Asperger's Journey - the here and now.

It's funny... I feel like I should be posting some "conclusion" tonight.... but the reality is this is all just beginning. I realize the vulnerability for me in writing is that I'm liable to post something tonight and come back in a year and say "Oh - by the way I got that wrong...". I hate being wrong. I like having stuff figured out. Yet I feel fairly sure that the mystery behind Eli's mind is the blessing .... the dependence on God it demands... the humility it breeds in me personally. So I'll wrap up the "today" part of our personal story... and share some general things we've learned in another post or two.

We're in first grade now. Cindy, the wonderful kindergarten teacher and now dear family friend, has moved up to first grade with Eli, and plans are to move to second grade as well. I've swallowed hard and stared into space trying to somehow come up with adequate words to say what that means to us.

Oh... the genuine regret my heart now holds before God that I doubted for those days between finding out where he would go to school and actually meeting her.

Jason said, after reading the previous post, that he had forgotten how hard the years before kindergarten had become. In fact, reading it brought up again some of the unsettling anger and frustration. We’ve been free from most of that over the last two years.

This borders sounding dramatic, and I don't want it to, but I share it because it is the picture that comes to my mind. Having someone who is invested in your child... who cares about them and tries to really help, feels like a respite from war.

It's not always simple or easy to interact with kids with on the Autism Spectrum. The very word “Autism” refers to “self” … meaning one is more connected and interested in what is in their own mind than in the world around them. You’ll hear people refer to kids on the spectrum as “high functioning” or “low functioning” - In my simplistic understanding… I look at the spectrum through that lens… kids have varying degrees and abilities to get “outside” of themselves to interact with the world around them. And that’s on a good day.
Asperger’s carries with it the unique quality of sometimes being quite verbal…so you can have a child who on one hand can use words you yourself don’t know how to spell, and yet that same child can be completely clueless about the simplest manners or appropriate social interactions. They can blow your mind with an adult- like discussion over a topic of interest and the next minute be throwing a screaming fit like a two year old over just a funny feeling tag in their shirt. That can make interactions a little awkward. 


The simplest keys, at least that I’ve seen so far… are education, and caring.

Cindy, simply because of her daily interaction with Eli, has made the most dramatic difference in Eli. Her education and compassion has helped even us as his parents get to know him better. But others, especially in our church family have too. Becky teaches our Bible hour, - and lets him sit on a chair when the others have to sit on the floor. Johnny and Paula took on teaching two quarters of the kindergarten class… and instantly became Eli’s favorite teachers … because they listened to him. When they taught… he wanted to head straight to class. ( And we usually were at least 30 minutes early.) I know what they endured… countless conversations about this video game or that.:-) I have a lump in my throat as I think of their beautiful, not tired- smiles when I would pick him up. They still stop him and ask him questions…. and he always immediately looks them in the eye… because he knows they are looking right back at him, and not past him. Doug, Ron, Michelle, Carrie, Shawn, Keith A., Keith & Ronda, Linda… all people who have that knack for intentionally breaking past the barrier of talking ‘about’ and instead talking ‘to’ him.
Mark, Jennifer, Shon and Stacey have shared almost every Monday night for the last two or three years with our family. They’ve seen our meltdowns… our exasperated and embarrassing moments… and yet let us come back every week.  They’ve listened to me brag on Eli one moment only to watch him be taken out of the restaurant throwing a fit the next. They have allowed the good and bad of an almost sibling-like relationship to develop among our kids, which blesses me beyond belief. They had to be bold and assertive to make that happen. There was a time when I had basically didn’t want to be around people for very long… the “me” that wanted our family to look “put together” had to sometimes make visits with others short and sweet. I’m growing up a little more, - but it’s still a struggle.

I’m learning it’s not just me, however. I’m no longer surprised when I learn families don’t want to go to church with their kids and certainly don’t want to be a part of small groups. One mom I know… couldn’t remember the last time she’d been “out” with her family. That’s just something they don’t do anymore. ( And her kids are still in elementary school.) It’s too unpredictable. It’s safer to just “order in” pizza. It’s easier to be in your own house.

I can remember one time a friend asked Eli to spend the night with her kids. She knew he had some special needs, but reassured me she wanted him to come. Her kids had spent the night at my house. But him going somewhere else was a new thing. A thing I’d managed to avoid for a while. ( I’d contemplated telling Eli other people didn’t have houses… but he was too smart for that one.)

I felt simultaneously thrilled and sick to my stomach.

I remember the next day seeing him and asking how the night went. She said with only a moment’s hesitation, that it was good, - there were a few things they wanted to talk to us about, but it was good and they wanted to do it again sometime. I heard what she said,….. but felt like running away. I didn’t want to have any ‘conversation’ about it. In my mind… if it had gone bad, we’d just avoid it in the future. Because I didn’t know what else to do – and I didn’t want anybody to ask me or “talk” to me about it. .

That evening… we did get together. I dreaded it all day but sucked it up and got ready, (in my mind), for a rebuke. For a reminder (once again) of my inadequate parenting. For a fresh vision of how I was doing nothing to help Eli succeed even in the most basic things in life – like a sleepover.

It was a heartbreaking conversation… though not in the way I thought it would go. She wanted to know what they could do to help. When they encountered something they knew wasn’t acceptable to us or to them, how did we want them to address it? What did he respond to? What would make sense to him? There was never a question about “if “ they would address it. It might be difficult… but they weren’t checking out on us. It wasn’t accusing, as if to say “Are YOU addressing this?” It was just what she said it was. What can we do to help? The question carried an assumption of relationship. -And an assumption of the longevity of that relationship.

My defensive posture went to an uncomfortable “broken” posture. I stood in her laundry room that night a bit of a broken mess… crying, learning, explaining, and in doing so reservedly inviting one more person into my vulnerable world of not having it all figured out. My suspicious, defensive, tired, protective and private self backed off for a few moments to let someone else who was assertive enough in to love all of us on an intimate level. It’s a workout. For all involved.

But its worth it…… in so many ways.

… to learn all the lies you tell yourself about having life figured out in a nice neat package are just that…lies.
… to find the depth and good in people…. who know more than you and have much to offer you
….to find the depth and good in people…. who don’t know much but genuinely want to learn alongside you…
… to find the depth and good in people…. who don’t know much and don’t seem to care…. Just like I didn’t at
one time….

It’s worth it…
… to let people experience the joy I do from seeing life through a completely unpredictable lens like Eli does…
….to get the awesomeness that the God who “knit this child in my womb” and “numbers the hairs on his head” intends for him to bring richness that steps beyond the richness ‘normal’ brings.
….to find that the unknown isn’t so unknown to the God who walks you there… and that the journey isn’t made easier by knowing what you don’t know … or having what you don’t have, but by trusting that He equips you for all you need to know and have at the very moment you are living right now….