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!