Lately our house has been pretty screamy. Ryan loves to watch movies, certain ones... and he has an astouding memory. He has been doing more vocalizing lately! This is fabulous, really. The fact that he's interested in saying words is amazing. He has even begun, when we offer him something and he doesn't want it, to say "No grilled cheese (or go home, or whatever)." We are thrilled about this! But it seems like for every great thing, autism brings another equally gut-wrenching thing.
Maelynn and Richie adore their big brother. Whatever he does is golden. Stimming, fits, even if he just got in trouble for something and the littles heard the whole thing, two seconds later they have to try it too. Everything from jumping on the couch to self-injury. It's all cool if brother does it. So you can imagine how fun it is in our house when Ryan screams along with characters in a show, or even in a book on the ipad. Immediately, the littles follow suit, not to be outdone. My husband has a picture on his phone of a rare night when Ryan fell asleep at the table. Richie laid his head on the table and pretended to be asleep, too. Sometimes, Ryan thinks this is hilarious! The most fun was when, after we blessed our food, Ryan said "aaaaaay-men!" and Richie, being Richie, repeated. They did this several times, each time a little louder. So very cute and sweet! We all laughed and laughed!
Then there are the times when it's more difficult to laugh. The times when he is so beside himself, frustrated, angry, and confused that there is no calming him down. The boys' birthdays are just three days apart. When they get birthday money, we've begun letting them shop for their own stuff somewhat. We guide them to avoid letting them do something like spending all their money on every ball they see (that's Richie's schtick). The problem with this is once Ryan has done something he likes to do, he will ask... no, demand... to do it every day, all the time. The most common ones are "ride the people train", "ride the elevator", "Pack your swimsuit", and "go see Miss Staci". Sometimes he'll ask once, I'll explain, and the explanation is accepted. More often he'll ask for the same things I COULD SWEAR fifty times an hour. Say no? He screams and beats his chest, legs or head. Or the wall, table, whatever.
Let me make this clear and fast, since not all of you know us... we do NOT give in to screaming, crying, or demanding children... or anyone else for that matter. This can mean hours of ask-explain-fit. Ask-explain-fit. Repeat ad nauseum. At times the fits go into full meltdown. Running around, screaming, hitting himself, anything else in sight, crying, gutterally screaming until he's gagging. There are almost always little bruises on his chest, which breaks my heart.
When Ryan asked last week to go to the store, we were fine with that. We were on our way that direction anyway. So every time he asked from the back of the van, yes, buddy... we're going. Hang on. Then we get there, and he was fine in the cart with his brother. We needed paint for his room. By this time, I couldn't think because of the wiggling and fits for "look at toys". Eric and I tried to reason to no avail, telling him that we were picking colors for his room, tried to let him help... nothing. The people at the paint counter were awesome, just talking to us even though you could tell one was pretty speechlessly uncomfortable. We picked a great Thomas color, and after the thrill of watching the paint mixer, it was time to shop for some other things. The fit continued over toys until he was indescribably scream-demanding to look at toys, then vaccuum cleaners, then toys again, then fans. Trying to think and losing the battle, I suggested Eric take Ryan to potty with him... after all, Ryan might have to go too. Five minutes of silence. Sweet.
After they got back, the fits only escalated to the point where, in the much too long and slow checkout line, all I could do was keep him from hitting himself. It was noisy, but not embarrassing.
It was beyond embarrassing. It was painful.
It's hard enough to watch your child beat himself silly and scream till he gags. It's hard enough to wait in line, knowing you have to have the things in your basket. But having people obviously stop to stare? Just to stare? Just to stare and shake their heads in, I don't know, pity? Anger? Pride that their kids never did that? The surety that they could do better?
I know the fit was over the top. I know I could have left the basket. I know, I know. But the thing is, if I just left all the time, I'd go the whole summer without groceries. Or Ryan would never enter a store. Or a restaurant. I've encountered people recently who I'm sure would rather not be bothered by the noise of autism. To tell the truth, I'd rather not be bothered by autism either! I'd love for Ryan to have the ability to effectively communicate everything he needs, process everything around him without the need for sensory input hitting provides, and for him to act just like his brother and sister.
But that isn't Ryan. At least not yet.
It might be him someday, and we will continue to work hard to help him understand the world. If we don't try, if we don't endure the stares and the glares, the loud, cowardly not-to-our-face-yet-loud-enough-to-hear comments (thanks, dude in the children's restaurant this weekend), we would not be helping Ryan at all. We do have to remember who we are when these things happen... called to be slow to anger, slow to speak. We have to recognize the openings to share and educate, but never at the risk of doing more harm than good. We have to realize, also, that while it would be great if everyone realized that it's not their place to judge our parenting, that's not going to happen. We have to remember that by the grace of God, that could be us being insensitive... and it probably has been and we didn't even know it.
I would love to be able to say that I smiled and stayed perfectly calm and hopeful through the store ordeal and the restaurant ordeal, but I'd be lying. I nearly glared a hole in the guy's head on his way out of the restaurant. I bawled the whole way back to town from the store. There are days I feel somewhat trapped in the house. It takes an indescribable amount of energy to muster the resolve required to shove away the fear that something awful will happen or be said.
Yesterday we almost lost this battle. On the way into my inlaws' church, we had another one of these fits, this time over trains. Church=trains to Ryan, and that's something we have to address. But it's hard to address anything when you can't get in the building for the meltdown. We almost went home. We didn't. As I sat there with Ryan fiddling with his "red" (a pocket etch-a-sketch) nestled between Eric and I, my mind wandered to how many parents of ASD kids might be in the same room as I was. I knew of one other couple, maybe two with kids on the spectrum in the church. Out of the hundreds of people before me, maybe four people got it, not counting our family.
I wondered how many there were outside the doors. I wondered how many people just couldn't muster the resolve to endure being so very different. Let's face it. A six year old boy screaming and beating his chest at random is not a terribly welcome addition in any place where a group is gathered together to do anything remotely quiet or organized. The week before, for the first time, I lost such resolve myself. For the first time, I just didn't have what it took. I hope it never happens again, but that's just another promise I can't make.
The fits are hard wherever we are. They leave me thinking, as the tears roll and in between sobs on the way home, about so many things. Wishing I could quickly explain that he can't help it in a way that is meaningful... wishing I could change the world and make it a place where people trust each other, and understand that trust has to be issued to each other more generously than judgement. The funny thing about that scale is the judgment stings more than the sensitivity and trust heal. So there has to be more trust, more sensitivity than stares, ugly comments, or unsolicited advice. Do I think this will happen? I wish it would.
I wish that would happen for not just my family, but for all the families linked to all the other blogs I read, all the mothers and fathers and people with ASD who need so desperately to be loved not in a conventional way, but in a way that is tangible to them. I read of so many broken hearts, so many lives in which survival mode is the norm. For all those families, I pray for peace and comfort.
For the parents who still wait for the first word... for 18 or 20 years.
For the parents who get only three or four hours of sleep.
For the parents who see beaches and pools not as relaxation, but as drowning hazards.
For the children who are covered in self-inflicted bruises.
For the parents who know the pain of not feeling... or not being... welcome.
For all of you who deal with the seizures that Ryan's been spared.
For all of you who know the pain of the guilt of wondering if you're doing enough.
For all of you who are still potty training at 5, 6, 7, 8, 9...
For all of you who choke up when you see something specially made to benefit your child's need or just to make your child smile.
For all of you who know the immediate sick feeling when you haven't seen your child for even a second.
For all of you who know the kick in the gut of having everything you offer, every question you ask answered with a scream, sometimes for days on end.
For all of you who know that those of us who experience the deepest pain cannot be pitied; for we also experience the greatest joy.
For all of us, I pray we will all find peace by casting all our anxieties on Him, because He cares for us. (1Peter 5:7 ESV)
And I have to tell you... if we hadn't gone Sunday, we would have missed the encouragement of one person who knows an ASD kid, and another who didn't, but just got a kick out of watching him, feet nearly in my face and all.
Those friendly, accepting faces, though they didn't solve any of our problems, were gifts of the Lord. To be met with smiles and looks in the eye instead of sideways glares was simply heavenly. To be enjoyed and not tolerated was blissful.
Thanks be to God!!!