No Pain No Gain

I post too many cat pictures on Facebook. I know I do because my extended family tells me so with regularity – and I appreciate that they do. Admittedly, I get a little perseverative about it, and need some help establishing healthy limits. As a general rule – if I post more kid pics than cat pics, I feel like I’m doing ok.

My cats amuse me. Even on the most stressful of days, I enjoy observing the politics of cat life around here. Monumental things like who gets the top shelf of the cat condo today, or who wins the coveted spot in front of the fireplace (which has only recently been turned off due to a weird MN spring this year). The cats are a constant reminder to me that 80% of our communication is non-verbal – for them, even higher. It’s all in the way you twitch your tail, look down on your fellow cats, or go to the top of the stairs and glare when others want to get by you. Then, 5 minutes later, there is a ball of 3 intertwined in the most uncomfortable looking scenario possible sleeping for hours until the next turf war erupts. They communicate with me and with one another all day long – just usually without chatting.

I’ve had this conversation many times with other autism Moms – because I think we fundamentally get it from living it in a very direct way each and every day: talking is not necessarily communicating. Case in point – my Elliott talks all day long, mostly to me, and quite literally from the moment he wakes to the time he drifts off to sleep listening to his favorite Toad the Wet Sprocket song – he is constantly talking. He talks about a lot of things, but often, we have the very same back and forth each day, which goes something like this: (E) “But why would you take Pilot Knob instead of 35E to Home Depot – that’s not the way I like to go” (K) “Topic Change” (E) “Where are we going for Thanksgiving this year and why did we decide to have 3 kids?” (K) “I’ll talk with you when I’m out of the bathroom.”

Does he really want answers? Not really – it’s just what he does, talk, talk, talk. It soothes him, he repeats himself a lot, he topic changes frequently, and if he does come up with a truly novel idea or question, and I take the time to try an honest back and forth with him, he will mostly topic jump again, leaving me feeling sad that we couldn’t share a meaningful back and forth.

The bold truth is that there are many non-verbal kids with autism who are much better communicators than Elliott. Back and forth and honest exchange is elusive for E. This causes me much sadness as I watch him try his best to maneuver the world in his own way. I feel a deep connection to him, but it takes a lot of work and it’s more of a 75%-25% ratio (I’m putting in 75% of the work vs. his 25% on a good day). Truth – there is just an ease in communicating/being with Henry & Ada that does not yet exist with Elliott, and it hurts to say that out loud. This is probably the most painful thing for me as a parent – to see him struggle with “connecting”.

We’ve seen glimpses here and there – and while they hurt, they are progress. He loves his school, and always wants to go to every event they hold. Once, at a family fun night, we overheard a student make fun of Elliott. He didn’t hear it, but we did. At that time, I don’t think it would have fazed him even if he had. But recently, he’s been having challenges at recess because he’s actually interested in some kids. He’s struggling with his approach, and having a number of awkward encounters (lots of terrific opportunities for social skills topics according to his teacher!) some involving wanting to hug girls and talk about marriage (always the planner), but while he’s light years behind his peers socially, he is finally caring.

As hard as it is to see him struggle and work through these challenges at 12 instead of at 5 or 6 when his peers did, there is an element of hope and progress to celebrate. To experience sadness and pain over a lack of friendships and want to have meaningful back and forth with your peers, you have to care about it. He’s just starting to care, and I see him experiencing loneliness & pain in new ways, and no matter how necessary this developmental step may be, it’s the worst pain imaginable to see your child struggle with something so natural for most. I’d do anything to take the brunt of that pain for him, but this is a journey he must travel on his own, no matter how many supporters are cheering him on from the sidelines.

Yesterday, 5th graders from each elementary school in our district gathered at the high school for a track and field day. E was excited – mostly because he got to bring a Lunchable, but it was something he genuinely looked forward to for days. He wanted me to come and see him, so after Ada finished Kindergarten we headed to the track. It was crazy, fun, loud, and celebratory. Each school had a distinctive color so you could tell them apart. After we found E’s school shirts, we sat down in the bleachers and tried to find him. There were tug of wars going on, and the kids that were not in that event were all hanging out with their buddies in the stands, enjoying one of the first sunny, beautiful spring days we’ve had. Finally – we spotted him. He was sitting in the front row of the bleachers, watching the tug of war, and chatting with his Para-professional, Mr. M.

Don’t get me wrong – Mr. M. is amazing, and we are so grateful that E has such amazing educators in his life. But, as I sat there, watching all the kids laugh and chat with their friends, I couldn’t stop the tears from rolling down my cheeks. Oh how I wish he could have had a friend to hang out with – to share the experience with and to celebrate with. We walked down to say hello, and he told us he ran the 800 meter in good time, but as we walked back to our car, I could not shake that feeling that in many ways, he felt alone amongst all those people.

We all struggle to find our place in the world, and forming connections is a part of that process. As someone who teeters constantly on the introvert/extrovert line, I contemplate that a lot. Sometimes I’m a people person, and I’m often happy to be the inappropriate one in any group, but I also need more alone time than most. I think Elliott is a 12-year-old who is just trying to figure out connections in his own life (which may be before or after finding a wife according to the playground staff) – how important they are, how fragile they are, and how much fun they can be. He’s on the outside looking in right now, but the E man is nothing if not determined. He will forge ahead, sometimes awkwardly but always with intention – and in the meantime, I’ll be here to chat with him about the best way to get to Home Depot & where to find great deals on salmon . . .

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