun with your friends today?" I asked. "Yes, but mama, I didn't wanna go riding on that ditch. What if my bike tire went too far and I fell in?" he asked. I responded by telling him that if he had fallen in it was very shallow and he'd be okay, but that if he didn't feel comfortable doing it, that was okay too. He went on to discuss every of the above mentioned dare-devil feats, telling me why each was dangerous and why he didn't want to do it. "I could fall and break my ankle and then I couldnm't play soccer. I could crash, and I have a helmet so I would be okay, but they don't have a helmet so they could be dead. (Even though he always begrudgingly puts on his helmet, he still does it, under mama's watchful eye...and he's only one of the handful of kids who do wear one, unfortunately) And I just like to ride around and not do that crazy stuff, he continued.

Hmmm, I wonder where that comes from? Does it stem from me always saying Be Careful, and him always being under my watchful eye (I am more present in his play than the majority of the other parents), or is it a personality trait? Or maybe a combination?

In any case, though I hope he doesn't feel like the odd man out when playing with his friends, I am glad he has the sense to be cautious. Being a daredevil has it's time and place, but knowing he is cautious and seeing him choose his own road was a good sign for me. He doesn't have to be a follower, but can lead on the easy pathways life's road will take him.

A Medicated World

I am feeling old. It seems like the past year I have aged more than in any previous period of my life. I no longer feel like a spring chicken ready to go out and play, but more like an old hen pecking away trying to just get through the day.

This new medication I am taking to relieve the nerve pain I have in my hand and arm is working. The discomfort has subsided some, though not completely, but I am hesitant to say that it is working, as the side effects of this medication are numerous. If the nerve damage remains but the discomfort is relieved, BUT I easily sleep 16 hours/day (not an exaggeration), I fall into doors and walls because I have no balance, I can't focus because everything is fuzzy, and I have a near always stomachache, is the medication then working? Thse are the side effects of a medication to help relieve nerve damage.

I feel like I am in a never-ending spiral of health issues. I now need to return to physical therapy 3 days/week (that's nearly a part-time job in itself, by the time I get there, do therapy, and get home), take pills twice a day, and deal with the side effects knowing that it's not actually a cure for my hand, but a lifelong sentence to just control the discomfort that arises from nerve damage. I don't want a control, I want a cure. It feels unfair. I just want to be able to use my hand without pain. But that's too much to ask. A stupid sink and God's mysterious plan took that luxury away from me.

I am whining, yes. I have that right, as this medication I am on also has that side-effect. Being cranky and irritable and blowing up at those around you for no reason at all. Just ask my family members how much fun I am to be around. One day I can't sit still and get a single thing done as I flitter around trying to concentrate and then sit down and my eyes immediately close to block out the fuzz, but then my head falls as I head to slumberland. And the next day, having used so much energy the day before, I can't even get up or I fall over from a dizzy spell, if I can manage to wake up enough to get up at all.

It's no fun. And though I am going to hang on and finish this out for the five weeks until my next doctor visit, I cannot see this as being an option for the remainder of my life. It is doing it's job half-heartedly in controlling the nerve pain, but my life has become a misery. Nope, not for me. Onto the next option, whatever that may be. Or else I'll just live with it (it being the discomfort and pain), because I certainly can't live with it (it being the pain medication).

This accident and the handicap that has been left behind, my so-called hand and arm, have absolutely aged me this past year. I may be nearing the big 4-0, but lately it feels more like the 6-0. I can whine and cry and throw a fit, because this is my life, this is it. And it feels like a big huge lump of a disappointment. Life isn't so much fun.

Taking this medication and having a handicap has also opened my eyes to how Kaeden must feel. I wonder how his medication affects him. Does it cause him to feel dizzy, to feel off kilter, to have a fuzz filtering out the world? Does he hate it when people ask about his autism, or bring up the fact he has autism? Does he just wish it would all go away and he could just be? I have always wondered how he feels, as he isn't all that open to discussion about such things (he is unable to vocalize these kinds of issues). Being able to see life through a handicapped, drug-induced haze, I can only hope his life looks mosr positive than mine. I may be whining, but really, this is just NO FUN!

The Garden and Neighbors

My stomach is tied in knots. Today has been a stressful day for me. Earlier in the week I spoke to our neighbors about our plans to take over our yard. Yes, we have a yard which is twice as big as the one we now enjoy, we pay our taxes for that yard, yet we are unable to use it. Why? Because 20 years ago a shed was illegally constructed on the border of our land, and because of the way the houses have been separated and land issues evolved, we are required to give a 3 meter thoroughfare to our neighbors. As is the neighbor on our left, which she has done by creating a driveway. We give our three meters, but at this moment it is through the very center of our land, and I am hoping to change that to create it on the back side of our land, and give us use of our land to build a larger garden area for us to use.

So, this morning, after speaking with the neighbors who have the illegal shed earlier in the week about the circumstances, I went to discuss this issue with the local policeman. He is a policeman assigned to our village for all village issues, and I have come to know him through my crossguard duties. So, I went to him asking for advice. After showing him our land boundaries, he agreed that we had the right to recreate our yard, and went to discuss the issue with the neighbors. When he came back to my house to tell me what was said, he told me "I'm taking off my police hat and speaking to you person to person. The best way to solve the issue is to talk about it. The neighbors understand that their shed is illegal and needs to be torn down, but their oil tanks (used for heating) are housed in the shed. If you could all work out a solution so they don't have to move the oil tanks, it would be best." He then put his hat back on and told me the steps I would have to take to legally have the shed removed. It is a huge ordeal and can cost a lot of money, but I am hoping we can resolve it just between the parites involved, and I am willing to give a bit extra of my space in order to let their oil tanks stand.

So, after the poilce officer left, I was feeling quite pleased that it could all work out satisfactory for all of us. Fast forward a few hours...the neighbors (both the man and wife, earlier only the wife was home) greet me in the yard where I am working and ask to discuss the situation with me. They are Turkish and the husband doesn't speak perfect Dutch, but seems to understand it, while the wife speaks fluently. He is less willing to tear down the illegal shed. He thinks that if we take over the land on our left and leave the back as it is, everyone should be happy. He tells me how he also gives to allow our other neighbor space to drive through his land, as well as walk to his back door via his land. He keeps walking along my land borders showing me how I can rebuild my land to create room to get through without him having to remove his shed.

He is correct in that there is room, but my question is: Why should I pay taxes for my land and allow everyone else to use it, but have no use of it myself? I want to have a larger yard. I want more space to create a larger area to grow veggies. I want more room for my boys to place a swimming pool in the summer. I want to look out while I sit on my patio and not have to look into the clothes on the clothesline. It is, afterall, my land. Why shouldn't I have use of it?

So, I told the neighbors after much discussion that I may be willing to give a bit of space, but that the shed needs to come down. I told them that we could do it the easy way and come to an agreement, or we could make it difficult and let a judge decide. They want to erect a new garden shed, plus have the space for their oil tanks. But they want a large garden shed. Not just a small one which I could be willing to allow. They also kept speaking back and forth in Turkish, which I wasn't pleased about. I think they should keep it in Dutch so I know what is being said as well. She didn't translate all that he said as she agreed with him. He also claimed that if we make problems for them in placing a shed, they will make issues for our immediate neighbor and not give him thoroughway on their land. Why is this an issue? His recently renovated garage sits on their property line. In order to reach his garage, he must have throughway through our and their land.

So, I told them that we should all think about our options and we'd all sit together to come to an agreement in the coming weeks. On a Friday afternoon when we are all available. Legally the shed needs to be removed. If I don't demand that now, it won't happen (there is a law saying that once a building stand for 30 years, it is considered legal) as the years pass quickly by and it's already been there for 20. So, how much land am I actually willing to give in order to keep peace with my neighbors? Or, should I quit caring about others and just place my new fence and give my three lawful meters and say so be it, this is how it is?

It's a bit dependant on what agreement the neighbors bring back to me. If they are realistic and don't try to tell me I should be happy with what I have and just keep paying taxes for them to use my land, which is basically what they told me today, I may be willing to work with them. However, it is my land and my personal space, and I will have use of it in the manner in which I decide. Nobody is going to tell me what to do with my land. But if they are reasonable, I may be able to keep it out of court...becuase though I won't tell them, I'm just a tad bit nervous about it coming down to that. I don't like the idea of court, and my stomach is already turning just from the various discussions I had to undergo today. I'd hate to have to feel the stomach pain I'd have sitting in a courtroom. But, I will....if I have to.

A letter in the car

Our vacation to Germany was wonderful. It seems to me to be one of the best vacations we've had. A great combination of exploration and discovery, but in a relaxed and easy manner. The kids really seemed to get along well on this trip, and seeing them laughing and playing together was good for my heart. There were no major meltdowns and no major problems. It was a typical family vacation and rejuvenated all of us. So, from me, there are no complaints.

However, on the way home, Kaeden had a meltdown. I'm not entirely sure from where it stemmed, other than the boys playing a game and rules changed, and then the game was thrown and from there it all went downhill. I asked Erwin to stop the car, and at the following exit we got off and parked in the driveway of a business. Though I wouldn't call this meltdown one of Kaeden's worse, it ended of fun vacation on a negative note. It's something we have learned to accept and anticipate when something changes (vacation is over, back to home and school), but nevertheless, it still comes as a shock, and still hits you with a blow. Here is the letter I wrote in the car, sitting in the backseat with my son, following our meltdown. I call it ours, because it is never just Kaeden involved, but us as a whole, a family with autism.

Just stopped. I am so angry. Had to get off the highway because my two wonderful kids can't stop fighting. And Kaeden can't keep his hands to himself in which Jari screams like a banshee. So, off the highway to change seats and get them away from each other. When am I going to learn? Even if they promise there will be no problems and beg to sit next to each other, don't do it. It is simply asking for trouble.

So, Kaeden flips out and the thing I was most nervous about was being by the busy road. Cars speeding by as he kicks and screams and hits- I was afrais he would run out there in front of a car. And his mouth- I can't stand listening to how he speaks to us, but most especially to Erwin. The names he calls him are so rude and disrespectful. I actually hate the way they speak to each other, neither of them is respectful, but in this case Kaeden was definitely at fault.

As he it the fence with his belt I demanded he forfeit it before getting back in the car. His tantrum continued and when I moved Jari's booster seat to the front seat and saw Jari just standing there on a rock, off to the side, observing the entire situation unfold. His hands clutched in his pockeets just watching. How do I feel? Sad, sad that at 8 years old this is the only life he has known. But even more so, sad that being this is the only life he's known he still hasn't figured out how to help prevent these scenarios. I don't blame him, not at all, but I can't understand why when he sees such an ocassion arising, he doesn't know enough to stop.

It's often, though not always, clear that Kaeden is ready to explode. Erwin also has difficulty with this, though in his case it is more that he believes Kaeden must obey and must succumb to the rules. I just don't know. For me, I'd rather enforce only when it's something important and forego the fights and meltdowns and the ensuing feeling of sadness and hurt which remains in my heart long after the tantrum has subsided. None of us is right or wrong, I suppose, as we all must do what we have to do to live with autism. In general, though, Kaeden is most calm with me. There are many factors that contribute to that. All I know is that autism is the culprit, and because autism is a part of who Kaeden is, he gets the blame. Should he? I'm not sure- sometimes yes, sometimes no- but even with autism he has to learn to live in the world according to the rules society sets forth. Or we as parents set forth. Or teachers set forth.

Kaeden seems somewhat more controlled when he has a meltdown compared to a couple of years ago, but they still happen, and when he is stilled, calm, and happy again 20 minutes later. my heart is still beating double time, my blood still pulsing hotly through my veins, the 20 minutes a lifetime, a mixture of fear, anger and pain, added to the guilt I feel that all my entire family must go through, each of us in our own way, as a result of autism.

Erwin let me handle things during this episode-he let me take care of business and get Kaeden calmed down so we could go, and for that I am grateful. As we continue on our way Jari is role-playing with his stuffed bear, Erwin driving us home, Kaeden watching a movie as he points out a hot air balloon he sees in the blue, sunny sky above us---and I? I just have tears hiding behind my eyes, knowing this won't be the last time, certainly wasn't the first time, and I once again curse autism as we head towards home, our family, vacation nearly ending, once again autism ending it in the way which is so typical, in the manner of which we have all become accustomed, a change on the horizon upon which autism cannot bear, but must. Life goes on----

And that is my take on our last autistic meltdown. And even so, it was a truly wonderful family vacation, one I will treasure forever, remembering my boys chasing around the playground, their laughter filling the silent air.

Squatters

I learned something new last night. My husband came home from work and told me about the krakers (squatters) occupying the building next to the one in which he works. I have never heard the term kraker, and had no idea what he was talking about. He went on to explain what they do and the legalities of this practice in the Netherlands. I was surprised.

The law allows squatters to legally enter any building that has been uninhabited for more than one year. Until there are new renters or the building comes into use, they have the legal right to occupy the building. This law comes from the 1970's when there weren't enough homes for all the people, and uninhabited buildings became places for them to call home.

The building on the terrein where my husband works is an office building. It is huge, but has been empty for over a year. And in one way or another, these krakers have entered the building and now call it their space. Does something seem wrong with this picture?

To me, I find this practice one which puts me at a disadvantage. I have to pay for my home, taxes, power. If I was a squatter, I wouldn't have any of these costs. I may have to move around a lot, or get caught up in riots with the police, but legally they can't force me out without notice. And in an office building? How can that be considered proper housing? It seems a waste of government money to place protective forces to guard these buildings. And what about once they need to be forced out in a riot situation?

I can understand the squatters making their point, saying that these buildings shouldn't be left to rot and create situations such as this. That buildings have a purpose to be used, and not sit empty causing neighborhoods to become polluted. However, this practice seems unreal to me. They just overtake a space and call it their own? They don't follow the rules set forth by society and create a home of their own? I had no idea such a thing was legal.

So, I learned something new today. I certainly won't be leaving my home empty for year. I'd hate to come back to force a new family out of my own home.

Sleepover

Today marks a first for us. Today, after soccer camp, we'll have a special guest come stay at our house. Today, Jari has his friend coming to spend the night...for the first time ever! And boy oh boy, is he excited!!! All he has talked about for a week is the upcoming sleep over and what he and his friend will do. All he has considered is where they will sleep, what they will eat, what movie they will watch. He is so excited!

Many of Jari's plans have to be put on stand-by due to Kaeden's behavior issues. Having friends come spend the night is not an option when we don't know how Kaeden will react to the extra stimulus, what may cause him to blow. It isn't fair to our youngest, and though we realize this, it's also unfair to put another child into a situation where he'll be subjected to an outburst. So, though many of Jari's friends have had sleepovers, Jari has of yet been unable to have this rite of passage. However, that all changes with this afternoon.

While the boys are at soccer camp and Kaeden happily and safely tucked away at his home away from home, I'm going to set up a tent, blow up some airbeds, and create a mini-camping for them to arrive home to. Jari plans to have his friend help him work on his hut in the farmer's field, but after dinner it will be a movie and popcorn and cookies in their little getaway hidden in Jari's room. "Can we stay up til 10 mama?" he asks with his eyes shining. "Can we eat cookies and have hot chocolate and watch a movie til it's dark?" "Do you think Xander will like sleeping in a tent? What if we get scared? Can I wake Xander up in the morning? What if Papa is already gone to work when we wake up and Xander won't even see him? Do you think my pyjamas will fit him (in case his mama forgets to pack his, of course.)?"

The questions are unending, the excitement filling his mind and body with stress. He can't believe this little treat has been offered. He can't believe he's finally having a friend come spend the night. He can't believe he's finally big enough to take on this type of party.

And his excitement is working it's way over to me. "What should I make for dinner? Do you think Xander likes....., are you guys going to take showers or a bath after training? What movie are you going to watch before bed? Should I let you stay up til 10 when you have another full day of training tomorrow?" This sleepover party is exciting. I remember back to my own sleepover experiences and how much I enjoyed spending the night with a friend. How much fun it was to have a friend come stay with me. How the rules changed and gave me more freedom. And now, it's happening with my son, for the first time ever in our home. I better get that tent set up as promised, because though it's just hours away, 4 pm can't get here soon enough! It's so exciting!

Growth

It has been a very big, busy week. Tonight, I sit alone as everyone sleeps in bed, after pulling out the vaccuum to clean up glass that shattered from one end of the house to the other as Kaeden dropped his bowl on his way to bed. As he started to defend himself and explain what happened, I quietly told him that it was an accident. A simple accident and accidents happen and he doesn't need to explain. Though I become quite stressed in the face of messes and broken objects, never have I chastised my kids when it's an accident. There is no reason to feel guilt for something that just happened. But it stopped me for a moment, his nervous explanation, wondering why he was so concerned when he's never gotten in trouble for something like that. And I considered all the things that break in his presence, all the things he breaks in anger, and it made me realize that he feels the need to explain to come to terms with what has happened. So often he has to explain his acts, so often it wasn't accidental, so often he has to defend himself...this time, I hugged him tight (he let me) and told him quietly that it was okay. I could feel him relax under my arms, his body soften, his breath escape. It made me feel good to be holding him at that moment, realize how much stress he holds inside, how my simple gesture allowed him to just....breathe. I need to remember, try to be patient, allow him to relax. My son just looked at me and answered "Yeah." So simple. So free.


I also discussed something I was sincerely worried about discussing with him. He had off of school today and we sat and talked about our summer vacation plans. I signed him up for a kids vacation camp with one of his friends from school, and he was so excited as he told me about all the fun stuff he'll get to do. I love knowing he has finally discovered true friendship in life. This young man he has befriended, and who has befriended Kaeden, has already managed to work his way into my heart. I appreciate him, allowing Kaeden the chance to have and be a friend. Both of them are so deserving of each other.


Anyway, I booked plane tickets this week for a vacation home. Just for Jari and Mama. I was worried about Kaeden's reaction to this bit of news. He thrives on being with Gramma and Grampa and going back to America. He loves retelling stories of his time there, remembering so much from our life before Papa and Jari, where he lived and what we did. I was afraid I was setting myself up for a very disappointed kid, but he proved me wrong. Initially, I saw his look of disappointment cross his face. He looked down and away, but immediately gave me full eye contact as he asked when we would go. He asked about the logistics, who would take care of him, when he would stay at school, how he would get there. When I told him he would have a full week of vacation with Papa, the look that crossed his face was one of sheer fascination. His smile was bright as he said "Me and Papa can finally have some time to do fun stuff alone!" He continued to tell me that it's been a long time (2 years) since Jari has seen gramma and grampa, and repeated in his own words all the reasons I told him Jari needed a chance to go to America this time around. And he was okay with it all. He was completely and totally okay with my decision. I had absolutely no need to worry, he just accepted that this is how it is, and yeah, I'm gonna have a good summer too.

I am so proud of him. Two years ago I couldn't have fathomed him accepting something like this happily, let alone without having a major meltdown. Today, he took the news with a smile on his face, happy for time alone with Papa, happy Jari gets to see his grandparents, happy he gets to go to summer camp with Sacha. I couldn't help but be a bit shell-shocked, but as we shared a piece of cake and cappuccino, I really felt like my son is beginning to grow up. He's coming to terms with how life works, and learning to accept disappointments as well as excitement. I'm not saying everything is perfect, we still have a long ways to go, but these first little glimpses into my son as a man ahve me feeling proud. So proud of all he has achieved, proud of what a giving person he is becoming. Through it all, I must have done something right. Because the young man I spent today with is exactly the young man I have always dreamed he would turn out to be.


In addition, parent teacher conferences were this week and his report card was terrifically filled with good grades. And even better, his behavior for the time being seems to be at a lull, and he hasn't had any threatening outbursts as of late. His one meltdown resulted in him leaving the school building and taking a walk to the animal park on campus. These are the exact tools we have been trying to teach him for years. When the going gets tough, remove yourself from the situation and when you are able, come back and try again. And his finally achieving this, leaving without reacting in violence, is something that makes my heart swell a thousand times. Again, I don't have high expectations, but the fact he was able to do this is just so huge...and I know he can do it again. It's just these little things that show me of his growth, of the possibilities he has contained within, despite his autism.


My little boy is growing up. It makes my heart thump with happiness.

Life Isn't Fair

So, I've been a bit nervous the past few weeks. I have been awaiting my appointment with the neurologist after more tests in the hopes he would find the problem causing pain in my hand and arm and say: Yep, we can fix this!

Unfortunately, life is not quite as fair as we would all like it to be. Today I had my appointment. Today I wasn't told my problem could be healed. Today I feel a great disappointment in life.

Because of my situation and the intensity of my damages occurring during my accident, I have already been given all there is to give in making my arm more functional. The doctors in Czech Republic did everything right. And the fact I have as much use of my hand as I do is somewhat of a miracle. I look at these things realistically. Of course I am grateful for what I have, of course I am happy there were no mistakes made which left me handicapped. But, the fact remains that I am handicapped despite all the good that was achieved. And it stinks.

Instead of reoperating and likely creating additional problems, we're looking at pain management. Pain management to last a lifetime, which involves drugs that play with your body. The drug of choice is one developed originally for epiliepsy, but has been found to also help people manage nerve pain. It also boasts side effects of dizziness, concentration difficulties, sleepiness, weight gain, and stomach discomfort. The dizziness, concentration difficulties, and sleepiness are evident in the majority of users. So, it's a decision based on dealing with side effects versus pain.

How does one go from being a mom and wife able to do anything and having just a so-called normal life to being someone handicapped, living with pain, and unable to even catch a ball, cut toenails or tie shoes? How does life so flippantly change for the worse? In the blink of an eye, while on vacation, I have become another person. I have been granted the gift of life, but in exchange I have to compensate with a useless hand. It doesn't seem fair.

But what is fair? Is autism fair? Is living thousands of miles from family fair? Is being obese fair? No, life isn't fair. It's about taking what you've been dealt and doing the best you can and living as a good person through it all. It's about being grateful for having a chance to live your life, and making the most with the days you've been given. It's trying to remain patient when problems arise, and being proud when you get through without raising your voice. It's about wrapping those you love in tight hugs and showing them you love them, giving them respect regardless of whether you believe in their choices. And it's about hearing that though you may never have use of your hand again, you will still work hard to make the most use of it possible, and accept that though it may not be able to hold a glass or clasp a bra, it's still attached to your body and still moves. It's about dealing with the pain life throws our way.

So, though I haven't been given the hope I longed to hear, I have to look at this from a positive side. I can't dwell on the negative and let it overtake my life. I am what I am and I must move forward and be a success with what I have been given in life. I must go on, continue being a mom and a wife and be the best I can at those things which mean the most to me. Life isn't fair. But when a foul ball gets hit your way, you've still got to step up to the plate and do your best to catch it, hearing the cheers behind you that give you the courage to do what you gotta do.