Confused Thoughts

I haven't written much about Kaeden in his new home. I haven't been able to come to terms with how i feel about it yet. i have so many mixed emotions running through me with the advent of his new living arrangement that i can't seem to come to a peaceful place in my mind. there is so much to consider and so much pain, so much freedom, so much peace, so much hope. people keep asking me how he's doing in his new home. but, what they don't ask is how i am doing with my decision to place him there. and i am glad they haven't asked, because the answer is one which would take me a million years to formulate. so, i'm going to answer this in two parts to the best of my ability.

Part One: How is Kaeden doing in his new home?

Kaeden seems very happy with his new surroundings. The times I have called to check on how he's doing with the care givers, i have had nothing but positive reinforcement thrown in my face. a very good thing. they are happy with how he has adjusted to the rules, his choices to be involved with the other kids and the group activities. When i ask him, he answers with happiness. he seems to me to be very proud of this new arrangement, almost as if this was his lot in life and he finally has the opportunity to fit into his special place. he tells me (this is big) of activities they have done, what he eats, where they have gone. when i ask if he likes his new room, he proudly tells me that it is great, clean, and really 'cool'. he talks about the different kids who are his friends (kaeden tends to befriend everyone, which is sometimes good, but not always, and so i don't know what this exactly means...other than he has other kids with whom to play which is very positive). so, all in all, though school itself is still a big challenge and not exactly a cake walk, he seems completely at ease and happy in his new living arrangement.

Part Two: How is Mama Doing with the new living arrangement?

I am in a state of complete confusion. One minute i feel totally relieved that i made this decision, and in the next i can't help but let tears slide down my cheeks as a huge dose of guilt tugs at my heartstrings. people will say: Oh, you shouldn't feel guilty, you should be happy it is working out.

But noone can tell me how to feel.

guilt is part of being a mother, and in my case, guilt has been a factor of mothering my son for every minute of his life. this is just another phase of those guilty feelings, and one more phase i will forever carry with me. it hits me in the strangest of moments:: how could you just let your son go live someplace else? he should be here with you. think about the abandonment he must feel. you didn't even get a chance to kiss him goodnight. i wonder if he brushed his teeth today? did anyone give him a hug when he got angry today? did he get angry today? nobody can give him love like you can. we're supposed to be a family.

and the guilt that hits me most often of all, and hardest, is the guilt i feel when i realize i am more at peace and more relaxed and less stressed than i have been in years.

there are no more arguments in the mornings, no more hiding things from papa to try to prevent another round of fights between the two of them. there are no more struggles between brothers that lead to physical violence and fear of someone really getting hurt. there are no more battles to worry about every day i open my eyes to face the morning sunshine, worry rather than the excitement of a new day on my face, hovering behind my eyelids. kaeden's living away from home has managed to lift all these issues. and in its place i feel guilt because i wasn't able to handle it all, because i wasn't able to make the changes needed to survive as a family living under one roof.

and yet, in that same moment, i feel peace wash over me. my son is happy, playing among friends, being cared for in a place where he isn't having so many struggles every day of his life. this is an opportunity for him to grow, to become more independent, for him to be discovered in a goverment system that will assure him a future (maybe not the future i dreamed of, but a future of his own without mama having to hover and smother him for the rest of his life), whatever that may mean. my son feels pride and i see that etched on his face every time i see him.

and our home, our haven? it is without anger, without the nervous energy fluttering forever around. it is a place my lil guy can wake up in the morning and walk down the stairs without worrying about being teased, without wondering if kaeden's meds have kicked in and he can enter the bathroom without his first words being "mmmmaaaaammaaaaa, kaeden......." the glint in kaeden's eyes showing off his plan to terrorize. jari can now walk down the steps, where i greet him when i hear his little pitter patter across the floor, with a smile and good morning, where he returns with a : good morning mama. which, had become non-existant as i struggled to bark out tasks and get it all done before the dread of the bus pulling up at our door managed to bring some sense of calm after the storm.

erwin has changed. in just 3 weeks, i see my husband returning to the easy-going man i first learned to love all those years ago. he comes home to a cleaner home, we eat dinner together without reminders to eat nice, or a mess covering the entire table. we relax with a game or a movie or a story in the evening before settling jari in for the night. we don't hear kaeden's feet trampling across the floor into the wee hours of the night, erwin getting more irritated as he hears furniture being shuffled across the floor at midnight after the tenth time of tucking kaeden in (or berating him) and telling him this is the last time. there are no more stolen treats littering the folds of the couch, or under the tv cvupboard. the smell of urine from wet diapers and bedding doesn't saturate the air. the laundry loads are halved.

so, all this peace in our home, it feels like freedom. but with that freedom comes regret. regret that our son can't be here to share this family home dream i have always envisioned. that we just couldn't cut it as parents of an autistic child.

there is yet another aspect to this. we did manage it. we made a decision for our son and our family which seem to be the ideal decision based with what path our lives led. none of us found relaxation and peace within the confines of our family, and now all of us seem to have discovered it. we tried our best (and sometimes our not so best) to make it work, but we couldn't. too many factors were involved to make a peaceful home. but the decision to let kaeden go has been met with the rewards of more harmony. for everyone.

the weekends are a time i treasure. though they bring about more stress and the normalcy of life as we have known it (arguments, fights, brotherly love, messes, but also kaeden's help, his hugs, his smiling eyes, his excited stories) when we are back together, we have had a chance to recharge, a chance to taste freedom, a cahnce to just be. all of us. and with that comes the knowledge that we can manage these days together, and we'll all have a little break again soon if it gets to be too much. the weeks are definitely easier. making the weekend easier as well.

i hope that over time my husband can learn to be more relaxed during the weekend as well. that there will come a time when he can bond with our son and forgive the mistakes. when he can be a dad and not a guard, when he can take a moment to show kaeden how much he cares, not in words but in actions. because he does care, as he has shown in his attendance at appointments, his vision for kaeden and our family, his living in stress and disorganisation. but towards kaeden himself, it has been and continues to be a struggle. erwin loves deeply and heartily, but his expression of his love is sometimes, and certainly for kaeden, difficult to discover and reel in. he is finding peace again, as a man, as a father, as a husband. i pray for the peace to open up and allow kaeden in.

so, how am i doing with the adjustment? it's a mixed media of emotions. but in general, i feel more myself and less niggling worry than i have in ages. i just have to come to terms that this is all okay. that i didn't let my son go, but opened up a new world for him, and our family in return. that my son is, and always will be my son. that though i may not get to kiss him goodnight every day of the week, my love for him shines through in the pain i have endured in letting him find himself. to just be kaeden.

the pain is opening up a new world of sunshine and rainbows and flowers filled with beautiful butterfly wings sparking in the sun. for all of us.

security of me and we

it's such a little something. that tiny place deep inside which gives you a simple promise that all is okay, that though there may be tiny setbacks along the way, the whole is still intact. that this is your life, do with it what you will, but through it all you'll come out on top.

my little promise has been taken away. my security has dissipated to a tiny trickle. my half full feels half empty. i'm not feeling assured that everything will be okay, that the setbacks aren't too big, that life will plow along and find me still standing strong.

and what is sad is that it isn't about me. as a mother, my whole includes the lives of my sons, as a wife, the life of my husband. there is a tiny piece of me who belongs only to me, but i am defined by my family. i no longer live as a single entity. i have this me of which can no longer be separated from we.

since my accident, there have been many questions filling me up inside. some are positive, some negative, but on the whole i feel grateful to be alive and feel an assurance that though the road is long, i will stand proud and tall in the end. though i may not once again be complete; my hand may never fully clasp a little hand in mine again, or pick up a grape to lift to my lips, or pull a load of fresh smelling clothes from the washer, that i am still standing and i will be okay.

but that same security i felt for my youngest son has now left me with a furrowed brow, my heart crumpled into a newspaper ball. he isn't the same child he was before my accident. he is fearful, he is nervous, he is obsessed. no longer is a paper laying on the table or a finished glass of milk a comfort of home. these are replaced with a need for extreme organisation, nothing standing in his view. curtains must be pulled tightly closed or he is uneasy. if my hand comes even close to resting on his body, he tenses up as his body shakes and a scream leaves his lips, nearly paralyzing. my hugs have stiffened him as he glances fearfully my way, trying to pull away before the effect of my love reaches through to him. where he used to love to play games, have tickle fights, win soccer matches against mommy, his newest fun when mama is in the house is sitting before the tv tuning out the fact that mama even exists. he no longer has a need for my attention, for my love, the security blanket i used to be. the ghosts that strip him of sleep cannot be fought away with my presence. my presence does not bring him comfort.

i try to pull him in. i play his favorite treftiball, and see glimpses of the little boy i knew and loved just 3 months ago. he smiles, he laughs, he runs. and then, in one instant as he catches a glimpse of my arm, or my hand happens to come too close as i try to kick, or for any other number of unknown reasons, he retreats...back to his little chair in front of the tv, the sound of my voice tuned out, the little area surrounding him completely free of clutter. he no longer looks at me, but through me.

on a car ride a few days ago, he asked me to sit in back with him. my heart did a quick flutter as i sat next to him, resting my 'good' hand on his lap. then, as i adjusted my position and my 'bad' hand came into his view, he screamed, tensed, and his demeanor towards me changed. he started hitting, being wild, couln't find the calm.

i am starting to feel really worried. the effect this accident has had on him is the fault of noone. yet it is guilt i feel, and each time i see the scar traveling across my wrist, all i see is the stripping of a bond between a mother and her son. with each painful movement i make during therapy, it is with the determination to gain back some trust from the little boy who once came to me for every little thing. it is with the hope that that promised place is restored, that we'll come through this still standing tall. because i am not just me, but i am we. and right now, the we feels broken. the we feels sad, fearful, uneasy and insecure. the me needs to find extra strength for the we.

What's Happening Around Here?

Life has been busy. I think that's good. It means that every day I have something to do, something to look forward to, something to motivate me. And because I have all this 'stuff' going on in my life, it also means I have less time to miss my son, which for such a major event, such a major change and happening, is good.



Here are the things that have been keeping my life busy.

• Kaeden has to be approved for financial aid through the government for his autism handicap once in the five years. To be approved for funding, we are required to visit a government appointed doctor who evaluates Kaeden, our family situation, and receives reports from all the differing organizations with whom we have contact and work with Kaeden. The paperwork for this is immense. Collecting all the reports from everyone, filling out the paperwork, and evaluating your home situation is also emotionally draining. Our appointment was this week. The doctor is arrogant, knowing he has total control over which category your child is placed, how much funding you will receive, and which services Kaeden is qualified to receive. He asks both parents as well as the child numerous questions as he quickly flips through all the reports you have spent weeks preparing. He doesn't want long-winded answers, preferring short and to the point. If you try to expand on a topic, he stops you short with a wave of his hand. As you speak, he writes notes and reads, giving you the impression he isn't listening. Your task is to make the situation as bad as possible to help your child qualify for services. You tell this doctor all your child's min-points while your child sits between you hearing you discuss all his weaknesses. It is no cup of tea with sugar. I'm glad it's over, but now anxiously await the judgement. Will our funding allow us to pay for a portion of Kaeden's residential facility? Will he be approved for a higher repayment for medical services and medication? Will his visits to the psychologist cost us only an arm, or an arm and leg? Will we receive a portion of his diaper costs back? Which organizations are we allowed to get help from, which tax rebates will we benefit from in exchange for sharing our life with a handicapped child?

It is mind-boggling to think that one doctor who has seen your son for 15 minutes in five years time can determine the outcome of all the above questions. But he can, and he does, and now we wait to hear how many points Kaeden received, how handicapped our son actually is in terms of a government description.

Here is my last blog post from our visit with this same doctor. http://tank95.blogspot.com/2006/09/handicapped.html

This time, I did NOT terrorize my son. This time, I joked with him, talked to him about school, and praised him when he wrote his name and address absolutely perfect. And, when we got back in the car, I still gave my son a treat. This time it wasn't to say "I'm sorry". This time it was just to say "I love you."

Okay, I was planning to tell you everything that's been happening, but my thoughts on this subject ran out of control (as usual). I won't discuss more today other than to say I just called the home where Kaeden is staying and they are very happy with how things are going there. He is doing well, seems to enjoy himself, and partcipates in all activities. He enjoys the companionship of both leaders and the other kids. They are starting a bedwetting program with him in hopes of conquering his nighttime head to toe pee issues which I am thrilled with and hope will work. He just seems to be really engaging, and though they expect problems to arise (as do we as he becomes more comfortable and familiar), until now he's been doing fantastic! Yeah! Talk about putting mama's mind at ease!!!

Home

Home is where the heart is. We've all heard that saying hundreds of times. Home, a place where you feel safe, loved, comfortable and at ease. It's the place you can always return, knowing its walls house a piece of you and your life. Home is home.

But what if, for instance, you move away. Say, maybe to a foreign country. Though home was a house, it now holds a different meaning. It is no longer just those four standing walls, but it becomes something much bigger. Maybe the town in which you lived, or even the country. Such as the sight of an American flag blowing in the breeze gives you a feeling of home. While at the same time, the four walls and roof under which you now live is also home. Your view of home is something slightly different once the security of what you have always known is removed. It isn't less or more, it just is. A different opinion of what home means, stemming from your current situation. Maybe you, as an adult, view home as your childhood home, while you've also created a home with your own family. Home just takes on a new meaning once our lives evolve.
Now, let's try on another situation. You are 14 years old and head to live in a residential facility during the week. On weekends, you return to your house and your family to live. What do you now consider home? Maybe your 14 year old self began life in America, then was moved to Europe without any control over the situation. You return yearly to America for an extended period of time. Does it feel as if you are returning home, though home took on a new meaning at the age of five? And when Friday rolls around and the bus sets you off at the front door of your current house, your mother greeting you at the door, do you feel as if you are home? When Monday morning rolls around and the same bus picks you up to return you to your new living quarters at your school for the week, do you feel as if you are home? Home is where the heart is. But where does the heart lie when such a situation as this arises in your world? Is your heart split into enough pieces to engage each of these homes? Or is your heart left behind in the one place you truly feel most comfortable, safe, at ease, and loved?

I'm questioning "home" today. I need to question it and conclude that home is where the heart is, and the heart remains with your family, those people whom love you most. Your heart doesn't split, but expands, as home takes on yet another new view.

This week Kaeden was taken to his new residential care facility at his current school. He has his own bedroom in a very clean, cozy, comfortable house. He lives with 9 other boys ranging from 9-16 years old. There are two attendants on duty at all times, acting as friends, companions, leaders, guides in this home. He has his list of chores, his new set of rules, while he can also snuggle up with his own comfy stuffed animals, his slippers on his feet wrapped in his own blankie from babyhood. He goes from Monday-Friday and returns home to me on Friday afternoon.
I don't know what home means to Kaeden. I'm not even sure what it means to me, being housed in a different country without my extended family nearby. But home, this place I find myself most often, with my own messes and my own clothes, my own little family and the love and experiences we share, really is home. It comes down to a choice I made. I wanted to be with the man I loved. I chose to make a home here in Europe with him and our children. My 'home', America or Wyoming or my childhood home, all remain close in my heart, and I still consider them home as well. My heart has definitely expanded to accompany all of my homes.

I hope that when Kaeden is getting his stuff packed up on Friday, he'll tell his attendents "Goodbye, see ya Monday, I'm going HOME!" Because no matter where my son houses his body between four brick walls, home is where the heart is. And Kaeden's heart is right here with his mama, always and forever, home. Yet, though it stings, I also hope as I kiss him goodbye at the door of our family home on Monday morning, he will tell me, "See ya Friday mama. I'm headed home." (Notice the exclamation point on Friday and the period on Monday). I want my son to be comfortable, safe, loved and at ease. I want him to feel that no matter where he lives, he can feel at home. But, I also want him to know, that no matter what, home is where the heart is. My heart and his, intertwined in a web of love and commitment, no matter where our bodies find us.

Eight.

This morning we headed to Hasselt for a soccer tournament. It was a long day watching games, but something I always enjoy. It was the last soccer I will share with my seven-year-old. Tomorrow, August 30, he turns eight. Eight already. Where does the time go?

I watched my lil bug tear around the field, doing his darndest to keep a win in sight. Playing as a stand-in for another team is hard work. What is their offence? How do they play defence? Where do I fit into the team? He did a good job, playing with a team a step or two below the level of his own. He scored, he passed, he stopped balls from becoming goals. He managed to run the entire field trying to keep the team in the lead. And in the three games they played, the team won two of the three. Quite an achievement at the Coca-Cola Cup.

Throughout the years Jari has been a part of my life, soccer has been a part of more than half. He thrives being on the field, shooting penalties at home, joining kids during play while on vacation. He never complains about having to go to practice, instead asking when he gets to go again. His favorite clothing is covered with soccer clubs or soccer balls, his shoes always a pair that can easiest kick a ball. His bedroom is a shrine to his collection of medals and trophies housed in decorations from his beloved Ajax. You will never see him leave the house to go to school without a ball at his feet, and his pump (or the 5 we have purchased since his arrival) is one of his best friends. He waits for games to be broadcast on tv, asks for scores when he awakens in the morning, and can name the majority of the big players, their home country, and for which team they play. He can also name all of the flags of those countries. And, lately, he can tell you how much they make playing his favorite game in the world.

With this newest information, Jari frequently tells us what his plans are for all the money he'll be making one day when he hits the big time. His villa and his cars, the house he'll buy mama and papa so we can watch his games. He has big plans, that little boy of mine.

My little bug, at nearly eight, your dreams are big. Tomorrow, when the sun brightens the earth, you will awaken and be part of this great big world as an eight-year-old. Your dreams, tomorrow, will still be bigger than you, but knowing how stubborn you are, how much you love the game, and how much talent you already show, these dreams have every possibility of becoming a reality. Stay with your dreams, my little boy. Make them as big as you dare, and work hard to bring them to life. If your dreams remain in soccer, mama will be there to cheer you on. If they take another turn in life, mama will be there to cheer you on. Your dream is my dream, my sparkly little son. I love being here to share it all with you, watching you grow, mature, evolve as a little tot into the eight year old I know today.

Thank you for giving mama a reason to stand in the crowd and cheer, my voice loud and excited, calling your name from the sidelines as I see you look my way and smile at the big thumbs up I send your way. I will always be by your side, guiding you to be your very best. Today, winning the games at the Coca-Cola Cup was just one little trickle of who I know you will become. Eight years old. Happy Birthday from your very biggest fan!

just things

just got home from my sis-in-laws house where she and her boyfriend hosted a yummy, gezellig bbq. it was a beautiful day, cooling off in the evening. the three of us started our afternoon by heading to a farm where we wandered through the fairy tale land in a giant cornstalk labyrinth. jari was thrilled with the adventure, made even better by the kitten who followed us from step one til the end through the labyrinth. we solved the puzzle with all the letters we found on donald duck, cinderella, mickey mouse, puss in boots, robinhood, etc. the answer was: fairy tales on the farm. think we have a chance of being prize winners? i think maybe we already were as jari sprinted from one path to another singing in delight with each letter he found. the calves and baby bunnies were just icing on the cake.

oh yeah, speaking of cake. my birthday was july 23. we were on vacation, and upon our arrival home i decided not to host a party with the event of my accident. tonight, as the grill was sizzling the last of the meats, out comes a cake lighting up the night with candles as everyone sang happy birthday to me. i was in shock, and it was a true surprise which made me feel special and loved. i got some wonderful gifts, many birthday wishes, and a couple poems which brought tears to my eyes. nothing is better than the words people share expressing their feelings for you. words which tell you how important you are, that you have people surrounding you whom you can always count on, who love you no matter what. these words i will always treasure, knowing that though i am not flesh and blood to erwin's parents, my presence in their family has been a blessing none-the-less. and that feeling is very mutually reciprocated. i treasure my in-laws (sis included) more and more with every day that passes. this little birthday celebration is just one of many ways they show me time and again how much i mean to them. thank you ilse and michel for the terrific evening. thank you omam and opap for loving me.

and that brings me back home again. home, where my little sweetheart who does up my bra for me every morning sleeps soundly in his bed. where my husband quietly sits looking for information for our last family day out during this summer vacation 2009...to legoland in germany in the morning...always giving me new adventures to cherish, as he cuts my toenails, cuts my meat, and folds my clothes, telling me my hand isn't deformed even as i stare at the deformity knowing what i see, reassuring me, loving me, no matter what. and awaiting the arrival of my riley boy in just 4 short days from today, the one whom i miss beyond missing, yet cherish these days apart knowing i have built up enough strength to again go on, while he has given his grandparents the comfort of his hugs, his smile, his mischievous ways.

i am the richest woman in the world.

handicapped

i think i have it slightly figured out. how it feels to be handicapped. it is different than being told: you have autism. but it is a blow and one i'm having much difficulty with emotionally. i was told that my chances of ever getting use of my hand again is extremely minimal. that though i may see some improvement, have use of some parts, i should not expect to have a functional left hand.

it hit hard, right to the core center. a creative someone, how can i be crafty? a mother, how can i create a proper meal for my children? a wife, how can i iron his work shirts? me, a piece of me deformed, a piece of me taken away, yet another disaster to manage in my life with one less limb to use to do it.

it seems unfair. i keep comparing it to autism in my mind, how i felt when i was told kaeden was autistic. and then how he must have felt when he learned it about himself. how do you deal with being told your life is not what you hope it will be? that a piece of you won't work like you should? to come to terms with a different life than the one we envision?

i feel as if i have been delivered enough blows in my life. i can't quite fathom what i have done to deserve it all. i try to stay positive, but these thoughts continue to niggle at the back of my mind. why am i being punished? why is my son?

is autism a punishment? no! but it is a life sentenced to being different, and it often feels like a punishment. it feels like a waiting game that never ends. to me, as his mom. to him, well, since feelings are so difficult, i don't really know how he feels, other than those moments late at night when his body is wrapped tightly in his blankets and his head pokes out and in his calm he asks me: mama, why do i have autism? and when i try to answer honestly, it feels like a punishment to both of us, all of us.

i know that i should be grateful that i am alive. yes, i do know this. that somehow, life was nearly taken from me and for whatever reason i was spared and given the chance to live. but in return, i get to be handicapped. just a little one, just a useless hand, just some pain and new ways of doing what used to seem so simple. but it still feels like a punishment to me.

i think i finally understand my son a bit better. how he must feel being different as i see all the stares as people look at me walking encased in a sling and brace, their curiosity getting the best of them. if this is what it takes to be a better mother to my son, i'll live with it. if it makes me more understanding, so be it.

but dang, it feels like a punishment to my battered soul.

annonymous autism comments

Anonymous said...
You're supposed to be an adult... GROW UP!
April 10, 2009 8:03 AM
Anonymous said...
Where is Adolf Hitler now, that we need him most?
July 23, 2009 12:52 AM
Anonymous said...
All these hideous creatures should be euthanased to spare the families the horror of their existence.
July 23, 2009 12:54 AM

Here are some replies i recently received to one of my posts about autism. at first, i wasn't letting it bother me. some people have no idea what autism entails, how can i judge them for not understanding, i thought. but the more i considered what anonymous said, the more i realized i needed to address this. because, though they may not have experience or understanding about autism, these comments are downright horrific. anonymous feels it necessary to re-enact the hitler era and in place of killing off thousands of innocent jewish people, we'll now kill off all the autistic individuals...and then what, society will be perfect?

hideous creatures? my son is one of the most beautiful people i know...both inside and out. sure, sometimes his issues are overpowering and throw me for a spin, and then i use my blog as a place to allow myself freedom to express my turmoil, my anger, my frustration. it is, after all, my blog. my place to say whatever i want to say. but the hideous creature of who you speak is the same creature who would accept you for who you are, regardless of the fact you wish him to be annhilated, anonymous. he would give you a smile, take your hand and be your friend, when there was noone left who wanted to be your friend. he would be the one left standing to take your side and believe you were a good person regardless. and most likely, he would be correct. because it is obvious in your strong opinions that you know nothing of these hideous creatures you wish hitler was here to take out.

hitler failed, though he did much damage. you are failing and doing damage to noone but yourself with such comments. you are losing out on an opportunity to be gracious, loving, caring, and understanding. you are doing a disservice to, not only these so-called hideous creatures, but also to society. if you could learn to accept people for who they are, regardless, as my son has so simply taught me, the world would be a place without so much anger, so much pessimism. it would be a place we would all be welcome with open arms.

do i need to grow up, be an adult? well, i think i have managed those tasks. being chosen to be the mother of an autistic child has forced me to be grown up much sooner than i would have liked. there are so many facets to autism, and one of those in my child is his aggressive outbursts. in writing about my experiences, i am able to come to new conclusions, see places i have made mistakes, get ideas from more people. i don't need to grow up and be an adult, i need support and release and understanding, just as much as my son does. it is not easy living with autism, as someone with autism, nor as a family member. our lives are much more involved than anyone can imagine. and if because i need a place to come to terms with all of that, on my own blog, makes me less than adult, well, i've been called much worse names in my life. i'll manage.

these comments just again reinforce the need for greater understanding. these people are not monsters. they are brothers and sisters, sons and daughters, friends and classmates, grandchildren and cousins. they are members of your community...members who have as much right as you to cross the street or stand in line for an ice cream cone. and most likely, they will be the ones who are standing there, not judging you in the least, while the person behind you looks at your wrinkly shirt or scuffed shoes or messy hair. think about that. and then, continue on your way pretending to be a mini-hitler, and fail, just as remarkably as he did, death staring you in the face when you can no longer look at your own reflection in the mirror, knowing you couldn't achieve what you had hoped to achieve, that in the end, it is you, not them, who are the failure...as they take another step forth in the wake of your death.

flight change

thursday we were in ready mode. kaeden was heading to the airport for his arrival home on friday. i was so happy i'd have my little boy back with me, though i was a bit leary about how i was going to manage it all with just one arm and a lot of pain and tiredness. still, after not having seen my son for a month, i was more than ready for one of his tight squeezes...especially after realizing how quickly life changes and how very grateful i am to be here to receive another hug.

the phone rang. it was my parents. "tera, what would you say if we just kept kaeden another month?" they nonchalantly asked. it threw me for a grinding loop. it was so unexpected and i was completely baffled. "well, he has a bunch of appointments in the comin weeks," i answered. "and you don't have enough meds for him for another month. and i don't think we can change his ticket. and..." and, i wanted to say, i miss my son. i want him back home. but i didn't get the real reason for my hesitation out before:

"tera, we think it would be easier for you to heal if he stays with us. he's having a good time, we love having him, and he hasn't been any trouble at all. it's so important for you to not do anything if you want to recover. this would just make it easier." my parents chimed in.

and as i thought about everything that could help me right now, i came to the conclusion that they are right. there can be no fights to break up, no extra laundry to oversee, no extra kaeden messes to clean up. but, it was all so quick and unexpected. they were already half-way to the airport. "can i talk to kaeden a minute?" i asked.

"hi mama." i heard my heart twitter a bit. "hey riley, so, what do you think about staying with gramma and grampa for a little longer?"

"I think I am gonna stay here for you mama. so you can get all better. it will just be so much easier if i stay in america," he answered. his adult-like tone and answer was obvious he'd been eavesdropping on adult conversations. but, it made me feel confident that he was happy with this proposition. "And, " he added "I'm having fun here." that sounds more like my kid, i thought!

so, as i talked to erwin my parents called the airline asking about change fees and ticket surcharges. after i spoke to erwin, i called them back. "Well, if you're sure..." I wavered. "I think it would probably help me out more than anything else you could do." and that's when i heard my mom cancel my son's flight from her cell phone. with a sigh, i told them "thank you."

so, my son is off to play with the deer and antelope in the great wyoming wilderness for just a little longer. he's happy, my parents are happy, and i'm getting used to the idea. seriously, it is a big help. that hug will have even more meaning when i get it another month down the road.

in pieces

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

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

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

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

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

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

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

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

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

Class Reunion

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

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

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

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

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

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

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

Smidgens

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

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



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


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


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


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


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


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



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


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

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

SO Proud!

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

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

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

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

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

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

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

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

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

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

Freedom of Boys

My boys,

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

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

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

Love, Mama

Het Hoofdkwartier- An Autism Exposition

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

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

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

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

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

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

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

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

http://www.hoofdkwartier.org/

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

Services? Where Are They?

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

14 vs. 7

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

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

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

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

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

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

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

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

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

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

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

Purse Personality

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

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

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

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

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

Riddles

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

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

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

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

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

How could I possibly say no?

Camping

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

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

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