So...

Been awhile. I told myself when I started this blog, I would not force it. I would allow it to evolve and grow. If I had something to write I would, if I didn't I wouldn't. Been thinking about this post for a bit. ;)

I have done some thinking recently on the year (almost) since Caden received the diagnosis; where we were last year as a family and where we are now. I have to say I am rather proud of us. I remember shortly into September last year, I caught the tail end of an Oprah show on autism. Happened to catch the statistic that 80% of couples with autistic children end up splitting because of the strain it puts on the relationship. I started to cry and couldn't stop, sat there on the sofa and sobbed. Shortly after that I remember having a desperate conversation with Ryan about my fears, I didn't want us to become a statistic. What, I desperately wanted to know, was going to stop us from becoming that? We talked about the importance of all the things that we had always considered important in our relationship and how those things were more important now than ever. Honesty, communication, vulnerability, all those things that had allowed our relationship to grow and prosper in the past, were now more important than ever. The greatest gift that we can give our children is a solid relationship that is an example of respect and love. I wanted to make sure we did everything that we could to protect that.

When I look back, I see a determination to live my life in a way that I haven't entirely allowed myself to in the past. I have often gotten stuck in "playing a role." Being who people expect me to be rather than who I am. I instinctively knew that in order to get through this I was going to have to be true to myself. This year has been a journey of discovery for me. A year of self-examination and exploration. That once and for all I had to live my life truly and completely authentically. I owed that to my marriage as well as my family. And I have done just that, lived my life without apology. Without feeling the need to "play a role." This is me, this is what you get. And I have never felt this good in my own skin, never felt this "at home." Found things out about myself I didn't know, loved deeper and harder, without restraint or fear. I find it interesting to look back and think, "Would I have lived the last year the way I did if autism hadn't entered our lives?" Doubt it.

I think it is always possible to find the blessing in something, even when it doesn't feel like a blessing. I think this is where faith comes in. I believe sometimes things are brought into my life to strip me of my pride, to learn to rely less on myself and my abilities and instead turn to what is important. My marriage, my kids, my faith in God. Just when you think you can't do it on your own anymore, you realize you don't have to. Autism, although not what I would have chosen for my family, has been a blessing. It has taught me to experience and live life in a way that I would not have otherwise. Life is about learning and growing and I am thankful for this experience and excited about how it will continue to evolve in our family. I am no longer afraid of the future. Autism is no longer about the unknown, but about the endless possibilities.

Lost in translation

It was once described to us that Caden has a different first language than we do. English and the spoken word is his second language and pictures are his first. When the therapist said this to me it was like a light bulb went off in my head. It made so much sense. Caden has always related to pictures in a special way. At the age of four he has an amazing gift for using colours, Cade doesn't "do" colouring books. All he wants is clean, white pieces of paper. Pure, blank slates to create his masterpieces.

Sometimes it is like Caden is seeing something we can't see, and in many ways I think that is exactly what is happening. He paints his thoughts in his mind. He will often be using his hands in such a way that you think he is acting something out, like a play. Sometimes it will look like he is reaching out to touch something that is not there, something in his minds eye. Oh, how I wish I could see in his minds eye. I bet it would be a beautiful world, to see what he sees. Does he see anger or pain? Does he see happiness or contentment? Does he see love? What does my love for him look like in his mind? I hope and pray that he paints as magnificent a scene as it feels in my heart. 

More and more I am seeing autism as a gift. Seems odd... autism being a gift. Something for him and us as a family to learn about yes, but undeniably a gift. A friend reminded me this week that sometimes language can get in the way, that actions or thoughts can be far more powerful and important at times. That there is a purity to it. (Thanks, Colleen) :) She is right, I think that we often like to define ourselves by what we communicate through our words. What if we defined ourselves through our thoughts? Through what God sees? We can often get tripped up in our language. How often does a hug or a smile do far more for me than words ever could. Caden is teaching me to go back to the basics, back to the pure and simple. To see things from a new perspective, a fresh perspective. How could that not be a gift? 

Decisions

I know a number of people who read this have children somewhere on the Autism Spectrum. You may be able to relate to what I am going to talk about. 

Ever since we knew something was up with Caden I feel as though there has been nothing but decisions, it becomes overwhelming at times. This has only escalated since his official diagnosis last summer. Do we want him to have a genetic work-up? Do we want him to be in this study or that study? Do we want him to be assessed for funding for IBI? Do we want occupational therapy? Do we want private speech therapy? Do we want Ethan to involved in sibling workshops? Which parent groups do we need to be involved in? When do we want Caden to start school? What school? And don't get me started on the paperwork, stacks of paperwork for every agency and level of government who all seem to need something different from each other. And the language of the paperwork may as well be Latin. Or Greek. If it was Greek Ryan could have translated it and we may have had a chance of understanding the paperwork. We are smart people, some of this paperwork made me feel very stupid. Often its wording felt degrading and as though it didn't apply to me or my family, kept referring to my child as "severely disabled". Riiight. Awesome.

I have felt more overwhelmed with the "system" than I ever have with my child's autism.  I do want to mention that all the doctors, nurses, therapist, social workers that we have dealt with have been nothing short of amazing. Compassionate and helpful and have always been wonderful with Caden and ourselves. I know that they are bound by the system as much as we are and that it can be a frustrating place for them as well. My "rant" is not in anyway directed at those people. But damn. Get it together people. And why does it vary so much from province to province? I deal with logistics every day, it is my job to find ways of doing things quickly and efficiently. This system that keeps bouncing us around makes me want to scream and stamp my feet like a three year old. I do not have the answers to everything but there has to be a better way. Life is stressful enough. Why am I forced to answer the same questions over and over? Why can't you share information? I will sign a form releasing that information, to save me from the task of answering the same questions over and over. People may ask why is that such a hardship? It's just a few questions. You have to understand that these are long questionnaires that take two to three hours to complete. Sometimes more. They are draining. Every time I am forced to answer the same question (although possibly phrased slightly differently) I am forced to face that my child is no where close developmentally to his peers. And every time it digs in my heart a little more. Don't get me wrong, I don't want to live my life with my head stuck in the sand. I want to tackle this with my eyes wide open. But every time I settle into a bit of "normal" even if it is just a normal for us, I am reminded by something or someone that we are so far from normal, I can't even see normal. Fuck. Sometimes I like to pretend that we are just like everyone else. Sometimes I want a little fairy dust; is that so wrong? Denial can be good for the soul. Ignorance is bliss. Blah, blah, blah. 

We have had to make some decisions lately concerning our son and this has been weighing on my mind and heart lately. (I just read through what I wrote, not my most "uplifting" post.) But I feel better now. Thanks for letting me rant, thanks for reading it. Maybe one day we will be able to demand that kind of change. I would like to think we could. 

Weary

Ever feel tired down to your bones? Where every part of your body aches and your spirit feels like it needs a big drink of water. That is how I am feeling right now. It has been awhile since I wrote here. The weariness is part of that. Truth is I have so much to write I don't know what to say next. :) I've wound up saying nothing. Silly me.

I titled this blog "All my Hats." I supposed at some point that I would touch on all aspects of my life, that at some point all the "hats" I wear would be mentioned. My life for the most part is neatly compartmentalized, neatly ordered and kept separate. I wear a lot of hats but I don't enjoy wearing more than one at a time. Right now I am wearing more than one at a time, this is where my spirit starts to get tired. Problem is, I am not sure how to deal with this. I think that we all go through this, these times of wondering which way is up or down. It is not unique to my life. I have been there before and found my way through the fog. But here I am again, in that dark room bumping into things looking for the light switch. I fight hard to stay in the present. But sometimes the present can be a scary place. And I find myself looking forward to a future or back to a past. I keep reminding myself that this is only for a time; that things will slow down, that I should just take one thing at a time, one day at a time. Just. Keep. Breathing.

I hope to spend more time here, on this blog. I think that I need to purge these thoughts. I think they weigh me down if I don't. So that is my step, my commitment. For my sanity. 

Independence day

My children are very different people. Sometimes staggeringly so. Ethan fights to stay close, is not in much of a hurry to grow up, he likes being taken care of. Cade fights to be free. Even when he was little Ethan stayed close, right next to me. I remember once when he was three and we were Christmas shopping, we were in the mall and I had too many bags to hold his hand. Without be told to do so he held onto one of the bags. I have never had to wish for Ethan to be more careful, I have had to push him to be brave. Caden on the other hand... well he has made my heart jump into my throat on more than one occasion. He fights for independence like his life depends on it. At times and in certain places this can be very scary. I realize that this is normal and natural but given our history with Ethan, it's not something I have much experience with. And with Caden it's something that is much harder to trust. His judgement is somewhat, ummm.... lacking. 

When he was diagnosed with autism they gave his "danger judgement" a score of 18 months, which means that he has the judgement of an 18 month old when it comes to danger. Danger such as fire or cars. He has run out into busy streets. We have talked about putting him on a leash. This makes for stressful outings at times. I allow Cade to have as much independence as possible in controlled surroundings, but he always fights me for more. I am not sure how to handle this. It is a big question mark. And I find it ironic that what I crave for in one child, I fight against in the other. Independence is a natural part of growing up and is something I have to resist in my one child and push in the other. 

I have found like most things in life, parenting can not be boxed up and tied neatly with a bow. It is far more complex than that, the personalities involved demand it. Sometimes I wish for the life of a sitcom Mom. Problems presented and solved neatly within a short 30 min period. Where are the script writers in my life? If they are there, they are failing badly. Either that or my life is some sort of documentary. The kind with the scary close ups and the all too real reality. (Okay... it isn't that bad). 

I remember when the boys were babies, longing for a time when they would be older and be more independent; longing for a time when they wouldn't be so "needy." Now I find myself longing for a time when things were simple. Simple needs such as feeding and changing or a cuddle were much more cut and dried. I often remind myself that I need to stay in the moment, not wish for a time that has past or hope for a future that I do not know. But stay present with what is true, with what is now. I only wish that I had more answers for myself or others fighting the same things. But what I know is true, is that I will continue to seek and search for those answers no matter my inabilities or weaknesses. I won't settle for less than that. 

I do

This past weekend Ryan and I marked our 12th wedding anniversary. I love to see peoples faces when I tell them I have been married that long. Their eyes get really wide, and then comes the obvious question: "HOW old ARE you? Usually said with emphasis on those words. :) Yes, I was a teenager when we got married. Engaged less than a month after high school graduation and married shortly after I turned 19. No, we did not have a shot gun wedding. :) That is usually the next question. People then often ask me why, why did I chose that path. Why get married so young if I didn't have to. How did I know that, that was the right thing? At 19... no less. Who at that age would want that? I did. In so many ways I have done most of my growing up in the time since I was married, I am just starting to become truly comfortable in my own skin and understand who I am as a person. But what I did know about myself at that age, what I longed for, was the opportunity to wake up to the same person for the rest of my life. To have that kind of consistency and stability. To feel safe and secure with someone and know that they will love me, without reservation for who I am. I knew I needed that. I know some people thought I was crazy, maybe I was. But I knew what I wanted, and to be honest it has turned out better that I could have dreamed. 

It didn't take me long to realize that Ryan was a great match for me. But it is not an obvious match. People who meet us now often ask how we ended up together, as we seem like such polar opposites. Ryan with the Ph.D. education and a vocabulary that I can barely keep up with. The academic and the theologian who loves to teach and discuss scripture and politics. Me, the "rebel" who fights against convention, has no education, loves to rock out at bars and dance, swears like a sailor, smokes cigars, wants to travel the world, constantly seeks out adventures, oh and... plaster my body with tattoos. During the day we lead very different lives, but at the end of the day my life is his and his life is mine. Ryan has allowed me to be myself and love me for it. He has never tried to make me someone I am not. He has believed in me in ways that I have never been able to. He has never doubted me or my abilities. At times I find his confidence in me to be staggering, his respect for me overwhelming. He has pushed me to new heights in so many ways and has given me the strength to do it. Loved me when I didn't deserve it. Caught me when I needed saving. Given me room to grow and space to learn and explore. It hasn't always been easy, we have walked down some dark paths, but in those paths, through the darkness, we have always found one another. Learned to depend on one another more. Realized that we are the most important people in each others lives and we better not ever take that for granted. Through the years, I have learned that marriage is more about commitment than it ever is about love. But through that commitment I have found the deepest love, the strongest love, the sweetest love.  

I am proud of a lot of my successes in life, but none more than my marriage. We have something great and powerful, something truly to be envied. I love that I can honestly say that I am more in love with him than the day we were married, more than last year, more than yesterday. And I trust that our love will continue to grow through all we encounter in life, through the next 12 years and beyond.

In my shoes

Today I am angry, hurt and a whole host of other emotions I am having a hard time finding words for. On Wednesday this last week Ryan and I went to NYC, and we left a trusted and good friend in our place to take care of our kids. We know that given our circumstances this is no easy task but she took to it and was happy to be there for them while we were away. On Friday she was in the process of taking the kids home from school when Caden had an "episode." These are often scary and traumatic all on their own, not to mention unpredictable. But what our friend had to experience was unthinkable. While trying to defuse this situation in a reasonable manner she was subjected to very cruel treatment by perfect strangers. What makes people think that they have a right to comment on a situation and a child they no nothing about? What makes people think that they have a right to judge? Who are you? What is wrong with you? I guess when this happens to me, which it does more than I wish to admit, it is one thing. But for people to do this to my friend who was doing a very kind thing for us, it infuriates me. What happened to the kindness of strangers or just some good ol' compassion. When did we turn in to this monster as a society? 

To the lady who said: "Well, he doesn't look autistic," I didn't know that Autism had a "look." Last I checked Autism had many faces. To me it looks like the face of my child. And I suggest you walk a mile in my shoes before you cast your judgement on me or anyone who is caring for my child. 

My friend described it as the saddest experience she had ever had, as well as an eye opening one. I am so sorry that she had to see society in the way I see it all to often. Most times eye opening experiences are not pleasant, but I would have still rather her not to have to go through that. It wasn't fair. So I ask you, beg you, who are reading this to look at situations you may see differently. You may not see the whole picture, understand the context. But I ask for awareness and compassion. Because to those of us who are on the receiving end of the stares, comments, both bold and under the breath, the reality that we deal with is real. It is not in our heads or conjured up. 

Ethan

Eight years ago yesterday I gave birth to our first born. Eight years. Wasn't that just yesterday? Feels like it. I remember it like it was yesterday. I remember when he was born he let out a short cry and then silence. When I held him for the first time he had these huge eyes, that were filled with wonder of the world that he was experiencing for the first time. Unlike a lot of newborns that fall asleep shortly after birth, Ethan stayed up most of the night. Continuing to soak all the newness in. 

I remember many people commenting on his expressions as a newborn. He often looked like he deep in thought. This has proved true as he has grown up. Sometimes it seems to me like Ethan can get "lost" in his head. That at times he over thinks things. I know where this comes from. Guilty. And for that reason I tend to get frustrated, because I want to tell him "I know better, stop doing that, its not worth the stress." And also because I know how hard that is to do, let alone for an eight year old who is far from that kind of self awareness. Which is why I want him to trust me, I know better, just do as I say. I find this to be the pull and tug of parenting. The knowing better yet also knowing that all those experiences that may be trying times are also what forms people. It is what makes us who we are, defines us. This is where values and principles are formed and forged, the moments where self-awareness occurs. I can't manufacture that, force it or deny it. I am thankful for those experiences in my life both good and bad because they shaped me, and I am who I am because of it. Doesn't make it less hard to watch your child go through them though. 

Ethan has been in his head a lot recently. I know some of this is Caden. And to Ethan right now Caden is a burden to bear. I don't blame him, so much of the burden of expectation is on him. For instance, something that would be natural for brother such as wrestling, is not possible with Caden. Caden just gets too rough and then Ethan is forced with the choice of defending himself and hurting Caden or allowing Caden to continue hurting him. So it is not allowed in our home. I feel his frustration, understand it. I sometimes even feel as though it is mirrored. Simple things are often made hard with a brother like Caden. Caden is hard for me to understand. I can only imagine how hard it is for Ethan. And I know there are times when he just wishes Caden could be "normal" and do "normal" things.

I am a strict parent. I have high expectations. I know that these expectations have been made higher on Ethan because of Caden. This is not fair. I fear that this weighs on him. And sometimes I hate myself for it. I need to do better. Truth is, I am proud of Ethan. He is protective of his brother and celebrates Caden and his accomplishments. When Caden does something new or learns a new word Ethan is so excited for him. Caden's own cheerleader in life. He truly does love Caden. 

I don't want Ethan to get lost in his head. In some ways he is such an old soul already, with responsibilities of maturity beyond his years. I don't want him to grow up too fast, he already is growing so fast in my eyes. I am reminded that he is still a little boy that needs to stay that way, at least for a little longer.

I could just eat you up

Something that is somewhat unique to Caden is that he loves physical touch, loves to get close and cuddle. This is not unheard of in autism but it is on the rare side, especially to the degree that Cade enjoys it. My thankfulness for this, well, I have no words. As a baby, Caden was a near perfect one. He loved to sleep and eat. Can't ask for much more than that. He was so low maintenance. We figured out quick that he loved to be wrapped up tightly (which was so not Ethan's preference). Once he was swaddled, we would just lay him down in his cradle and he would coo himself off to sleep. We thought we had won the lottery with this child. Cade has not changed his preferences much. He still loves to be wrapped up tight, held close. I cannot imagine a Caden without all the hugs, kisses, the jumping in bed with us on weekend mornings to be sandwiched between us under the covers. This is so much apart of who Caden is I cannot imagine a life without it. 

Today Cade climbed into my lap and curled up. He wrapped his one arm around my neck and pulled me in close. He buried his face in my neck and while kissing me, repeated over and over: "Mum, mum, mum, yum, yum, yum." It's good to know I'm yummy. Well Caden, I could just eat you up too. Life is good, when you have so much goodness to eat. :)

The fuzzy picture

I am a concrete person. I like certainty, I like being able to rely on things. Be confident in things. I don't like the vulnerable feeling of uncertainty. It leaves me feeling, well, vulnerable. This is one of my frustrations with autism. There is very little predicability. Caden's future is fuzzy. I think as parents it is natural to have dreams for your children and even if those dreams may not be as specific as a child becoming a doctor or a lawyer, I have a picture in my head. A picture of marriage, children, accomplishments, their own dreams coming true. Caden's picture is fuzzy. No one can tell me the sequence of this disorder, no one is able to say what will or will not happen. It is all dependent on so many variables, few of which I can control; and I have even less control over Caden's response. Autism has its features, but it is a wide spectrum made even wider by the fact that it affects no two people the same way. Everyone who has autism has their own brand of autism, their own unique spot on the span of the spectrum that is individual to them alone. I am still working out Caden's spot. I am sure just as we all evolve in our lives Caden's spot will also evolve. I know that as Caden's parent it is my job to help him and support him in becoming the person God intended him to be. That no matter his future, it is my job to be his support and cheerleader in life. Just the same as I will be to Ethan. And once again I will relinquish control, because no matter how hard I try to convince myself that I am in control of their lives, I am not. That belongs to a higher power than myself. And in that I can feel safe, confident and secure.

Thank you for not staring.

Sometimes I wish I could put a t-shirt on my child every time he leaves the house that reads: "No, I am not a freak, I just have autism. Please stop staring." Most days this is not a problem as long as Caden is happy and keeping his hands and legs to himself I just let him do his "thing". I let it roll off my back. But I have to admit there are days that I turn into my 13 year old self. That bad skin, horrible hair, mess of myself that I was back then and wonder just how many people are staring at me. Wondering what is wrong with me. Accept now they are staring at my child. Wondering what is wrong with him. Sometimes out right asking what is wrong with him. I would be lying to myself if I didn't admit that this bothers me, some days more than others. There are no obvious signs of autism. At first glance Caden looks like a normal child with a smile on his face that is hard not to ignore. More than one person on the bus has been drawn in by that smile to sit next to Caden, only to eagerly search out the next free seat as soon as one becomes available as soon as they realize that Caden is not your average child. Once that happened 3 times on a single bus ride. I tried not to take it personally, he is my child and I love him more than life itself and it gets to me sometimes, what should I expect of a stranger. That is hard for me to accept though, that most people will have only brief interactions with Caden and will only see the autism. Not the child who gives the best hugs in the world or the child who loves to draw and sing. I wish they could all see my child the way I see him. As a life that is important and valuable, who adds so much to our lives and those who know him, not just something to be stared at. 

I've got your back

Like most mothers I will never forget the day that my children were born. There was something special about Caden's birth though. I don't recall looking forward to something like I looked forward to Cade being born. Every contraction excited me. The more painful they became the more excited I became. I knew that every contraction was getting me closer to meeting our son. I had a natural birth and loved every moment of it. Embraced all of it. Ryan's job throughout all of this was to have my back, rub it, put pressure on it, pound on it, whatever I asked him to do to my back he did. When Cade made his appearance, Ryan literally had my back, he was laying down behind me bracing my back with his chest. We got to experience Caden's birth from the same point of view. It was like our bodies were extensions of each other. It was one of the best moments of my life.

Last night I cracked, sometimes it just becomes too much and it spills over no matter how strong I want or hope to be. Ryan had my back. I'll hold you, you cry. I will hold you up. I am so grateful to share my life with someone who no matter how painful the moment or how hard life gets will always have my back. Someone who loves Caden like I do, who understands my point of view as a mother because he choses to see life not only through his own eyes but my eyes as well. I am so thankful that our lives are extensions of each other and that we continue to grow stronger with each other. That our foundation has not become cracked or damaged but stronger through everything that life has brought our way.

Swallowing my pride

This is my lame attempt at "getting stuff out there". I never, ever thought that I would blog. Thought I had nothing to say. I have so much. I just never thought that I would allow myself to open up my life this way. I am such a private and yet public person, it is such an enigma. 

Lately it has become my mission to tell my son's story, this blog is part of that mission. It is my "start". My jumping off point. It may become my refuge,  it may become my resentment. I do not know, all I know is I need to write about his life. 

Caden has Autism. As my friend Bev once said, "wow that's a 25 dollar word". It is still hard to see his name next to that title. Oddly enough Autism is something I have always feared that my children would have. I don't know why, just is something that I never thought I could handle. Somedays I don't know if I can. Somedays I think "Oh... this is what the end of my rope looks like... good to know." Somedays I wonder if God got me mixed up with someone else. Or if He thought "you don't think you can handle that? I'll show you what you are capable of." Most days are normal, whatever that means around here. Our normal is not most normals but that is okay. I am good with that. I can handle that. 

Tomorrow is Autism awareness day. I plan on writing about our family. Allowing people a glimpse of our lives. My hope is that this will help people become aware. Aware of one families struggle, learning, hope, joy, growth and no matter what we are in this together.