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.
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.
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!!!
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.