"I'm tired."
I KNOW! I told you I about fell over! After sitting there for a while, mouth agape, I promised him that he could go to bed as soon as his bath was over.
What's the big deal? Everyone says that. Everyone complains. People have finally quit telling me that I'll be sick of him talking when he really gets going. No, I'm not sick of him talking yet. I quite enjoy hearing him speak. It's the screaming that hurts. I quite enjoy all the echolalic gobbledygook that makes no sense, frankly! He says things like firetruck siren, number 22, go to the [insert letter or number] elevator, stuff like that. Random, usually. And he's begun this while we drive down the road (and sometimes when we're in the house)... every time he sees a "do not enter" sign, he looks at me and says "Do not enter, Mommy!" To which I reply, "Thanks, baby. I won't." But to tell me he's cold/tired/hungry/thirsty/sleepy/angry... nope. Never.
So I nearly cried when he told me he was tired.
Funny thing about me, maybe it's just me... I have reached the point with this thing where I rarely cry when I'm upset. Soon as the kids do something awesome, I'm boohooing like crazy. Sometimes I just look at 'em and I can't stand it. Other times they say something sweet, like when Richie and Maelynn try so hard to help their brother.
But it's these little things, these little celebrations, that set us apart to a degree. I'm sure a lot of parents get sick of whining about being tired. And that's okay! But to us, it's huge. Ginormous. A glimmer of hope in a somewhat frustrating land.
Today, I was sitting outside the therapy room with the littles, and I heard something I hadn't in a while. Screaming. Then thumping on the wall. For some reason, I found out later, a switch flipped and a compliant, happy to try whatever Ryan turned to screaming, head beating, wall-hitting Ryan. It happens. Everything down to the way you touch him can cause it, but when you've reached that point, you could offer anything and it wouldn't help. It's like he's fallen through to another dimension, and something there is tormenting him to no end. You want to reach through the fear, take his hand, and guide him out. Guide him back to Ryan. The boy who giggles and snuggles, the boy who lets his little brother fall asleep sharing his pillow so he can watch the iPad while big brother plays. The boy who tells himself "Mae-mae tickles" when his baby sister touches him, to calm himself so he won't scare her. I don't know how he gets down to that depth. I can tell you some of the things that can send him there, but I cannot... and this heartbreaking... I cannot tell you why. I can tell you some things to avoid, but not all. Candles, butterflies, flies, washers, dishwashers will send him to hysterics. Crowds are hard, as is waiting. We do our best to not completely avoid any of these things.
This is where I start to look around. This past week, when Ryan was completely apart from together and we were on our way back to the hotel, I kinda went numb. I saw faces pass by. I saw a couple of people obviously staring (okay, way more than a couple), and one even appeared to be laughing at him. The thing that hurts the most is watching my child suffer. The thing that makes it worse? The thought that someone, somewhere, is thinking that this is just a kid pitching a fit. That he has no place here. That he's bothering them, that this behavior belongs somewhere else. I know, I know. I can't spend my whole life worrying about it. I know it happens. It's happened to me in the past, and it happens to people I know with kids like Ryan all the time.
The other night, as I scrolled through the ol' Facebook, I came across this...
If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order. If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she sees it everyday. If Dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke. If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how. He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today. If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple. Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand. No, it’s not bad parenting. Discipline won’t help. This is autism, it’s his life. Don’t judge him, he’s not judging you. ♥
It was posted by our cousin, my husband's if you want to split hairs. She has a child on the spectrum as well, and we have loved getting to know each other online! I'm pretty sure it's anonymous, but whoever anonymous is, he or she has my deepest thanks. This is so "us" it's scary. What someone else sees or hears as an annoyance is our whole life. For just a small sliver of time, we all have a choice in this matter as a bystander. We can make it worse, or we can seek to make it better. From my experience, at this point, even the most well-meant advice is not helpful. Chances are we've tried it all at this point, and we just want to get out of there. Dignity is out the door, and at this point, we wish we were too. But whether he's on the other side of the wall or in our arms, we still can't help much. What bystanders are seeing at this point is just the tip of the iceberg.
So what do I do? It's so not fair! It's not his fault! It's not my fault!
Right. It's not. And the problem, so often for me, is that I want everyone to know that we are innocent. We are doing the best we can. But the truth is that I need my patience and understanding for my son. I need to remember... I must work at remembering and knowing... that others' opinions of our outward appearance aren't mine to control. All I can do is perform for the only audience I have. Do what I can, keep going, do my best, and remember that only I know what I have to deal with. I can attempt to explain, but only willing ears will listen. Please don't misunderstand... I love that post and will continue to do my best when I can to educate others about us and folks like us! But as much as I appreciate what it says, I know that no amount of cleverly-worded sayings or pleas will prevent me from experiencing this kind of hurt. I will keep sharing them! I will keep sharing our story! But I will also promise you that I will continue, and more seriously, working toward worrying about Ryan, his feelings, our family, and of course my audience of one.
This Journey is My Own
~Sara Groves
When I stand before the Lord, I'll be standing alone.
This journey is my own.
Still I want man's advice,
and I need man's approval,
but this journey is my own. .
Why would I want to live for man
and pay the highest price?
What would it mean to gain the world, only to lose my life? .
So much of what I do is to make a good impression.
This journey is my own.
So much of what I say is to make myself look better.
This journey is my own. .
I have never felt relief like I feel it right now.
This journey is my own.
'Cause trying to please the world it was breaking me down, it was breaking me down. .
Now I live and I breathe for an audience of one, now I live and I breath for an audience of one.
Now I live and I breathe for an audience of one, 'cause I know this journey is my own. .
Why would I want to live for man
and pay the highest price?
What would it mean to gain the world, only to lose my life? .
So much of what I do is to make a good impression.
This journey is my own.
So much of what I say is to make myself look better.
This journey is my own. You can live for someone else, and it will only bring you pain. I can't even judge myself.
Only the Lord can say, "Well done."
No, I don't know any of those people... I just love this song. :-) YouTube rocks!
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