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.