The Triduum and Rabbit Scat

Waylon spied the stash of hot wheels cars for his Easter basket earlier in the week. It's my fault, really. They were in the back of the van, and he can smell hot wheels cars almost as well as he can smell chocolate, so I should have known better.
We have a tall cabinet in our master bath that we use as a fallout shelter for anything that we don't want Waylon to smell- and consequently eat- at 3am. Cookies for the kids school program, a birthday cake for a party the next day, also my tampons, incidentally. Although this cabinet is safe from Waylon, it is not safe from me- occasionally the stars align, and there is a box of 12 Star Crunch Little Debbie's waiting for tomorrow night's T-ball game my PMS induced hunger pains.

On Holy Thursday the cars moved from the back of the van to the fallout shelter. The sweet boy who did not put words together until he was in elementary school said "Presents? No presents till Christmas!" approximately 10 million times in one hour. In Waylon language, this phrase is roughly translated as "I know you've hidden my cars. When in the &@$! are you going to give me them?" Not today, buddy.

On Good Friday, when I picked Waylon up from therapy, I made sure to let him know we were not going home, we were going to Uncle Chris's house. (Because you can't be springing new things on him unless you want to meet Satan.)
On cue, he said "No presents till Uncle Christmas house?" ("Am I getting the #$%* cars today?")
Not today, buddy.
So he said, "Not toDAYYYY, not toDAYYYY" approximately 10 million times during the car ride. (Waylon language translation: "This is taking FOR-EV-ERRR".)

Later that evening, we set out our baskets just in case the Easter Bunny decided to come early. (I had to work at the hospital on Easter Day.) When the Easter Bunny went to check the baskets early Saturday morning, she stepped in puke. I'll give you a hint: it wasn't actually the Easter Bunny. Someone had been up and eaten approximately 45 Reese's and barfed them right in front of my fireplace. Also, the runny poo in the bathroom carpet was not characteristic of rabbit scat.
Also, it smelled like poo, not Reese's. (I had to check.)

The Easter Bunny came on Holy Saturday. Waylon found his cars. We colored eggs. He mutilated his basket.

 

 

Travis took the "day off" while I took the kids to Grandma's to color eggs- and that evening when I brought up how exhausted I was from the day, Trav said "Don't start with me- you get to go to work tomorrow." Touché.

My mom (my Simon of Cyrene), offered to keep Waylon and Lucy at her house during Easter Vigil Mass so we could just sit (and kneel and stand and sit). Bless her.

So on Easter Sunday, I went to work at 6am with the joy of Jesus Christ in my bones because He is risen! and There was no poo or puke to clean up! And also because I was enjoying my first cup of coffee in 40 days.

On Easter night I came home to this:

 

R.I.P. Easter basket.

Those #$%! cars though.

I hope this Easter season brings new life into your homes, new joy into your hearts, and the ability to see peace and serenity amidst the chaos of everyday happenings.

And I hope the Easter Bunny didn't leave scat in your bathroom.

Happy Easter, friends!

Paleoanthropology and laughter (yes for real)

Hi friends. 

While working the hospital one fine day, one of the cutest old men you've ever seen wanted me to read a story in January's National Geographic. It was about Ella Al-Shamahi- a paleoanthropologist who also does stand-up comedy. Her paleoanthropology gig is nothing to laugh about- she digs fossils in the Middle East to research Neanderthal evolution. Whoa.

She said:

"Some places where I research are quite dark. It's incredible therapy to find the funny in it. The stage is an escape. There's an entertainment component, but it's also very selfish. You're escaping from the formalities of life and data. You can be ridiculous. People let you be ridiculous because the places you take them can be very fun."

Did you read that? Wow. I hadn't previously realized the similarities between paleoanthropology and my life. (Although Waylon is *kind of* a Neanderthal... He prefers to be naked, dirty, and he only eats red meat.)

I think I'd like comedy to be the next stage in the evolution of how we present special needs parenting. I've said it once, and I'll say it again- if you are facing a mountain in life, if you can find a way to laugh, you can surpass it.

For the 3rd year, I am proud to participate in an amazingly hilarious and therapeutic comedy show/fundraiser called Evening with the Rents. It supports a very special summer camp for kids with special needs- Camp Encourage. And, um, well, it's tomorrow. 

I've been rehearsing for months, my lines are (mostly) memorized, my outfit is picked out, and dress rehearsal is tonight. It's go time. I promise you we've put together three hours of hilariously therapeutic comedy- all I need is for you to join me. Also a good BM would be nice so I can feel skinny on stage. 

Are you struggling? (Who isn't, really?) Join me. We'll laugh through it.

rents.brownpapertickets.com

Groupies

I told Travis a month ago that we were going as a family to the Catholic School's Week kick-off concert at the kids' school. Last year, he gladly stayed home with the baby. But the concert was so good! How could I convince him to go? I said, "Travis- it's like AC/DC was at our children's school. You can't miss it again."

I just really really really wanted to be able to go somewhere as a family. Do you ever feel like that?

But still, just before we left the house, I got the usual- "Why don't I just stay home with Waylon and Lucy? You can go with the other kids and have a good time. It would be so much easier that way."

Easier? Yes. Most definitely. But heck to the no, I said. I just really really really want to be able to go to this as a family. Am I repeating myself?
We did all the prep work– "Waylon, we are going to the big kids' school. There will be music. It will be loud." We packed the headphones. The iPad. We drove separately, just in case.

Turns out, the kid loves live concerts.

Who knew?

Specimen A: 

I was pretty sure he would trip and crash into their set. Props to the Mikey Needleman Band for not stopping and asking the stimming/spinning dude down it front to take it down a notch.

Specimen B: 

He danced with his sister. And she danced back. In front of her friends. Her body language said, "Yeah, this is my brother with autism. Isn't he awesome?" Per usual, that girl amazed me with her unselfish love for others, especially Waylon. She owned it.

Parents of kids with autism: don't be afraid to try new things. Go places. For every five or 10 or 15 or 20 times your kid melts down in public and you are thoroughly embarrassed, there will be one time they far exceed your expectations. And your love tank will overflow.

We are groupies.

every mother's dream

It was his 9th birthday last week and the boy we thought would never talk couldn't stop saying "HAPpy BOOday, HAPpy BOOday". This year, the year he was eight, he learned how to say his name, ("Way-yun") and how old he is was ("Ett" No Waylon, you're nine now! "Ett". Agggghhh). He even learned his birthday ("Decembuh Tenny-Sedden"). And he was so excited for Christmas, walking around the tree every night repeating "Pesents? No pesents til Kissmus!" 

I used to freak out about his birthday. I hated the number increasing with lightspeed each year while his developmental age crept along at a snail's pace. "He's growing up too fast" I'd say, so cliche on the outside, but panicking on the inside. Time is running out! He has so much to learn! Where will he live? Who will take care of him?

I laid all these feelings out at a support group meeting a couple of months ago. Most of the parents said they share these feelings too, but for the sake of their sanity, they have put these worries to rest. Live in the moment, they said. Enjoy it.

So, while I will never truly stop worrying about and planning for Waylon's future, on his ninth birthday I decided to enjoy it. And we had so. much. fun. From the look on his face when the piñata burst to his bashful face when we sang Happy Birthday, I could see how lucky I really am- because I have every mother's dream. While my other children are "growing up too fast", Waylon is not. He's growing up perfectly.

I wanted to get him the life size plush Mickey Mouse I saw in a Black Friday ad. Travis said, "It's almost his 9th birthday. You're not buying him a Mickey Mouse."

He would've totally loved that Mickey Mouse, almost as much as I would've loved snuggling him with it. But I must admit-
I think I've loved teaching this big guy how to play Xbox even more. 

Summer is not for blogging

So many great things happened this summer. I wanted to tell you about them all. But here's the thing: Summer is not for blogging. So, now that it is November and I would like to move on to blogging about Fall and Thanksgiving and soon Christmas, and then HIS NINTH BIRTHDAY, I feel that I should first tell you about the things I learned this summer.

Trojan Elementary has the absolute best staff on the planet. (Ok I already knew this.) But then the principal GOT ON THE ROOF and threw candy to the kids on the last day of school. We hugged and took pictures and hugged and took pictures. These people had my son for three years, but will have my heart forever. 

Applied Behavioral Analysis makes my life... Hard. But good. Easier. But more complicated. I can't even describe it. But Applied Behavioral Analysis gives Waylon a life. These are his people. They get him. They work hard to make Waylon more successful at life. So many sacrifices go into getting this guy to Kids TLC every day, but his life is so much better for it. And the picture they sent me with the sleep mask on? DYING.

We can do anything you can do, better. We went to the zoo with cousins one day this summer- which could have been a real disaster. I had low expectations for a meltdown-free day. Escape routes were planned. Then I went bezerko when Waylon jumped in the train next to Caden instead of me and I had to sit two rows away. (WHAT IF HE FREAKS IN THE DARK TUNNEL?) Turns out, we can go to the zoo just like any other family and ride the train without going bezerko. Caden was totally stoked to sneak two rows away with his brother. These people are just the best kids ever, really. 

Siblings are life. This is also something I already knew. I mean I should be an expert on sibs, after all. My eight siblings {and eleven sibs-in-law} are the bomb-diggity. Any one of them would drop anything for us- in fact, they frequently do. They take Waylon to and from therapy, they keep an eye on him at family events, and they even cut his hair (which is no small feat). Funny, because I think I have ran to my room, slammed the door, and screamed into my pillow "I HATE YOU!" to each one of my siblings at least once in my life. So I know these kids don't come close to understanding how lucky they are to have each other. And I love watching their sibling-ship grow.

Growing up when you have a developmental disability is weird. Every new building is like the first day of preschool again. What if he misses me? What if he can't find the bathroom? What if they don't know he likes chocolate milk instead of white? It's harder to see, but it's really happening- he's growing up. On enrollment day this year, my little guy signed his own computer use agreement. No surfing dirty websites in 3rd grade, dude. 

I'm just not ready to let him go

Some people say autism is a gift. Some adults living with autism even say if there was a cure they wouldn't want it.

I don't understand. 

The fact is: My son, who was a beautifully bright-eyed, interactive, and happy one year old, was taken from me by a disease for which there is no cure, at age two.

Clinging to the "bargaining" stage of grief, we fought and fought and fought the battle. We bought silly expensive therapy videos online that promised our child would start talking within weeks. We invested in supplements that others had claimed "did wonders" for their autistic child. We drove him to a therapy center 90 miles away for early intervention that we knew would help him beat this before he even started school. We would've lassoed the moon if someone had promised it would take his autism away.

Like any disease, he experiences cycles: hints of promise followed by periods of regression. A severe regression last Spring caused him to be removed from school and placed back in a full time therapy program. Just weeks ago we were hopeful that his therapy hours could decrease and he could return to his class, but now the cycle is coming around again and the therapist has recommended an increase in hours instead. 

I'll admit it: I've been in denial. But it's becoming more and more clear to me now that this therapy is palliative. We are beyond early intervention, and although I always knew it was a long-shot, it is now clear that his prognosis for truly beating autism is poor.

Part of me says, "I give." Autism wins. 

But I'm just not ready to let him go. 

Autism is not a gift. Waylon is a gift.

And he is my hero. 

deodorant and feelings

I am not typically an overly emotional person. I am not one to lose my temper or to "cry over spilled milk" (unless it is milk that I have painstakingly extracted from my bosoms for the nourishment of my offspring– this I have been known to spill and shortly thereafter freak the heck out).

Anyways, one might think that I would handle it well when I sent Travis to pick up Waylon's hygiene supplies for school, and he came home with this:

WHAT THE WHAT

The school supply list said "deodorant" (which I already object to, because my sweet little mama's boy smells as delightful as the lavender Johnson & Johnson's that I still bathe him in) NOT DEGREE FOR MEN. Cripes.

I did not handle it well.

Perhaps Travis was caught in the crossfire of all the feelings I have been feeling these past few weeks. 

I have been feeling a little bit stressed over a rather large therapy bill from the summer, and I have been feeling a little pissed at the insurance company for not paying it. I have been feeling a bit confused about how to decipher CPT codes and EOBs, and I have been feeling a bit like screaming-bloody-murder at the poor little insurance customer service lady because insurance companies are stupid and life is hard and MY HUSBAND BOUGHT DEGREE FOR MEN FOR MY EIGHT YEAR OLD.

I have been feeling pretty nervous that the clock is ticking and he is eight and he hasn't miraculously recovered yet. I have been feeling a little sad that Waylon's class handbook said they will be working on life skills and participating in the Special Olympics this year- things that I should be feeling excited about, but am just not ready to swallow. I have been feeling hopeful about the boatloads of {hella expensive} progress he's made this summer. When I say, "What's your name?" and he says "Way-yun" I feel like jumping out of my pants with excitement. When I got the text from his new teacher with his first teacher/Waylon selfie of the school year (because he is the cutest {and apparently best smelling} kid in class, you know), I was feeling so so so proud. And when I was trying to post this freaking adorable picture on facebook but I couldn't because MY FACE WAS WET (see first line... "I am not typically an overly emotional person." LIE.) <--- see what I did there- It's a boldfaced lie. hehehe

I was feeling like melting into a big puddle of mom love. 

Did you really look at that picture? Look at it. These kids are so in love with each other. Gahhhhhhhh. Mom love.

When I clean up my wet face and shut up about the deodorant thing and really take a look at my life,

I feel like the luckiest mom on the whole entire planet.

Even though MY HUSBAND BOUGHT DEGREE FOR MEN FOR MY EIGHT YEAR OLD.

Cripes.