Friday, 01 April 2011
Okay, I admit that's a bit of a disappointment. But so is the realization that our Ryan has a hard time doing so many things. I do my best to focus on the positive things... he is smart! His intelligence is well above other children his age. He is loving, he is kind, he is a beautiful child, fearfully and wonderfully made. After all, he brought his sister a pacifier and actually put it in her mouth last night! he climbed in my lap as I was rocking his sister and told me I was "a really nice toy". But sometimes I fear that people, especially his little brother and sister are just that in his mind... really nice toys.
Now I know that's not the truth... or, at least, I know better than to speak negatively over my children. But we're at a decision-making point with Ryan, and as I see it, I'm more and more concerned that I'm not doing so well in keeping up with his development. Blogs, articles, books, movies... so many things that ought to encourage me and I ought to devour with the fervor my Richie devours his strawberries, do the opposite. There are so many parents who seem to selflessly, dramatically, completely throw their entire lives into making sure their special needs children have the very best of everything. I see that, and try to do it, and I fail. And it hurts.
Just yesterday, I was on my way home from taking Ryan to therapy, thinking about the experience. I sat outside the room in the building where Ryan has ABA therapy once a week (which I know isn't enough, but it's what worked in our schedule) and listened to his screaming through the wall. Any other mother would pop through that door and demand to know what's going on, but I know that she's working on transition. I'm always amazed to see Ryan bound out of the Baylor Autism Resource Center grinning, running straight to get a peek at the elevator (which was out that day, but he was enthralled anyway). Yesterday his therapist, a sweet grad student in ABA therapy, wanted to talk about what we do at home. "so what do you do when he starts a fit like that?" she asks. "Well, we usually send him to time-out, where he stays until he's calm." Then I get to admit the part that kills me. "He's managed to stay like that for entire days at a time."
That's one of those sentences that comes out of my mouth on automatic. If I really thought about it, like I am now, I would hang my head and cry. And have to immediately hold my boy, rocking him, praying for him as I have so many times. On those days when it doesn't matter what I say, how I say it, or what I offer, he's so troubled in some way that there is no consolation. Those days when Richie goes in to check on his hero and is screamed at or pushed down and comes to me with his little heart broken. We won't even go into the trips to Target, Walmart, etc. where he's screamed the WHOLE time over a tiny piece of cracker that fell through the basket, or a toy he saw that looks like one he has, so in his mind it's his and he needs it... NOW. Or the way he thrashes from side to side with his knees in the basket while he screams and cries. Yeah, he rides in the big part of the basket. If I have to have groceries and he needs to go, that's how I keep track of him. He's a wanderer, meaning (to us) that he has no boundaries. If he were a dog, he wouldn't know where his yard ends and the road begins. And even worse, if he did get away from us, can't tell you who he is or where he lives. He knows, but he can't tell you. CAN'T. Not won't. You'd be amazed who doesn't understand the difference. We've found things like temporary tattoos that you can put your phone number on, but getting him to let us put a band-aid on is like trying to pull teeth without anesthesia. If we do manage to get a band-aid or something similar on Ryan, you can guarantee that it will be gone in a moment. If he can't get rid of it, he will shake and cry and completely turn himself inside out until it's removed.
Honestly, I get to the point when I just have nothing left. You know, that end-of-the-rope, no more mental or emotional energy, if anyone asks me to so much as pass the salt I'm gonna scream or cry point. I do. When that happens, I'd like to say that I automatically turn upward and remember every scripture I've ever learned and all the wonderful blessings that we have, but I don't always. I get tired and want to know WHY. Why Ryan? Is it so selfish to just want him to be able to share his frustration without screaming and hitting himself? Is is so wrong to just want to plan a family trip to someplace without worrying about having to avoid elevators, candles, lines, and the fact that someplace might not have pizza or burgers?
No, it's really not wrong to want those things... and I know so many other parents of ASD kids who want the same thing. Actually, just special needs parents who would like to live like other people seem to live.
But the overarching idea here is WHY ME? What did I do to deserve this? Why HIM? Surely Ryan has done nothing to deserve autism. Then, if we back up just a little more in the big picture, doesn't everyone have something to ask that about at one time or another?
Ah, reality check. I'm not the only one with problems. Ryan's not the only special needs child in the world, and I'm certainly not the only person who ever felt hopeless. Or not up to the task. Or tired. Or like something has to give... NOW.
What does one do in this situation? The general population would tell me I need a spa day, a vacation, sometime away, or a break in some manner. While there's nothing in the world wrong with any of those things (and they sounds pretty danged awesome... especially a weekend in a hotel with my husband...), they CANNOT BE MY HOPE. As absolutely fabulous as my husband is, he cannot be my hope, my peace, my reassurance, or my happiness!
Inevitably, at this point, since I am a Christian, God sends something to remind me. It may be a phone call, an action, or simply a prompting of the Holy Spirit to remind me that, just as John 14:27 (ESV) says, "Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid."
Aah. It's like cool water on a sunburn. So is Romans 8:28. So is the knowledge that Ryan (and Richie, and Maelynn) is "fearfully and wonderfully made" (Psalm 139:14). It all comes flowing back, sometimes... and sometimes it comes through friends, or my husband, or a sign, a song, or in a Facebook update. It happens, and it works.
I cannot explain why there are problems that seemingly have no point or reason. But I can say this, and I can say it from experience. There is a reason. There is a God. He cares for us, and His ways are designed for our best and they are not for us to fully understand. "You ask me how I know He lives? He lives within my heart."
So if you're tired, hopeless, lonely, exhausted, broken... don't believe that stuff about the rope. You're on the bottom. Look up, ask Jesus to throw you a rope. He'll not only throw you one. He'll come down, pick you up, dust you off, and hold you up.
He did that for me just as I was speaking to you. Kinda cool, huh!
Have a blessed day, and remember that His arms are always open, and are ready to receive you and whatever issues you have. Your fault, not your fault, socially acceptable or not.
So look up.