Ryan's Tired.

So Ryan had a major first last night.  I about fell over.  Never ever before can I recall him expressing himself this way.  It was time to get in the bath, and as I helped him get undressed, he comes out with this shocker:

"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!

Disclaimer Worthy Day

DISCLAIMER... It's been a long, hard, loud, nerve-wracking day.  Really having to reach to my toes and scrape the bottom of the barrel of my faith to get through.  This post is a culmination of thoughts throughout the day, and at varying degrees of frustration, borne out of a day of just that. I can promise no inspiration today, but I can promise honesty.  

If you read that and want to continue, hang on.  But don't say I didn't warn you. 

After a long time of feeling guilty, inexcusably inadequate, and at times just plain stupid, I've come to a conclusion. A few, actually.  Since you've all been so sweet and encouraging to read my stuff all this time, I'm sharing them with you.  Most of these things are based on experience.  Too many on bad ones.  This is all stuff I haven't mastered, will likely never master, but I'm gonna try with all I have.  This autism mess hurts too much to not try. Maybe you can remind me of one or more someday?  Ah, thanks.  I knew you'd understand.

First, I am first and foremost God's child.  I am a believer in the sovreignty of God, and therefore choose to rest in that.  He has chosen me to live my life and all of whatever comes into it.  There will be people who have issues with this, and they are welcome to have them.  Spare me the conspiracy talk about whether or not He exists... you ask me how I know He lives?  He lives within my heart. I say that on the other side of a lot of hard times, and in the midst of an everyday hard time.

Second, I am Eric's wife.  I promised to love and care for him through it all, and I'll keep clinging to that promise.  We are together for a reason, and we will contiue to work together through all the craziness and end up at the end of the night, on the couch, finding Eric and Crystal again.  Mommy and Daddy will be back soon enough.  Sure, we spend time talking about the kids.  But hey, that's what we're doing right now.  Kids and band. 

Third, I should not apologize for or deny what is first.  I will not apologize for WHO is first.  Or second, or third.  And if I really mean all that, I cannot separate the sovreignty of God from every part of my life.  If I truly believe what I say I believe, I believe without a doubt that Ryan is who he is for a reason.  I wish it was easier.  I wish I had the answers.  But I don't.  I don't know why.  I don't know why it's so hard to transition sometimes.  I don't know why some of your kids suffer from seizures and Ryan's been spared.  I don't know why the meltdowns happen, or what causes autism.  All I know is what gets me through. And that is that I know that there is a plan for my kids... all of them... just like there is for me.  Jeremiah 29:11 has been a staple in my mind and heart through tons of things..."I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future."  This does not at all mean that I don't think we should research causes and cures, just the opposite!  Study away!  Share what we learn!  But my hope and joy do not rest in the maybe of a promise of humans. 
I will realize that everyone else's first, second, third, and so on are their choices, not mine.  God did not put me here to fix everyone else, for I do not know what is best for anyone but me, and half the time I get that backward.  If they ask what I think, I will answer gently, out of love, or I will keep my piehole shut. If I'm ugly to you, smack me.  Really, I know better.

I will seek to understand, not to judge. I will educate myself in matters, not base my decisions on emotion.  Emotions can be deceitful and, when not weighed and balanced by truth, can do an amazing amount of damage. 

I will do my best to be slow to speak, slow to anger with everyone... even those with whom I disagree.  I will, however, admit when I disagree.  Not my strongest point thus far in life, disagreeing.

I will trust that everyone is doing their best with what they were given. 

I will not belittle, berate, bully, and be downright ugly to get my point across.   

I realize that I fail.  A lot.  There is more undone on my to-do than I want to admit.  I am not sure how to tell anyone to deal with meltdowns with Ryan, and I'm his mother, for cryin' out loud.  And I do.   

I will realize that failure is a large part of even the smallest success.  Who can be a success without failing a little? I've heard that WD40 is called "WD40" because it was the fortieth... FORTIETH... formula that worked.  Gotta keep trying.

There are days, like today, when due to taking care of everything else and everyone else, I will be in my nightgown at 2:08 in the afternoon, having not showered in an embarrassing amount of time.  I will try to do better in the morning.  If I do not do better in the morning, I will not feel bad. 

I will ask my husband to watch the kids so I can shower and dress when he gets home, and I will not feel guilty.  He loves me, he loves our children, and he cannot meet my needs if I hide them.

I will be thankful for a man who thinks I'm a knockout in my old, raggedy t-shirt nightgown and crazy hair.  Even when he gets home at 5:30 and I'm still wearing it.  I'll also be thankful that he trusts I've been doing my best, because he does. 

I will do my best to let those who want to get it, it.  I will thank the Lord, truly, that they wanted to try at the same time I thank Him for the people who do get it, for whatever reason.  I will continue to be equally thankful for those who hug us, admitting they don't know how to help or what to do other than pray and be there to hear us. 

I will try to remember that no one can ever fully understand everything that goes on here in a day and why it is so frustrating, yet so wonderful.  Even others with ASD kids can't completely understand, although they come the closest. 

I will remember that in any organization, any group of people, there will be differences of opinion.  I will not be a victim of fear-mongering or guilt trips from any direction, for any reason, from anyone. I have enough guilt over the sheer amount of stuff I'm not keeping up with, thank you. 

There will be times when others are insensitive, or even downright ugly.  When given an opening, I will attempt to educate and enlighten.  I will not, however, teach a pig to sing... it wastes your time and annoys the pig.  I will not feel guilty if I miss an opportunity, I will simply walk forward, head up, heart open, and keep focusing on making my family's life the best it can be.  Or I'll continue carrying my screaming six-year-old down the hall, smiling at everyone who's looking at us like we have three heads. 

I will continue to pray that I never sound like I have it figured out, or I know what you should be doing.  Or how you should be feeling.  That is such a hurtful attitude full of distrust.  God only knows, other than you, what you've really going on inside.  Again, no judgement.

I will not compare my situation to yours, nor should you.  We both have hard days, friend.  Let's just help each other through them.

There will be days full of screaming for hours on end.  Not every day, not all the time.  But days like today when the meltdown lasts over two hours solid, Ryan asking in screams for the same thing over and over and over with machine-gun repetition for hours at a time... and I call my Mom intending to check on her, and wind up weathering it with her on the phone, holding my hand from hundreds of miles away... and in these times I will realize that I'm blessed beyond measure, even when I can't feel it. 

To all of you in the ASD family, it's time to stand together.  To reach out to help one another up, to pat backs, to help each other find a way to keep... or start... enjoying life.  To magnify the amazing parts of our children, brothers, sisters, selves, friends, and try to help deal with the not-so-amazing.  How?  That's up to each of us individualy. But I do know that the majority of the blogs I read and the chatboards and comment boards I look at and comment on are there for just that.  Sharing our experiences... the good, the bad, and the ugly.  There are differences at times, but from what I've seen, they are handled with civility.  And that's the way it should be.  Because at the end of the day, whether you're a ditch-digger or hold a doctorate, make $20,000 a year or $100,000+, your experiences COUNT and they MATTER.  No matter what anyone says.  Whether you vaccinate or not.  Whether you eat gluten and casien or not.  Stay home or work.  Home school, public school, or private school.  We all just want our loved ones to be happy, safe, and comfortable.  Out of pain, emotional and physical.  Let's chuck the guit trips and stick together in any way we can.

I will recognize our limitations.  I will also push them at times.  I will keep trying to abolish "can't" from our vocabulary.  Not yet?  Sure.  But can't ever?  We have to believe we can overcome.  The alternative isn't acceptable. 

I can't (haha) say this enough.  I will make mistakes.  I will not do everything right.  I haven't yet.  But I will continue to do my best, because that's all the kids deserve.  I will try to remember that seeing me deal with my worst is going to be a bigger lesson for the kids than what I did right.  I will hug and apologize when necessary. 

I will cry.  I will curl up in my husband's arms, sobbing, when I can't take any more. 

I will realize the ability to do that shows more strength than I realize.

I will continue to hold unswervingly to the hope I profess... for He who promised us is faithful. (Hebrews 10:23, strung-out mama paraphrased)