Birthday Hostility

December 27, 2006. Six years ago today, what I knew about autism could fit in a tea cup. It started with an A and ended in -utism. Wait... Did I even know how to spell it? Not sure.
Today, what I know about autism could fill a million tea cups. You should see the library of books I've read, and counted the hours I've spent searching the Internet for answers.
But what I know about Waylon? Next to nil.
Today, December 27, 2012, my boy turns six. And I want to scream at the blanks in the baby book that glare at me each time I get the courage to open it. 'My favorite color' or 'My first friend.'
Who is this kid who lives in my house? Where is he at? If he woke up one morning without this invisible cloak of autism, would he say, "Mom, not oatmeal again! You know I hate oatmeal!"?
I want to ask him who he wants on his birthday cake. I want to know if he likes grape or strawberry jelly. Recess or lunch. Chicken nuggets or a hamburger.

I wish instead of delivering a placenta minutes after Waylon, I would have delivered an instruction booklet. I think it would have said things like,
"Don't let Waylon eat anything red before you go out in public."
Or "Don't leave the toilet paper on the roll so he can spin it all out."
Or "Don't punch the lady who says, 'And how old are you, little man? Did you tell Santa what you want for Christmas?'"
Have you heard him squealing for the last hour, lady? He can't talk.
She just doesn't understand.
Or maybe it would say, "Start a blog so you can vent all your frustrations instead of taking them out on Waylon.
He just doesn't understand."

So here's the thing. I'm really not a negative person. I think my glass is generally half-full, but sometimes just barely. And unfortunately, Waylon's birthday is usually one of those days. Another year has gone by, the clock is ticking. I want to meet my son someday. And I want you to, too. He is a really cool person, I just know it.

Floor puzzle heaven. Proof that you don't have to be able to talk for Santa to know all your wishes.

This is a bunch of crap.

At this current moment in time, all I hope for Waylon is that he is able to have his own home someday, so I can go to his house, drop my pants, and lay a pile of crap on his carpet.

That is all I needed to say right now, thanks for letting me vent.
I need to go find the Lysol.

the naive one

Once upon a time, there was a couple with an amazingly cute, charming, well-behaved three-year-old, and a growing, losing-the-baby-look, busy, giggling one-year-old, and they said "Parenting is easy. Let's have another!"
And God smiled.
So they were blessed with the naive one.

The naive one does not know what autism is. She has a brother who is sometimes annoying, but she loves him so much. She gets in his face. She drags him around. She is bossy, and rude, and gives sloppy kisses. He is crazy and wild and splashes water in her face. She steals his cars, just to hear him scream. He screams, she stomps her feet, and they have an argument... without words.

And so he grows up in a neurotypical sandwich, worth more than all the therapy in the world.

The naive one has far passed him developmentally, but she doesn't know it yet. She think she's his mother, but then again, she thinks she is all of ours' mother. She has high expectations for him. He is her big brother, after all.

So yesterday, the naive one yells "I love you Mom!" twice. I say, "You just said that, silly girl." And she says, "I know, the second one was from Waylon. He's shy."

I've said it once, and I'll say it again. This is stuff you can't dream. And all year long, but especially this week, I am ever so grateful to the One who concocted this life of mine. God is so good.

Happy Thanksgiving to all of your families, from ours.

Among other things...Nutella is not to be eaten from the jar.

 

 

Shortly after the last post, which was a weekend of insomniac nutella fests and smashing light bulbs with mardi gras beads, I had the soul-cleansing pleasure of taking a mini roadtrip across southern Missouri on probably the most beautiful weekend of fall.

And it was just what the doctor ordered.

 

 

We took a wrong turn and wound up on a twisty, winding southern Missouri road with low water bridges and beautful views. I don't think it was a mistake. I definitely needed this refresher of God's wonders.

 

I think Waylon did too.

 

We turned a sharp curve and found this cute little nook in the middle of nowhere. Just cute as all get out, it was screaming at me to pull over and come in for a peek. But alas, I saw the invisible sign on the door that said, "No kids with autism allowed." So it will have to wait for a grown-ups only road trip someday.

 

 

A couple of weeks later, Travis and I were entranced by the words of a woman with autism who was unable to speak until she was four years old. Meeting Temple Grandin was amazing, and we came home with lots of new ideas to try, books to read, and most of all, hope.

PS- If you haven't seen the movie Temple Grandin, do it. Now.

 

 

Then it was Halloween, quite possibly Waylon's least favorite holiday. He hates costumes, only getting one piece out of a huge bowl of candy, and not getting to go in to explore every single house we stop at. Other than that, we had a great time.

 

And as always, Trav and I went on our monthly date. Because I don't care who you are, or if your kids are angels, you'll be a better parent if you find time in your busy schedule for yourself, and each other. Even if you watch one half of the worst NFL team in history sucking big monkey chunks, it's worth it.

 

 

 And among all these happenings this month, we're still working on understanding that although Nutella is delicious, it is not to be eaten straight from the jar. =(

Insomnia.

Waylon is a total insomniac.
It's nothing new, really- many studies have shown and many autism moms can attest to the magical hours between midnight and six A.M. when kids with autism are at their finest.

The real irony of it all is, at the end of the day, parents of kids with autism need sleep. Bad. And Waylon shows no mercy.

So, in the wee hours this morning when Waylon came running into our bedroom with Travis's most precious circa 1970's A-Team replica van that is cautiously hidden on the highest shelf of a rarely opened closet in the utility room.... I just smiled. Travis did not.

When we surveyed the damage in the kitchen, where Waylon annihilated half a jar of Nutella and a loaf of bread with a plastic fork... Travis just smiled. I did not.

It's these moments when I am so thankful to have such a great husband. We keep each other calm, we keep each other laughing, and we keep each other from duct taping him down at night.

If you're wondering where the "half a jar" of Nutella went- it went in his mouth, straight off the fork. Yeah, I think he's gonna need an extra dose of Melatonin tonight.

 

ohmygoodness

 



Look at this boy grow!

Remember last year's school pics?

I still don't think he's wearing any pants.

 

abso-stinking-lutely adorable

Do you think it would be inappropriate for me to hold an inservice with Waylon's teachers on the correct way to rinse poop out of underwear?

I am well aware that these amazingly patient, talented, kind-hearted and selfless people did not go to college to learn how to rinse out underwear.

That's why I would like to teach them myself.
It sure would make Waylon's backpack and my laundry room smell better.

It's about time...

Odds are, if you've ever read a media headline about autism, it has the word vaccine in it somewhere, or it is reporting the latest numbers of kids being diagnosed.
Well, frankly my friends, I don't give a crap.
It's too late for us now for the vaccine fight. Whether you are pro or con, we're up to date until junior high. And, I'm dearly sorry about the other 87, but I'm mostly concerned about what to do with my #1.
We walk for autism, we donate where we can, and for pete's sake we pay our taxes. I just don't understand, when so many dollars are raised and we have the most high-tech healthcare system in the world, why we can't come up with some answers.
Stop with the blessed vaccine argument. Stop with the incessantly depressing head counts. Throw me a bone here, researchers- I just want to figure out how to get my kid to talk.

Alright, so down from the pedestal with some good news. This article caught my eye this morning. FINALLY! Research that seems promising. Dollars being spent for a good cause. Sure, it's early in the studies, but maybe someday.... I'll shoot some meds up my kid's nose, and words will come out of his mouth. Maybe...

http://www.autismspeaks.org/science/science-news/researchers-launch-study-oxytocin-nasal-spray

And we're off...

Vacation planning:
Called resort to verify height of deadbolts and distance from cabin to river... Check.
Ordered a child tracking device... Check.
Packed plenty of trains, cars, the favorite blanket, and extra Melatonin... Check.
Washed and packed every pair of underwear Waylon owns (and may need to stop at Walmart for more, depending on how many times he craps his pants this week)... Check.

Highs in the 70's this week means Waylon won't look quite so odd in his most favorite outfit to wear- hooded sweatshirts and swimming trunks.

Stopped the car three times before we made it to Pomona, and finally, for the mental health of everyone in the vehicle, Waylon got his first ever mid-afternoon dose of Melatonin.

Hoping for a nice, relaxing vacation... and hoping that Waylon wakes up in a better mood!

Melts My Heart

Forgot to mention in my summer catch-up, probably the most exciting part of our summer so far. Waylon has started spontaneously saying our names.
AMAZING.
Anytime you walk in the room, anytime he wants your attention, anytime he thinks it will cause you to smile and tackle him and smother him with love, his eyes get big and he yells
"THERE'S MOMMY!"
Trav usually responds to the "THERE'S DADDY!" with "That's right! I'm Daddy!" So Waylon echoes, "THAT'S RIGHT! I'M DADDY!"
Sure, it's a little repetitious, but I'll take it.
I'll never forget sneaking my head around the corner of his room to hear the first time Miss Jennifer (a.k.a. Most-Amazing-Speech-Path-Ever) got Waylon to repeat sounds ("Ba Ba Ba"). I'll never forget calling Trav at work months later and putting it on speaker phone while Miss Jennifer coaxed the words "Mommy" and "Daddy" from Waylon's amazing little brain.
And I've written this new oh-so-amazing milestone in the baby book, although I doubt this is something that I will ever forget.
Just melts my heart.

I'd rather be blogging... Part 2

It's been ages since I've posted last. Sorry about that.
I've had such good intentions this summer. I've finished orientation at work, I took the summer off school, and Waylon is only in therapy two days a week now. I should be blogging up a storm, right?
It's just that I've been having way too much fun.

After a semi-stressful spring, where we
     a) Made Waylon's kindergarten plans
     b) Made Waylon's summer therapy plans
     c) Stressed for hours over a and b
     d) Enrolled Rose in pre-school
     e) Signed Caden up for coach-pitch
     f) Started a new job
     g) Started back to school
     h) etc, etc, etc.
I made an epic, life-altering, mind-blowing conclusion.
This is dumb.

I mean, sure, all the experts say kids with autism should have 40 hours of therapy per week. But who cares if they can talk or not if they don't even know which one of these people is their mother? And who cares if I get my Bachelors degree or not if I get committed to the State Hospital and lose my job anyways?
Life is too short.
So, we cut Waylon's hours back to just 2 days a week. We hired a rocking awesome teenager to come to the house and watch the kids while I'm at work. (Every kid should get to sleep in in the summer time, right?) And I took the summer off of school, so I could really enjoy my new job (which I love) and really enjoy my days off, without homework (which has been amazing). We got a plastic pool and a fire pit. We roasted hot dogs and s'mores and blew off fireworks. We are just having fun.
Which brings me to my next point. In approximately 18 hours we are heading on a family road trip/vacay. The house is a mess, nothing is packed, but-
I'd rather be blogging. (This seems to be a trend...)

I'd Rather Be Blogging

I have two papers due tomorrow for my BSN program. The time is now 12:28 AM.
(Yes, I know technically they are due today. But that is depressing and I will be sleeping between now and when they are due, so I say tomorrow.)
I have procrastinated in nearly every way possible. Two cups of coffee down, I am staring at the screen, searching for the motivation to write these silly papers, but... I'd rather be blogging.
So I decided to hash out a quick blog so I can clear up the last possible distraction before getting back to paper writing.

Well I thought there was no way possible that our lives could get more complicated than it was during nursing school. Clearly I was wrong.
When I came home with the brilliant plan to enroll in a BSN program, my dear sweet husband just nodded his head and agreed with every word, even though I could clearly see the encrypted message- "More school? Didn't we just get out of that mess?"
So much change and newness is around our house. We have decided to send Waylon to the Level-One Kindergarten classroom next year. Still struggling with a summer schedule for him, trying to get the insurance company to help us pay for part of it, and lining up drivers to get him back and forth.
Caden is headed to 2nd grade next year, and is pretty bummed that Waylon didn't get to come to kindergarten round-up at his school. I am too.
Rose is being sassy and funny and crazy and making us all laugh when we need it most.
Work is going splendidly. I seriously love being a nurse. Making new work friends, telling them about my beautiful family, trying to decide when to break the uncomfortable ice and explain autism to them.
I think I'll just wait for now.
Now, the time is 12:52 AM, and I have stuff to do. Like pouring one more cup of coffee and start writing papers like a mad woman. Wish me luck.

A Treat

Hey there.
So I know I promised more frequent posts. Turns out, that is not happening.
I really do have some fabulous blog posts floating around in my brain, it's just a matter of the computer understanding my thoughts and typing them out for me. I wish there was an app for that.
So, while there is no deep and meaningful message from me today, I thought I would offer you a little treat. When I am feeling sorry for myself, it never fails that the ladies over at Laughing Through Tears have an autism horror story that makes me laugh out loud, and feel much better about my day.
This particular post happens to be my favorite. So... enjoy! http://laughingthroughtears.com/2011/12/28/the-bottom-line/

Way Excited

Guess what? After 2 years of nursing school and months of resume writing and interviewing... I GOT A JOB! A really good one!!! I am so excited! I feel like jumping up and down and flapping my arms, sort of like this:

So you might have guessed, this is Waylon when he is way excited. (Watching Lightning McQueen makes him very happy!) Fancy people call it "stereotypic" behavior, but most people in the autism world call it "stimming," which is short for "stimulation." It looks weird, and sometimes funny (the teenage girls working in the video store used to giggle when Waylon was around 2, and he would stim like crazy when we were picking out movies.) Most of the time, people with autism stim when they feel anxious, or overwhelmed.

Now everyone stims a little here or there, like an annoying pen clicking habit, or biting your nails when you're nervous. It's just that people with autism do it on a bit more dramatic scale. When Waylon gets way excited he flaps his arms like crazy. And I know that it looks weird, but I think it is cute. Plus, since Waylon is unable to tell us how he is feeling, it's a way for him to show us his emotions. (I wish we would have recorded Waylon's reaction when he saw the ocean for the first time- he is crazy about water, and he was stimming so hard he about had a heart attack.)

If Waylon's ABA therapists knew I thought stimming was cute, they would probably die. Of course, their job is to work on his behaviors, and stimming is one of them. But I think it is cute anyways. I guess that's just the mom in me.

So anyways, all of the brilliant researchers in the world keep trying to come up with answers for why people with autism stim. And I figured it out as soon as I answered the phone yesterday. I don't even remember what the HR lady was saying, because my mind was spinning and flapping like crazy. I'm way excited.

Amazing Husband.

This is not your typical lovey-dovey facebook post saying how amazing my husband is because of the fabulous gift he bought me, or because he cleaned the house, or sent me flowers. (Yeah, right.)
This is a post to say my husband is amazing because he changes crappy pants.
I hate, despise, and just am sick-and-tired of washing out poopy pants. I'm sure he is too. But lately, when I see that awkward I-just-crapped-my-pants pose, I may glance in my husband's direction to see if there's a chance I could play it off. "What? He pooped his pants?..."
I am sure Travis knows my evil scheme. In fact I'm sure he has probably tried it on me too. You see, it's just a phase I'm going through. I'm sure I'll be back to my usual underwear rinsing self soon enough. In the mean time, I have an amazing husband.

Thinking out loud.

Alright I know I just posted about not fretting. But you know that that's really just not possible when you have a child with special needs. If I didn't fret a little here and there, I would never make any decisions.
So here is a snippet of me thinking out loud, mostly fretting.

Waylon turned five in December, and has been in Preschool since he turned three. He has also been in some sort of ABA program (autism therapy) since shortly after he turned three, and he has done great with this routine. But it's time for kindergarten.
Eeeeeeeeeeeeeeekkkk!
I know most moms freak out a bit about kindergarten, but I'm here on behalf of all moms of kids with special needs to say, I AM FREAKED OUT.
Waylon has bonded really well with his teachers, paras, tutors, speech pathologists, and occupational therapists. He has made huge progress. But you just can't keep a kid in preschool forever. I understand that. (Although I can envision an Elf scene where an adult Waylon er... Will Farrell is scrunched up with a bunch of little tykes around the mini preschool tables.)
Prior to our change of plans (I like calling Waylon's diagnosis that; I think I will continue) we were going to send all of our children to Catholic school. We both went to Catholic school as kids, and we send our oldest to Catholic school. My mom is his teacher, I am on the school council, and the whole place is like a second family. (Truth is, we are closely or distantly related to at least 1/4 of the kids there.)
There happens to be a contained classroom 30 minutes away, provided by the school district, where his current (phenomenal) speech pathologist also works (lessened separation anxiety). Some of the kids there are much more severe than Waylon, and some seem to be further ahead than Waylon. They spend the morning working on skills appropriate for their level, and the afternoon they go to first grade groups (P.E., computers, music) for social interaction. We have met the teacher and principal, observed in the classroom, and mulled over it in our heads for hours. It seems to be a wonderful place, staffed by 5-6 specially trained adults at a time.

Here's how it breaks down as I see it:
Contained Classroom: Well trained teacher/therapists/paras, working to help Waylon academically, in a classroom with other kids with special needs, 30 minutes away.

Typical classroom at the Catholic school: Teacher (Grandma), may not have a para, limited special education resources, and no specialized training, but lots of love in a "normal" classroom setting with his cousins and siblings and lots of people who love him to pieces and have a sincere desire to see Waylon learn and grow.

One last caveat: somehow we need to work in time to continue ABA (autism therapy). It's important, because unlike wherever we choose for kindergarten, they don't work on academics. They work on helping Waylon learn to interact with others, behave appropriately, and communicate.
But how do we go to full-day kindergarten and still find time for ABA?
Hmmmm....


FAQ's:

Q: What's the big deal about this contained classroom?
A: It wasn't in the plan. Still suffering from a little denial.

Q: How do we know Waylon won't do well in the typical classroom until we try?
A: Well the odds are highly stacked against us, not to mention, it takes months to evaluate Waylon, plan an IEP, implement it, and record results. All the meanwhile we are using his kindergarten year as a trial-run.

Q: Why can't you get a para in the Catholic school?
A: I think that is fishy also, I'm working on that one.

Q: Why can't you try the public school?
A: Public schools scare me. We love the catholic school because we want him to be a part of the big happy family there. And if that's not possible, what does a public school have to offer?

Q: Why can't you do half day kindergarten and half day ABA?
A: Well, which half of the kindergarten day should we cut- morning academics? Or afternoon social time? Both very important for Waylon.

I plan on uncovering every stone and exploring every route to find the perfect placement for next year. We'll keep hashing all of this out in our heads a thousand times a day; In the meantime, feel free to comment below with your thoughts.

I'm a planner.

I'm a planner.
Our calendar (which is busting at the seams, it seems) is checked every morning with the necessity of fresh underwear, and I live by a mini-itinerary each day (or else I would forget where to go). I have known since about age eight how many kids I was going to have, where I was going to live, and what kind of car I was going to drive. (Remember M.A.S.H.?)

That's what's really annoying about autism.
It wasn't in my plan.
Similar to the crap in his pants as we were walking out the door this morning.
As I bend over the toilet bowl rinsing out underwear, I mutter a little prayer "Lord help me to accept the things I cannot change..." No sense in fretting, right?
Occasionally people say, "He's five and he's not potty trained?" Yeah, I know. That wasn't part of my plan.

Here's what else is really annoying about autism: It makes it hard to plan.
Who is the mom who calls hotels to see how high their deadbolts are off the ground? Me. Who is the mom who knows the location of and can covertly maneuver past every claw machine in the tri-county area? Me. And who is the Mom who has learned wills and trusts to make sure her kids will be taken care of forever? Me.
You see, from deciding what we're having for supper to deciding how much to put in the 401k, it makes it really hard to plan.

Nobody gets the cookie-cutter life they imagined. I'm ok with that. And my kid isn't going through chemo treatments right now, which I am so unbelievably thankful for. 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.

Turns out, I am not in charge of my plan.

Playing Catch Up

So I realize I may have left some of you hanging. This blog is supposed to keep you updated on the happenings around here, and we've been through quite a little journey this fall/winter, none of which I have blogged about.
Waylon turned five a few weeks ago, and next year he is off to kindergarten, which seems so unreal.
We will be saying goodbye to the amazing preschool teachers and therapists we've had and diving into the scary world of kindergarten. I know it doesn't seem like such a big deal, but it is weighing on us more heavily than we thought it would.
You might have noticed my facebook post asking for prayers a while back (you probably did, judging by the fifty million phone calls and messages I got to make sure we were all ok). No one was dying- it was just the night before a rather stressful meeting with teachers, therapists, psychologists, and administrators from four different school districts, which I happened to be freaking out about. It seems a little silly now, because I'm really not the type to post sappiness on facebook, but those fifty million responses were just the reassurance I needed to get myself through that meeting the next day, and I appreciated each one of them.
And the meeting went great. I didn't even cry, which I was pretty stinking proud of myself for. (IEP meetings tend to get a tad emotional- if you've experienced one, you understand.)
And so far, we are just weighing all of our options, and making lots of phone calls and visiting lots of places to find out what is going to be the best fit for Waylon next year.

And as far as Waylon goes, he has been just absolutely great. Obviously, he is oblivious to the changes of next year. And for now, he is on this amazing streak of words. He is saying new ones all of the time, and even stringing them together. Of course, a lot of his spontaneous things are still just echoic responses- he knows when he hurts someone to say, "You okay?" and occasionally he'll run into a room and throw up his arms and say, "Ta-Da!" Just things he has heard and repeats, but it's cute as all get-out. And of course it melts my heart when I say "Love you" and he echos in his mumbly little voice, "Love you too."
As for me, most of you know, I graduated nursing school. I'd like to think that means blog entries will be coming out of the chute more frequently now, but I'm not willing to make any promises. It definitely means that I have more time to focus on the kids, and I have been able to be a bigger part of Waylon's daily schedule and working on his plans for next year, of course mixed in with a little job hunting.
And, I should add, we took this amazing vacation after Christmas to celebrate all we have accomplished this year. BUT that is a blog for another day...

A trip to Goodwill

Yesterday afternoon Rose and I found ourselves wandering Johnson County again, waiting for Waylon to be done at school. So we took a trip to Goodwill for a little bargain-shopping.
A few hours into our shopping experience, we decided to meander to the front of the store and get in line, so we could meander our way back to pick him up. A woman came in the store, following a boy who was pretty much running. He was bouncing up and down, eyes wide with excitement. (Obviously he was as excited about the Goodwill as I was.)
His mom (I'm assuming?) said "Wait" and he blurted out in his excited, but dysphasic voice "WAIT" and when she, in her mother-of-a-special-needs-kid way, herded him out of the way of others and said, "Come here, Ben," he blurted out an echo- "COME HERE, BEN."
Of course, I knew. In my mother-of-a-special-needs-kid way, I just knew.
First reaction- fascination. Second reaction- compassion.
I failed to mention that this "boy" was probably in his late teens, maybe even a young adult. I tried my darndest not to stare (I know what those daggers feel like) but immediately some fifty thousand thoughts flooded my mind, and I couldn't help it.
How old is he? How well does he function? Does he still live at home? Where does he go to school? What kind of therapies did they try? What worked? What didn't? I need to know!!!
When I realized I was probably staring, I realized what she saw in me at that moment, because I too, have had those thoughts- who do you think you are, with your cute little girl on a cute little shopping trip? You don't understand!
Oh, but I do understand, and I wanted nothing more than to run up and give that lady a big hug, and then bring her home with me and pour her a cup of coffee and sit and talk for hours.
But, obviously, she had a bit on her plate at that moment.
Perhaps too, years of those trips had given her the grace and strength to ignore those staring daggers. Perhaps she and her son were out for an enjoyable afternoon shopping trip. And perhaps they had a wonderful time.
I'm gonna hang on to that thought.
In the meantime, as I spend countless hours on the road to and from Waylon's therapies, I daydream and contemplate and pray, about where that fascination and compassion will lead me. I feel as though Waylon and this world of autism have given me some sort of a greater purpose- but I have yet to figure it out.
I'll keep you updated.