our lives look different than most

January 4, 2019

In the world of special needs parenting, the hard moments seem to be adding up the older my son gets. And they actually seem to be getting harder too, and more defining. Last summer there was one of these particularly moments. One that forever changed me. One that truly made me realize not only how autism affects Noah...but us, as a family. 

 

We made plans to go to an indoor jungle gym—the perfect place for kids right? We actually had celebrated Noah's first birthday party there. But he wasn't walking yet, he just started crawling and wasn't really interested in going in the play area. Which at the time wasn't a big deal. It didn't seem too odd that Noah wasn't adventurous, and had to be so close to us. 

 

Two years later, and we found ourselves at the same place for a play date. Only this time, I wholeheartedly believed Noah was going to enjoy himself. I went in with high hopes, too high perhaps—but I've changed that now. I've learned about realistic expectations. And this particular day, was one of my greatest lessons. 

We set up the play date with friends who have a daughter the same age as Noah, and surprisingly enough, she also happens to be on the spectrum as well. They said their daughter loved this place so we figured Noah would too. I actually remember thinking—this place will be perfect for him. He loves to run and he can dance around. I even pictured him climbing through the tunnels and going down the slides. Maybe it wouldn't last too long, but that would've been fine. I thought he would at least try, that would have been an amazing win in our book. What happened was anything but. 

 

From the moment we walked into the building, Noah demanded to place us. This is Noah's favorite thing to do. He wants mom and dad to sit in specific spots on the floor, and then he gets really excited and dances, spins and squeals all around us. Well that's not always appropriate, but we did it a few times because he's our kid and we want to make him happy. But it was never enough. And it was never right. And we weren't allowed to talk. But we had invited these friends to have adult conversations with yet every time we spoke, Noah screamed. He just couldn't get past his idea. His anxiety/obsession/whatever it was, it took ahold of him and it never let go. 

And I remember looking around while Noah was  kicking and crying on the floor, and I actually saw parents sitting. Sitting and relaxing in chairs. They had these huge leather recliners throughout the whole place—this was the first time I had noticed them though. And every single one of them was being sat in. All the parents just drinking their coffee, talking and watching their kids play. 

 

I looked down, and saw my three year old having one of the hardest times he has ever had. And for a moment, I felt it wasn't fair. That this isn't right. He should be able to have fun just like all the other kids whizzing around us. His anxiety shouldn't consume him like this. And you keep trying to redirect. Redirect. Redirect. That's your whole life. But nothing will work. Nothing will shift your kid's focus. Nothing will snap him out of it. And the more you try, the worse you make it. Then your kid reaches their breaking point, and you're aware after it's too late—because they're now hitting their head repeatedly on the ground. For the first time in public too.

 

And when I looked to my friends convinced they had to be dealing with at least a minor meltdown of some sorts--but nothing. Their kid wasn't acting like Noah. She wasn't anxious and crying and repeatedly hitting herself. She was playing. And running, and climbing, and having the time of her life. That was the first time I fully understood how vast the spectrum is. And that Noah's diagnosis of level two, was probably pretty accurate. Not severe, but not the highest functioning either. And in all honesty, that realization broke me a little. 

 

On the way home, tears filling my eyes I said to Adam, "why do we even do these things? I'm so tired of feeling completely depleted every time we have an event with family or friends." And Adam simply replied, "well then, lets not."

That's when we made the painful decision that our lives would be different, and we no longer would be able to attend every single thing we were invited to anymore. And that saying no is not only for Noah, but for ourselves too.

 

So does our family miss out on things? We do. Does it hurt? Yeah, sometimes. Would it hurt more if we always tried and had it end in repeated failure? Probably. We haven't given up nor do we hideaway in our home—not yet at least, kidding! But we pick and choose our battles so to say. And I can say that things are slowly getting better. We are working on public outings in ABA therapy. Starting with running to different stores and school fields trips. 

 

That day over the summer was necessary, no matter how hard and depleting it was for me. The healing that took place after taught me about meeting my son where he is. And I decided I wasn't going to force anything anymore. And you know what? I became a heck of a lot happier. I still have my dark days of course, some darker than others, but the light at the end of the tunnel is always getting brighter. With each of these defining moments throughout this motherhood, I find myself getting wiser, and loving harder. Our lives may look different than most, and I'm okay with that now, I am. I'm working on the forever part, but we'll get there. It's a journey after all and we’re writing our story—and this is just the beginning. 

 

 

 

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