What I Have To Say About That

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A couple of weeks ago I attended a workshop given by Matt’s school. It was a workshop about how to live a balanced life when raising a child with autism. Fair enough, I’m in. I honestly feel like I do quite a bit to balance it all out with what is on my daily plate, but I’m always open for new ideas. What I wasn’t ready for was to walk away feeling shamed. This person who gave this workshop I hold in a high place of respect and admiration. I’ve always thought we had a healthy relationship when it came to advocating for what is best for Matthew. I even thought we were beyond the Administrator/Parent relationship and could call ourselves friends. During the workshop she was making all kinds of comments about “being a happy person”. I get it. I really do. I actually do most of the things she suggested for self care. I also love on my boys, hug them and kiss them and tell them they are loved… daily. My husband and I are a team. We have been happily married for almost 23 years. Not that we are without hardship and trials. There are always rough patches to work on, but at the end of the day the bond we share is strong. I think I know a thing or two about how to make all of this work, all while raising a child with autism. But what I won’t pretend to do is paint a pretty picture that this journey is all rainbows and unicorns because it is not. It never will be. Does that mean there are not happy moments? Of course not! There are many wonderful, beautiful and happy moments in my life while raising Matthew and I think the joy you see in my son is evident of a life that regardless of his autism is lived among a healthy home life. My son may not be able to tell me, but I know HE KNOWS he is loved.

I say these things because during the workshop, this person, made a comment out of no where that she “no longer reads a certain parent’s blog because it is so negative about their child.” I knew immediately she was talking about me. I just knew. I knew because I had just written a blog post for Amy Grace’s “The Chorus.” You can read what I wrote here. This is a photo project that is a collaboration of other artists/parents coming together and writing about a certain subject. This entry was about “the dark.” It was just that, the dark, the hard moments while raising my son Matthew. I do not regret what I wrote, because every single word was written with honesty. If there is one thing I have learned about this journey it is to be honest with my own feelings. With my own experience. Does that mean I live in the dark 24/7? Absolutely not!

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As a creative and dare I say artist, I tend to be a deep feeler. It is how I am wired. I express myself through pictures, what I see and feel. I also put words to those pictures many times. It is my therapy. I also believe that what I have to say will reach out and touch someone who may be going through similar circumstances. As mothers and fathers raising a child with special needs we have to rally for each other, not against. There is no parent out there raising a child with autism that has their shit all together. I don’t care who you are. You just don’t, and if you say you do, you are not being truthful. I’m not saying that you aren’t happy, and that you haven’t accepted what life has dealt you, I’m just saying that those hard moments, those moments of sadness will reappear when you least expect them to. Just when you think you have the cat in the bag and are past certain stages of this journey like depression and anger, it comes back around and bites you in the butt. These feelings may not last as long as they used to because now you have the tools to understand how to work through them, but they will reappear. I have fully accepted my child’s autism, but it doesn’t mean anger, depression, frustration and a whole lot of other emotions won’t bloom their little heads up in my life ever again. Does that make me unhappy? I can tell you from experience that no it does not. It makes me real. This journey is my journey. What I share is my experience. It is hard and yet, it’s beautiful.

You Matthew are beautiful.

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