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.

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