Mommy: "Honey, you have to eat your jelly toast."
Ryan: "First jelly toast, then burger." He tries this a few times to no avail.
Mommy: "No, sweetie. First toast, then get dressed, then Thomas."
Ryan: "First toast then BURGEEEEERRRRRR!!!" *Scream, scream," BURGEEERRRR!"
Thus began the morning. He did relent and eat his toast. After breakfast, we were all in the living room hangin' with Thomas, James, Percy, Edward... you get it.
Ryan: "I want a burger."
Mommy: "We can have a burger for dinner tonight, ok?"
Ryan: "I want burger!"
Mommy: "We can have a burger for dinner tonight, sweetie. I know Daddy will love that."
It wasn't on the menu... the prepared-a-week-in-advance, squeeze every meal we can out of one pound of cheap hamburger menu I'd prepared. But he wanted it BAD, and I have a couple extra pounds in the freezer. And this time, he was asking nicely. back to your regularly scheduled whatever this is...
Ryan: "Ryan caahave burger for dinner."
Mommy: "Yes, baby. Ryan can have a burger for dinner."
Ryan: "I WANT BURGER!"
This is the first meltdown of the day. I have no idea if he understands what I'm saying and just wants it now, or if he is just struggling to comprehend, or a combination. Either way, the screaming, kicking, hitting the furniture has begun. Fast forward a bit, and it's lunchtime.
Mommy: "Boys, come to the table! Time to eat your sandwiches!"
The boys, after a couple reminders, come padding, gangling, hopping, yet meandering into the kitchen.
Ryan, upon seeing his dinosaur shaped grilled cheese: "I want burger!"
Mommy: "I know, sweetie. I don't have one ready now. We'll have burgers for dinner."
Ryan screamed and thrashed around in his chair, beat the table, beat his chest, and it didn't matter what I said. He had to go to the living room and calm down at my request. When he came back, he ate half of his sandwich and asked to go take his nap. Rare, but when you've been exerting that much energy and only God knows how much mental/emotional energy, you're tapped. He and brother go to their room to take their naps. In their room...
Mommy: Take off your glasses and shoes and climb into bed, Ryan. Kiss Richie, already in bed.
Ryan: "After naps you can have the iPad."
Mommy: "Yes, baby. Absolutely. You can have the iPad after naps. I love you both... get some rest, little buddies."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The rest of the afternoon was much the same. Mostly about burgers, some little fits centering around toys, giving up iPad when the timer went off, sister gettin' all up in his business. But he was his parents' child, and totally wanted that burger. He even goes as far as to put his hand on my shoulder and say "That's a good ask!" when he asks for something, thinking (I think) that his reminder will surely snap me back into my mind, giving him what he requested immediately.
Maybe not.
Heavy on the "not." But it's so cute. I love it. The screaming, physical outbursts, and just plain demanding isn't cute. Far from it. All day long we watch Ryan so disturbed over something we've simply said "later" about, or something he just can't have right now. The other day's two and a half hour meltdown over milk, today's burger mess... they frustrate me beyond compare. What do I do, just give in to calm him down?! I know he's smart. I know he'll see a hole in the fence and exploit it.
I can't be afraid of his fits. I can't be afraid of him. I can't get mad. I can't show frustration. When I do, it gets worse. His fear feeds on mine, and it spirals out of control. So I swallow, go on auto, and keep repeating things like "first this, then this" and "you're ok" and "if no this then no this". But I get so sick of the sound of my voice. There are times I think if I hear myself say the same thing one more time I'm gonna puke, pass out, tear out my hair, or all three. Run screaming through the neighborhood, maybe? Go back to bed, nope. I've done that before when Eric got home, though... just long enough to regroup and find my brain so I can cook.
Watching your child suffer at all is awful. All of us as parents will, unfortunately, see some kind of suffering in our children's lives. Remember that horrible face your child makes as you help the nurse hold him/her to give a shot? That "what the heck is going on and why aren't you doing anything" look? There's a bit of that in every meltdown. You can tell that part of him wonders why I'm not fixing it. But I know from experience that all I can do is wait and keep him safe. He's not a bad kid. He is a good kid with autism.
Funny, saying that he has autism... classic... severe... autism still rings in my ears and makes my stomach ache. Still. I try not to dwell on what ifs, but how can you not think about it every once in a while? Here we are sending this precious being into a classroom with about 25 other kids... one teacher (who we really believe to be the best fit possible)... blllaaaah. I do this every day. I do it because he's my sweet Ryan... he's my first baby. He's the one I talked to, Eric read stories to before he was born. He's the one who was tucked snugly in my tummy as I stood in his bedroom in our house in Fort Worth, gazing into the empty crib and trying to wrap my mind around parenthood.
But he's also the one who wasn't talking at 2, then 2 1/2, then 3... the one who couldn't make eye contact such a short time ago... the one who still watches Elmo and loves every minute... the one who must complete every task he starts... the one who perseverates with the persistency of super glue.
I used to pray that God would take this away. Every day, I prayed it wouldn't be autism. I begged. I pleaded. Then came the day when we heard it in the meeting at school and both of us cried, and that was just "it's probably autism". The diagnositican was (and still is) a good friend of ours, and I can see her face and hear the words to this day. Then there was still a chance, I felt... a smidge of a chance there was something missed, something added that shouldn't have been, and it might be wrong. This year I just knew when he was re-evaluated he'd have improved so much there would be a change, and there was.
This time they were sure. Severely autistic.
So what do you do with this? Some have watched and think that it can't be as hard as we say... but it is. We love our kids, all of them. Any issues any of them have we're in for the long haul. The everyday gets rough. It gets hard. It drags every last ounce of energy and sucks the life out of me at times. The single thing that keeps our hearts plugging along is our faith. "But God didn't take away autism," you might think. No, He didn't. Could He? Absolutely. But I choose to believe every day when I wake up that He knows best. I will be faithful to love my boy. I will do my best to do what I can and push the limits of what I think I can do. On the days I can't... on the days I don't have it, nothing makes sense, and it all seems too hard, and I don't have the heart to even look up, He carries me. He holds me.
Life doesn't wrap up in a nice, neat little bow all the time. It's not fair. It's not easy. But it is worth it. In the middle of the autism mess, we're given things to make us smile. My kids laughing... the rare moments they're playing together, or even alongside... are among the most amazing things in the world. I'm scared of a lot of things for my Ryan. Among the life-altering lessons I've learned while Ryan's blessed our lives... humility. Too often it's my pride... my way of thinking, predisposed "what I deserve" or "the way it should be"... that trip me. Leave me in tears, wondering how I'm going to keep doing this. Yes, somewhere between my kids and scripture I've seen more of how multi-faceted and sneaky pride is, and how it wrecks things without me even knowing it.
So as I'm cleaning my potty training three year old's puddles from the carpet as Ryan is asking over and over and over and over for milk/iPad/black cookies/whatever and Mae is trying to crawl up my back, I'm gonna try and remember... again... that it's these things that make up life. That I make mistakes and am difficult at times, too, even though my husband doesn't complain. But really, what matters is hanging with each other. Enjoying what we can, working through the rest. It's all about learning to love each other more than ourselves. To love as Christ loves us.
By the way... I decided, after a day like that, to go ahead and have burgers when I was going to serve leftovers. When Ryan saw his burger, guess what? He refused it and started screaming for the VSmile Thomas game. Never did eat, and it's still on the table. No, he didn't play VSmile... and yes, it was noisy. Oh well.
Loving A Person
By Sara Groves and Gordon Kennedy
Loving a person just the way they are, it's no small thing
It takes some time to see things through
Sometimes things change, sometimes we're waiting
We need grace either way
Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through
There's a lot of pain in reaching out and trying
It's a vulnerable place to be
Love and pride can't occupy the same spaces baby
Only one makes you free
Hold on to me
I'll hold on to you
Let's find out the beauty of seeing things through
If we go looking for offense
We're going to find it
If we go looking for real love
We're going to find it
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