Shut Ins

Many special needs children have behavior traits that make going out in public a challenge or even an embarrassment. It's not that parents of special needs children are ashamed of their children. In fact it's quite the opposite. But sometimes after bad experiences, it's just easier to stay out of the public eye and avoid the stares.

Whitney has an obsession with dogs that causes problems when we go out. We love taking walks or going to the park. But we have to decide each time we go out if we have the energy to endure the inevitable tantrum that comes when she spots a dog. Often, the dog owners we encounter are kind enough to let Whit pet their dog for a bit. But eventually we have to go home or the dog's owner does. This is usually when the uncontrollable fit starts. Often Whit will scream, throw herself down, hit herself and refuse to move. And once she launches into a tantrum it's very difficult to get her calmed down again. Very often I'll just pick her up and cart her home.

The tantrum is difficult but sometimes the stares of passers-by is even more challenging. And the experiences even get worse sometimes. Various 1p36 Deletion children, including Whitney, have episodes of poop smearing. This isn't something I've ever brought up before because it's extremely uncomfortable to talk about. I'm not sure what causes this behavior but I can say how difficult it is to deal with. And it's bad enough when it happens at home. But it can happen at school, church and other public places. In fact it happened at church yesterday. And before the shocked teacher's of Whitney's little class could locate Melanie, Whit had it all over her hands, dress and even in her mouth. If you're feeling queasy after reading that last bit, it's okay. Talking about this makes my stomach churn too. Melanie was able to get Whit cleaned up and people at church are patient, but dealing with the embarrassment is probably the most difficult part.

So what's a special needs parent to do? The easiest thing would be to give up and stay home. At least there we could hide some of the troubling behavior. But Melanie and I feel strongly that nobody in our family becomes a shut in. So we will continue to get out as a family and Whitney will continue to go to school, church, birthday parties and other things that typical children get to experience. We will persevere, but we're grateful for the patience of those around us. Our family is certainly unique, but we're determined not to get shut in, no matter the cost. We'll see you out walking in the neighborhood, at the park or at church. But don't worry, we'll bring plenty of hand sanitizer and baby wipes with us!