12.12.2009
O' Christmas Tree
12.10.2009
Morning
As the birds begin their morning singing once again, he turns off their melody and pulls back the covers, as she slips into her sweats and slippers, and heads downstairs. After a quick bathroom break, she begins her day, the lights in the house shining, the darkness of the day outside still present. She turns on the coffee pot and pulls bread and meat from their respective places. She hears the shower start spraying and tiny footsteps on the stairs. The day is now alive, her eyes still adjusting, yet wishing they didn't have to. As the door to the kitchen opens, she greets her tiny boy, his hair sticking up in all directions. His good morning greeting is hurried as he stumbles to the bathroom, and she begins making lunches and breakfasts, sipping the warmth of her coffee, topped with milk but no sugar.
Her hand, the bad one as it has been known to be called, is not yet working. It is stiff and sore, and cutting bread is a hazard. She tries for an apple instead, and leaves it's four pieces waiting to be cut smaller. She takes another sip of coffee as the tiny boy moves into the living room, where she hears the sound of the tv, Jetix cartoons, blaze to life. She begins making a schedule in her head, of all she must do today, trying to remember if there are any special appointments on her calendar. She fills a glass with yogurt drink, finishes spreading chocolate pasta on a roll, and brings it to her boy. The room is still dark as the shutters have not yet been opened, the only light coming from the glow of the tv. They don't speak, but she ruffles his hair and bends to give him a kiss atop his head. No words need to be spoken. She looks at her agenda as she recognizes that it's library day at school. Don't forget the library books is placed in her already full head.
Another sip of coffe, the cup now nearly empty. It still feels warm in her hand, and she leaves it there a minute, wrapping her fingers tightly around it before finishing up lunches. The man emerges form the bathroom, fresh and clean, a soapy smell lingering on him as he moves, his hair slicked wetly back, his contacts in his hands waiting to open his eyes to the day ahead. He grabs his shoes and sits at the table to put them on, chugs his drink waiting for him. She glances at him, sends him a smile, whether he sees it or not. She's finally beginning to awaken, see the morning come to life. They discuss the plans for the day, and with a kiss goodbye, he grabs his bag, filled with his lunch, and is gone.
She makes another cup of coffee. The day is alive, the day has begun.
12.08.2009
Homesick
When we make our Thanksgiving decorations it is with this stubbornness that proves me to be American. When we pick out our Christmas tree, probably my very favorite day of the entire year, it is with some little niggle in the back of my head as I smell all the pine, feel the needles pricking my fingers, and sap sticking to my palm, that this is what I did back home. And on Christmas morning mingled with the delight of sharing these moments with my children, creating traditions for them, that my own family is thousands of miles away and I am not a part.
It is a subtle ache that begins in October and slowly builds through the holiday season. I feel my smile more forced, not any less real, but with a bit more effort. My eyes still shine through all the fun, but tears prick behind that twinkle. I just feel slightly wound up from stress, and not the 'all I have to get done' kinda stress that comes with the holiday season. More a stress of accepting that when I moved to Europe to make a life for myself, I also chose to not partake in all the special family activities. And it bugs me. Bugs me that I had to make such a choice, bugs me that I did make that choice, bugs me that I wouldn't do it any other way if given the choice again.
I couldn't be more happy with the family I have; my husband and our boys. We have a good thing here, filled with love and support and this year with all the changes we've had in our family, a bit more peace and rest. I am allowed to be a mom, my husband supports us financially and provides a very satisfying lifestyle for us. It is the kind of life dreams are made of. BUT, it doesn't allow me to share in all those most-important family days, and sometimes the homesickness builds until I can't see beyond it. I'm not allowed to have a Halloween, Thanksgiving, or Christmas such as those I grew up with. No matter how wonderful those we have made are.
I'm trying to keep those ill feelings at bay, concentrate on the wonder of our life, our home, our family...here. Trying to come to terms with the fact that this choice I made didn't take from me and my family, but added to what I already had. I'm trying, but I'm starting to feel tickles of longing fill the back of mind. I'm trying, but the rain pouring down just adds to the gloom. I'm trying, but....what I wouldn't give to head to my Wyoming mountains covered in snow and reach out and wrap my arms around my mom and dad...
I'm homesick :-(
12.03.2009
Hair
11.30.2009
Thanksgiving Weekend
Jari also had his Sinterklaas celebration at school, and we didn't go with him this year. I felt guilty about it when he arrived home telling about singing for Sint and showing me his bag of candy. But, I had to get dinner ready, the house ready...a mama can't do it all. Kaeden chose not to attend the Sint celebration and stayed home to help me get things ready. And helpful he was. More so than I could have imagined. He had a terrific weekend.
11.27.2009
Thanksgiving Surpries
So, because we always make certain to make a celebration of Thanksgiving honoring American traditions, but also knowing this year it falls on Sunday, I took celebration into my own hands (with a friend of course). We, the Americans in Holland. We, two expat women looking to find some tradition in a day just like every other.
I went into Holland with my husband after dropping Jari off at daycare. He dropped me off at the train station and I took it into the shopping center where I had one hour to do my own version of Black Friday before catching the train again to meet up with my girlfriend. When I arrived in Helmond, I had this excitement wash over me...it was Thanksgiving, and I was celebrating...with someone special in a non-traditional way.
When I saw her come walking toward me I forgot for a moment that it was Thanksgiving, and we started laughing and chatting, as friends are akin to do. Suddenly we both looked at each other and chanted: Happy Thanksgiving! We both laughed waiting for our bus to take us to her home. We were together, even as we were both mourning the loss of our holiday in our homeland with our family surrounding us. We were both homesick, but after a spell talking and relaxing, that feeling started to subside. I realised that though I wasn't surrounded by my family, I was surrounded by people I care about and who care about me. Here, I have created an extended family for myself, with special friends I treasure. And I was sharing this day with one of these people I remembered a wooden sign I had brought back for her once from the states saying: Friends are the Family You Choose For Yourself. Or something along those lines.
It is so very true. Family is family. Our expectations are that they will always be there in our lives, and often that doesn't turn out to be the case. And it devastates us. But friends whom we choose, those we aren't expected to give our heart, those we decide are worthy of our love, they are the ones who sincerely stand by your side.
We sat eating turkey sandwiches and then watched a movie (Twilight...I FINALLY got to see it...yeah!) and then chatted some more before I headed back to the train station in the rain. But I wasn't hiding tears streaming down my face as the rain mingled with them...I was feeling completely fulfilled with a gladness and thankfulness different thqn I expected to have on Thanksgiving. I had spent the day being reminded what I really have to give thanks for. And as I climbed back in the car when my husband collected me from the train, I knew that my family has grown since my move to Europe. My family includes some very special friends.
11.23.2009
Happy 40th Hon!
11.18.2009
Sinterklaas Magic
Sinterklaas, the good, holy man. He brings out the best in all of us. With his cross decorating his hat and his red cloak with a spiral staff, his long white beard and a ruby red ring, he looks the part. And on his birthday, he surprises us with gifts. The gifts are left by the door in jute sacks all wrapped in colorful paper. His helpers knock on windows and doors, creating noise to let us know of his arrival, and as we sing songs to ask him to come, we eventually hear them overpower us, running to find what he has left for us. The excitement is grand, as we have a month to look forward to this moment.
My heart stopped beating for just a nano-second. I don't want this magic to end. I'm not ready to give up the excitement. Jari believes, and that adds to the wonder of this holiday time for me. And yet, I know the complete magic and wonder will end with the passing of this year of Sinterklaas excitement. Too many children will discover the truth, and comment that Sint isn't real. Too many parents will be ready to surrender. But Jari will always hear these words fro
And then, as we were finishing up our little crafts, Jari asked me if I knew what Sint's cloak is called. "Yes, it's called a tabbaard," I told him. "Uh uh," he answered. "It's called a tabbaard-aan!"
Erwin and I looked at eachother and laughed as we started singing the song...doe je beste tabbaard aan... (Put your best cloak on...but Jari thought it was called a cloakon :-))
11.13.2009
Tera,a look inside
11.10.2009
BigHugeLabs: Do fun stuff with your photos
BigHugeLabs: Do fun stuff with your photos
11.01.2009
Holland
10.30.2009
10.29.2009
Dance Man
10.28.2009
autism woes
Last night we attended parent-teacher conferences. I knew that Kaeden had been to the switch (time out room) numerous times this year. He tells me when I ask him how school is going, that it hasn't been easy. What I wasn't prepared for, was the extremity of the situation. Kaeden is having daily problems in the class. Daily, meaning usually 3+ times per day. He has gotten physically violent, and damaged buildings in the school. His classmates are frightened of him, as well as the teachers who come to collect him during one of his meltdowns.
Upon entering his class (1 1/2 hours later than our planned meeting...yeah, Erwin and I were both already irritable) we were greeted with sighs. "So, we need to discuss Kaeden..." and then it began. Where do we go from here? How can we work preventatively? How can we enforce rules with him having power over the teachers due to their fear? How do we ensure the safety of the other students?
- Positive reinforcement works a charm. "Kaeden, great job, I'm proud of you."
- Laying things out in steps works a charm. "Kaeden, see what the teacher is writing on the board? First you need to read. And then we'll discuss this. And then you will do the worksheet."
- A calm environment works a charm. "Kaeden, see how quiet it is. Everyone is doing their work, so now you can too."
- Keeping him separated works a charm. Kaeden asked himself to have his desk completely blocked off from the rest of the class. his desk is surrounded by walls on three sides which blocks a lot of the activity of other students.
- Close proximity works a charm. During moments when Kaeden is not at his desk, a teacher needs to physically stand next to him and direct him, not allowing other factors to get in the way of his concentration on that single task.
- Structure works a charm. "Kaeden, here is what we need to get done today. See, you'll do this and this and this at these times. See, it's not so much work. Every 30 minutes you get to do something else."
And this is all fine and dandy, but who is the one ensuring Kaeden's needs are met? It is nearly impossible for a teacher with additional students in the class to give Kaeden the time it takes to ensure these factors are in place, allowing him to be successful. There are no one on one aides to provide him what he needs. And though I think it would be helpful during the class to have a one-on-one aide, I'm not sure that it prepares him for the future. In his life, there will be no one-on-one aide helping him buy bread or wash his clothes or go to the post office. There will be no single person he can always rely upon except for himself. He's going to continue to grow, continue to progress to some form of independence, and he has to learn to deal with his autism and learn to have control over it. Or life is going to come to a screeching halt in a 4x4 cell.
That is what scares me. His future is confronting me, even as we work hard on his present. How will my son manage in life? Even if he ends up living in a group home, how is he going to come to terms with right and wrong, even factoring in all the prikkles that an autistic person must learn to dominate? Is my son going to have any chance at a future with some normalcy?
So, yes, I am scared. The meeting last night just reinforced all the reasons I have for being scared. Right now it's just school. What about a job and money problems and cooking and cleaning and washing and an alarm clock and regulating time...when noone else is there to help you do it when it's real life and not just school?
Where is that magic pill?
10.25.2009
Man-Child
10.22.2009
just stuff
- We spent Sunday in the woods. Walking, playing, letting the sun warm us as we trudged through the fallen leaves of autumn. It was such a pleasure, our little walk in the woods. We found a polecat in the woods, hiding in his little hole, but willing to wow us with his adorable face, getting close enough to touch. The boys were in awe. We ran races, played with sticks, collected corn cobs for our Thanksgiving feast. And then, as we left, we turned our car into a farm and found our pumpkins to help us revel in the spirit of Halloween. We came home and immediately set to work carving our pumpkins. It couldn't await a day closer to the holiday itself. Little pleasures to end a wonderful day.
- Jari and I attended an autism traesure hunt for brothers and sisters of kids with autism. It was set up in stations: gym activities with a survival course, music therapy with drums and maracas and guitars and tambourines, storytime with explanations of what autism is, how it feels, and how it affects people around us, and a video created by brothers and sisters explaining how autism has affected them. Jari collected puzzle pieces at each station during our afternoon and at the end of the treasure hunt he had 5 puzzles to bring home, all giving a kid-sized explanation of what autism means. It was a very well constructed exhibition for kids and I think Jari came away with at least an understanding that there are more people out there with autism, more kids who aren't autistic themselves, but still live in an autistic world.
- I continue to go to therapy 2 days a week for my hand. Everyone but me thinks there is improvement. All I know is I don't see myself progressing at the rate I desire. I still ahve no feeling, still can't make it work properly, still can't stand that my hand doesn't look like a hand. However, I keep working it, hoping that eventually I'll have some use again. Will be able to function if only to put my hair in a ponytail, open a bag of cereal without my teeth, fold clothes without pain shooting through my arm. Yesterday as I waited for my appointment with the surgeon, I looked around me at the people in the waiting room, the majority of whom were elderly. And I looked at their limbs, all still intact, and I thought: What will I be like when I am 70? Will I be able to twist my hands together like that lady? Will I be able to hold a magazine like that man? Will I be able to pull open my zipper like she just did? Or will I forever and always be a handicapped version of the former me?
- Our fight has begun with the Belgium government for funding for Kaeden. Our visit with the doctor did not result in a positive outcome and we've appealed the decision. I am tied up in nerves strung tight. Financial issues are starting to feel at the brink of swallowing me whole. And what happens now? What happens when Kaeden is an adult and we haven't been able to secure his future for him now?
- There is a case beginning for damages against the owners of the house where our vacation led to my accident. This also has me strung in knots. I am worried. I have to somehow prove I was not at fault for the accident, that they were negligent. How can I prove it? Why would this have happened if there was no negligence? I am tired of paying all the bills, all the extra bills that we didn't have before this happened. My husband can only make so much. And now, becuase I can't work even if i wanted to, there is no possibility of further money coming into our bank account. I've discovered I really don't like dealing with these kinds of issues.
- Jari has started seeing a therapist to help him get over the shock of my accident. She is such a calming person. Jari seems to really like her. I don't know what she is doing with him, but in the past few days I notice a difference in his attachment to me, a difference in how he regards me. I am feeling like we have a bit of hope to latch onto, my baby needs his mama again. Last night when he actually came and sat next to me on the couch made my heart just sing. I feel a huge relief wash over me as I consider that my son may be working through the effects this accident has had on him. He's going to be okay, we're going to be okay.
- At the soccer game Saturday, I stood up to parents on the other team. They were being harsh, directing comments towards our team players, our coach. I didn't like how far they were taking their aggression. My son was out there on the field. I try to teach him to be a good sport. The other team was working against me. I went to them, told them enough! That these are just kids and they don't have the right to be acting like they were. It got results. I said my piece, walked away, and after a few grumbles I heard no more. I was proud of myself for standing up for something I believe in. For having the guts to prtect my son. It isn't often I feel enough courage to do this in Dutch, and it felt good to finally do what needed to be done...and even get results.
- Further, everything is going quite well in life. My kids seem to be happy, my family content. What more can you ask for in life?
10.04.2009
Message From Church
However, last night, though I resisted going, I still went. I am glad I did. Only 4 choir members showed up to sing, and my voice was needed to help the music carry to the fellow patrons attending the mass. But above my voice, was the presence of the sermon, a wonderful message to us all.
The sermon last night was about worth. How each of us in this world serves a purpose, and the relationships we engage in throughout our life on earth. It spoke of the varying people with whom we have contact, and how each person serves a purpose and fulfills a need during our engagement with them. It spoke of power, and the power we have to make our lives complete in how we deal with the other party in the relationship.
The relationship can be that shared between a man and wife, between a child and parent, between friends, or even between two strangers coming together for some undefined purpose on the street. Each of these relationships gives us power and serves a purpose, not only in our life, but in that of the other party. How we treat these relationships varies depending upon our need and our involvement with the other party. But whatever it's purpose, and though we may not always know the reason, how we engage in these relationships makes us the people that we are, the person that others see.
Each person put on this earth serves a purpose and has worth. It is up to us to understand what their purpose and worth are, and how to make it fit into our own life. If we smile, oftentimes a smile is returned. If we growl, our worth in another's eyes is diminished. Do we have a right to judge that growl? Each person has a story, and we don't always know what the story is. We must try to create harmony in that relationship, whatever feelings it brings with it.
I sincerely needed to remind myself that each of us has worth, that each of us has a purpose. As my son fidgeted beside me, his voice not the quiet voice we *should* use in church, his hands tapping his flyer with the words of the sermon rather than quietly reading along or listening, I looked at my fellow village patrons, the people whom create my community, and I saw many different faces and expressions staring back at me. Each of these people has meaning in my life. I may not know them, I may not know their story, but there is a reason they are there and in the same space with me, a purpose worthy of my attention. What I bring to this is my own doing. But I can accept them, give them the value they deserve, and move forth with that information in hand. My son, also a fellow patron, may be autisitc, may judge the world differently, but he has a purpose, he has worth. As his voice carried above the words of the priest and I began to feel uneasy with his behavior in church, this message came back to give me peace. My son has worth. He has a purpose. Each of those faces listening in the church have the opportunity to learn from my child, to value him, understand his worth. As i sat in the pew, those words gave me peace, hope, and understanding. I am learning to be accepting, to share my story, to find peace with who I am, the power I have been given, and what I choose to do with it. I am learning to find worth in others, to value them no matter how different the paths our lives lead.
Here are the opening words from the sermon I heard last night:
"It isn't good that we as people stay alone. God called us to life to share in a relationship, with Him and with each other. We were given ears for listening, a mouth in which to speak, and a heart that has the power to give and receive love. The harmony from the creation is disturbed. Peace is something we must go out and find...."
A good basis to remember. A good basis to find worth and value in every person with whom we share a relationship, no matter how big or how small. No matter the differences between us.
9.22.2009
Confused Thoughts
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.
9.18.2009
security of me and we
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.
9.10.2009
What's Happening Around Here?
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!!!
9.03.2009
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.
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 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.