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.

My own little SIB

I am a pretty honest person. And I really like to share and spread awareness about autism, and what it means for us. But there are certain things that people don't want to hear about. Enter self injurious behaviors. Or, in the autism world, SIB. 

There's really nothing cute about a kid beating the snot out of himself. It's disturbing, really.

According to this fancy article in Psychology Research and Behavior Management 

"Researchers looking at lifetime prevalence in those with autism spectrum disorders suggest that approximately 50% engage in some form of SIB".

Well we've done about everything under the sun over the past year to make this stop, and now Waylon is on a new medication and in a pretty intense therapy program to try to get this under control. The therapists review data daily to help them understand when/how/why the SIB is occurring- sometimes for attention, sometimes when he is mad or stressed. With time, I am hopeful that he will be able to overcome this. 

Yesterday on my way home from work, I needed to stop at the grocery store for a gallon of milk. And as usual, I just couldn't resist grabbing that one dollar bag of amazingly delicious barbecue potato chips smothered in entirely too much sodium. And then I ate the whole bag on my way home.

Well guess what- there's nothing really cute about a grown woman eating an entire bag of potato chips in her car. It's disturbing, really.

I've decided to collect some data to help me understand when/how/why I feel the need to eat an entire bag of potato chips. Is it the flavor? Price? My lack of will power? Level of stress?

With time, I am hopeful that I can overcome this.

My own hypothesis: Researchers looking at lifetime prevalence in those who parent children with autism spectrum disorders suggest that approximately 50% engage in some form of stress eating.

My own little SIB.

I'm imperfect.

I'm imperfect. 

There. I said it.

I'm totally guilty of flooding facebook and instagram with pictures of my kids {because they are really, really cute} but with the pile of laundry cropped out, and a filter that makes my carpet look Valencia, not Vomit.

But I also like to keep it real. Therefore, I think you should know that the ABA therapist says talking to Waylon in a calm voice will get the best results, but I yelled a lot this morning. I know it's not going to "get the best results", but I'd had it.

And I said it was going to be ok if Waylon didn't make his First Communion with the other kids his age, but then I bawled like a baby all the way home from the First Communion Mass.

Guess what? I'm imperfect.
Sometimes you've got to take your tiara off, Princess, and scrub that vomit up out of your carpet when your hubs is out getting crazay at a bachelor party (and by crazay I mean fishing and throwing horseshoes) and you don't want the house to smell like curdled milk all weekend. Sometimes you've got to count backwards from ten and put a smile on your face and put a shirt on your kid for the sixteen thousandth time in ten minutes, and then sing Kumbaya while you hold that shirt on like a straight jacket the whole way to the minivan. And sometimes you've got to swallow your pride and say "God loves Waylon just the way he is. First Communion or not. And I didn't have to buy an overpriced suit and rosary this year. Boo-yah."

Accepting imperfection can be a challenge. But I think this is something that might be a little easier for moms of kids with special needs. It's like we don't really have a choice: Junior only wears camo swimming trunks right now, so the family photo is going to be mismatching this year. OR, it took us twenty minutes to get from the garage door to the carseat, so we're going to miss the readings at Mass. (Um, this happens to us EVERY SINGLE WEEK. Probably more of a sin than an imperfection).

So moms, special needs or not, I'm asking a favor- DON'T GET ATE UP WITH PERFECTION. Just try to not be so hard on yourself for a while. I think you'll eventually find that it's okay for your family photos to be mismatched. And it's okay to lose your patience every now and then. And it's okay to have gross carpets. Because that's life.
Can you live your life with #nofilter?

And you know what? If you choose your battles wisely, you can stop worrying about your carpets, and start worrying about having enough time to play with all the kids before bedtime.
And that's the kind of life that's perfect.

......................................................................................
Last week Waylon's therapist called to let me know he was pooping turquoise. Dead serious.
"There were blue cupcakes at the support group meeting last night," I said without hesitation, "and we let him have three. Oops."
His response- "Good!  I was betting Play Dough. Cupcakes are way better."

......................................................................................

 Disclaimer: This idea of living life with #nofilter is strictly metaphorical. There is no way that I am in a position to begin detoxing myself of instagram filters. Either I hire a carpet cleaning man (who would have a coronary when he walked in) or I continue to Valencia the crap right out of my photos.
Kapeesh?