I’ve been recently reading a wonderful book called, “Broken Open: How Difficult Times Can Help Us Grow” (Elizabeth Lesser; 2005). She is fairly eclectic in her view of spirituality, something I very much appreciate. Reading this book has come in conjunction with the suggestion that I engage in a deeper examination of who I want to be and where I want to go in my life.  I’ve also been thinking of the lessons I’ve learned by having a child with behavioral and developmental issues.

I’m going on 44 years old, and for the past five or six years, I’ve watched my life crumble around me. I worked for (and finally completed) a Ph.D. – an exercise in persistence and faith that, no matter what happened in my life, I could do this. I’ve watched my husband go from an open, emotionally expressive man to a rigid shell of who he used to be, through absorbing and emulating the militaristic, black-white culture of his workplace. I’ve watched my second son struggle with autism and with a behavior disorder. Aidan is a beautiful, sweet, precious little boy with some serious issues. I have to admit, I never thought I’d be changing diapers for a 5 year old. I also never thought I’d notice how fascinating lights, railroad crossings, stop signs, and “red balls” could be. (“Red balls” are the red and orange balls hung on power lines to warn planes.)

I’ve learned so much from this child, and have cracked open in the process. Aidan has tested my limits as no other person ever has – his tantrums have been violent and have left bruises. Many autistic children also have limited ability to express emotions and develop attachments. I am lucky – and so grateful and appreciative – every time I hear Aidan tell me he loves me, or every time he gives me a hug. When he snuggles up to me in bed, I thank whatever God there is for this little boy. I don’t take for granted that children will automatically learn to talk, to love, or to grow in the way we expect them to. Every day is a struggle, and every day is a miracle. One point of Lesser’s book is that blessings are hidden in the struggle, and grace in enduring the journey. Every day is a struggle, and every day is a miracle.

Aidan, age 5

Aidan, age 5

Aidan is relatively high-functioning as far as autism goes, and his issues are complicated by severe and prolonged temper tantrums as well as oppositional defiant disorder. For those of you who haven’t experienced ODD, imagine living with a person that contradicted you every time you made a statement, even when contradicting you is clearly not in his/her best interest. With Aidan, I can say “Wow the sky is a pretty blue today!” and he will say, “NO! Sky NOT blue, Mama! NO!” We are currently struggling with potty training – and his opposition to it has as much to do with the behavior disorder as it does with developmental issues. If I want him to do something, he refuses – it’s that simple.

Now, before anyone hands out advice on how to deal with this, I will let you know that my recently earned degree is in Counseling Psychology – I am trained to deal with this. As a result, our household has become very behavioral – it’s all about behavior and its consequences. Aidan is also receiving help through Early Head Start – another thing for which I’m eternally grateful – and through therapy at our local hospital. So, it’s not like he is not getting help for this. As a parent, I am so much better equipped to deal with “the system” because of my training, than are many parents – and my heart goes out to those who feel overwhelmed by the systems of care and by their children.

That said, Aidan has cracked me open to see life in a completely different way. Not only do I get see things in this world that many people never notice (like the “red balls”), but I also get to experience the joy of seeing the “everyday victories” that most parents are able to take for granted. Watching Aidan learn has reminded me that life doesn’t always come in neat, perfect little packages. Life is messy, love is hard, and the journey is tough.

I don’t know where all these experiences will lead, and I have the nagging feeling that I’m standing on the edge of a leap that will change my life. In the past, I had a lot of trouble accepting and living with ambiguity, and I still struggle with it. However, I’m at a point where I can accept that life is a process and that we don’t always know where that process is going. All I can do – with my son, with my husband, with my life – is remain open to and deal with what life hands me, in a way that is life-affirming. I may not be able to choose what happens to me – but I CAN choose how I react and what I do with it.

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