I walked into my home this morning after dropping Will off for his first day of summer camp and I experienced something I hadn't experienced in a while - peace and quiet! There was no loud screaming or crying, no Laurie Berkner band playing in the background, no hearing Ryan say "Will, NO!" as Will chased and harassed the cats around the house. None of that. Just the sweet sound of Matt and Meredith reporting the days top stories.
We haven't experienced this type of quiet in a while - not since leaving Buffalo. Unfortunately, it appears the quiet might be short lived.
Several months ago, I found a private special ed school about 20 minutes from our house that offered a summer camp for kids with special needs. I thought it would be a perfect fit for Will. For three weeks, from 9 a.m. until 3 p.m., Will could play with other kids and enjoy arts and crafts and playtime while we (Ryan and I) got situated at home. I could run errands with ease. Ryan could go to the gym without worry. It was a win win for everyone! Not so fast. Camp good times isn't happening this year.
My phone rang this afternoon a little after 1 p.m. It was the school. Will was in the director's office. Things weren't going well. They couldn't get Will to calm down. Maybe the half day program would be a better fit for Will. Let's try the half day program out this week to see if it will work for hime. Will wouldn't engage with the teacher or other children, etc., etc. The camp director went on and on. She was quite apologetic and was sorry to call. My response was simple - "I'm on my way to pick him up."
As I drove to go pick Will up, I called my mom and just broke down. I explained to her how I want a normal kid. I want a kid who can go to summer camp and enjoy life like every other normal kid. I want a kid who will sit down in a restaurant and behave so that people around us don't feel the need to stare and make comments that our child is out of control or being too loud. I want a kid who can ask for what he wants instead of crying and shrieking at the top of his lungs (the sound of which will give anyone a headache). I want to be able to get on an airplane without the fear that my child will flip out, resulting in us getting kicked off the plane (this has never happened to us personally, but it's a very real fear of mine). I want a kid who understands consequences so that when he's being punished, he realizes what he did wrong. I wish my kid, the one with the big brown eyelashes and a smile that can melt your heart, was normal. But he's not, and coming to terms with that is frightening.
Over the past several months, I have heard several people refer to Will as "autistic" and it always bothers me. I'm not sure why. I'm certain he is on the spectrum though we've yet to get an official diagnosis (I am sure one is coming soon). I guess when I hear that term and it's being used to refer to my child, it conjures up all sorts of emotions and fears about what will become of my child. I wonder if Will will ever lead a normal life. Will he go to college? Will he ever learn to throw a football? Will he ever understand that his dad has a pretty cool job? Will he ever really know how much I love him? The "what ifs" race through my mind constantly and it kills me that I can't "fix" my baby boy.
As a mom of a newborn, I feel like I'm already on auto pilot from my lack of sleep. Add Will to the mix, and I'm utterly exhausted. When Ryan and I finally get Will in bed at night, we look at each other and just sigh. We're tired. We're frustrated. We're doing everything we possibly can for our little guy and it just doesn't seem like it's enough. We feel like we're failing him.
We know that some of Will's behavior is "normal." He's experienced a ton of change over the past couple of months and he's totally trying to figure out a way to cope. But it's been really difficult - from him hitting and kicking to screaming and throwing things. Couple this "normal" behavior with Will's delays, and sometimes it feels like all hell is breaking loose.
I've said many times that our situation is what it is. Will has special needs. We'll continue to do what we have to do to try to help him lead as normal a life as possible. But it's hard. It's tiring. Sometimes it doesn't seem fair. But he's our little guy, and we'll keep on pressing on.
So for those of you who know me, and who know Will, keep this in mind. When you're in a restaurant or on a plane, and there's a mom or a family sitting there trying their hardest to quiet a child, or maybe they are ignoring him because they know there is absolutely nothing they can do to make the situation better but to leave him alone, try to be a little more patient. That could be me sitting there across the room from you with the inconsolable child who is flipping out. Trust me that the mom knows everyone is staring at her wishing she'd get her kid to be quiet. Sometimes, there just isn't much she can do.