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If anyone had told me 6 years ago that I’d still be changing diapers on a nearly 6-year old, I have to admit I would have been scared spitless and wondering what the hades I’d gotten myself into. And yet, here we are with Aidan in kindergarten and still wearing pull-ups because he either can’t or won’t use the toilet.

I remember when he was 3 and 4, people would say to me, “Don’t worry. He won’t go to school in diapers.” Well…again, here we are. Now, I’m just hoping he won’t go to high school in pullups.

The thing with Aidan is that, in terms of the autism, he’s pretty high functioning. He talks, expresses emotion, interacts socially (to some extent), and is generally a sweet little kid. Here’s where the other side, the ODD, comes in though. ODD is short for Oppositional Defiant Disorder, and it roughly boils down to where a child will say no and be oppositional simply for the sake of being oppostional. If you say the sky is blue, this child will say it’s purple with yellow polka-dots until he’s screaming bloody murder and insisting it’s purple with yellow polka-dots. This all occurs without me arguing with him. With some things, like the color of the sky, it’s really no big deal. But, with some things, it IS a big deal – like with potty training.

When I said “can’t or won’t” I was referring to the ODD. Aidan CAN use the potty to urinate, and generally does except when he’s in an ornery mood. Then, he’ll go in his pullup purposefully if I ask him to use the potty. Using the potty is a battle, no matter what I try, because of the autism-ODD combination.

Now let me explain that I have a Ph.D. in counseling psychology. I KNOW what to do, and we have a very behavioral household. There are rewards for trying, and better rewards for doing. For oppositional behavior, there are set consequences – losing privileges and time-outs along with losing whatever activity he was engaging in during the oppositional period. (Losing it for a time period, not permanently depending on what it is – I don’t want to punish my daughter for her brother’s behavior.) The long and short of it is that I know what to do – and it’s *still* frustrating.

ODD is a frustrating disorder to say the least. Sometimes he’ll just say no and/or refuse to do something for reasons I can’t begin to understand. Sometimes, it’s even for things he enjoys and wants to do. I don’t think even HE understands it sometimes. Stubborn is an understatement – this kid sometimes gets in his own way. Adding the autism into the mix complicates things because he has trouble relating to people anyway. I’ve been asked how much is ODD and how much is autism, and I honestly don’t know except to say I’ve seen both. ODD doesn’t account for his fascination with automatic doors, elevators, transformers (the ones on the power poles, not the toys), and lights or his language and physical delays. Autism doesn’t account for the oppositional behavior and the purposeful defiance that I see.

In the end, I think it burns us both out. I see him get so frustrated and upset and I WANT to help him. My love for this child, in spite of the ODD, is unending and I wish I could do more to help make things a little easier for him. And yet, I get burned out and frustrated. When I’ve changed the disgusting, feces-laden pullup for the 8th or 9th time in a day, there are times when I just want to scream. When I have to deal with “no” and “I won’t” and “You can’t tell me what to do” or him ignoring requests repeatedly, I want to run away. I get angry, frustrated and exhausted.

And yet, we muddle on. Although to some extent it’s a battle of wills, it’s also the story of a son who loves his mother and family and a mother who loves her son with all her heart. Will he get out of pullups? I sincerely hope so. I’m not going to say “by high school” or by anything anymore – my sense is that it just puts pressure on both of us. We already try to make potty training less a matter of control and more a matter of pride for him, and I work hard NOT to get into fights with him over it. The pressure of “by high school” or by anything is more on me – and I have to let go and let him do this on Aidan-time. I’m hoping the peer pressure of being in school will help and so far it seems to have had a positive effect

So where do I go from here? I keep loving this special child that tests my patience every day. I enjoy and appreciate the smiles and the happiness that I’m so lucky to have, given his autism. I love the hugs and imagination, and even the lights, elevators, escalators, and “button doors.” I see things I wouldn’t ordinarily pay attention to, like the color and shape of the transformers on the power poles and the shape of the lights and buttons in elevators.

And, I keep trying. And trying. And trying, and trying. I have faith that he can eventually do this, and that I will survive it. And I never, never, ever give up.

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.

Reflections of Reflections…

Other Facets of the Mirror