Monday, October 3, 2011

Why Do I Bother Leaving the House?

Going pretty much anywhere with Aaron is almost always a total nightmare. I know going out with kids is never the easiest feat, but there is just something inherently more challenging about going somewhere with him. I don't know if it's because he has Down Syndrome, Sensory Processing Disorder, Celiac Disease, a combination of all of those or just because he is difficult, but almost every time we return home, I am exhausted and feel like I would prefer to never leave the house again.
For all of you out there who can't understand how my sweet little boy could possibly be difficult, let me explain. First, I have to pack a diaper bag which includes at least one complete meal and enough snacks to satisfy a very picky child on a gluten free diet regardless of how long we are going to be gone. It is inevitable that he will demand food the moment we get in the car and the entire time we are away from home. If I don't have the food he wants, he will scream and throw things until we return home, where he will promptly forget that he was hungry. This occurs nearly every time we go anywhere. Despite my best efforts to pack between 8 and 10 different types of foods for him to eat, none of them will be what he wants. And I can't rely on ordering food for him since not many places offer gluten free food - and I have never seen a gluten free kid's meal at a restaurant.
Second, he hates riding in the car, plane, or anywhere else where he is strapped down in a five point harness. He is incredibly strong (like freakishly strong) and is able to twist and wiggle his body into unimaginable positions to get out of whatever device you are attempting to use to restrain him. Most of the time I can get him buckled into his car seat IF I sing to him and he happens to want to hear the song that I am singing. If I choose the wrong song, he will yell, shake his head "no" and make it impossible to buckle his seat belt. So I continue singing different songs until I happen upon the one that he likes at that moment and finally get him buckled in. He then proceeds to yell or fuss for the entire car ride.
Finally, once we get to our destination - whether it be the grocery store, restaurant, etc - he typically screams for almost the entire duration of the outing. I bring toys he likes and they usually get thrown across the room. I bring food and attempt to feed him and it usually ends up on the floor or he just yells and refuses it altogether. I try singing to him and talking to him and sometimes that works, but it makes it pretty difficult to shop or eat if I spend the entire time trying to entertain him.
I think most of these behaviors are due to his sensory issues. He doesn't like sitting in the grocery cart, he doesn't like being confined in his car seat and he doesn't like unfamiliar places with unfamiliar sounds, sights and smells. He does like people watching, but that only interests him for so long. He wants to be free to run around, grab everything within reach and explore. The problem with this is that he has no sense of safety awareness and no concept that he needs to stay with me rather than running off wherever he wants to go. And he is fast. Most children at least have some sense that certain situations aren't safe and they want to stay close to their parents when they are out in public. Aaron does not.
Before I had him, if I had seen a child behave this way or heard a parent say they could not get their toddler to do something, I would have thought (and did think on a few occasions) that the parent was doing something wrong. There is no reason a toddler should have more control than the parent. But now I know better.
Believe me, it's not for lack of trying to correct the behavior that Aaron acts this way. Redirecting, time outs, stern voices, I've tried it all. He knows right from wrong in many cases, but he just doesn't care most of the time. I don't mean to make him sound like a monster. I don't think he has control over his behavior in many situations and we are certainly working on that. And I can see glimpses that things are getting better. Maybe we'll be able to enjoy a meal at a restaurant as a family some day. Until then, I think I need more patience - and naps.


  1. I think you have done a great job for the times I have been out with you guys.

    He is the perfect Angel!



  2. I feel your pain....I loved spending time with you even when Aaron was throwing everything everywhere....I can assure you of one thing....I have been in your shoes, I have walked long and hard....and I understand. I hope you write a book someday because you capture the essence of what it is like to live everyday with a child who is challenging....yes..he is adorable and angelic....but a DEVIL too. I get that...I empathize! I KNOW! Hang in there girl....kisses and hugs!