Introducing: The Gummy Bear

I always knew I would have a big family. You can't come from a family of nine and think anything less. I'm sure every round of M.A.S.H. I played in fifth grade said I was going to have at least six kids (I don't think I ever wrote down options of anything less).
Well remember when I said I'm a planner? One of the many annoying things about autism is that it changed my plans. I was sitting in a support group once listening to an expecting mom describe her fears of having another child with autism, and I knew then that my plans had changed. We went to a genetics clinic and we read all the research. We found out that autism has a genetic component. Although we know a couple of families who have more than one child with autism and do it gracefully (albeit I'm sure they don't feel that way), the thought of Waylon The Sequel scares the hajeebies out of me. I love him, God loves him, heck most everyone he's ever met loves him, but one of him is enough.

So I have discovered that God waits for those moments, when He hears us say, "We have a plan" to really throw a wrench in the system.

Well, I don't know if I can necessarily call it a wrench. According to the sonogram last month, it looks more like a gummy bear.
(Insert "don't you know how that happens" joke here.)

So even though my mind had come to a practical and rational decision, I can't say that my heart's not just downright giddy with excitement. I've wanted this baby since, well probably since I was about 10. Sure I'm scared, but it's too late to spend time worrying now. I called the obstetrician, the developmental pediatrician, I've googled "prenatal autism prevention" more times than you can shake a stick at... and do you know what they all say? Don't worry so much.

If we had known Waylon had autism before Rose Mary was born, would we have had second thoughts? What would our lives be like without her? I don't even care to think about it.
I think in a couple of years we won't even remember what life was like before the gummy bear. Because I think it will be perfect. Just the way He planned.

I count my blessings and thank God for each of them daily. And I firmly, and probably selfishly, believe that He has blessed me more than most.     -from I'm a planner.

Night on the town

Went out for a night on the town with the kids tonight... major celebration of this week's B words.
Mom's Birthday, Dad's Birthday, and Mom finished her BSN!!!
Ain't nobody getting lost in this party...

Thanks Aunt Kara for the permanent marker/liquid bandaid tip!

 

 

Night on the town update: After way too much fun swimming, an unfortunately long afternoon nap, and a midnight chocolate ice cream snack, it was determined that Waylon would not be doing much sleeping in the hotel room. Scared that he would decide on a late night trip back down to the pool, father-of-the-year (aka Travis) slept in front of the hotel room door. Like I said, ain't nobody getting lost on this trip.

Caden put his wet trunks on the door knob so Waylon wouldn't want to touch it. Such a good brother.

 

All went well, no one escaped, and everyone had a blast on our mini vacay. Minus Waylon throwing up chocolate ice cream at breakfast this morning. Oops.

 

Ironically, even though it was our birthday celebration, Trav and I seem to be the only ones who are plum worn out. Glad to be back at home with booby trapped doors, Bob the Builder in the DVD player, and a new, fluffy recliner (happy birthday to me!) that is calling. my. name...

Messy messy messy

Most of the words that Waylon uses in a day are echolalia.

Echolalia is a fancy word for repeating phrases he's heard before. (Like an echo... Get it?)

Most of the time, his echolalic phrases are from movies, but sometimes he repeats things he has heard us say too. Last Christmas, we got so excited when he said, "Messy, messy, messy" when he spilled his milk. But we quickly realized that this is what the magician says on Frosty the Snowman when Frosty starts to melt. 

He finds ways to use the limited number of phrases he has, to get his point across. For example, one of his favorite phrases is "Get in your seat," which he has heard Travis and I say a million times when we are getting in the van. However, he uses "Get in your seat" to describe anytime he wants us to sit down for something- to eat supper, to watch a movie, or to go for a car ride. And because he doesn't know how to ask for those things specifically, he simply says "Get in your seat".

So even though he isn't coming up with these phrases on his own- he is using them functionally to communicate. And being able to understand what he is trying to say is awesome.

Except for maybe this morning.... 

I was sitting in the recliner, holding Waylon and his blankie in a sweet, special moment, when he pulled up my shirt, pointed at the old stretch marks on my belly, and said, "Messy, messy, messy." 

Yes, Waylon, I get what you're saying. Thanks.

Boy genius

Upon finding out I have a son with autism, the automatic, #1, most frequently asked question is, "So, what's his... thing?"
You know, everyone knows that people with autism either play piano like Billy Joel, or have photographic memories,  or can at least remember baseball stats like Rainman. Even though the Autism Research Institute estimates that only 10% of people with autism have savant abilities (compared to 1% of the rest of us), people always assume that since he has autism he's really a closet genius.
So I say, "Um, he likes cars."
It is true that restricted interests, such as obsessing over one specific toy, or movie, or topic, is one of the criteria for diagnosing autism. So even though he may not be a savant, the boy has mad skills when it comes to lining up cars. He's obsessed.
Lately, he's figured out how to take pictures with the iPad, and he has a new restricted interest: photography. (I think he must take after his cousin Kristen). He no longer wants to play the apps on the iPad, but instead I find myself deleting over 800 pictures a day that he has taken of his cars. (See, I told you he was obsessed).
So, typical mom here, I think this little photography obsession is pretty cute. And some of his pictures are really good! He would just go haywire if I had them blown up and hung on the wall in his room... I think I might.
So if he really is a photography savant, and someday his work starts appearing in famous museums and galleries, now you can say that you knew that famous photographer when he was just starting out.
A boy genius.

Best. Dad. Ever.

Yeah, I know Father's Day was over a week ago. Our lives have been thrown a little off balance lately (more on that later) and I just can't seem to shake the hamster-in-the-wheel feeling these days.

But I just couldn't let a day like Father's Day slip by without saying anything.

Because if I'm the hamster in the wheel, he's right there beside me. If I am falling apart, he picks me up. He is the number one reason I am still sane (even though sometimes he's the one driving me nuts). He makes being a part of our family so much fun.

Seriously, I can't imagine picking a better person to be the father of my children.

 

He is the first one to dig out the teacher's note from Waylon's back pack at the end of every day. He stays up late every night to pack Waylon's special lunch for school. He rearranges work schedules to make every IEP meeting and every doctor's appointment. I know I am bragging here, but what else can I say? He just rocks at being a dad.

 

Even though we thought we had the whole parenting thing figured out, when Waylon was diagnosed with autism we had to start all over. And we have learned so much more.

When I tell people "it was meant to be" I don't mean that God intended to give my son a life long struggle with autism. I mean that we have been blessed and our lives have been made whole through our journey with Waylon.

There is no person on this planet who could be a better father for Waylon.

It was meant to be.

 

Happy Father's Day, Trav.

 

We Worry

One of the first and most prominent slaps across the face I have received since Waylon was diagnosed was the day he was denied for a life insurance policy.
What? My son is healthy. He doesn't have cancer, or juvenile diabetes, or even asthma for pete's sake.
But he has autism.

We've always joked about our "wayward son". He is an escape artist at it's finest. Much like the orange slices in the gas station, there is no stopping him when he's made up his mind.
His ability to wander away unknowingly is just downright scary. To help us sleep at night we latch the deadbolts, set the door alarms, and dose him with melatonin. We used to have an enclosed bed for him- but alas, the escape artist could escape it. We have special bracelets with our phone numbers and we have a tracking device that can be safety pinned to his shirt if we are at a strange place. We keep the car doors locked in the summer, so he doesn't wander outside and get in a hot car. We keep the car doors unlocked in the winter, so if he were to escape on a cold night he could at least get inside a car. When we leave him with family we always remind them to lock their doors. We worry. Oh, do we worry.

A 2012 study by the American Academy of Pediatrics showed that Waylon is not alone. Nearly half of all kids with autism wander. Their website explains the study further:

Of parents whose children had eloped, 43 percent said the issue had prevented family members from getting a good night’s sleep, and 62 percent said their concerns had prevented family from attending or enjoying activities outside the home. For 56 percent of parents, elopement was one of the most stressful behaviors they had to cope with as caregivers of a child with ASD, and half said they received no guidance from anyone on preventing or addressing this behavior (American Academy of Pediatrics, 2012).

I'll admit it. Last summer, at a family reunion in Colorado, he escaped. Worst five minutes of my life. He was there, I swear he was right there beside me on a bench. And then, all of a sudden, he wasn't.
Although it felt like ages, I'm sure it was just a few minutes before I spotted him about 200 yards away, just trotting down the road giggling and flapping his arms, oblivious to the frantic yells or throbbing heartbeat of his Mom who was sprinting towards him. He had found his tracking device and pulled it off, annoyed by it's extra weight on his favorite sweater. He was headed toward Grandma and Grandpa's cabin, no doubt dreaming of the cookies she had shared earlier in the day. You see, he has no sense of worry, no understanding of danger.
But he has to understand, I thought. He has to know to never do this again. I was so busy trying to figure out how to get him to see how scared I was that I didn't pay attention to the bystanders gathering on their cabin porches, staring with astonishment at the lady who was screaming at a five year old who was laughing at her. Kids these days...
I couldn't even get him to look at my sobbing, grief-stricken face. He had no clue. He was hungry for cookies.

When I saw the first headline earlier this month, my heart sank. But by the time I saw the fourth this past week, my gut was wrenching. Mikaela Lynch was jumping on a trampoline in her backyard in California one minute and gone the next. Drew Howell spent his last moments on an Ohio camping trip with his family. Owen Black snuck away from his family during a beach vacation in Florida. And Freddie Williams slipped out of his home near Joplin, Missouri in just a t-shirt and underwear and wandered to a nearby pond. Four children with autism died last month alone from wandering and drowning. Four kids, just like Waylon. Four kids who loved to wander. Four kids who loved water. Four kids.

We worry, oh how we worry. We worry for these four families, whose lives are changed forever, and who will always relive those last few moments. We worry for those moments in our lives: the car door left unlocked, the deadbolt unlatched, turning my head for just one moment on that bench.
There was a river there, in Colorado. Waylon loves water. What kept him from wandering to it instead?
It could have happened to us.

Turns out, it happened to the parents of Jesus. He wandered off once. No doubt Mary was freaking out. I mean, God trusted her to raise His Son and she lost him. For three days. Although Waylon was only missing for a few minutes and not a few days, I can still relate to the grief on Mary's face when she found Jesus. Was she yelling at Him out of fear and relief? When He responded, "Why is it that you sought me?" was she searching for a way to help him understand? Were bystanders gathering on the temple steps to stare at Mary scolding a boy who was, no doubt, at ease with his escape? Kids these days...
But the brilliant, calm twelve year old Jesus
held the answer for his mother. In fact, He holds the answer for the mothers of all four of these children, now angels. "Did you not know that I must be in my Father's house?"

Please join with me in praying for these four families- for peace and strength, and comfort in knowing their children have escaped their burdensome cloaks of autism and are enjoying eternal peace with their heavenly Father.

Parents of children with autism: please check out http://awaare.org/ for lots of great tools and advice to prevent wandering accidents.
And if any of you would like to to help, consider checking out http://nationalautismassociation.org/big-red-safety-box/ where you can donate funds to provide door alarms, ID tags and bracelets, and educational information to families of children with autism.

Duck Duck Goose

I'm going to throw a big word at you today. Ready for it?
Reciprocity. Say it like this: res-ih-pross-ih-tee.
So the dictionary says reciprocity is a "mutual exchange". I say it's everything.
I mean, Newton's Law said that every action has an equal and opposite reaction, right? Everything you do causes someone or something to respond. That's reciprocity. And a lack of reciprocity is actually one of the criteria of an Autism diagnosis.

When someone looks at you in the eye, you look back (and probably say "Hi" unless you're a creeper). That's reciprocity. When someone says "I hate your guts" you'll probably get angry or upset. You might even cry. That's reciprocity. If you say "Hi" to Waylon, he can't say "Hi" back. But it's not like he can't actually say "Hi". It's like he's got nothing in the reciprocity department. You could say, "Say Hi, Waylon." And he would say, "Say Hi, Waylon." You could even say "I hate your guts, Waylon" and he would probably look at you and giggle and flap his arms. He would have no clue how to respond. It's just his lack of reciprocity. (Even though I'm not sure who would say that. Because I mean the kid is freaking gorgeous and awesome).
So mostly, when I say Waylon can't talk, I don't mean he can't actually say words. I mean he's got nothing in the reciprocity department. I could spend all day saying "Waylon, say I want fish sticks" and Waylon would say "Waylon, say I want fish sticks". He just can't reciprocate on his own. When I say, "Hey, Waylon, what do you want for lunch today?", he can't say, "Hey Mom, I want some fish sticks".
One of the most difficult things is watching a toddler initiate play with Waylon and seeing him completely ignore them like he has no clue what to do (even though he's twice their age). Because he honestly doesn't know what to do. When it comes to reciprocity, the boys got no skills.

So what's the gold standard for teaching reciprocity to preschoolers? Duck, Duck, Goose, of course. Waylon's been working on learning Duck, Duck, Goose since he was knee high to a grasshopper. And although he just graduated Kindergarten, I suspect that they were still spending quite a bit of time learning Duck, Duck, Goose.
Because guess what? He's finally getting it. For the first time, Waylon understands enough reciprocity to sit down and play a game with his brother and sister without being forced into it.
And he loves it.
It's the perfect game for Waylon, really. It's predictable, but it has just enough suspense. It's repetitious, but he knows he can take off running to get an extra giggle out of his brother and sister at any moment (and Mom and Dad too). It's the perfect way for Waylon to show us how much he loves to be with us.
It's reciprocity. And it's awesome.

See for yourself!

If the video doesn't appear, you can click here to see it on YouTube.