Friday, April 29, 2011

The Flipside

We had a rather hair-raising experience the other day.  I'm a weather watcher, I grew up in Oklahoma, my Mama is a weather nut, and the movie "Twister" is in my DVD library.  As a child, Mom and I watched the tornado that destroyed Edmond in the 1980's go over our apartment.  I love a good thunderstorm, the sound of rain, the smell of the air, and the beauty of God's design of the whole thing. But when I got out of the hall to check the sky (yes, I know... I just TOLD you, I'm an Okie!) and saw black toward downtown and greenish sky and still trees, I went back in with the family.  Something about having little ones to protect changed the way I feel about these things.  Shortly after I got back in the hall and all the hall doors were shut, it sounded like something was trying to scrape the tiles off the roof.  Not for long, but it was loud.  Then it got quiet.  Yep, it scared the bajeebers out of me.  Eric and I looked at each other with that helpless, terrified look, and a few minutes later we got up to see what happened.  We had some things blown around in the backyard, but that was all.  Big things... just big enough to tell us that something had really just happened. 

That was just the beginning of a long night for our sweet little town.  Our home, our family, and our belongings were spared, and since the tornado (which was later called an EF1) never really touched down, things were not near as bad as they could have been.  God was merciful!  But it was a night of waiting, rolling with it, and praying for the best. We did spend a whole lot more time in the hall.  One of the most amazing parts of this to me isn't the storm itself, but the peace in our house!

If you've read this blog at all you know how important routine is for our Ryan.  Now take what you know about him, throw him in about a seven or eight foot long by about three foot wide space and add to that mix his 2 1/2 year old brother, his 14 month old sister, his father and I, and our Australian shepherd. Remember, we had no power and all the doors to the hall were shut, so no air conditioning and no air moving.

Kinda makes you wish you could have been there, huh. 

What do you mean, "not so much"? 

Seriously, Ryan was fabulous!  Even when I was shaking and near tears trying to convince he and Richie that this wasn't the time to wrestle, he was just fine.  Completely didn't see what the big deal was.  Richie, even at his young age, was feeling my fear at times.  He cried a little, and so did Maelynn.  But Ryan had the ipad and was completely oblivious.  I'd be willing to bet he thought we were being a little silly!

Oh, to be that confident in crises. 

If I could only be that immersed in the Word and the peace that God wants us to have that I could honestly look around and wonder what the fuss is about!   So often I am shaken by small things.  A comment, a sideways glance, a misplaced binky, something forgotten, a word said in frustration- all these things, I'm sad to say, throw me for a loop at times.  The frustration that I feel prompts me then to pass on the frustration by speaking too quickly or out of my feelings, not what I know to be true.  The world tells us constantly that we have every right to defend ourselves, and to a degree that's true!  We are to be our children's advocate (in my case).  But before I speak, I'm learning that I must first take some time to figure out what I'm defending.  When something is said about Ryan that cuts me (and it happens), if I were to go into defense mode every time, I'd eventually alienate everyone I know.  This would be a tragedy, because just life with a special needs child itself tends to quickly lend itself to alienation.  Having a child who wanders and doesn't communicate things like his name, his parents' names, etc., doesn't understand conversation, and tends to melt down in new and different settings is pretty socially crippling.  One thing I've come to embrace is that as a parent of a child with an "invisible" disability is that as he gets older, I'm going to get my feelings hurt, and often. 

Why in the world would I want to embrace that?!  Sounds nutsy!

Because it's the truth.

As we all know, the truth will set us free. 

See, when something is said or happens or doesn't happen that hurts my "feelers", I am at a crossroads. I can make a choice of whether or not to react immediately.  At this point in my life, I'm faced with the reality that Ryan is no longer a baby.  He is too big to be in the nursery at church, but can't handle being in a classroom setting without some sort of trained assistance.  Most kids his age could walk to Sunday school then meet their parents in the sanctuary for big church.  Not so much Ryan. There is no telling where he'd go if he were turned loose.  So most children's programs at church just aren't going to work for him.  Not without special assistance, and some just won't... and that has to be dealt with in my heart. 

Our church is doing its best to learn to meet Ryan and other special needs kids where they are.  And I can't say that anyone has set out to hurt Ryan's or my feelings.  No one at church that I know of has sought to leave him out, say ugly things to him, or discriminate in any way.  But things do happen at church and everywhere nearly every day that bruise my mother's heart.  I want him to be who God wants him to be.  Truly, I do.  I want this for him because I know from experience that this is the only way to be truly joyful, content, peaceful... and it is certainly the only shot at happiness.  So how do I deal with this?

Here's where I am right now.  I do have a rather soft heart, for which I am thankful.  It's how God made me.  I never want to lose my ability to empathize or sympathize, or my heart to serve or simply care about others' feelings.  To learn to let the comments roll off, "like water on a duck's back" as Nanny would say, is not one iota easier for me today than it was in high school.  So I've got to change my strategy.  After all, the truth is that my son is different and it's going to keep showing up and kicking me in the gut.

First, I have to accept that he is different.  He has limitations that may or may not last, but the truth is that they're here now.  It's not my fault, it's not his fault, it's not anyone's fault.  He is who God made him to be!  I must do my best to lead him to the throne of God, to teach him the ways of the Lord, and to teach him to love others.  If he can't participate in church as much as a typically-abled child, how does that happen? Gee, I guess I have to do what I've been called to in the first place... to do it at home!  It could be that church is just going to be hard for him, and the most he'll get out of it is socialization... which is hard for him!  The bottom line there is that I am to obey by teaching him the ways of the Lord in the best way I can, and God will do the rest. I keep him in church as much as I can, but keeping in mind the idea is to inspire him to love God and love others, not to make him a slave to a certain culture.

Second, I have to realize that it's not everyone else's fault that my feelings get hurt.  It is not everyone else's responsibility to make sure I feel loved.  I must accept responsibility for my own feelings- hurts and all.  The sooner I accept that this is going to be hard and it's going to hurt at times, the better off I'll be, and by extension, the better off Eric, Ryan, Richie and Maelynn will be, too!  Because we all know that old saying, "If mama ain't happy, ain't nobody happy!"  (ouch... it's true, isn't it, ladies... and what a responsibility.)  So when faced with a situation, it's far better remember that most of the time, someone is trying to be helpful, and has no idea that what they're saying is offensive.  To realize that my feelings, hurt or otherwise, are my own and are to be dealt with in my heart and with the help of the Lord releases me from the desire to "fix" others. I'm not saying we shouldn't lovingly educate... but lovingly sharing information has to be done in the right context, or we hurt our cause instead of helping.  Once when I was talking to my great aunt Gladys Mae, I was telling her how much I'd love to see her the next time I was in town if she had the time to come to Nanny's, too, but that I understand if she couldn't. I went overboard telling her how much I don't want her to feel pressure to be there... and she said the most amazing thing.  "Don't tell me how to feel!  How silly!  You can't control how I feel!" and she laughed. How true.

Third, I must realize and accept that the typically-abled children in the church have needs, and to make sure that I don't reverse-discriminate.  Recently a sweet lady wanted to do something fabulous for the spiritual growth of the children in the church of similar ages to Ryan's.  This is a wonderful opportunity for them!  She came to me on her own to make sure I knew what was going on, and to give me the news that it was simply something she didn't know if she could include Ryan, but was willing to try.  This meant the world.  I cannot tell you how many times I thanked her for coming to me... for making sure our feelings were acknowledged and for expressing her desire to make sure Ryan is involved in whatever he can be.  This is something that is beyond Ryan's limits, and I know that his involvement would not just complicate the program (which is only a few weeks, by the way) and render it almost impossible.  We also spent time talking about how we can help Ryan be included in other things in church.  Our church is not huge, it is not a mega-church by any stretch... but it does have a heart to be an Acts 2 community, and this is a way we want to work to improve our effectiveness in the city.  If I insisted on excercising his right to participate in the program, please trust me when I say that it would not have been a good thing.  Sometimes knowing and accepting our limitations is the key to being appreciative of what others are genuinely trying to do. Between Ryan's limitations and the limitations of the size and placement of the church itself, even with cooperation from both parties, there will be things he just can't do.  That is deeply disappointing to say the least.

Enter the crossroads.

Disappointment, hurt feelings, frustration, the fact that very few people really "get it" as far as our everyday lives and limitations... all of this is heard. Every tear we shed, every word said to each other as we journey down this road, hand in hand, Eric and I, is seen and heard.  The Lord is there, and He hears our cries.  Although we can't see the future and it all seems to be falling apart in ways, He knows the steps.  When we can't see what the next step is, even when the next step looks like it's right off a cliff into the unknown or even the dreaded, He reaches out and reveals the next step as soon as we lift a foot.  This time, the step is for us to be more like Ryan.  Although certain and even predicted disaster looms on the horizon, even when there is justified cause for anger, alarm, and panic, if we will calmly step back for but a moment and allow the Holy Spirit to reveal the big picture, He will show us the next step.  If we are too tired, too weary from the journey as we often are, He will lift us and carry us to the next step.  He will give us encouragement along the way as He always has!   And just as God gifted all of us with not only safety but a peaceful Ryan in the hallway during the storm, He will give us peace and clarity in our decisions if we will only step back and choose to rest in His promises and choose His peace. Easier said than done, I know... but I've tried it both ways, and I can tell you that the blessing of His joy and peace is amazing. 

Wednesday, April 27, 2011


I actually wrote this in September of 2009... still applies.  The older Ryan gets the more different he becomes, for now anyway.  The differences begin to sting a little more often these days.  Just remember... for everyone, not just special needs kids... that difference is a call to understanding and growth, not a call to separate and hide.

This morning was Ryan's second day of school. His first day went great. He loves his teacher and he made it through the day with no fits and only one fussy time, and that was when he had to wake up from naptime- and I can't blame him there. As I stood outside the door of the music room waiting to see his teacher so I could let him go, I couldn't help noticing how many kids were still crying for mommy the second day. There were still parents trying to peel their kids off their bodies and send them off with the reassurance that mommy and daddy love them, while the kids clung for dear life. Wasn't long before Ryan joined them. His protest of choice is to yank my arm in the direction opposite the offending area, adding screams for effect. I quickly squatted down, held him close (as close as you can when you're pregnant and holding a 14 month old who outweighs a lot of 2 year olds) and tried to reassure him. Usually we stick out like a sore thumb when he starts this, and I have to admit it was nice to blend in with the scenery for once. For a minute, anyway.

Still not seeing his teacher, I notice Ryan seems to be more comfortable away from the crowd of weepiness. So we go over to this little two foot tall brick wall that separates that part of the hall from the cafeteria, which is empty. It's not long before Ryan almost runs into this nice woman who is sitting on the wall, and as we soon learned, was waiting for her grandchild to get settled before she left. Being a grandmother, she immediately starts trying to visit with Ryan. She starts in with the usual when you're talking to little kids. "Oh, you don't want to go to school" and "you'll love it if you try" and things like that. He's doing his usual, no eye contact or responses from him. "He loves school," I reply on his behalf, "but this morning is a little out of his comfort zone." She asks who is his teacher, I tell her. She tells me whose class her grandchild's in, and right then I see Ryan's teacher coming with one of his classmates in tow. Immediately upon seeing his teacher and the classmate, the grandmother says, "Oh, THAT one." I try to degreet, but no reply. She's obviously through talking to me and no longer tried to talk to Ryan. I've just experienced my first... well, I don't want to say discrimination, but that's the only word that comes to mind.

For those who don't know, Ryan was diagnosed last November with Autism. It's a very diverse disorder that affects more children than you'd think. Ryan is in his second year of PPCD (Preschool Program for Children with Disabilities) in public school. His teacher was toting one of his classmates who has more obvious disabilities. It was immediately obvious to the lady we were visiting with, and out of either fear of what to say or how to deal with what Ryan's problem might be, I felt like she was just done. It wasn't an encounter that will change my life or Ryan's, and neither of us will be in therapy because of it. But it did make me a little more aware that He's different.

Oh, I know Ryan's different. Believe me, I live with him! To see him, he looks like a completely developmentally normal four year old boy. To an extent, he is! He loves Thomas the Tank Engine, Elmo, playing with cars and trucks, and firetrucks, police cars and anything else with a siren just fascinates. But Ryan's brain is made a little differently. It's like buying a computer. It has on it either what you pay for or what you put on it. Just imagine if you were made without the program that helped you know not to laugh at those around you who were crying, or how to process "it's time to be quiet now" in church and concert-type settings. Imagine what it would be like! What would it be like to not know how to hug, or have to be taught. To not know how to call for mommy or daddy when you wake up scared. To not understand how to communicate "I'm hot/cold" or "my head hurts" or "I'm hungry/thirsty". Add to that Glaucoma, and bright lights hurt your eyes. Now stick yourself in a setting where you don't know what to expect and surround yourself with people who expect you to automatically know all these things and be able to respond properly in an instant. Instead of "does not compute" we get screams. Or he bangs his head or elbows. Or both.

Now, I didn't start typing this just to complain about how hard Ryan's life must be. And please don't assume that every Autistic child has the same challenges as Ryan. Autism is a spectrum disorder, and there are a myriad of different things that can be challenges to these people. No, they don't all count an entire box of dropped toothpicks at once, nor do they all rock all the time and insist their underwear come from Kmart (for those of you who've seen Rain Man)! But they do all have feelings.

All disabled (or differently-abled, or developmentally behind) people have feelings. They do! They can hear you and see you and notice when they're treated meanly. They know they're different and so do their parents. Trust me, it's hard enough to accept the fact that there might be something wrong. If you've known me or my husband for five minutes you know how very important music and especially band is to us. One of my personal fears is that Ryan, who idolizes the high school drumline (to the point he just HAS to have his mallets with him much of the time), will be too freaked out by the crowd to handle being in band! All parents of children developmentally on target or otherwise have fears and dreams alike for their children. It's just that some of us see problems that are so immediately concerning that you can't help but project themto the future... and though we're told that Ryan could, with proper therapy, pretty much be normal in a few years it's still scary. It's still hard to pick up your child and instead of hearing all about what they did in Sunday school or school you're lucky to get "happy to see you". It's hard to not really be able to visit churches when you're out of town because you just don't want to put him through the ordeal.

I guess I'm asking... or pleading... with all of you out there to remember that these children (and adults) are made in God's image just as we are. They aren't mistakes or to be shoved in the corner and forgotten. They are fearfully and wonderfully made! They and their parents/caregivers need smiles just like you do. So don't be afraid to talk to them! Even though our Ryan won't likely give you eye contact until you've been "programmed" into his world, he needs that interaction. We and so many other parents live to help our children understand the world- how to play along with all the unspoken rules that go along with all relationships, no matter how brief. I know also, for all the teachers reading this, that not all parents are easy to draw in and get involved, and not all parents are willing to help work with you, so I'm not trying to make you feel bad. To all of you who work with/for children with developmental delays, Thank you! People like you are the reason Ryan is learning to hug us good night and tell us what he needs. You're the reason we hear less screams and more words... period!

So next time you hear a child pitching in a fit in a restaurant or at the store, remember the computer that sits in your lap or on your desk, and that he may not be equipped to deal with what he's being put through. And remember that the same God who sent Jesus to save us from our messups and stupid mistakes created this person and loves them just as He loves you... and He does love you just as we love our kids. No matter what.


Thursday, April 21, 2011

Rising and the Red Button Incident

I almost didn't get out of bed this morning.  Really.  But this time, it was because I had an indescribably beautiful baby girl snuggled up to me in her pink doggie pj's.  As the morning light seeped in through the window sheers and graced her round, porcelain face and made her golden brown hair shine, I watched her rest completely still except for the gentle rise and fall with each breath and the nod of her pink binky every now and then. What an amazing blessing... a gift... our children are.  Can there be a more fabulous sound than the slaps of tiny bare feet on the kitchen floor?  How awe-inspiring and humbling to think that we are chosen to give them a home; to make sure they feel loved and learn to feel and share the love of Christ!  Then I thought about the stark contrast between our two younger and our oldest. 

When Ryan was a baby, he was the only one, and we would sleep all snuggled to each other after Daddy left for school.  The older I get, the more I cherish the things that were normal baby things he did.  Back in the days when we just loved being parents and couldn't wait to see all he'd do!  I had decided our kids would learn to read before they went to pre-k and would learn to read music at the same time.  They'd start piano at an early age, and would basically walk into the school the first day of pre-k with everyone telling them how amazing they were... and of course, everyone would talk about how smart and well-adjusted the Senzig kids were!  Oh, and I was going to be the Martha Stewart of room moms.  Look out.  Equipped with more Tupperware than is ever neccessary, I was gonna rock their little Elmo socks off with my baking skills.  Yep, I'd been waiting my whole life for this!  Ever since I was a little girl "raising" my Cabbage Patch Kid (Annabelle, and yes she DOES live in Mae's room now) I couldn't wait.  It's not a popular thing to say in this day and age, but I wanted to be Betty Crocker, Donna Reed, and June Cleaver all rolled into one and stuck in jeans and a t-shirt. 

But what I didn't know was that the t-shirt would have a giant puzzle piece on it for Autism Awareness.  All that effort I was going to pour into having our children be exceptionally gifted and super-overachieverly prepared was going to go into just getting Ryan to do the basics.  I didn't know I was going to beg him at nearly six years old to just please go to the bathroom without screaming and crying.  Just walk, please.  I expected to train him to sit in church at an early age just like I did my sister Bree, and be able to keep him quiet with the evil eye from the choir loft just like Bree.  And yes, that really did work... she was awesome!  Instead, I'm doing good to keep him semi-quiet and confined to the pew-area we're occupying.  I also had no idea that the job I had done professionally would turn out to be exponentially easier for me than figuring out how to be an autistic child's mother.  Yes, folks... I am far more comfortable with my ability to handle 150 sixth graders with musical instruments than I am in my ability to take my son to the grocery store.  There, I said it.  It's inexplicably difficult to admit it.  I LOVE my son, don't get me wrong.  It's just that walking through the grocery store with a nearly six year old slapping his ears, beating his chest, and now hitting me (that's new, by the way) and screaming like some kind of tribal man off to war hits this people-pleaser where it hurts.

The contrast is amazing.  Richie is now beginning to help his brother.  He leads Ryan back into the house when it's time to come in from the backyard, pleading in his sweet Richie voice, "Come inna howse, Yyan!"  He reminds Ryan of the rules, especially with the piano.  "Fingahs onwey, no feets, Yyan," Richie reminds as he hears (even from the other room) Ryan holding the sustain pedal as he experiments with intervals.  Richie's sweet heart is such an encouragement to me.  Ryan is his hero.  Richie has no precluded ideas about behavior or culture.  He just loves his big brother.  Richie even used to try to stim, or handflap, like Ryan.  So precious, that unadultered love and trust.  We are getting to the point where, when Richie copies some of Ryan's autistic behaviors, we have to explain that brother does that because he doesn't know better, but Richie does.  This is true, and that's just one of the parts that is hard to swallow.

Other than the diagnosis itself, and really more than that, is the death to my preconceived ideas about all of life.  How my house would be kept, how I'd teach my children everything, how we keep our marriage healthy all has to be relearned in a way that fits us. Yes, that sounds familiar to most couples, I bet.  The hardest part for me is realizing that I do have to draw lines, and more often than I wanted, the lines will be drawn in a way that the answer is "no, I can't do that."  



Now, yes, I physically CAN walk out this door every day and do whatever.  I can force my will and do whatever I think is right... to a point.  I could do a lot of things, but the hard part is listening and hearing the difference in "good" and "best".  Last week I got a lesson in that.  I had been thinking after a few weeks of these sweet neighbor boys watching Richie for me while I take Ryan to therapy with Mae in tow that I really could do this on my own.  They were out on vacation for a while, and I found myself carting all three kids by myself to Baylor.  Everyone got out of the van just fine; we made it into the building just fine.  Richie and Mae let me sit and read books to them the whole time, and we spoke with Miss Stacy, then left.  On the way out, I learned my lesson.  See, there are all these emergency call boxes all over college campuses.  They're equipped with these big, round, bright red, irresistibly pushable buttons- just at Ryan-eye-level.  Usually, I can keep a hand on Ryan and a hand on the stroller.  This time, Ryan led Richie away and as I was getting Richie, he bolted straight for that button and before I knew it, that blue light on the top was flashing and I was telling (while half-running away and trying to not say any unsavory words) the campus cop who calls out loud so loud that half of McClennan county can hear that yes, all is well. As I walked away, once the embarrassment subsided and everyone was safely buckled into the van, it hit me how much I do need those boys, and what a God-send they truly are.

We are at a crossroads (thanks, Kay Arthur) in our lives right now... and really, several times a day.  We can whine, be sad, be angry and resentful and let that grow into bitterness, or we can ask the question God asked Jonah. 

"Do you do well to be angry?" 

Well, do you?  How's that workin' for ya?  For me, not so good.  I'm not denying that there is a grieving process for every hard thing that happens in life.  But I am saying that at some point, we have to realize that the time we're spending bemoaning our trials is time SPENT.  Time we could have been stroking those golden-brown curls.  Time spent letting Richie kiss-hug-kiss-hug all over my face till he giggles.  Time spent laughing when Ryan passes the emergency box and says "you LOVE to push buttons" every time since the red button incident.  Yes, I get angry.  At least once a day I look at God and say, "Are You SERIOUS?!"  Yep, I have plenty of fodder for those, as I'm sure you do.  Just last weekend we spent part of a gift to give back and participate in the Waco Walk for Autism.  After walking one lap around the Fountain Mall, we found Ryan's beloved Miss Stacy, who had her iphone out, and yep, that was it for Ryan.  Twenty minutes to get the phone away from him plus forty-five in a meltdown equals the whole of our walk experience.  Ah, well.  Just today, we had to have a new tire on the van.  No one in town had one, so I bit the bullet and took Ryan with me to the Goodyear store in Waco.  Yep, meltdown city.  First I had to keep him from running out of the store and into traffic.  Then spent the rest of the time calming him down, because man, mama... you're mean not letting your child play in traffic. 

Just like anyone else, after all that, I was so tired and really wanted to crawl under a rock, even just to get some sleep.  But instead, I tried to remember in each instance... there is always a reason.  I may never know the reason or reasons behind anything that happens, but I trust that the same God who loves me enough to send His only precious Son to die a horrendous (at best) death so that I could experience His love and peace has nothing but my best interest at heart.  The same God who knew me before the foundations of the earth has a plan for my sweet children!!! 

So I am thankful not for autism, not for frustration and anger, not for tears and emarrassing situations, but for the precious, innocent smiles and snuggles I share with the special children with whom God has gifted me.  I am the most thankful for the Lord who died so that the grace and mercy and love and peace of God can flow through me, that I may glorify Him in every meltdown and every scream and hit, as well as every hug, giggle, and victory!  I am thankful for the discernment and wisdom that the Holy spirit and Word of God give me!  Without the death, burial and resurrection of Christ I would not be able to rise in the morning. 

Instead, I'm unable to rise because I don't want the sweet moment to end. 


Wednesday, April 6, 2011

Elevator Hatred

Hi.  My name is Crystal, and I have an unhealthy hatred of elevators.  It's nothing personal... well, maybe it is.  Elevators nearly tanked my family's Saturday, and they frustrate attempts to enjoy church with my husband's family. 
Last weekend, the Baylor Autism Resource Center had a fundraiser to support the work they do and, by association, the learning they receive.  It was a parent's day out.  For an entire three and one-half hours these sweet graduate students showed these children and their siblings a movie, fed them lunch, and played with them outside.  We took our Ryan and Richie (who wasn't really old enough, but they just couldn't resist) and left them with these young ladies for some almost child-free time.  Eric, Maelynn and I had a great time having lunch, doing a little shopping, and walking on the Baylor campus for a while.  As we strolled (HOLDING HANDS... omigosh! How novel!) up to the building to pick up the boys, a blood curdling scream pierced our hearts. 

It was Ryan.  I didn't even have to see him.  There are some sounds you just know as a mother, and I knew this better than I know my name... he was positively beside himself.  This is not the scream of "I didn't get my way", it's the completely disturbed, frustrated, angry, unhinged wrath of a child addicted to an object or action.  Once he sees an elevator he has to watch it.  HAS to.  We can use them, but it has to be in a very matter-of-fact manner, and I have to show absolutely no excitement or negative emotion whatsoever.  We use them every Thursday to get Ryan to therapy.  There are stairs, but I'm a firm believer in not avoiding these everyday obstacles but hitting them head-on because that's how life is.  So every week as we get out of the van, Ryan nervously reaches up and says "pick you up?!" Keep in mind, I'm by myself with he and his sister, who's in a stroller.  "Okay, Mommy will pick you up when we get to the building."  The whole way to the Draper Center, I have to either hold his hand (which he hates), hold his arm, or convince him to push the stroller with me.  There's an emergency button that we have to walk by every time, and he's dying to "push the button" and will try every time to sneak away to push it, so I make sure to stay between he and the button.  When we get to the building, Ryan nearly climbs up my legs to "be my backpack", and we hit the button to wait for the elevator as he stims, flopping his hands and humming nervously.  I've had to ask him several times to ease up on my neck... he gets so nervous and clings so tightly that I can feel my throat beginning to close.  We go up one floor (thank you Jesus that it's not any more) and get off, heading straight for Miss Stacy and the BARC.  If he doesn't get to go in immediately, he will try the door, then when he realizes it's locked, will go straight for the elevator every time.  Just to watch, mind you. He stays far enough away that (in his mind) it can't hurt him, but he can still watch the doors open.  The only thing that gets his attention is the glorious fact that he loves his therapist!

So on Saturday, as the sweet graduate students brought the kids back from watching the movie, they passed (unwittingly, poor things) an elevator.  My sweet boy tried the rest of the time to get back to the elevator.  It's not unlike the strongest magnet you can imagine.  Magnets don't forget they're supposed to be attracted to something, they just keep pulling and pulling... and so does Ryan.  When we arrived to pick him up, Ryan was sweaty, shaking and screaming, and the moment when someone relaxed, he took off to find the elevator again.  So picking up the boys turned into Miss Stacy keeping Ryan safe as he desperately tried to get back to the elevator (and I am impressed with her, I must add) while I changed Richie's diaper, then other students played with Richie while I calmed Ryan for about twenty minutes before I could even begin to talk him into going to the van.  He eventually calmed, but after one store with him stimming on everything and trying to keep up with his wiry level of sheer, unbridled energy and interest in everything spinny, shiny, and illuminated, by the time we found my husband some shoes I was ready for a nap.  Or something stronger.

Saturday was not our first encounter with love/hate things for Ryan.  In fact, many of those things color everything we do, right down to when I run certain appliances.  It used to be cute, his love of elevators.  But while we blinked Ryan turned into a nearly six year old boy instead of a baby.  Babies can be corralled in strollers, and they're tiny and cute and chubby and expected to "misbehave" and have a tantrum every now and again.  Six year old boys?  Not so much. 

When we first began learning that Ryan was different than his peers, people (even medical folk) said things like "get him in the right programs and he could grow out of this!"  All-righty!  I can do that!  Sign me up!  Let's get this under control, because I don't like seeing my boy so rocked to his core by something as simple as a fly buzzing around the house.  And yes, it happens.  Just last night Ryan sat at the table at dinner holding his ears and shout/scream/growl/yelling while hitting his elbows together, then he said, in a shaky voice, "it's a shoo-fly!" His poor little face was twisted in fear and annoyance... he really can't stand the buzz and unpredictability of a fly.  My dear husband, righter of wrongs, slayer of shoo-flies, slayed the beast and we thought he might eat.  Nope.  Washer and dryer were running... dangit, I forgot.  They usually run when he's gone.  "Ryan, would you like Mommy to turn off the dryer?" "Mommy turn off the dryer!" he says, and it's off.  Still so upset he can't eat.  The washer happened to be in a spin cycle, so I put him on top of it, and you'd have thought I bought him the coolest toy ever.  Calmed from the motion of the washer, Ryan got right down, went to his place, and finally began to eat.


This spring is scaring us.  The more I look back, the more I realize that the reason for that shock and awe that Ryan is so big and still isn't "normal" is due to the fact that we rested in the wrong things.  In the times when he was melting down, I rested in the words of men.  The well meaning words that were meant to encourage us to get him help, I used as false peace.  We did get him help, and so much I have asked God that if it were in His will, please take this cup from Ryan.  Please.  I've begged.  I've pleaded.  And Ryan has improved leaps and bounds!  God has blessed little Ryan and has used him in my life, for certain. 

But the cup... the diagnosis... the challenge... remains. 

As we're learning in "Anointed, Transformed, Redeemed: As Study of David", it is at this point that I can become angry and stay that way.  I can choose to grow in frustration, not understanding why children are born with challenges, illnesses, and issues, or why they die until the frustration grows to bitterness.  The alternative is to cling to Him, to His hope and the knowledge that His ways are higher than ours.  I can choose to rest in "because He said so".  I believe with all my heart that it's best to believe He is in charge... I'm not.  Does this mean it will never hurt again?  No.  Does it mean that if I have faith enough this will all go away?  No.  God is not a vending machine. 

So why? 

Through my life, He's never failed me.  Even when others left, He didn't.   At 2:00 in the morning, when slogging through the daily activities of mothering, housekeeping, serving... even in the pick up line at school... He is there.  His presence gives me peace and strength at those times when no one else's words could touch the pain.  He's also there to tell me to "suck it up, cupcake" and keep moving, even when I don't feel like it.  He has given me and gives me ways to have fun, to serve others, to use my talents, all in ways that I can still put first His responsibilities for me to carry... my loving husband and beautiful family.  Through His word, His spirit, my experiences and others, He's consistently cared for me like no one else could.  He's carried me through times when friends were scarce or non-existent, through times when people who had been friends chose not to be, when I lost those dear to me to heaven, when the calculator and the checkbook were not friends, when I was at my most scared and lonely.  He proved Himself true, and He continues to prove Himself true every day, through every meltdown (Ryan's AND mine).  He forgives, he corrects, he disciplines... but always out of love.

This is where I'm spoiled rotten... advantaged, if you will...

I can't deny His sovreignty.  I need Him every hour.  When answering yet another set of questions, getting another call to pick Ryan up because he's inconsolable, waking up to stick another binky in Mae's sweet face at 3:00 AM, I need Him.  I'm not thankful for autism, don't get me wrong, but I am thankful for how close it keeps me to the Father's side.  I AM thankful for Ryan, Richie, and Maelynn... and for all they teach me every day.  And I am honored to be a mother... and the mother of a special-needs child. 

Yep, I still hate elevators... but I love the God who made my back strong enough to hold my boy and face them... and I love what the frustration they bring is teaching me.

Friday, April 1, 2011

Autism Awareness Day... April 2

Tomorrow morning, as you get up to go about your day, please take a moment to remember those of us who deal every day with an Autism Spectrum Disorder.  April 2 is Autism Awareness Day!

If you will, remember dear ASD people and their parents and/or caregivers:

As your child answers a question you ask, or as you answer any question you've been asked.

As your child looks you in the eye.

Every time your child tells you how they feel about anything, or as you express feeling.

Every time you give your child a hug and he hugs back.

As you shop, and your child stays beside you... and if she gets out of line, she can be corrected.  If she did lose you, she can tell who found her her name, your name, etc. 

When you stand in line for anything, waiting your turn. 

If you have the chance, play a game and notice how you understand you have to wait your turn... and how watching others play the game is half the fun!

As you hear your child complain about the weekend being too short, or sigh as you realize they're going to the next grade, remember those of us who are praying that our child may advance... or that they simply can handle staying in school.

Remember kids like Ryan every time you say hello and someone immediately understands what you're saying and says "hello" back.

If your kids are begging to have someone over, take a second to be thankful they can make friends.

As you go to bed, remember that some kids on the ASD spectrum (not Ryan, thankfully) are barely able to sleep at night. (this one's for a dear friend and a dear relative... I pray that God blesses the rest you do get, ladies!)

If you go to a family or friend get-together, remember that for some of us, although we desperately want to, going to these things can be a life-threatening thing for our child, who wanders and does not communicate.

Remember- please- the therapists who have spent their lives to help these children learn to live in this world that is, at times, so alien to them. 

Remember that we who have ASD children adore our children and know how amazingly special they are, and how blessed we are to have them. 

Remember that Psalm 139:14 tells us that we are all "fearfully and wonderfully made"... not just the ones of us who are perfectly normal.

If you've made it this far in this post, thank you for caring enough to read this far. Thank you also to all the wonderful people in our church who are aware of Ryan's challenges and overlook the extra auditory color (*ahem*) he brings to our services.  Thank you to everyone who works with him on a regular basis, at church and school.  Thank you to everyone who pats him (and us) on the back... your words are often stored and remembered later as a shot in the arm to get us through a rough spot.  There are times when we wonder if we're doing any good, or if we've completely failed him... but then we remember your encouragement and that His mercies are new every morning, and that since we are to love each other as we love ourselves, we have to first love ourselves... and you can't love without mercy.

If you've ever made a comment to me on the blog... thank you.  I share my truest heart in these writings in hopes that someone somewhere will benefit from our struggles and triumphs, and your comments prop up the hope that someone will find encouragement here. I believe with all my heart that our experiences are given to us as gifts from the Lord himself to learn from and to share... so in a way, this blog is but a tiny part of my paying it forward, if you will.   Because I have been given much, I too must give... and holy cow have I been given much.  I really love our life, where we live, and who we live around, and continue to be grateful for the amazing blessings the Lord bestowes!!!

So for now, nothing profound, just a few thanks and a reminder to remember the ASD people in your life tomorrow, April 2.  If you want, you could even wear blue in support.  I'm not sure why blue... I've heard of places "lighting it up blue" for Autism Awareness with blue lights outside, but let's just say I'm not quite that ambitious.  Doing things in the front yard without three people to keep Ryan from stimming on cars... even changing the porch light... is asking for him to be run over. 

Thanks again... and I know if Ryan could, he'd thank you too.
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