Ever have one of those days? One of those days where you feel like your limbs are moving through peanut butter? One of those times when the things you do manage to do seem to be amazingly messed up? The worst part is I have little excuse. Okay, I have a little excuse, but it's not anything huge.
On these days the funny thing is, I don't realize how different our lives really are. I get tired and start to beat up on myself a bit for the dishes in the sink, the cans of paint by the door, the border that needs to come down in the kitchen. Then I hear a random scream and realize, "oh yeah..." and it all comes together. Thankfully, I have a husband who is willing to learn this aspect of loving his wife. I won't lie. He does make mistakes. We both do. We are, at times, insensitive to each other, selfish, and just plain grumpy. But that's where grace and mercy come in, and oh do we ever need that.
Yesterday was a fun day, and looking back, it was rather busy. A friend needed an interview with a special needs mom, so I got to do that and really enjoyed it. For one, I got to spend time in my home with someone who gets it. That's always valuable. Equally valuable is long phone conversations with good friends just to catch up... friends who trust that you're doing the best you can with what you have... yeah, that's amazing too.
Anyway, the questions were interesting. The ones that stick out the most are something about how your child's special need has challenged your relationships (family, friends, marriage, etc.). Wow. Talk about shoving Niagara Falls through a drinking straw. As I struggled to answer without giving her writer's cramp (yes, she used this low-tech papery blog thing called a "notebook" and this magical stick called a "pen"), I knew that there was too much. Did my best, though. But not all of it would fit. It's too huge.
What has Autism done to challenge us?
Autism has made us more aware and thankful than we could ever have imagined for every milestone in all our kids. Once you've had a child who didn't reach them, they are celebrated with the fervor of, say, winning the "Piston Cup" or making it to "P Sherman 42 Wallaby Way Sydney". For those non-Pixar watchers, with winning the Stanley Cup or the Super Bowl. We get excited.
Autism has made us hurt more than we wanted to. The pain of realizing your child has challenges that you cannot immediately change... it's not a scrape on the knee, a cold, or a stomach bug that will pass. It's in your face and demanding all the time. It does not take time off because you've been doing so great. It alters your thinking about everything. It forces you to plan EVERYTHING down to the letter. A family trip to the mall? To church? To the park? Every last blasted step must be thought out. We are picture-scheduled and social-storied, this-then-that-ed to the nth degree. It stings you in places you didn't know anything could reach, and even in places you didn't know you had. There are days and times when it brings you to your knees in ways you never thought possible.
Autism magnifies the meanness and kindness of people. We have seen people go out of their way to connect with Ryan, and we see all the time people go out of their way to avoid him and us. The most glaring example is the difference between going out with just the two littles and with Ryan. Go out with just Mae and Richie, and you get "oh, are they twins?" and "oh, what beautiful children!" and "oh, you have your hands full". I usually add "you should see me when I have their six year old brother, too." Go out with Ryan? Few people look us in the eye. Fewer still speak. I've even heard comments like, when I told someone I was pregnant with Maelynn, "oh, I thought surely you'd had your tubes tied!" From afraid to speak to unwanted advice to angry comments at his behavior, there is a marked difference in how we're treated. Funny thing is, I feel guilty when it feels normal. Almost like I'm lying, you know?
Autism searches your marriage for weak spots and exploits them. If you're not good, effective communicators, if you haven't learned to forgive (and that forgiveness means you give up your right to punish the person who hurt you), if you're not playing as a team... all those things are magnified. They were problems before, but they'll really be problems now. Having children period does this, but having special needs children will go a few steps further. Our time together is sacred. Once the kids go to bed, once we have our chores done, we have big kid time. Ice cream and a non-animated show, video games, air hockey on the iPad, or a movie, something that is light and fun at least once a week if we can swing it. Kids are in bed, we know they're safe, and we chill and take time to be Eric and Crystal, those people who only dated a week and a half before they got engaged, and not Daddy and Mommy. But I'd lie if I said we never argue, never get mad and cranky and say things we wish we hadn't. Pressure is too much at times, and we're fallen humans.
Autism drives you to or from your faith. If you are angry at God for the special need your child has, tell Him. He can take it... He's GOD for cryin' out loud. He hears and knows your thoughts anyway, so you might as well spill it. Work through it. For me, there's no way to deal without knowing someone else is in charge. I still do my best, I still advocate for my son, but at the end of a day of screaming meltdowns and utter frustration, it's nice to know you can let go of the rope, because you know He's there to catch you. It's also nice to know there's a purpose and plan for this (Jeremiah 29:11). Obviously (I hope), autism has driven us to seek the Lord more fervently than ever.
Autism makes you let go of things that don't... and really never did... matter. My house is not uber-tidy. The floor of my van is covered in an odd assortment of old french fries, cracker crumbs, and cheerios, there are picture schedule icons everywhere, there are toys all over the place, but I do my best. The sheets are clean, the diapers are clean, the kids are fed. On the days when I can't even say that, oh well. See above. Today I needed to be painting, making a packing list, mopping, or doing any number of things, but I like to think that the time I spent in the floor with the "bears" (bear counters), books, and watching T-O-Y three (Ryan's name for Toy Story 3) are going to be more remembered by the kids. Yes, I do clean house, but neat freak? Oh no. And it's certainly not a showplace... but it is happy and comfortable.
Autism forces you to let go of some dreams you didn't even realize were dreams to make room for your child's safety and well-being. And yours. Situations you used to enjoy are just too frustrating. Small talk is almost unbearable (can't lie... I was never good at that anyway). Things you once took for granted are now in the "yeah right" dream category.
Autism makes you grateful for so many things you never thought about before. It makes you angry about things you never knew existed. It brings words like segregation, integration, inclusion, separation, isolation, and frustration to new levels of understanding. It makes you more sensitive and tougher at the same time. It brings to light so many ways people need to be loved, and the fact that almost none of them are exactly the same. It makes the everyday so flustering, but at the same time, on the rare occasions something goes completely smoothly, it's so much sweeter.
It has taught us that standing in the midst of a time when you have no idea what is going to happen next, where the patience for the rest of the fit will come from, or what in the world you're going to do... when you stand there, tears pouring, heart-sick, worn, weary, meltdown-weathered and exhausted and say with the shred of energy you have left that there is a reason... He is in charge, He has not left us, His mercies are new every morning, and we will rise to greet tomorrow with joy, for it is a day He has made... when you reach through the pain and extend a hand and heart to others in the same situation... when we just get up and do it all again and again... that is worship. We want to live it, not just survive it.
We are there right now. A major time of transition. No idea how it will go. We have a pretty good idea of how to prepare, and that consists of making sure the picture schedule has been in play, he's used to getting up at the hour he needs to go to school, we've worked on sight words, counting, sorting, waiting, sharing, asking for what we want, going to the bathroom without following a timer, everything we can think of, and now we have to stay the course, and trust. There are moments when I think he's gonna blow the top off of all the changes, and there are moments I think we've lost our minds. One minute he's counting, reading out loud, and hugging his brother and the next minute, he's screaming, hitting himself, and shoving his sister off the couch. Just when we think something's gonna go one way it goes flyin' the other.
So how has Autism challenged our family? How has it changed us?
I hate to admit it, but when all's said and done, we're closer to each other and closer to God. We've been forced to sort through the chaff, cut through the fluff, and get to the heart of it. All of it. So as much as I hate that anyone deals with any of the ASD spectrum, and as much as I want to see all the problems of all these families go away, at the end of the day I have to say that in the same way boot camp makes a soldier, the autism battle makes we warrior mamas and daddies and brothers and sisters of autism tougher, leaner, and better. A little more edgy? Yes. More stressed? Certainly. But less likely to assume. More likely to be truly thankful than we were before. In the end are we thankful for autism? NO. We are thankful for Ryan, we are thankful for what we have learned, for each other, and for the God who gives us every good thing.
How has autism challenged us, you ask?
It's challenged us to live.
Thanks be to God!!!