"It's ok. Daddy's got you. I promise I'll never let anything happen to you, Nemo." -Marlin, "Finding Nemo"
On the way to therapy at Baylor for the first time this semester, I finally talked Ryan out of the Cadets CD, track #6 and put in the soundtrack of "For The Boys". Once of my favorites since high school, it has a song I sang to both my sister and my Ryan when they were babies. Soon as "Dreamland" folated through the speakers, I caught a glimpse of Ryan... big, six year old, kindergarten Ryan, stimming on the passing bridge... and had to fight back tears. There are times when the before time seems like a lifetime ago. You know, the before time. BA. Before Autism. There are times that looking back on that time stings. That innocence, that time before the different showed. The time I spent rocking my dear, sweet boy, singing every song that's managed to lodge itself in my memory. The times I danced around the kitchen to the Sesame Street CD (the one I had before we had kids). Even the time before glaucoma. The days I talked to him, and prayed for him, and dreamed about him and what he would become... those days aren't completely gone, but autism leaves one with little time to dream. Reality tends to take over when you need good, solid routines. Really, it's made us better parents, better people. But it does get rough.
To tell the truth, I've turtled a lot in the last six or so months. Backed out of a lot in a desperate attempt to go back to the basics of our faith and who we are to answer the questions of what in the world we do next. To wipe the slate clean and only add the things back that are best... God's best, not ours. Ryan is definitely not a baby anymore. Anyone who might have passed off his fits as "just being a toddler" can now see that we're not hyper-helicopter parents... there's really something different about him. There's just something about turning five. It's been a gut-wrenching ride for a long time, but it hasn't been as hard as the last six months or so since the very beginning.
In a few isolated instances he even looks like a typical kid, especially when he's perched on the ottoman clutching a video game controller. His profile struck me the other day, watching him play "Cars" with his daddy. He looked like a six year old boy playing video games for just a moment. One delicious, precious moment of complete normalcy. Then his sister got too close. After screaming toward her, he got up and started running the car into a wall, stimming like crazy. He is amazing. He is incredibly smart and sweet. But he is also very different, requiring different approaches to just about everything as the other two kids. And more protection. He doesn't understand or just can't stay on task long enough to hold onto the stroller when we're walking somewhere, and that goes double if cars are coming. Today he stood in the visitor lot when we got to therapy, stimming on a car that was coming at him. He really won't get out of the way. They're all just things to be studied, enjoyed, and played with.
So very much of our time is spent putting into practice the techniques we've learned in therapy, at school, and by good old-fashioned trial and error. Riding out fits, holding the line. Keeping calm. Apologizing, confessing, regrouping, and hugging when we've not kept calm. So much time is spent making sure that we're doing the right thing, going to the right therapies, following the correct advice, communicating the things that are needed to make sure he's successful as he can be that we stop and realize we've missed life. We've been busied out of enjoying our little guy as a six year old. Some of this is necessary, but it used to make us feel a bit robbed at times, and still does though not as much. Take the first day of school. Most people walk their kids straight to the room. Not us. No, routine must be clearly established, boundaries clearly defined. If I'd walked him to his room the first day, he'd have been completely thrown off the second day. He remembers, and he will apply that to the next day as well. Instead of asking "why aren't you walking me in" Ryan's reaction would include some if not all of these: screaming, shaking, crying, hitting himself, hitting the walls, furniture, whatever's close, and just completely dissolving into a mess. The rest of the day or week could be thrown off. It might not... there's always the possibility that it might be fine. And we would live through it, as we do all the time. But it's not pleasant.
Simple things like dropping him off at Sunday school or any other age-appropriate function became a terror when Ryan hit about five. No longer a baby, but not able to hang with the big boys by himself, Ryan still needs someone to keep him on task, and protect him from wandering. By wandering, I mean getting bored, opening the door (which he does easily) and walking along, stimming on this and that. Wandering for so many autistic children means death. No, I'm not being overdramatic. The number one cause of death for these children is drowning, usually as a result of wandering. Then there's the fact that if I tried to put him in a class younger than his peer group, and I have (not proud of that), there are so many problems. He's bigger, he's becoming stronger, louder, and if he chose to kinda wrestle with a kid his brother's age like he does his brother, well... that's just dangerous for the other kid. Then there are the things that trigger overstimming... elevators, spinning things, and doors, while necessary and unavoidable, are just a few that can tank an entire day. Whoever he's with needs to be educated and ready to be super calm no matter what. And in a classroom setting, for now they're going to need help. These are just a few of the highlights of the reasons things like school and church are stressful. Friendly get-togethers, football games, etc. where kids his age run around and play together, mostly unsupervised? Impossible. Why? By the time it's time to attend or even schedule these things if they fit in the schedule, I simply have no patience left. I know, thanks to the internet, that I'm not alone there. It's sad but true. So much of my emotional, mental and physical energy goes into staying calm and level for the kids and especially Ryan that even a sideways glance or a misplaced comment can topple the teetering blocks of my emotional tower.
So what do we do? We all need relationships to a degree. The degrees vary from person to person, but the need is there. Two places we, Lord willing, do not compromise are school and church. These are things we believe are non-negotioable. But all of a sudden, it looks like we're going to have to compromise. It looks too hard to continue. Maybe even impossible.
"I promised I'd never let anything happen to him." -Marlin
"Well, you can't just never let ANYTHING happen to him! That'd be awful dull for little harpo (Nemo)." -Dorie
We simply cannot protect him forever. We have to find ways to orchestrate things that gives him the opportunity to develop as a person. Keeping him always with me is, for the present time, not the best option. We seriously considered homeschool, and would do it in a minute if his needs weren't being met at school. There are so many people who do this and it works for them and for their children. So many people (and I used to be one of them, sorry to say) have strong opinions about this, and are more than happy to slap you with them. Just try sharing with people that you're considering one or the other.
Somewhat akin to Marlin, I need to protect my boy. But I don't believe that doing everything for him and completely sheltering him is the answer, but neither is ignoring his issues and insisting that he be treated exactly like everyone else. Both of these extremes would be severely detrimental. Whether or not I like it, Ryan has issues that we must address. He has needs that we must meet. So that protection has to run alongside training to deal with how to live in the world safely and productively, thus coming a lot closer to making sure he's always going to be as safe and happy as he can be.
For us, this means there are things we just don't do, if for no other reason than the toll on my stress meter. I've learned to listen to my stress meter. When my stress is through the roof, it's harder to be patient. When I have a hard time being patient, everyone has a hard time being patient. It's humbling (and when it all blows up in my face, humiliating) that often I can change the climate of the whole thing if I just change me. Less selfish. More concerned with what Eric and the kids like and want, less with me. And what's fair? "Fair" very seldom exists, and can almost permanently find its place on sin shelf next door to selfish and just down the road from pride. It's also a hop, skip and a jump from anger and bitterness. So we are who we are, we do what we do. We decide what our family is capable of, and to what degree.
The biggest hurdle of this for us has been letting go of our preconcieved notions, which is a slightly less painful way to say we have to kinda ditch some dreams. Take football games. In small town Texas, Friday night is a big deal. I'd say more people show up to the game than to church on Sunday, but I'm afraid I'd be right. Football is almost its own religion here. Football, marching band, cheerleaders, drill team... it's all engrained in our culture. And I used to be a band director. I've told you before that I used to be a band director and how important music is to our family. We wanted to have our kids at every game, in their mini band shirts, playing with the other band directors' kids behind the band stands in the end zone. For a while I tried to keep up with this, and with just Richie and Ryan it wasn't so rough. It was interesting, but doable. Did you notice I said our band sits in the end zone? Yeah. No boundaries. The band often catches field goals. Makes for a fun time for the big kids, but for me? No boundaries is dangerous. Can you imagine a six year old with no fear wandering into the middle of a football game? Just think about the encounter with a moving motor vehicle today, replace it with a seventeen year old boy with a ton of groceries in him. Let that wash over you for a sec. You'd stay home too, no?
So there are things we should steer clear of without assistance. No, it's not what I'd prefer, but it's what we need to do. Trust me. I've come home from games I should not have attempted with screaming, sweaty Ryan and confused, tired Richie. We don't go to band rehearsals either. The thought of Ryan wandering into the band is almost as bad as wandering into the game. Some of the same issue is why I was terrified of kindergarten. I was scared of him getting lost. But going to another self contained class wasn't right for him for sure. So we had to let go so he could have room to grow. We thoughtfully prepared him and prayed for him, and finally it was time to let him go. Maybe it's not so big in the grand scheme of things. But to us, it's a step toward Ryan being able to enjoy the freedoms we all enjoy. It's a big step toward hope. Major encouragement to keep traveling 45 minutes one way to ABA. Major accomplishment.
I don't want his life to be dull. To tell the truth, my greatest fear is that his life will be dull. I don't want him to be stuck with less than life more abundantly. I love having him with me. No, it's not always fun to try to help him learn to love things that are important to us, but love is not always a warm feeling, it's something you do. At times I do these things kicking and screaming, I'll grant you. I've been in a church when one of the ushers came up to a sweet family of parents plus four small ones, telling them that, uh, in case you didn't know we have a nursery and I'd be happy to help you find it. Genuine helpful intentions. But for someone wanting their children to experience worship, it was a big red flag. Far as I know they never returned. We're one of those families who are blessed to have our children beside us, however noisy, wiggly, squirmy, and fidgety they may be. the wiggling and squirming is part of the process. There's even a little disclaimer to those visiting our church, that they may be aware we welcome children to worship. You'll hear noise, just tune it out. These kids are important, and they have a place here. Ah. Lovely.
So far, we have managed to let go of the old and bring in the new. Sometimes the things that we think will surely drive us mad and don't make sense at first winds up making sense... and at times, not only making sense but being the biggest blessing in the world. The things we held dear become the impossible, and we're forced to reinvent, rethink, and restructure. And if we are not mixing strong and courageous with patience and thought (as Nanny would have said, "go off half-cocked"), we can make horrible messes. We are so proud of this week of kindergarten for our boy, and so grateful for the opportunities we have been given to further Ryan's education in a way that meets his needs. We're learning more every day about not worrying about what other people think about what we do and don't do, and more and more hold fast to the promises of God and what we know we should do. We're learning to remember that we are human and fallen, therefore we will be tired and weary. And tired and weary is okay. But we absolutely must remember that others are the same... tired, world-worn, and weary. We have to keep trying, keep overcoming the fear and helping Ryan take very calculated steps to having life more abundant.
We have had so many prayers for our family answered in so many ways just this summer... heck, just last week... that I have to be thankful. We have an amazing life! I watch my beautiful Richie playing in his sweet, brilliant way, Maelynn swinging her little hips from side to side, skirt flipping around, as she tries her best to dance and sing to Elmo's Song. I see my handsome Ryan's mouth form the word "Mommy" and stim as he sees me pull up... and I see the sparkle in his eye when he sees it's me... and I know what I have to do. There is so much, and it's all so complex in so many ways I can't begin to understand or explain. But it all comes down to one piece of advice from Ryan's favorite cartoon fish, Dory...
Just keep swimming.
Just keep swimming.
We have to keep swimming, trusting that when we need to rest, we can bring our weary, scream-roasted nerves to Him and He'll help us start over the next day. I can't promise that it'll be easy, but I can promise that we will get up tomorrow and keep swimming.