Life outside the bubble

It’s easy when you have a child with autism and he’s the only child you have to live in a bubble. We’re not around a ton of kids except for when I drop Josiah off and pick him up from his school. The kids I see at his school all have autism, so it’s not too emotional for me. Back when Josiah first started going there it was hard to see other kids with autism, but now that’s all I know and I’m used to seeing kids who generally don’t give you much attention and don’t always say a ton.

So it really hits me hard when I’m in a place surrounded by ‘typical’ kids. This happens a lot during the warmer months when we’re at the park, but now that our midwestern winter is bringing us sub-zero temperatures, we don’t spend a whole lot of time outside. Sure we go to the mall or to stores, but I don’t have to be around kids too much there.

But this morning I had an experience I guess I hadn’t prepared for and it was like a punch in the gut. I’m a reporter and I do a fair amount of stories on our local businesses. I was assigned to do a story on a Montessori preschool that had just moved into a new building. I should have known that this would have been a tough experience for me, but I wasn’t sure that we’d be able to film any of the kids, so I was prepared to just interview the school’s director and get a few shots of some empty rooms and be on my way.

Well as my ‘luck’ would have it, all the kids there had already been approved to be on camera. I hadn’t even entered the building yet, when I got my first taste of what was to come. We were walking to go inside when I looked and saw a little guy standing by the window (he may have been a year old at the most). He locked eyes with me, smiled, and waved. I don’t know that Josiah has ever waved to me.

We go in, do the interview, and then we travel from classroom to classroom to get some footage. At every stop there are ‘typical’ kids doing all the things my heart aches for Josiah to do, and these kids do them effortlessly. Without any effort on my part these little tykes would look at me, smile, point at me, talk to me, etc. There was one point where a crowd of about 10 or so kids around Josiah’s age crowded around me as they were getting ready to leave for another room. They circled me like vultures and kept looking up at me and talking to me. Now don’t get me wrong…I’m glad these kids don’t have autism and that they look healthy. But it just seems like a cruel joke that I pray so hard for my own child to be able to have a ‘normal’ life and all I get is teased by the sight of all these other kids. They were cute and all, but as they kept circling me I felt like they were little tormentors bent on playing with my emotions. 

It made it even harder that it happened today because when I had dropped Josiah off this morning it took a few minutes before he’d even say good-bye to me. We’ve been working on this for so long and some days he does it better than others. Today he just kept looking down and his therapist kept saying ‘Say goodbye to Dad!’ He finally whispered ‘bye’ without looking at me. That was good enough for today. I left feeling a little sad, but it wasn’t too different than any other day. Some days I don’t even get the whispered ‘bye’ so I take this as a little victory.

But to go from that to what I experienced with all these kids at the preschool was just too much for my heart to take. I just wanted to sit in a corner and bawl or scream or something. But I figured that wouldn’t be an appropriate action for a grown man in a preschool, so like I’ve learned to do, I just buried the hurt deep inside and faked a smile or two. 

Will it ever get any easier? I’m so proud of my son and I know that none of this is his fault. But it still doesn’t make it any easier to have to work so hard for the most basic things while I feel like everyone else gets what they dreamed of. I guess I just have to cling to the hope that someday our time is coming and we’ll get to experience these things. I’m just scared some days that I’m fooling myself and our time will never come. It’s hard when you know you’re doing all the things you’re supposed to do to get results (aba therapy, biomedical stuff, etc.) and some days you don’t feel like you’re any better off than you were months ago and the rest of the world keeps running circles around you.

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